The Simple Bees

A Rough Time...

2012-02-12T19:17:00.000-08:00

This weekend, the determined me went looking through our medical records and replaying every conversation in my head with the various medical professionals we came in contact with.

I remembered several doctors asking us if Xander had ever been tested for cystic fibrosis.

I remembered trying to complete the sweat chloride test for Xander and twice him not sweating enough.

I remembered the ER doc at DuPont asking us about cystic fibrosis testing.

I remembered two residents asking us about cystic fibrosis testing.

And our family doctor perking up when we mentioned we did cystic fibrosis testing and the letdown on his face when we told him he didn't sweat enough.

And then I went through the screening questions from the gastroenterologist at DuPont and realized a lot of those were searching for... cystic fibrosis symptoms.

So.. I did it. I looked up cystic fibrosis.

And then I broke down into uncontrollable tears and shut myself in our bedroom and cried facedown into a pillow.

I looked up the odds of a biracial child having cystic fibrosis and didn't find much encouragement. I looked up if the fact that he didn't sweat enough would rule it out for us, and unfortunately it does not. I tried to comfort myself with the fact that he doesn't have frequent bronchitis and pneumonia, but then he does frequently have colds. Then I read that respiratory illnesses and/or gastro symptoms are usually common.

Other symptoms that Xander has that are also found in cystic fibrosis patients include:

Vitamin deficiency- Xander is low in Vitamin D.

GI symptoms- Diarrhea, large/frequent stools, mucus in stools, constipation, bloating

Slow/No growth- usually despite eating large amounts... which he was before we put Xander on elemental formula per the allergist.

I also found that while the sweat chloride test is considered the "gold standard" in diagnosis, some doctors will do genetic tests if there are issues with the sweat chloride results (like not sweating enough.)

And then panic set in. I know it was premature, but this is my blog, where I share my innermost thoughts. The day I can't be real on my blog, is the day I shut it down.

I tried to act like I had it altogether when Brandon called home from work. But he knew something was up within seconds of me answering the call. So I spilled the beans.

No mother HOPES for cystic fibrosis. I certainly am not. I *DO* want to know how to best help Xander, but I do not want it to be cystic fibrosis.

Tomorrow, I will contact the geneticist at DuPont to see if Xander is already being tested for cystic fibrosis. She only seemed interested in Xander's "atypical birthmarks" and admitted she may not ever find us an answer for that. In fact, she told us that she wasn't even going to touch his gastro issues.

If she isn't running it, I will phone our family doc and see what he thinks.

At least if he tests negative, we can officially rule it out. Right now we have two tests that were run that have no results! Two question marks.

I've been reminded by a sweet friend, that *we* are Xander's best advocate. Sometimes that seems overwhelming. It is an awesome amount of responsibility. But if we won't do it who will?

Today, I felt overwhelmed. I wanted to pull the covers over my head. This evening, I had the opportunity to chat with a friend. She reminded me that God already knows what Xander has or doesn't have. NOTHING changed with God when I read the information about cystic fibrosis last night. He is still my rock. When a day at a time seems to be too much, I'll break it into hours, minutes, seconds and that God will help me. He hasn't left me! He loves me and Xander.

And another day comes to a close. Tonight I'll lie in bed and count my blessings, taking slow, deep breaths hoping for the best. But no matter what, we ARE going to make it through all of this...with God's help!

~Stephanie

More Fingerprints...

2012-02-10T14:25:00.000-08:00

Brandon and I are just in awe as we watch our family. The task of raising four (soon to be five!) little blessings really feels like too much for two people to do alone-- but we have God's help and He is so good to us!

His provision is great and it always has been. The more we trust and walk this road, the more He shows Himself to us in little and BIG things.

Here are just a few of the ways that He has shown Himself through our most recent trials.

1. Our family doctor was just speechless when we went in for our last weight check. He said he was embarrassed by the way that various medical professionals have treated us. When I left, I left with his business card in tucked away in my wallet, with his cell phone number written on the back. Now, we've been through a lot of doctors with insurance changes and moving and I have never received a doctor's cell phone number, ever. He trusts us to use it responsibly and we will. But if we are ever in a pinch again... we have it. Our doctor has also told us if we call to get an appointment for Xander and we are told he is booked, to call his voicemail and leave a message. He wants Xander to have continuity of care and prefers that he is the one to see him all the time, rather than his partners. (Not that there is anything wrong with his partners, but Xander's case is a bit complicated.)

2. Our church has been amazing to us. I do not find it a coincidence that we floundered searching for a church home for so long after moving here, yet all this unfolded as soon as we were settled in our church. Cool Spring's people are amazing. They have really stepped up and gone above and beyond anything we could have imagined. Prayers, dinners, hospital visits, phone calls, surprises, really... we are so blessed. I'm often moved to tears when I think about it, and ask God to let them reap far more than they have sown into us.

3. Due to the way things played out, my Auntie Karon was here for Lainey's birthday this year. Last year, she was able to either meet up with us or be here for Julianne's and Xander's birthdays. And she was here shortly after Solomon was born. But this year, Lainey had her Auntie Karon in attendance and she was so excited!

4. Due to Xander's medicines all needing compounded, we have met the most amazing pharmacist. We had to go to the little pharmacy in our little town to have Xander's prescriptions compounded, but the pharmacist read the prescriptions and stopped to ask me "What is going on with little Xander?" I explained the saga, and he was very encouraging and helpful. As I waited for the prescriptions, I got to see him interact with other customers and he was just as kind to each of them. Now, I'll drive out of my way to get to that pharmacy.

5. Xander is coming around. Slow but steady wins the race! It is exciting to watch his personality come back along with his willingness to eat a wider variety of foods. We still aren't at the goal, but we are making progress. His diapers are much better than they have ever been before, even though he has lots (!!!) of dirty diapers each day. Still, I'm clinging to the progress. We've come so far, Baby!

6. Our adoption worker from Xander's adoption agency has really stood by our side. She is always so amazed at the lengths we are willing to go to care for our children. Anyway, we were approached about an adoption situation and before anyone has a heart attack, we let her know that right now the timing just isn't right. We also let her know what was going on with Xander, and she was very compassionate and looked back through the file to see if she had any kind of medical clues for us to help. She also said that if we ever really, really needed to have some additional questions answered by his birthmom that she would be willing to facilitate that for us. She is a Believer and is praying very hard for our son. Xander captured her heart when he was born and he still has a grip on it. She literally dances in the lobby when I stop by with pictures of Xander but her favorite times for us to stop by are when we walk in with him. She just adores him. She isn't in the adoption field for the money, it is truly her calling. <3 her!

We do have a new prayer request though. We have to call around to various labs and attempt to find a lab that does a certain test for Cdiff. It is more sensitive than the test that was done at St. Mary's. If we can have this one test done, it will be so much more accurate for us. If we cannot find someone that does this test (closer than driving back to DuPont to drop off a dirty diaper!) then we have to do the other test, which requires three samples and still is not as sensitive.

Please pray we find someone to do the sensitive test. I have orders for both, just in case, but it would really set me at ease to see the results from the sensitive test. This will be my task on Monday so we have a few days to pray! (He can be tested from Tuesday to Friday next week.)

Father, You still amaze me! The way that You take care of the details, before we even know what we need continues to amaze us. We love You and are so blessed to have the opportunity to raise FIVE children to know and love You. Your fingerprints are so evident in our lives. Continue to keep our eyes open, especially when things get tough, so that we can see Your presence! Love You and praise You, Amen!

~Stephanie

Some Theories but not Any Real Answers... Yet!

2012-02-07T07:33:00.000-08:00

Sorry I'm just getting around to posting this! Last night, we came home and turned into ooze as soon as we sat on the couch.

So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.

He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)

First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.

The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.

The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.

I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.

So what's the plan?

First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.

If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.

With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.

We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.

Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.

Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.

She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.

All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.

Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.

~Stephanie

Bee #5

2012-02-05T14:54:00.000-08:00

All was well at my appointment on Friday! Baby was very active and measuring larger than my dates. This is normal for me. My babies seem to grow ahead in the beginning, then slow down a bit at the end right before they come early. God knits babies perfectly.

My blood pressure was a bit elevated compared to my normal. It was still within normal range. I usually run a bit low and correct that with increased salt intake so I don't feel so weak. My OB is aware of the issues we are going through and will monitor my care.

I was excited to make plans with our doctor for the pregnancy. We are planning another VBAC and I went ahead and signed the papers acknowledging the "risks." My doctor laughed as I told him that a csection came with risks and so did walking in the parking lot to get to my van.

We will be doing one thing a little differently this pregnancy. I will be skipping the 1 hour gestational diabetes test this pregnancy. I always barely fail it and end up taking the 3 hour test. But I really despise drinking the nasty syrup so my doctor will allow me to skip the 1 hour (that I always fail anyway) and go straight to the 3 hour.

We were so relieved!

~Stephanie

Always, Forever and No Matter What

2012-02-02T14:53:00.000-08:00

Today has been tedious.

We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!

Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.

We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.

Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.

Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.

He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?

It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.

I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.

The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.

I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.

Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!

Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.

While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.

I love each of them and I tell them several times a day. I love them, always, forever and no matter what.

~Stephanie

Raw Emotions...

2012-01-31T17:08:00.001-08:00

I'm struggling.. a lot.

I feel like I'm a bundle of raw emotion. Fear, frustration, anger, impatience all swirl around inside of me each and every day.

Many of you have read on Facebook that we are at home, again.

No, Xander is not better eating wise. In fact, a reasonable argument could be made that he is actually in a worse condition than before.

We are continuing his antibiotic for the C.diff. He is still only drinking pedialyte and will only eat applesauce, rice and bananas with an occasional pretzel or saltine cracker. This is the same thing he ate for days in the hospital. And somehow this is considered a plan.

I'm not happy that we lost ALL the foods he would eat during this last hospital stay.
I'm not happy that this is considered suitable to the attending to come home eating only these things.
I'm not happy that our gastroenterology consult never took place while we were inpatient.
I'm not happy that my conversation with the nutritionist ended today with her sighing and saying "Perhaps we will have to just do a nasal gastric tube."

I want to scream loudly that I don't want another bandaid. I want my baby to be better. I want the ROOT of the issue to be found. I want him to have normalcy and be able to eat whatever his little heart desires.

And I don't have any of that.

Only one expectation that was set for our stay at DuPont was met. He was treated for C. Diff.

We never met with the complex cases team. Yesterday when we left we were told that appointment would be Monday after gastro. Today we were told it is in March.

This coming Monday, we are returning to DuPont hesitatingly to see the gastro department and then nutrition. I fasted during breakfast and lunch today, praying for God to help me. Somehow I have to muster the strength to deal with people that have left us in a worse situation than before food-wise and people that refused to see us as inpatients.

Lord, give me tact and supernatural ability to deal with this on Monday.

Please pray.

~Stephanie

Q and A #1

2012-01-29T05:27:00.000-08:00

How is Xander handling the hospital stay (laying in bed all day) and all of the pokes and prods? I imagine its hard for him to understand why this is happening...

Interestingly, he isn't laying in bed all day and isn't expected to. He is not allowed to leave his room, but if he wasn't contagious he could leave his room and go to the Child Life room where there are toys and activities for the children.

Xander spends most of his day snuggled in the recliner with either Brandon or I watching TV. He has been brought some toys by the Child Life Department, so he plays too.

He's not been poked since he was in the ER. They drew blood there and put in a heplock in case he needed an IV, but we lost that line on Monday afternoon. So far, we have been blessed to keep him hydrated enough with sprite and pedialyte although there have been moments that it looked like we were headed down the IV road.

The prodding he takes like a champ. The one thing he hates is having his temperature taken under his arm. He willingly allows them to take his blood pressure, listen to his heart, chest and belly sounds and even feel his tummy. How long he tolerates them pressing on his tummy is dependent on how distended his tummy is, of course.

The staff here is fabulous and understand that he is a child, not a tiny adult. For instance, when he was triaged in the ER, the nurse did the entire exam with Brandon standing and holding Xander. Many exams have taken place in our arms, or snuggled in the recliner.

Why didn't you guys go to DC National? It would have been a closer commute for Brandon.

Honestly, we hadn't heard much about DC National. I'm sure lots of people have had a positive experience there, but we also wondered if it was "too close" and if they would just consult the gastro that refused to treat our son. So instead we are 3.5 hours away from home at DuPont.

How did you choose DuPont?

It was the next closest Children's Hospital to us. I also have two friends that highly recommended it, as they have come here with their children. CHOP (Children's Hospital of Philadelphia) is about 30 minutes further than here.

Why didn't you go back to Augusta? Your children are there.

They are there, and they are being well cared for. But it is also 8+ hours from home, and Brandon wouldn't have the ability to go back and forth between work and the hospital. Also, we were concerned we couldn't make it all the way there, in the condition that Xander was in on Thursday night.

How long do you expect to be in the hospital?

No one can answer that yet. Xander is already showing improvement from the cdiff. But, as that clears up, we are going to attempt to address his chronic diarrhea and lack of growth. At the very least we need him to be eating a better diet than what he currently is willing to eat. For example: His current diet is terribly deficient in a variety of vitamins and protein. He is also very low in Vitamin D, so that will need addressed.

Are all of his issues due to the Cdiff? / Great! Now you finally have an answer!

No, all of his issues are not attributed to the Cdiff. Our doctor's best guess is that Cdiff has only been an issue since this past Wednesday and does nothing to explain his lack of growth since June, the chronic diarrhea, food reactions or the previous weight loss so we only have an answer for the acute issues, not the chronic ones.

Did he get Cdiff because of antibiotic use?

Not likely. He's only had antibiotics twice in his life. Once when he was a very small baby due to an ear infection. And again this past October for fluid in his ears. Most of the time we don't use antibiotics for fluid (our doctor's preference), but we were headed out of town for vacation and after we didn't see improvement we went ahead and got the antibiotic called in. According to Dr. Swami, if the antibiotics caused the cdiff, then it should have showed up within 3 weeks. This can be caused by overuse of antibiotics though this doesn't seem to be the cause for Xander.

Instead, our doctor has told us that some people naturally carry Cdiff in their GI tract. Everyone has good and bad bacteria in their GI tract. He thinks that because his GI system was so out of whack, it provided an opportunity for the bad bacteria (cdiff) to take over. In the case of antibiotic use causing Cdiff, the antibiotics kill off the good bacteria, allowing the cdiff bacteria to take over.

Of course, Cdiff is also highly contagious, so there is a possibility that he was infected at the previous hospital. We will most likely not know.

Why are you seeing genetics? I thought this was a gastro issue.

We were originally scheduled to see genetics in Richmond to follow up on the neurofibromatosis work up. We missed that appointment because we were in the hospital. But when the emergency room doctor here heard the whole history, she wondered if maybe, just maybe, a genetic issue or syndrome can tie all of his issues neatly in a bow. The issues include: vitamin D shortage, the diarrhea, the lack of growth heightwise, the losing weight/not gaining, the high TSH, the birthmarks, the fact that he rarely has tears and doesn't seem to sweat at all. He also had a small blood vessel anomaly mentioned in his MRI radiology report and has a small mass in his stomach. She just thought there are too many things "off" and they seem to be spread over several of his systems. She is curious if they are all related.

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I have one more thing I'd like to address. It has been hinted around by various people that this is a downfall of adoption. That we didn't know what we were getting into. Or if we would have known, perhaps we wouldn't have matched with him.

Brandon and I have learned that even with biological children, you have no idea what you are getting into, even healthwise. Our girls have their orthopedic issues. Julianne had respiratory issues as a baby. Health is NOT guaranteed even for biological children.

Even if we knew about Xander's issues beforehand, it wouldn't have made a difference. If you recall, we adopted him knowing that his birth circumstances were less than ideal. We knew that his birthmom's health history was questionable. Also, we thoroughly understood Annalise's issues and we were willing to make that walk as well.

Adopting Xander was NOT a mistake. We have ZERO regrets and we can't imagine our lives without this little guy. He has taught us so much and I can't wait to see what other lessons we will learn through raising him and watching him grow.

Nothing makes me turn into a ferocious mama bear quicker, than to suggest that adopting Xander was a mistake, or using this as a case against adoption. Adoption is beautiful and we are so blessed to have Xander in our lives. We can't imagine our lives without him. We committed to him in April of 2009 and that commitment stands. I will always be his mama, always love him and always fight for him in every way I can. Nothing can change that... ever.

~Stephanie

Settling In ....

2012-01-28T09:53:00.000-08:00

This morning is the first morning that I felt like things are settling in. Last night Brandon and I squeezed onto a twin sized fold up bed and snuggled all night. It was the first night we've slept together at the same time and it felt amazing. Xander slept through the night peacefully as well.

It was sad saying "See ya later" to Brandon (I have a thing against Goodbyes) and for a little while after he left I felt like I was going to burst into tears at any moment. But I had little Xander to keep me busy.

This morning Xander fought hard to be perky. It wasn't his true perky self but you can tell that he wants to feel better so badly! He ate breakfast and then we snuggled and watched some movies (Toy Story 3 and Shrek.)

True to his hospital routine he fell asleep about 11:30. Dr. Swami came by right after Xander fell asleep and we discussed his progress. Some Cdiff is Flagyl resistant but since he is starting to show an improvement, Dr. Swami doesn't think we will have any issues with that.

After I spoke with Dr. Swami, I used naptime to take the opportunity to go down to the cafeteria. I've gained a sense of direction here.. FINALLY! Yesterday I was so overwhelmed with coming to the floor that I couldn't remember how to go to get to anything.

Xander's nap didn't last long though and he was very irritable for the rest of the afternoon. For lunch he would only eat saltine crackers and drink sprite.

We had a nutrition consult and she was rather stumped after listening to Xander's history. Right now we can't do much because the cdiff has muddied the waters so much. For now we are letting him eat what he wants (within reason) using small frequent meals. We are avoiding milk, soy and eggs again. Dr. Swami thinks that his tummy was so distended at admittance because of the eggs and pancakes he had the breakfast before (at the old hospital.) We are going to try to see if he will take Elecare Junior Vanilla. I'm not very hopeful but I'm willing to try! She said Elecare Jr. Vanilla is the best tasting one so we will start there tomorrow. He will still be on table foods but she is hoping to increase his caloric intake and get him some better rounded nutrition.

The nutritionist also spoke with me about a diagnostic complex issue team that she thinks we should see. Apparently, they are a group of doctors that are very good about taking strange pieces and figuring out the puzzle. We were originally supposed to be with that team, but they had a high number of patients the day that we were assigned our group so they chose Dr. Swami since he does infectious diseases and cdiff is one. The nutritionist was pleased that we are having a genetics consult on Monday. She said we will get back together and make a plan once cdiff gets better.

For dinner, Xander ate plain white rice. Then I gave him a bath and a massage with lavender lotion. I put him into a fresh gown and shortly after he fell asleep in my arms.

Another day down and we are headed in the right direction.

Thank you, Lord!

~Stephanie

PS: I'm planning on doing a question/answer post in the next few days. If you have a question, feel free to ask.

Following Your Gut...

2012-01-27T19:08:00.001-08:00

We got to our room about 10:30 this morning and things were a bit slow to get rolling. We, once again, lost Xander's iv line. Errr... but for now he is doing okay without it so they don't want to put it in. (It was a line that they used for blood work this morning, that they heplocked in case they needed it later, instead of re-sticking him.)

The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.

About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.

He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.

Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.

Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.

His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.

I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.

I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!

Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.

Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.

We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.

I'm off to snuggle with Brandon before he heads back to Virginia.

~Stephanie

Discharged and Admitted...

2012-01-27T11:01:00.000-08:00

We were discharged from the hospital in Richmond last night. The first paper I was asked to sign said that everything was resolved. I refused to sign that.

So they discharged him with a paper saying that he still has failure to thrive, diarrhea and dehydration. We asked for a transfer to a Children's Hospital outside of Richmond. We were told the only place they could transfer us to would be UVA. UVA is a teaching hospital that is not a pediatric specialty facility. It is one hour away. Our requests to be transfer to a pediatric specialty hospital were denied.

I was flabbergasted.

Xander was obviously still in great discomfort and his diarrhea had begun again. Brandon and I prayed and decided to drive to Wilmington, Delaware to have Xander seen by DuPont Children's. We handcarried all the records we had and his adoption paperwork.

The triage nurse just couldn't believe what we'd been through. We got a room within an hour and the nurse took all my papers and made copies. She took a thorough medical history and examined Xander thoroughly.

Shortly after the ER doc came in puzzled. We explained our frustration, the inconsistencies in the records we had, and how he was still in pain. Xander was barely drinking pedialyte and his stomach was very, very distended. He also continued having very smelly wet burps.

We did a belly xray and we were told that it was abnormal. He was very full of something. Guesses were food and stool and his stomach was enlarged greatly.

Some of the lab results we carried here were just wonky.

We were told we were being admitted to regular peds and that a team that does hard cases would try to put together all of our pieces and we would consult with the specialties.

And then a stool sample came back positive for C. Diff and blood. So we are now on the gastro unit in an isolation room. Xander is not permitted to leave the room and everyone that comes in puts on gowns, gloves and a mask.

Everyone here has been amazingly gentle and kind to us. The nurse that told us about the C. Diff says that her gut says there is more going on than just that but that we have to start to peel back the layers of the onion.

We are obviously greatly disturbed by this news. We are struggling greatly with disbelief, anger and sadness but at the same time feel relief that we are finally where someone will help us.

Thank you for your prayers. We feel like prayers and God's goodness have gotten us here.

~Stephanie

Dr. W...

2012-01-26T08:25:00.000-08:00

Last night, I had to raise a ruckus about our lack of care. The medical director (over the attending doctors which are all pediatricians) had been in to see me, and saw the diarrhea diapers. She saw them test positive for blood with her own eyes. She had been on the phone every day this week with the gastro doctor that is "on call" here.

And yet, yesterday, he refused to see us. He sent a message through the attending that we could follow up with him outpatient. I thought that was ridiculous and told everyone we had contact with how ridiculous I thought it was.

I called the number on the medical director's card and was told she would be returning to the hospital to speak with us. Her secretary immediately came upstairs to wait with us.

The medical director was apologetic when she arrived, but said that part of what we are facing is the "limitation of Richmond." This one gastro practice covers all the hospitals here, so even if we were in another local hospital, we'd get the same gastro. And since he was on call there was really no way to reach anyone else.

She said she could call a colleague at UVA but that it would be a phone consult because they do not have privileges here. So there would be no examination of Xander. I told her that was ridiculous.

She said there was a small possibility she could call in a favor and speak with another doctor from the same practice but that he was not on call so he of course has the option of not coming.

I told her that this whole thing was insane. I had a child vomiting, with diarrhea that tested positive for blood and he had dramatically decreased what he was eating and even drinking. I told her if no one could help us here, that we expected a transfer to a major pediatric medical facility outside of Richmond. (Richmond does have a Children's hospital but again, we'd get the same doctor.)

She ended up calling Dr. W and asking for a favor. He said he would be here this morning because he had a lecture here this morning and he would see us afterwards. We were satisfied with that solution.

The patient advocate was the next person in our room, and we let her know how the first doctor had treated us. We filed a formal complaint that will be evaluated by their quality team and their medical team. I also let her know that I fully intend to file a complaint with the medical board and our insurance. Her eyes were bulging out when I told her everything we'd been through here.

This morning, Dr. W arrived and took a full medical history for Xander. He examined him thoroughly. He asked a ton of questions that we answered willingly. He doesn't have any answers yet and he apologized profusely for that. But he is willing to try to find help for us.

He has removed ALL the dietary restrictions because he does NOT feel any of this is allergic in nature. When Xander was first admitted he was on a regular diet minus eggs, soy and milk. Then with the vomiting and diarrhea he was moved to a bland diet. ALL of those restrictions have been removed. Brandon and I are concerned about this, but willing to try. Dr. W thinks that we may have just had a coincidence with those foods. If things go badly, we can rehydrate Xander here.

Dr. W. is going to look back through the records and the history we gave him and see if he can come up with something. Brandon and I feel heard again. The second doctor is honestly the complete opposite of the first doctor. He was thorough, soft spoken, caring, empathetic and reassuring.

Xander's stools do not test positive for blood so far today. He is very fussy though and has a very large, round tummy. I feel like this is the calm before the storm, but we'll see.

This morning, he had lost the little bit of weight he had gained here. And he is still listed as failure to thrive.

Thank you for your prayers. We know and love God and truly believe that He loves Xander even more than we do. As a mama, that is very hard to imagine. In fact, just the other day, a nurse asked about Xander's pregnancy and it took me a few seconds to remember that I wasn't pregnant with him. The love we feel for Xander is great and it is very hard to remember a time without him. We are willing to fight and advocate for him for as long as it takes to get him the help he needs.

Please continue to pray for Brandon and I. We are weary but again, willing to do whatever it takes. Brandon is greatly worried about the emotional and physical stress on me, since I am expecting, so we are praying for God's protection for our sweet, tiny babe. Pray for Dr. W, that he is willing to be a champion for Xander and do whatever is necessary to get us an answer. Pray that Xander feels better soon. And pray for my other three children that are currently in Georgia with family. Solomon keeps looking around for his partner in crime, Xander. My children have never been divided in this way.

I'll continue to update as I am able.

Vomiting and Diarrhea... Again...

2012-01-25T08:44:00.000-08:00

This morning at 4 am I woke up to the sound of Xander vomiting. His dinner was recognizable in the vomit... 11 hours after he ate it.

We got him and the linens changed and he went back to sleep.

This morning we did another sweat test for cystic fibrosis and again.. he didn't sweat enough.

This morning he ate very little breakfast. A small sausage patty, a half a piece of toast and a handful of cereal. He refused rice milk.

And then all he wanted to do was rock. If I slowed down the rocking chair he would scrunch up his eyebrows and say, "Rock, mama."

So I did.

For over 2 hours. And then he vomited all over me and him. Again, more chunks of food.

The endocrinologist came in and said that his TSH was only a little high and that it couldn't cause all of this. The plan is repeat that lab in 6 weeks with our regular provider.

And then the diarrhea started. He's had two diarrhea diapers in a little over an hour and a half.

We changed the rice milk to pedialyte and he refused to drink.

The attending doctor came and spoke with me at length about his entire medical history. The immediate plan was that if he didn't drink a cup of pedialyte in 2 hours we would have to re-iv him.

He just finished his second cup. So at least we are holding off on the IV.

But we are back to the drawing board. The attending said she was going to the medical director and back to the gastroenterologist that we consulted yesterday. She is asking for a colonoscopy while we are inpatient.

In the meantime, she is going to speak with other collegues and see if she can come up with something... anything to help us.

At least today I feel heard.

Frustration Beyond Measure...

2012-01-24T19:56:00.000-08:00

This will be a recap, because quite frankly I'm also exhausted beyond measure.

I left the blog off with preparing for Xander's allergist appt last Wednesday. We went and she discharged us as patients and felt that NOTHING he was experiencing was allergy related.

Brandon and I sat in the parking lot stunned. I remember turning to him and saying, "Did that just really happen? Just she just say that there is nothing she can do?"

And he shook his head yes, still too flabbergasted to make a sound.

She had told us that everything was GI related and that we needed to be seen within 2 weeks by our gastroenterologist and that we needed to go ahead and schedule the colonoscopy. Xander lost a half a pound.

So we called the gastroenterologist's office and they said we could have an appt in 3.5 weeks. We shared how the allergist he sent us to said we needed seen in 2 weeks and that he was losing weight. They said there was nothing that could be done. So we asked to speak to the doctor. She said she would ask him to call.

And we waited all night. Nothing.

Thursday, we called back. We pushed to schedule the colonoscopy. We pushed to see the doctor. We called our primary care doctor for advice. His office told us to go back to the gastroenterologist. We said that we had tried that. We said that he was losing weight.. and asked what to do. We were told repeatedly to go back to the gastroenterologist.

Finally on Thursday, the gastroenterologist's office called and said that the doctor was changing Xander's formula to a ready to feed formula and to come get a sample. We arranged to pick it up the next morning.

Friday morning, Brandon went to pick up the formula and it was Alimentum infant formula. Xander is 2.5 YEARS old! Brandon reminded the office of his age. They brushed him off. Brandon reminded them that Xander has an issue with soy and it contains soy oil. The doctor refused to come out of his study to speak with Brandon.

At my wit's end, I paged a local dietitian friend of a friend. I told her the whole story. She agreed that Alimentum was not nutritionally appropriate for Xander at 2.5 years old. She told me to stomp my mama boots loudly and encouraged me to seek a second opinion for a gastroenterologist.

I called a large practice here, and got an appointment.. in April.

I called the allergist's office and asked for a referral to a new gastroenterologist since the lady that scheduled us said that it could help us get the appt moved up. The front desk lady at the allergist's office, said she would call me right back. She called the gastroenterologist's office and tattled on me wanting a second opinion. Next thing I knew, I had the gastroenterology office calling and asking if I had questions. I asked to speak to the doctor or have him call me back. They said that wasn't possible. I said it was all ridiculous and hung up.

I called the allergist's office and asked to have medical records prepared. The front desk lady was nice until she asked the patient's name. She told me she had called the gastroenterologist's office. I told her that I didn't ask for her to tattle and I just needed his records.

She told me all about the conversation Brandon had with the office gastroenterology office that morning. And she also said that the doctor would have to approve my records to be sent and that they would not be ready on Monday as we had arranged before I revealed which patient I was calling about. I was appalled.

We headed to Georgia to take the three children to my aunt's for a little break from the craziness. Solomon had become very clingy with all of Xander's screaming and Julianne was a constant puddle of tears. The mental health of our family was suddenly very shaky.

The gastroenterologist finally called on Friday night. He said the Alimentum formula was a miscommunication. Brandon said that if he wouldn't play the telephone message game with us and would speak with us directly that we wouldn't have this issue. Brandon said that we felt like he didn't care about Xander and really dropped the ball. He assured us that he really did care for his patients. He told us to continue the Neocate Junior Formula and to add a new food every 5 days to test foods. We asked what to do when he stopped drinking since his intake had already taken a hit and he said he was on call that weekend.

We continued to Georgia. We arrived at my aunt's. Xander screamed and held his belly and wouldn't go to sleep. He also quit drinking about 8 pm that night. So we went to MCG Emergency Room. He was xrayed and had an ultrasound to rule out intussusception. They did not find that, but what they did find shocked us. After over 2 years of diarrhea, he was constipated. They felt the diarrhea was going around the constipation. The muscle that pushes food through the intestines was going very slowly. They said that could be a side effect of the constipation or the cause. They put him on miralax-- a laxative. He finally fell asleep about 7 am.. after being awake for 22 hours.

We were cleared to drive back to Virginia, so we did. On the way, Xander still would not drink and cried often. We paged our gastroenterologist twice. We received no phone calls in return. We arrived home about 10 pm on Saturday night. He still had not had anything to drink. We checked our pedialyte and it has citric acid in it. Knowing his past reaction (severe diarrhea, bleeding bottom, screaming, scratching) and afraid to make things even worse, we put him to bed.

He slept until 4 pm. We checked him often but he was simply exhausted. When we woke him, his diaper was dry. Dry after all that time!!

We took him to a pediatric urgent care center. He was very dry and it took three tries to get an IV started. After Brandon explained the situation, the practitioner said she would remain professional but that she was not surprised about our issues with our gastroenterologist. They also tested him for RSV because he was very congested. That came back negative but they did a breathing treatment.

They called St. Mary's and arranged for Xander to be admitted directly to the pediatric floor. And we've been here since Sunday night.

Monday we were supposed to have a gastroenterologist consultation with a new to us gastroenterologist and the gastro never came. (what is with these gastros anyway!?!) The attending doctor put Xander on a regular diet (excluding soy, milk and egg) and Xander drank plenty of pedialyte.

We also had blood drawn for a thyroid panel, attempted to do a sweat test for cystic fibrosis, had a stool test done, and an echocardiogram for a murmur that was found (even when he was finally hydrated.) The echocardiogram came back normal. Part of the stool tests have come back normal and we are waiting on the others. The sweat test wasn't able to be done because he didn't sweat enough. The thyroid panel came back with elevated TSH. We have an endocrine consult tomorrow.

When the gastroenterologist did come, he tapped on Xander's belly and pushed on it. And then proceeded to tell me that he felt whatever the problem was that it was acute and had passed. Xander has had diarrhea for TWO YEARS. Xander has only had diarrhea in the hospital once (which is not abnormal when we make changes for Xander. He regulates for a little while and then it is back!) He will not to any additional tests, other than the one mentioned above. He said that he doesn't even think we need a colonoscopy. He told me that this is ALL allergic in nature and not a gastro problem. I reminded him our allergist released us last Wednesday. He shrugged. I asked him what he thought the past problem was and he said he couldn't say.

And then he walked out.

I sent Brandon a text at work and he called. I told him everything that happened. And then I laid on my cot here and cried. Xander's wonderful nurse walked in to check on him and found me upset. She really went to bat for us.

The attending said that if Xander would drink either formula or rice milk that we could be released. (However, the dietician I spoke with here at the hospital says that rice milk isn't enough fat or protein and the previous dietician friend of a friend I spoke with said the same thing.) But Xander will only drink pedialyte right now. According to her, everything else can be treated outpatient but he cannot go home on pedialyte.

Tonight we tried from 4-10pm to only offer him formula and he would not drink any significant amount. We tried new cups and the nurse tried bribing him with a matchbox car. All of that effort got us MAYBE 1 ounce in him. The attending finally okayed pedialyte again to prevent needing another iv placed (yet again, an amazing nurse went to bat for him.)

I'm beyond frustrated. I feel like everyone is playing hot potato with us and passing us around the various specialties. We spoke with a patient advocate and told her the same thing.

Please pray. Pray for Brandon and I to make our issues with Xander's care clear. Pray for endurance. We are both weary.

~Stephanie

Variables... still not at baseline

2012-01-18T07:30:00.001-08:00

Yesterday we had a great morning. My shiny, happy boy had returned. Xander had a NORMAL diaper yesterday afternoon.

I was on top of the world.

And it quickly came crashing down.

So I went on the hunt again, in preparation for our appointment today.

And I found out exactly what I suspected. We still have too many variables in Xander's diet to really know much.

The first issue we have is consistency of formula preparation. I found that while the formula directions all say to use the scoop provided or a gram scale, that the scoop really isn't very accurate. Other allergy/gastro moms have reported that this inaccuracy has can caused issues with children that are especially sensitive. The most exact/consistent we could get would be to use Ready to Feed formula. But that comes at a cost too. We'll be purchasing a gram scale for Xander today.

Next, we just have too many formulas going to be able to narrow anything down. We have him on THREE formulas (doctor recommended,of course) : Neocate Jr. Chocolate, Elecare Jr. Vanilla and Elecare Jr. Unflavored with Pre-Biotics.

The flavored formulas contain a sweetener which some kids have a hard time with.

The unflavored formula contains Pre-Biotics and you guessed it, some children have a hard time with that too.

Of course, the "ideal" in a perfect world scenario would be to put him on ONE formula without Pre-Biotics that is unflavored. But he won't drink unflavored by itself--at all. (We've been using the unflavored mixed with the flavored.)

So our options are severely limited. I've read about an approach where if the child won't take the unflavored formula, that they put an NG tube in, which is an admittedly aggressive approach to find the child's baseline.

Then once you find a baseline, you can start adding things back in.

Brandon and I are going to be discussing our concerns with Dr. G this afternoon during Xander's follow up appointment. We really don't want to have to tube Xander. But, we would like to see some progress. Please pray that our concerns are heard and we come out with a game plan. And maybe a little hope too.

~Stephanie

Speech has returned...

2012-01-16T19:50:00.000-08:00

I find this to be an interesting phenomenon.

We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.

As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.

Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.

When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.

Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.

But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.

Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.

Do you feel chatty when you have an upset stomach?

No? Well, neither does he.

I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.

I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.

But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.

God give me the grace and the strength.

~Stephanie

FPIES: Food Protein Intolerance Enterocolitis Syndrome

2012-01-15T03:34:00.000-08:00

Our allergist has been very good about keeping in touch with us this weekend. I think a um.. harsh, blunt conversation with a certain Papa Bear let her know just how disappointed we were that we were left hanging on Friday. I can't say I blame him. I was near hysterics. *blush*

Anyway, so we spoke with Dr. G yesterday (Saturday) and discussed Xander's status. He was still having diarrhea and had almost quit drinking on us. By 3pm, I had only gotten him to drink 9 ounces of his formula. According to the doctor, he needs 48 ounces to grow. (I know that before I said 32, but that was a miscalculation based on him still supplementing some from food, which he is not.)

He was still screaming and sucking his thumb violently.

So we asked her if this is still considered Multiple Food Protein Intolerance. She said that she had changed his diagnosis to Food Protein Intolerance Enterocolitis Syndrome (FPIES) when she went back through his charts. He has displayed low blood pressure over and over and while he doesn't have the violent vomiting that occurs commonly with FPIES, he does have the diarrhea component. Our allergist does believe that what we thought was occasional reflux was actually vomiting since all of his reflux testing that the gastroenterologist did came back negative. He hasn't done that at all since being on the elemental formula.

We are to follow up with her and the gastroenterologist.

So what does that mean for us? Well, so far not much. There is a possibility that he could go into shock after a vomiting/diarrhea episode and we'll be careful to look for that. Again, she has told us that because he is being diagnosed when he is older than a "typical" FPIES patient that this may be a long term thing for him. (This child was diagnosed as a toddler and only has 5 safe foods.)

I networked with some other allergy/gastro moms and they have all highly encouraged us to go to one of the top specialists in the country-- especially since he is now limited as to what elemental formulas he can have and he still has zero safe foods. Apparently Cincinnati Children's, Boston Children's and Children's Hospital of Philadelphia all have highly respected programs. But it could be months before we can get in.

Do you have goosebumps yet? Annalise was going to be followed by Children's Hospital of Philadelphia.

Hearing the hospital's name brought me instant peace. It was as if my mind said "Oh yeah...this isn't a surprise for God! Annalise was not a mistake for our family. It didn't work out the way we thought it would but crossing paths with her had meaning and there was a divine reason that we did."

So we just keep going. He's still our Xander even when he isn't feeling 100%. (I don't know if he is feeling better today yet because he is still sleeping. I haven't woken him for church.) We love him and will do whatever it takes to help him. We vowed that 2.5 years ago and that hasn't changed. We don't know where we will end up with him, but then we don't know that about any of our other children either.

But we know and love the One Who does.

Off to get ready for worship,

Stephanie

The New(est) Game Plan

2012-01-14T00:24:00.000-08:00

So, after we found out that our allergist's office was closed and the diarrhea and bleeding continued, we got frustrated and called the gastroenterologist. Afterall, our gastroenterologist handpicked the allergist he wanted us to see.

We explained what we thought happened with the E028 and we were told quite frankly to call the allergist. We informed them that we had no way to reach her and the office was closed today.

Suddenly, we started getting some advice. Our gastroenterologist wasn't happy with Xander being on the tropical flavored Neocate Jr. In his experience, he says that his patients with chronic diarrhea do poorly on the tropical flavored Neocate Jr. He also said he never would have had us try E028, for the same reasons.

We were told that he prefers Elecare formula for children with chronic diarrhea. (Same thing-- amino acid, elemental formula-- just another brand.) And we were told to come get samples.

So off we jetted to the gastroenterologist. *sigh*

When we got there, they gave us two cans of unflavored formula and one vanilla flavored can. They only make one flavor of Elecare Jr. We were also given a packet of recipes with suggestions to put JUICE in the unflavored formula to flavor it. I was pretty annoyed by this since Dr. V told us to stay away from juice at all costs before we were ever sent to the allergist. The other recommendation was to flavor it with, get this, coffee. I think not.

The gastroenterologist's nurse let us in on a little "secret" that our gastroenterologist and allergist often butt heads and that she feared we were going to be the latest cause. Nice.

On the way home in rush hour traffic, with a screaming toddler that was now digging into his skin and had red patches all over his face, our allergist called.

She just had to listen to Lady Antebellum as she spoke with Brandon because that is all we could do to keep Xander's howling to a minimum. Bet she has never had that during a consultation!

We were advised by her to not give him Tropical flavored Neocate Junior anymore and to not give him anymore E028. Also, she had sent us home the day before with a stack of flavoring packets and most of those contain citric acid. We obviously were advised to not use those.

As we went through his history with her (again!) she thinks he's had a mild reaction to the citric acid for quite some time and that the E028 pushed it over the edge.

Here's why:

At first when we started the formula he would only take the chocolate-- and he was constipated but truly happy for the first time in his life. We immediately began to see improvements in his behavior, language and diapers!

When he went on drinking strike, we offered the tropical (upon her office's advice) thinking that he was being a typical 2 year old. He wouldn't drink it all the time, and drinking strikes happened often. So we were advised (again by her office) to alternate his choices. Their thinking was that he was used to having different flavors and was probably growing bored with his new limited diet.

And then we started having random loose stools. But NOT to the same extent as before. We knew that it could take quite some time for him to heal and we were told that this formula stuff was not going to be a quick fix. So he was still mostly happy and his bottom was not bleeding, so we figured this was just going to be a long term process.

Now that we have the big picture of the E028 with citric acid causing a huge issue, and we put the pieces together from his tropical formula, things look a little differently.

So, this is the new game plan: Vanilla flavored Elacare Jr. and Chocolate flavored Neocate Jr. We are also supposed to stay away from citric acid(!!!!!) no matter what! He goes in soon for a weight check. I'm praying that he maintained or even gained because I've heard the words tube feeding thrown around between the gastoenterologist and the allergist. Would you join me in prayer?

Brandon and I would like to maintain as much normalcy for Xander as we can. He's lost so much normalcy in the last few weeks. But we obviously want him to grow and be nourished too. I have a feeling we'll be walking a fine line between the allergist and the gastroenterologist. I do not intend to let them play tug of war with my child!

I got several messages asking how I'm holding up. I had a mini-breakdown yesterday and once Brandon got off work at 3pm the tears flowed. Emotionally it was very hard to watch Xander go back to struggling so very much. In a blink of an eye, Xander quit talking again. He was back to screeching and screaming about everything. He wouldn't lay his bottom down so I could change his diapers and diaper changing had become a wrestling match again. He had screamed for hours on end when Brandon got home. His thumb has a sore spot where he was sucking it furiously. Xander has been a thumb sucker since we took his pacifiers but lately, the callous on his knuckle had softened. He was sucking his thumb much less before this most recent episode.

Watching him regress so rapidly, took it's toll on me and after we got the new game plan, my body shut down. I was emotionally and physically exhausted. I was in bed sleeping by 6:30. Brandon woke me for dinner and I went right back to sleep.

If you remember, would you pray for endurance for me? This most recent reaction could take some time to work out of his system and Brandon has to work tomorrow. Also pray that the baby is okay during all this stress.

Hanging by a thread,

Stephanie

One Step Forward, Two Steps Back...

2012-01-13T08:58:00.000-08:00

This morning I woke up hopeful. That hope was quickly dashed.

You see, last night Xander sat at the dinner table with us, and we enjoyed our first "meal" together since Xander was put on an elemental diet. His sad eyes looked around at our food and I almost had to excuse myself. But Daddy reminded Xander that his food was in his cup and gave him a high five and Xander drank his formula and then asked to go play.

It felt like we were finally moving forward.

And then this morning, I changed very upset little boy's diaper and saw a bleeding behind and diarrhea. I racked my brain trying to figure out what could have caused it since I was SURE that he hadn't gotten any food last night.

And then I remembered the "juiceboxes." Our allergist had sent us home with some E028 Splash boxes to try. Basically it is pre-mixed elemental drink. And we let him have two while we were on a long car ride last night. One was grape-raisin and one was orange-pineapple.

Womp, wooooooooooomp.

There is a very small population of children on elemental diets that cannot tolerate E028. And there is another population that cannot tolerate citric acid--- which the orange box contained.

Womp, woooooooooooomp.

So, now we get to notify the allergist about his reaction and see what she thinks.

I would so love to get off this ride. But then I think back to how happy and healthy Xander looked when we had things under control. He was so different! And I get back up and put one foot in front of the other.

Anything for him.

Tearfully,

Stephanie

Back to Simplifying...

2012-01-11T11:38:00.001-08:00

I originally named my blog The Simple Bees because I was in a huge simplifying stage.

Sometimes things are just unnecessarily complicated. And we were trying to move things back to being more simple.

It's about that time to start the process of simplifying our lives again.

So, the past few days I've been quiet on the blog. Others have noticed I've been quiet on Facebook too. I've been observing our lives and trying to figure out what can be simplified and what needs simplified.

Meals have always been an huge complication in our lives. And I'm not quite sure how to simplify them without causing boredom. Not too long ago, Tuesdays were Taco Tuesdays. But somewhere we became bored with that and moved away from it. So I'll be looking at my methods again and trying to simplify this again. I know that a lot of people eat the same thing every week, but that just isn't appealing to any of us.

I do need to rely more on my crockpot as cooking raw meat isn't going well at all for me at this point.

Homeschooling is going well, but I fear that our curriculum will have to change this fall. We've enjoyed doing unit studies but this fall we expect to have 3 children, 3 years old and under, so I'm not sure I'll be able to keep it going this coming fall.

Our finances will simplify themselves soon. Our van will be paid off this spring and we cannot wait! We've also trimmed the budget back a good bit in order to meet some goals we set and that also helped simplify things.

I'm eager to find solutions that will allow us to simplify more.

Stephanie

Budget Blues...

2012-01-04T13:02:00.000-08:00

No, not the budget blues you are thinking of!

See.. right in the middle of all the Christmas stuff and medical stuff we've had going on, I got a particularly nasty virus on my laptop.

I stuck out my bottom lip and pouted for a little bit and Brandon went to work texting a friend of ours. 4 hours later, I was awoken by Brandon dropping the laptop on my hip and telling me I owed the Hatfields.. big time.

And in the very next breath, he said that they saved my documents and my pictures to disks, but the computer had to be set back to factory settings.

In my mind, I heard all kinds of alarms going off, but I was just happy to have my beloved piece of technology functioning.

I didn't realize how much I store on my computer. Now I do.

I went through the disks but couldn't find our budget. Insert stomach dropping into big toe. I worked tirelessly on our budget formatting and planning over several years.

It's all gone.

Enter, YNAB (You Need a Budget.) I downloaded the free trial and set to work trying to figure it out, on New Year's Eve night. So romantic, right? Between the video tutorials and the support forum, I found just enough to be dangerous.

But, I had no idea the amount of stuff I'd need to look up to get things tweaked just right.

So... on top of everything else, I've been trying to make our budget right. Some things are lost and will have to be recalculated. (Anyone know how much we typically spend for Easter? Yeah, me either!)

It's annoying, but I really think I like the YNAB method better. Even if I do get a little sad thinking about all that hard work that is now gone.

So... here is the yearly PSA. PLEASE backup your data!

~Stephanie

No More Even Stevens...

2012-01-02T19:36:00.000-08:00

A few days ago we were telling the girls that I had a doctor's appoinment today.

Julianne looked a little sad, so I asked her what was going on. She told me that she really hopes God answers her prayers and she gets a little sister. We told her that it was too early to tell and not to worry, that God has it alllll planned out. :)

Then DeLainey came up with a grand idea. She thought we could have twins! A boy and a girl to keep our "teams" even. Julianne liked the idea better than a single boy.. and then she got a look on her face. I've learned this look means to brace myself.

"No! We should have TWIN girls. Lainey got two boys when she prayed for two boys, so I'll just pray for twin girls."

Well.. we told her that twins sounded scary to Mommy and Daddy, but that we would be thankful if there were twins or just one baby. And that we'd be thankful no matter what gender the baby is.

But the conversation stuck with us and started making us wonder.... especially since twins run in my family...

So one of Brandon's first questions during my ultrasound today was "How many are in there?"

Just one. :)

And then we saw a sweet little heartbeat flickering away. Ultrasounds never get old!

So, no more Even Stevens. One "team" will outnumber the other come August.

(Sorry the picture isn't fabulous. Ultrasound paper is very shiny and it was hard to get a picture without the glare, but covering my last name and my doctor's name. )

Baby #5 is due August 24th, 2012. I was thankful that I paid attention to my body and knew that "the wheel" was going to be wrong. Since I have preterm labor having an accurate due date is very important. By knowing this, I also knew not to worry when the baby measured "behind" according to the nurse's first date. Baby measured perfectly to my dates. I'm so thankful that I listened to the quiet whisperings of the Father.

God, we are SO thankful for this new little life. We know that life has been crazy the last few weeks, but we know that Your timing is perfect. We rest in that. I know that we'll work out the logistics with a lot of prayer and planning. I can't wait to see who You are knitting in secret. We love You and praise You and can't wait to see what You have in store for us in 2012. In Your Son's most precious name, Amen!"

~Stephanie

I didn't think about my laundry basket... not even once...

2011-12-29T10:03:00.000-08:00

I went to bed last night after making a Mega To Do List. To be honest, there are lots of little things that need to be done now that we are moving out of survival mode. Lightbulbs need replaced, this needs organized, that needs organized, I should go shopping for more than groceries for the next few days, we should go to the library, I have a zillion things to print for our homeschool, etc. Our house isn't filthy, just a lot of little projects have been put off.

And then I tossed and turned... until 3 am.

I was bothered and I couldn't quite figure out why. After wrestling with thoughts, I realized exactly what bothered me about my Mega To Do List.

The whole time that we were waiting to hear if Xander had brain tumors or not, my priorities were different. It is no secret that I struggle with perfection.

I've said it before. Really, I have struggled with perfection my entire life.

My four children make consistent perfection pretty far out of reach, but there are times that I really convince myself that if I just work harder, faster, more that I can reach it.

And I have in the past. Except, perfection can't be accomplished in all the areas of my life at the same time without causing me to teeter on the edge of a mental breakdown on my part. It can't be maintained long term with serious repercussions to the relationships in my life.

People matter more than things.

When we were waiting to hear about Xander, I never pushed the children away to complete all the laundry in our home. Let's face it, even if I do get it all done and put away, what happens at the next blow out diaper? Or bathtime? Or even the next morning when we wake up? We make more.

Why didn't I push the children away to finish the laundry? Because I was terrified that our life was going to change in one phone call. I wanted to soak up every single second of each child.

Now that we have good news, that desire to soak up all I can of my children shouldn't disappear. This should be a lesson that I carry with me for the rest of my life.

No matter what, my children are growing.. Their childhood is disappearing right before my very eyes. In 20 years, do I want to remember my house was perfect, my laundry hamper had nothing in it for a few short hours and my to do list was always completed?

Not really.

Or do I want to remember the feel of Solomon's little chubby arms wrapped around my neck? Do I want to remember Xander laying on the floor under a ceiling fan for close to an hour? Do I want to remember how Lainey looks at the world with an optimism that is hard to find these days? Do I want to remember having conversations with Julianne about our faith?

Yes, I want all of that.

So while I cannot completely ignore the responsibilities of keeping a home, it will not remain an idol in my life. I refuse to let it rob the joy of raising four beautiful, smart, loving children.

So Mr. Mega To Do List, you can taunt me from my unorganized desk. I'm going to make memories.

~Stephanie

Goodbye, Survival Mode!

2011-12-28T06:45:00.000-08:00

Since November 30th, we've been living in survival mode. Survival mode is just where the absolute basics are done for your family's survival. It is day to day (or hour to hour, or minute to minute) living.

We were blindsided that day by a caring and well meaning doctor. And ever since life has not been the same.

Then we took an unexpected path and to be honest, moving Xander back to formula only felt like a huge boulder that I had to carry... when I was already in survival mode and barely keeping my head above water.

But God has been faithful and extended heaps of grace on us during this time.

Yesterday, we had the sedated MRI done for Xander. It took a ton of arranging between Brandon and I and honestly the whole procedure was a miserable experience for both Xander and I. It was so bad, I will be writing a strongly worded letter to the hospital during naptime today.

After I convinced the nurse that YES, I had a right to get a copy of the MRI to carry to our neurologist (sigh), we finally left and picked up the other three kiddos. When we arrived home all the children went to nap, while I ate and then collapsed for a 30 minute power nap.

Then we loaded everyone back up to go pick up Brandon and drop off the MRI to our neurologist.

Brandon sweet talked the office staff and we were told that Dr. T would be calling us with results between 5:30 and 7:30 last night.

We ran one more errand and then went home to wait for our call.

While I was clock watching, I remember having the most amazing peace wash over me as I flitted around various websites wasting time.

The phone rang, and it was Dr T! He kept his word and was calling with results. And he told us the most beautiful words:

"Xander has no tumors. He has no unidentified bright spots. His scan was unremarkable. The radiologist noted one anomaly... a small abnormal blood vessel, but I cannot see it on my computer, which may be a resolution issue since the radiology department has much better equipment compared to me. I do not feel like he has neurofibromatosis, but I cannot say with certainty that he does not. I see no confirmations though. The next step would be to come retrieve this disk, and take it to genetics."

We asked about the blood vessel and he said that since he cannot see it, he has no medical opinion of it and it may just be an incidental finding. That he just shared the radiologist's findings with us and perhaps that would be a puzzle piece for the geneticist to sort out.

At this point, we do not need to follow up with Dr. T.

We thanked him for his care.. and having mercy on us and getting back to us so quickly! We said we'd pick up the disk this week. And wished him a Happy New Year before we hung up.

And then Brandon and I danced and hugged and jumped around like a bunch of 4 year olds.

Just keeping it real, folks!

Goodbye, weight on our shoulders!

Goodbye, survival mode!

Hello, best sleep we've had in almost a month! We crashed hard.

We still do not have a definite "Xander has x" or "Xander just has tons of cafe au laits." But, we got pretty much the best news we could have hoped for.

And once again, we are thankful for the Lord's goodness!

~Stephanie

So far the MRI is a go!

2011-12-26T16:40:00.001-08:00

I called the surgery center today and spoke with the nurse. She said that since Xander is not running a fever, to keep our appointment. The anesthesiologist will check him out and that most likely we will have the MRI. We have to arrive at 8am and he should go back after about an hour.

The scan is expected to take 30-60 minutes and then after he drinks something in recovery he can come home. Handy Manny is going on the field trip too!

Prayers are appreciated. Our day will start around 5:30 am. I'm hoping to hear from our neurologist sometime tomorrow afternoon.

I now have a headcold too. (Guess who got sneezed on repeatedly yesterday? Raises hand!) Hopefully I feel better soon!

~Stephanie

The Smack of Reality

2011-12-25T16:57:00.001-08:00

Day 3: (Christmas Eve) Xander only drank 1.5 cups before he went to bed. I was greatly disturbed by this so we jumped at the chance to give him a cup when he woke a little after midnight. That brought his total up to 2.5. Still not 3 but better! We figured he was just distracted and a little out of sorts since we went to Christmas Eve service at 5pm. He did not scream in the car at all, even after we drove across the river so Brandon and I could find where I have to be on Tuesday. It is a hospital unfamiliar to me and I'd rather wander around with my husband. We programmed the entrance into the GPS. I just have to remember to take toll money. (Gotta love tolls!) He didn't have any dirty diapers... I can honestly say this has never occurred in his life.

Day 4: (Christmas Day) So far he has only had 2 cups. We are praying that this isn't a downward trend. :( We are hoping that maybe we can get him to drink when he wakes during the night. I spent much of today fighting back tears and a lump in my throat. I know that the extra hormones aren't helping a bit. I think I got a little ahead of myself thinking about the future. For example: it is almost birthday season here. If we are still doing formula only, he will not be able to have birthday cake. Simple things like going out to dinner to celebrate things will be a cruel reminder of what Xander cannot have. I don't know-- maybe I'm just overtired and overstimulated with the holiday. It was just a very hard day for me. I had a little cry and now I feel a little better. Still totally overwhelmed with the unknown but a little better. I am very thankful that he has had no diarrhea and no diaper rash.

We have some new prayer requests today:

1. That Xander drinks at least 24 ounces every day.

2. Tuesday we are to call the allergist with the results of the first 5 days. Pray that we can convey our concerns in a way that is easily understood.

3. Xander has a small case of the sniffles. This could cause the MRI to be cancelled since he has to be sedated. Pray that we get clear answers so that we can prepare ourselves accordingly. We so badly want to know if there is anything found on the scan but we also want his scan to be done safely.

I pray you had an enjoyable day celebrating our Savior's birth. We sure did.

~Stephanie

Poop Chronicles: Elemental Formula Trial Results Day 1 and 2

2011-12-24T07:00:00.000-08:00

Photo Credit

Appointment Day: Xander drank one cup of chocolate formula for dinner after we got home from our appointment. He seemed less than impressed.

Day 1: Normally he would wake with a terrible diaper. This time it was different. Not completely normal but much different than what we were used to. He drank 4 cups of his formula today-- 2 Tropical and 2 Chocolate. This evening he had a dirty diaper that was NORMAL! I seriously had to check which son I was changing! Overall today, he wasn't doing his blood curdling scream. He used more words instead of screaming. He looks more relaxed and didn't fight me when I changed his diapers. He actually didn't even ask for food except for when he saw Solomon munching on a pretzel. Part of me wonders if he already realizes that food was hurting him. He only had 2 dirty diapers total today which is a marked difference from 3-7.

Day 2: When he woke up he was only wet. This is a marked change. He only drank 3 cups of his formula today, but I'm not supposed to worry because that is enough to maintain his weight. No blood curdling screaming. He did fuss quite a bit today but I think that is related to him not understanding what is going on. He sat at the table today and colored but he now refuses to sit in his chair. (We took the front bar and crotch bars off of the highchair to make it more like a toddler chair.) I guess he figures if he isn't eating he doesn't need that chair. Before all this though, he was starting to want to sit in the other chairs like his big sisters so maybe I'm reading too much into that. Only one dirty diaper today and not diarrhea. His tummy looks less bloated too. He did not ask to eat at all.

We are not asking him to sit at the table while everyone eats. In fact, I've been taking him in another room and allowing him to watch Handy Manny while he drinks his cup. Making him sit at the table while others eat just seems cruel. By the time Handy Manny is over the children are usually done eating, so he goes to play and I eat my dinner in another room away from him. Again, we are struggling with a lack of normalcy. Mealtimes in the past have been our reconnection times. We used to all sit together and talk about our days.

The formula smells very nasty and is doing a number on my morning/all day sickness. We are going to buy a mixing pitcher and have Brandon mix it at night so that I can just pour cups.

We have a few prayer requests:

1. Neocate Junior costs about $35 a can. That lasts almost two days when he doesn't take the four cups every day. Quick math says that it will be at least $525 a month. This is more than we budget for groceries, or our van payment. Seriously, OUCH! Our doctor is working on having our insurance cover it. Other families have warned us that because he is taking it by mouth, not by tube, that they may reject the claim. We are praying for the claim to go through without a hitch. Our insurance has pleasantly surprised us in the past. We are hoping for that to be the case here too. In the meantime, our doctor gave us samples while she is trying to process our insurance.

2. Xander's MRI appointment has been moved up a little. He was the third case on Tuesday the 27th and one cancelled so we have to be there at 8 am instead of 9. I'll be by myself since Brandon is in training for his new company. Please pray for us. I don't tend to do too well waiting, even when Brandon is with me. I've been warned he may be back for up to an hour. Also a friend of ours is keeping the other three. Please pray that they are well behaved and mind their manners. Also pray I get to where I'm going on time and without getting lost. I'll be living in my van that day between taking Brandon to work, dropping the 3 off and then going across the river to Xander's procedure, then taking the discs to the doctor's office, then picking up the kids and then picking up Brandon.

3. Please pray that we are able to enjoy Christmas. I don't want all of this to eclipse the celebration of Jesus' birth. God is our strength and rock and if anything this trial should magnify Him, not minimize Him.

I pray you are enjoying your Christmas Eve with your family as well.

~Stephanie

Unexpected...

2011-12-21T20:39:00.000-08:00

Today, Xander had two appointments. The first was a physical to clear Xander to be sedated for his MRI on Tuesday. We managed to get that appointment on fairly short notice but it was originally scheduled with our doctor's partner. Then our doc called on Tuesday to check in with us and I mentioned it, so he made room for us on his schedule and moved us. Tiny blessing.

So we did our appointment with Dr. P. He is an amazing health care provider and we greatly respect him. He "gets" the dynamic of our family size. He has 6 children. He "gets" our homeschooling. His wife homeschools their children. He is amazingly easy to talk to and we've never felt judged.

We sort of vented this morning about the merry go round of appointments we've been through. He was very empathetic and said to feel free to call him if there is anything that he can do. He also told us he was praying for us. We greatly appreciated that.

Then we went ate lunch and went to the allergists office. It was a nightmare. Xander screamed the entire time. Dr. G asked a ton of questions to get a thorough medical history and try to fit puzzle pieces together.

We did some skin testing. Xander raged the entire 20 minutes between the testing and the doctor checking the results. He was not supposed to scratch at his back and this drove him absolutely insane. And after all of that, nothing came back. This was incredibly frustrating for us.

Dr. G said that our next step would be to put Xander on a hypoallergenic formula. One that is elemental, meaning that the protein is already broken down into amino acids. She thinks that it is more likely to be an intolerance to the food proteins that we are seeing than true food allergies.

She said that Xander seemed highly agitated from the very beginning of the appointment (before the skin testing) and she thinks that it may be that he is in pain and too young to fully express it to us.

So that is our plan right now. For now, Xander is only taking Neocate Junior-- no table food. Three 8 oz cups of it a day is enough to maintain his current weight and 4 will be enough calories to grow. We will be speaking with Dr. G soon to tell her how his symptoms change if they change at all. If they do change for the better, she will place a prescription through our insurance.

I'm really sad about this. I know that Xander has no idea why he can't have his beloved pretzels that he begged for tonight. I just wish everything didn't have to be so hard for him and I could take his place. I would in about 2 seconds flat. I couldn't even bring myself to eat my dinner until he had gone to bed.

A friend of mine said it so well when she said I had to mourn this. Normalcy as we know it doesn't exist. Almost all of our "free time" is spent in doctors offices. And now something that was so basic-- feeding my child, has changed drastically. I know we will get through this, but this is a road that was completely unexpected...

~Stephanie

Attention Please! Solomon would like to make an annoucement....

2011-12-19T10:27:00.001-08:00

Coming in August 2012, Lord willing...

Tearfully humbled and utterly grateful,

Stephanie

My Eyes are Crossed, but I Found a Nugget of HOPE!

2011-12-18T17:44:00.000-08:00

I've been reading and reading and reading. Today was a veg out day, we stayed in pajamas all day! Have no fear, I'll shower and change into fresh pajamas before I go to bed. :)

However, I've been searching the internet and reading until my eyes are nearly crossed!

Imagine my relief (delight? deliriousness?), when I ran across this:

Legius Syndrome Often Mistaken for Neurofibromatosis Type 1

Did you read it? Did you see this part?

"Legius syndrome typically follows a more benign course and clinical management should primarily focus on developmental and speech delays, learning disabilities, and attention deficit and hyperactivity disorder," Dr. Messiaen said.

I'm printing this article to add to the notebook we take to our appointments.

Legius Syndrome and Neurofibromatosis are two different gene mutations. It is common to have cafe au lait spots as your only physical sign of Legius Syndrome.

Oh please, Lord, let this be!!!!

~Stephanie

Finally, some good news!

2011-12-16T21:12:00.000-08:00

Today, we went to the pediatric ophthalmologist.

(Yes, that is three appointments/procedures/specialists this week. I'm exhausted!)

Dr. C was amazing! He listened to the whole long story about how we started at the gastroenterologist went to the neurologist and ended up with him. He knew exactly what neurofibromatosis was (unlike the neurosurgeon we accidentally ended up seeing) and shared accurate information.

I also shared with him that when we were looking back through pictures sometimes one of his eyes looked a little turned in. I've never seen it physically turn in, we've always noticed it in hindsight. I also told him that I knew that he could move that eye all around.

He thought Xander was adorable and was very patient with Xander's busyness. Xander had his eyes dilated and went back out to the waiting room to play.

Then we went back to the exam room and he sat on my lap as the doctor did a complete, thorough examination.

Xander has no lisch nodules. NONE. This is fabulous news. Dr. C explained that seeing lisch nodules would be rare in a child Xander's age. He said that it would indicate a very progressed neurofibromatosis in our son. It is much more common to see lische nodules starting at the age of 4 to 6 years of age.

He checked for strabismus and found none. What he did find was psuedostrabismus. Basically what I found in the pictures was an optical illusion created by the nasal bridge.

He asked to see Xander's cafe au lait birthmarks and when I showed him, he said that he was concerned as well and that we most likely will not get an "all clear, never worry about this again."

The neurologist, Dr. T, had pretty much told us the same thing. I took it much better today.

Basically, due to the amount of cafe au laits and the nature of this progressive condition, we will continue to watch for other symptoms/issues/complications even if his MRI and EEG are clear this time.

We are cleared from Dr. C but he will continue to be seen yearly, as long as we have no other concerns.

Of course, Xander's adoption came up during the family history portion of the appointment. Did you know that Dr. C and his wife are Believers and have discussed adoption in the past? They are currently expecting their first child and I was able to share how we have biological children AND an adopted child and how we've been waiting for another adoptive match. (The other three were in the waiting room with Daddy.) He asked how long we've been waiting and I was able to share about our failed adoption too. He said that he and his wife feared that. I told him we did too, but our faith in God has pulled us through.

*swallows lump in throat*

Dear Heavenly Father- I love how You are using our story to reach others. I don't find it a coincidence that all of the specialists that we've been able to get in with, were researched back when we were trying to find care for Annalise. You've been preparing us for this since summertime. We just didn't know that the specialists would end up being Xander's care team and not Annalise's. I love how we can look back and see that You've ordered our steps. I'm thankful that we've been able to get in with these specialists rather quickly. Please give us the peace that passes all understanding. We love You and praise You. ~Amen!

~Stephanie

PS: Please keep praying for the scheduling of the MRI and EEG. We haven't heard anything and will be following up on Monday.

Neurology... Not What I Wanted to Hear

2011-12-15T17:52:00.000-08:00

It's taken me some time to figure out how to share about this appointment.

It was stressful. The doctor did not reassure us as I hoped.

I'm not 100% sure what Brandon expected when we went but I know what I hoped to hear.

I wanted to be told that our gastroenterologist was overreacting.

I wanted to be told that Xander's birthmarks were not cafe au laits.

I wanted to hear "Nothing concerning here, Mom. Hope you never need my services again."

I didn't hear any of that. I know.. I was in denial.

Instead, our doctor raised his eyebrows and wrote alot as Brandon and I exchanged worried glances at each other. He said he was very concerned but that it wasn't anything to send us through the ER for. (The office is attached to a hospital- if you go throught the ER or are admitted you can have procedures done faster.)

Instead we got more referrals. He is concerned about Xander. He did reassure us that most patients with neurofibromatosis do well though.

Instead, he ordered an MRI and an EEG. He referred us to a pediatric ophthalmologist to have a full exam and an exam with a slit lamp to check for lische nodules. And we got a referral to genetics.

Basically, we are gathering information and then a geneticist will put together pieces. There are a few other conditions that the cafe au lait birthmarks could point to.

He told us that this is going to be a multi-disciplinary, multi-specialty process. He warned us that this may be a long road. He did tell us that he thinks Xander's tummy troubles are completely unrelated. That was reassuring. He urged us to be mindful of our stress level and to take care of ourselves and our marriage. He also reminded us to treat Xander just the same.

Brandon and I had done enough research that we pretty much expected all he said except for the EEG. When we got home, I walked to our bedroom and laid face down on my bed crying. I so badly wanted to be told that there was nothing concerning.

We have no idea how this story will end. We are still hoping for the best. But we'll do whatever he needs.

Now, we are waiting to hear when the MRI and EEG are scheduled. Please pray they are scheduled soon. We've already met our maximum out of pocket for our whole family (this plan started June 1st!) with Brandon's insurance through his current employer, but we will only have coverage through his current company until December 31st. Either way, we know that God is the ultimate provider!!

We were blessed with an appointment with the pediatric ophthalmologist for this afternoon. What a blessing that we only had to wait 2 days.

~Stephanie

Endoscopy Adventures

2011-12-15T06:00:00.000-08:00

My Silly Man in the Waiting Room

Praying and Singing... it was just me and him in our own little world.

This past Monday, Xander had an endoscopy done as an outpatient procedure. We woke up bright and early and loaded him into the van. We allowed him to wear his footie pajamas and as I looked in the backseat with only one child, he seemed like such a big boy.

Goodness, I can close my eyes and still remember every detail around his arrival. Every smell, the sounds, what else was going on in our lives. Has it really been 2.5 years? I remember what his skin felt like, unwrapping him and studying every millimeter of his body.

And I'll always remember the day that I walked into the nursery and he heard my voice and went ballistic as I was scrubbing in. He cried hysterically until I got everything settled and picked him up. He knew we belonged together after just a few days of us visiting and caring for him. I rocked him and cried and cried. It was our moment, where I feel that he recognized me as his forever mama.

I was really nervous about the procedure and hadn't sleep well. But with God's help, I held it together. He was not happy about not being able to eat or drink. He has a serious coconut milk/sippy cup habit.

He was a bit of a handful and didn't like waiting but before we knew it, they walked away with our oldest son. And it didn't bother him a bit!

We sat in the waiting room and tried to watch TV but the only thing that I was successful at watching was the clock.

Soon, we were called back and walked into the recovery area. He was sleeping peacefully and I had time once again to take every bit of him in. His eyelashes slay me.

Dr. V came and showed us pictures he had taken. He felt there was some inflammation and found a mass in his stomach that he said looked like misplaced pancreatic tissue. He wasn't overly concerned about that though. He said we'd get the biopsies back by Friday.

Then came the task of waking my sleeping prince. He was perfectly still and snoozing away. But the nurse started to worry that he wasn't waking up and it made me panic. I was rubbing and kissing and talking to him with no response. Every minute that went by made me panic more and soon after, I stuck my cold hand down the back of his flannel sleeper... and he started to stir.

I hope I don't sound like a bad mama when I say this.. but I've never been happier to see a sleeping child wake up before in my life. :)

The nurse was concerned about his low blood pressure so she looked at his chart to compare it to his intake blood pressure and it was about the same and we were on our way.

We were advised to keep him laying or sitting all day, but I'm pretty sure they had no clue how active he is. He was rather dizzy and lacked balance so we watched him carefully and when he became whiny, we put him down for a morning nap. When he woke up, he appeared to feel much better and the rest of the day seemed quite normal.

Yesterday, Wednesday, we got the results of those biospies. When Brandon answered the phone, the color drained from his face and he asked me to walk to the bedroom. My heart pounded a zillion beats in those few steps.

Turns out the doctor had asked to speak with both of us together via speakerphone. Brandon had no idea why and feared the worst. Dr. V let us know that all the pathology came back normal and didn't even show inflammation. The mass he saw was not misplaced pancreatic tissue but was typical gastric tissue.

Basically, even after all that, we still have no idea why he has chronic diarrhea.

So what is the gameplan?

Well... we are to keep the allergist appointment on Wednesday. If she finds nothing (which we have totally been warned may happen.. even with his known food allergies, then we go back to the gastroenterologist. We are supposed to leave his diet the same unless the allergist tells us otherwise.

We will see the doctor in 6 weeks for another clinic visit. We'll check weight and height and if there are continued issues we'll discuss a colonoscopy to check for colitis or doing an endoscopic ultrasound on the mass in his stomach to see if that could cause the diarrhea.

Basically, another wait and see type thing. There is a also possibility that we will find nothing and that Xander has what is known as toddler diarrhea (similar to IBS in adults.)

As I share this news, I have to wonder if God has used the diarrhea to get us to the gastroenterolgoist which noticed the cafe au lait spots so Dr. V would ask questions about his cafe au lait birthmarks with the end result being a referral for a neurofibromatosis screening. I've never forgotten that God can do anything and can use anyone.

I also wonder if God is using us to spread the word about adoption. ;) We've gotten quite a few questions about adoption in general.

We see the allergist on the 21st and she came highly recommended by our gastroenterologist and several of our friends from church.

We appreciate your prayers as we desperately seek answers to help our son. They mean the world to us and quite honestly those prayers are the glue that keeps me together on some days.

Glued,

~Stephanie

Post-Race Recovery...

2011-12-14T05:28:00.000-08:00

I feel like I've run a marathon. Every night I've gone to bed early and I still feel like I could sleep a week.

We've had something or multiple somethings to do every day for over a week, on top of parenting our crew and having fun with Auntie Karon and trying to keep my house from getting too trashed. For a homebody like me, that kind of schedule is a big deal. Add in the medical stress and drama and we not only ran a marathon, we ran it in the mountains.

I have alot of posts in the works, but right now, I just need to recover.

The neurologist yesterday said this would be a long term thing with multiple medical appointments and tests. He encouraged us to take care of ourselves and make sure we don't run ourselves too low. I need to heed that advice.

Limping to the recovery station,

Stephanie

New Chapters...

2011-12-12T19:08:00.000-08:00

You know, God is SO amazing!

Today over lunch, Brandon and I talked about our journey these past few years. God's fingerprints are EVERYWHERE as we look back.

The QV (Quick Version) :

In 2007, Brandon's current company, we'll call it T, announced that they were opening a call center in our hometown. Brandon did similar work for a Company we'll call B, and started some research. We found out that the pay at T was about the same amount as Brandon's base salary, but there would be no commission. Commission pretty much doubled his salary.

So he stayed... and was laid off from B.

Brandon worked for another company in sales for a bit and did very well. But his pay was completely commission. He knew that it most likely wouldn't be sustainable long term.

So, he put in for Company T.

He was hired in July of 2007. He was very successful and eventually we relocated to Virginia to convert a call center here.

I came kicking and screaming. *blush*

During our move here, his company added an adoption benefit.

We started the adoption process.

We started homeschooling due to issues that we encountered here.

And we all know how quickly our Xander joined our family.

I was lonely and really struggled with making new friends. I threw myself into an online moms group.

Shortly after, I found out I was expecting. This was quite a shocker given our infertility struggles.

We moved to a larger apartment.

We struggled to find a church here. We tried over TWENTY churches in 2.5 years.

We visited our church and I *knew* it was home. Brandon and I prayed over it for a few weeks.

We joined.

We knew we wanted to live closer to our church and since our lease was coming up, we started looking.

We are in a more rural area and there are only a few apartment complexes to choose from and they are much smaller than our large apartment. So we knew we needed to find a house to rent.

We found a house and we have the BEST neighbors we could ask for and we are 9 miles from church.

The church has been balm to our soul. The people are amazing and I've met soooooo many new people.

Shortly after we moved here, I felt settled and told Brandon I couldn't imagine living anywhere else.

Brandon started casually applying for jobs that interested him. One was for a position out of state. It made my stomach hurt to think about relocating again. This was HOME!

This week, Brandon asked me to leave my moms group. And that feels okay because I have such sweet fellowship with my local friends. Some of the women from that group will be Lifers. (Lifetime friends that you are friends with forever.)

Brandon accepted a local position in a different industry and took it. He only has 3.5 shifts left at T. This new company isn't in our home state of Georgia. His commute will be less than half of what it has been. The benefits are amazing and Brandon will have room to grow.

And as I look back and see all of this, I know that we are directly in the center of God's will for our lives. Oh the peace that brings to me!!!!

A new chapter is about to begin... I'm excited to see what the future holds for us.

~Stephanie

PS: Xander did well with the endoscopy. That will be tomorow's post. Tomorrow, he has an appointment with a Pediatric Neurologist to discuss his cafe au lait birthmarks. Prayers are appreciated. :)

How we Apologize in our Home...

2011-12-10T22:17:00.001-08:00

I live with a bunch of sinners. *gasp*

Seriously I do! A whole house full. Including Brandon and I.

And oh boy do we have lots of opportunities to learn how to apologize!

I apologize to my children... often. It keeps me humble.

In our house, we apologize by saying what we did wrong. We confess it *all*. We don't cherry pick a the easiest thing to apologize for.

We say how truly sorry we are.

We avoid the word BUT.

For example: I'm truly sorry I yelled at you, but you are annoying!

Yeah.. that doesn't fly.

"But" has a way of undoing everything in front of it.

Wanna see?

"I'm so sorry that I didn't discuss this with you when I found out. But you always get short with me when I do discuss this topic with you."

See that shift of blame?

Here's another thing. We don't blame the Enemy.

"I'm sorry you were hurt, Satan caused it. "

Here at the Bee House, we believe in Free Will. Satan may have tempted you, but YOU chose your path or action.

No matter how poorly one apologizes, forgiveness is your responsibility. It doesn't mean that you weren't wronged. It doesn't mean that they apologized the right way. Maybe the person isn't even repentant. But YOUR burden is forgiving. Some times it take time. Sometimes it takes a long, long time. But leave it at the foot of the Cross over and over as many times as you need to. One day you'll realize it stayed there.

A Humble Sinner,

Stephanie

PS: For those that worry, nothing in my home sparked this. Brandon and I are fine and our children are happy little clams. Julianne and Lainey have Christmas programs tomorrow. Something came up among a group of friends and I started thinking about whether or not I'm teaching my children how to apologize correctly. Just thought I'd share. ;)

A Little Blog Houskeeping...

2011-12-09T08:28:00.001-08:00

I've recently added my new blog email address on the right! Just take out the spaces if you need to reach me.

The blog may be quiet for a few days. My Auntie Karon is on the way to Virginia to visit with us. I'm SO excited!

A Pointless Waste of Time...

2011-12-08T23:59:00.000-08:00

So today's appointment was a pointless waste of time. First, our lovely hospital scheduled us with a NeuroSURGEON not a Neurologist.

Slight difference.

So he told us nothing about Xander. What he did tell us was alot of misinformation about Neurofibromatosis.

He told us genetic testing was completely accurate. It is not. If you test positive, then YES you have NF. You can falsely test negative and still have NF. It has to do with where the gene mutation is. So no, the test is NOT completely accurate.

He told us that 6 criteria must be met in order to be diagnosed with neurofibromatosis. And that is false as well.

It was just so ridiculous. But now we know why we had a feeling we should keep both appointments. If it is worth anything, the neurosurgeon today thinks highly of our neurologist we will see on Tuesday.

$27 dollar lesson and a missed naptime times two.

*sigh*

Stephanie

Here we go...

2011-12-08T09:40:00.000-08:00

It's almost a quarter to one and we have some errands to run before we head into Xander's appointment.

We appreciate your prayers.

And this little guy also says "Dank Doooooooooo!" (Thank you!)

~Stephanie

Every Lesson Doesn't Come From a Book...

2011-12-07T18:32:00.000-08:00

As homeschoolers, we are always looking for service projects and out of the box lessons for our children.

Recently, I was thrilled when I saw the church announcement asking us to sign up for a Stop Hunger Now Meal Packing Event.

So today, we had one of those non-traditional homeschool lessons. We took our recent lesson on hunger a step further. Some people might think that is too deep for young children, but we don't. This issue is near and dear to our heart especially since a sweet friend of ours just welcomed a 10lb 6 oz, nine year old girl into their family as their forever daughter! No, that is not a typo. It is exactly what precious Katie weighed at 9.5 years old.

Hunger. Nine and a half years of it. I can't imagine.

Tonight, we served alongside our girls at our church. First, our normal Wednesday night church meal was replaced with a meal that cost a quarter each. We had beans, rice and cornbread instead of our usual fare.

Our children ate it willingly but said that they can't imagine eating it everyday. They found out that this food was a greatly treasured meal for others that are just happy to see food.

Can you, as an American, imagine? I confess, I often look through a full pantry and don't see something I *want.* I can't imagine looking through an empty pantry with four little mouths standing nearby, hoping for anything to eat. Oh Lord, please forgive me!

After our meal, we went to the gym, and donned red hair nets. This was a bit of comedic relief. Brandon had a friend snap the picture at the beginning of this blog so we could remember today always.

Both girls were able to work at our station with us. In fact, we borrowed two other kiddos to make a full team. I think we had the largest adult to child ratio, but that is okay! We believe that many hands make light work and that little hands are capable too! ;)

It was an assembly line. I opened the bottom end of the ziplock bag, Julianne put in a vitamin packet, Brandon put it at the bottom of a large funnel, Micah (a child we borrowed) poured in the dried vegetables, Lainey poured in soy protein, Kinsley (another borrowed child) poured in rice, Brandon removed the bag and stood it up in a bin. When we had four bags completed, Pam ran the bin to teens from our youth program and they weighed the bags and adjusted as necessary and then adults across the table from them, sealed the bags with a heat sealer.

Every now and then a gong would sound and we would stop and cheer. Brandon and I brought clappers and noisemakers and were told several times that our team had the most team spirit.

About 500 volunteers (5 years old and up) packed 40,000 meals in about an hour and a half.

YES! FORTY THOUSAND!!!

The meals we packed will be combined with the meals that other churches are packing and then they will be sent overseas. I believe we were told that 280,000 meals are sent at a time. And at that time, we'll find out what country they are going to and which ministry will be distributing them.

Most of the meals go to schools, orphanages and disaster relief. The meals have a shelf life of 3 years.

We've already started praying for our meal recipients. I can't wait to do a little study on whichever country they end up going to. We'll find out as soon as they get to 280,000.

On the way home, the girls were pumped! They loved helping others. They thought about how they have never missed a meal in their lives.

A valuable lesson was learned tonight. And it didn't come from a workbook. It was real and present in their life and created life long memories. I'm so thankful that we had the opportunity to do this and can't wait to see where else God can use us.

Humbly,

Stephanie

PS: Xander's neurology appointment is tomorrow at 2pm. Please be in prayer for us. All the children will be attending because we were unable to attain childcare. Please pray specifically that we will have ample time with the doctor to have our questions answered and that our children will sit quietly during the appointment.

My Deepest Desire

2011-12-04T18:57:00.000-08:00

I've taken quite a bit of time to process my thoughts over the past few days.

Not only am I bogged down in my thoughts about Xander's upcoming appointments and procedures but Annalise's first birthday is coming up.

In a recent prayer/cryfest I said that all I desire is to is to be found faithful.

That is it!

No matter what this world throws at me... I desire to be found faithful.

No matter how hard life gets... I desire to be found faithful.

No matter how scary things look... I desire to be found faithful.

No matter what I'm asked to do or go... I desire to be found faithful.

Would I like a life without trials? I don't think so. Most of my faith building moments have come out of trials.

Am I begging for a trial? No. I think there will be enough in this world. No need to heap on more!

I have been reminded over and over by fellow believers that God hasn't left us. He loves Xander more than I do.. even though that is hard for me to fathom as his mama! No matter what the tests and procedures say, God is still good and faithful. He still is the Great I Am.

Of course, we are hoping with all of our might that this whole thing can be explained away without having to walk the Neurofibromatosis road. We are still praying for that.

But, if we are sent down this path.. all I desire is to be found faithful.

One day, when I'm called to Glory, I desire to be told, "Well done, good and faithful servant." (Matthew 25:23)

Praying I'm Faithful,

Stephanie

Show Off!

2011-12-02T10:28:00.000-08:00

My outlook is much better today. Last night I confessed my worry to Brandon and he quickly reminded me that worry could do nothing but make things look worse and stress me out. Oh I was feeling the results of stress for sure! I had eaten very little in the past few days, I had a nervous stomach, my hands shook, I had a flare of cluster migraines and my eyes burned from crying so much. I was grouchy and withdrawn and I have slept very poorly.

We prayed and looked over the list of pediatric neurologists covered by our insurance and one caught our eye. We decided that we would call that office first thing this morning. But if we couldn't get a decent appointment we'd call them all, if it came to that and/or call our family practitioner to ask him to refer us professionally since that often gets you a closer appointment.

Last night I emailed a very special friend of mine, Maureen, and asked her to look over the list for us. She is a nurse practitioner and a mother of 5 living children (expecting #6 soon!) She gets it. She told us she had heard good things about the same doctor that caught our eyes earlier.

I slept pretty good once I fell asleep. And this morning we called that doctor's office. Brandon asked what their first available appointment was, and the gentleman said "About 4 weeks."

Brandon said we'd take it. (Much sooner than February!) He took our information and Brandon explained our situation. I prayed for favor with this man, and he put Brandon on hold to "double check."

He came back with an appointment in 11 days, on December the 13th. Much sooner than 4 weeks. Brandon thanked him profusely and they hung up.

We sat on our bed amazed at what just happened. I whispered, "Only God, Brandon.." and at that very moment we realized the light was flashing on our house phone, indicating that we had a voicemail.

Brandon called the voicemail and heard wonderful news.

An office he called yesterday was calling to notify us that they had reserved a time for Xander to be seen on December the 8th!

December the 8th, God? Now you are just showing off. *chuckle*

We quickly called back and let them know that we absolutely wanted that appointment and double checked that they do accept our insurance (they aren't on the list that I printed last night) and they do accept it.

So now we hold not only ONE appointment in the next 12 days, but TWO. Only God!

Brandon and I discussed which one to keep and for now we are keeping both. We may need a second opinion and since these appointments were both divinely arranged, we'd hate to give up one and then truly have to wait until February. Of course, if things are satisfactory on the 8th, we will call promptly and cancel the other one, possibly allowing another desperate family to have their child seen as soon as possible.

We also witnessed another show off moment. Two days ago, Brandon took the first available endoscopy procedure date and time.

It could be a coincidence that I asked my aunt to come in December this year instead of November, but I don't believe in coincidences.

She arrives on the 9th and is planning to drive back to Georgia the 13th.

Since my aunt will also be here on the 12th, we do not need to arrange an additional sitter or be placed in a position to decide which parent stays home with the other three children.

We have braced ourselves that Xander will most probably have a sedated MRI scheduled at his neurology appointment on the 8th. Perhaps we can have both the endoscopy AND the MRI done at the same time on the 12th only requiring him to be sedated once.

Also, if we do need that second opinion with the second neurologist on the 13th, my aunt has said that she will extend her visit one more day, so the majority of our childcare will be covered.

We are hoping to have some coverage on the 8th so that Brandon and I can both attend the neurology appointment downtown, without taking all of the children into a hospital during flu season. Could you pray for that childcare need?

Now, I'm off to have my weekly date with Maureen. She comes over every Friday on her lunch break, since we moved down the street from her office. Another not a coincidence. ;)

Mama Said There'd be Days Like This..

2011-12-01T17:45:00.000-08:00

Last night, after we got the news that blindsided us, we gathered our things and headed to church. We had a previous engagement scheduled and felt that we needed to keep our commitment. So we went.

Our friends knew right away that things were not alright. I only managed to tell one or two without being overcome with tears and asking Brandon to speak for us.

Eventually I was able to go back and explain more clearly to those first few friends.

I came home exhausted. My eyes burned from crying and I had a pounding headache.

Brandon and I went to bed early (for us.)

This morning I woke up and quickly remembered the news from yesterday. I wanted to pull the covers over my head and hide for the entire day, but eventually managed to drag myself out of bed. I started our morning routine.

Brandon received a call from Dr. V's office saying that he didn't have a preference for a neurologist and that we could check with our insurance and see who was covered or we could go back to our family practitioner and see who he recommended.

Our insurance allows us to self refer. So we got out our list of covered doctors. We don't know of anyone that has used a neurologist here in Richmond, so we will have to trust that God will guide us to the right one. Brandon called the first one and explained our situation and was given an appointment date in February. We found this unacceptable and kept calling around.

Finally, one lady had mercy on us and said she would call us back with a date after Brandon explained that February is a really long time to wait and we were desperate for answers for our oldest son.

So we waited all afternoon for her to call back. That phone call hasn't come.

I packed all the children in the car and went on a mission to find Solomon some shoes because I just could not stand to be home waiting for the phone for another second.

I think the lady at Stride Rite thought I was insane. I felt paralyzed to make a decision and sent a picture of our choices to Brandon's cell phone via text wanting him to tell me what to pick already. Finally I just asked her which ones were available in his size and bought the first two that she listed.

I walked next door to see if they had black leggings at Gymboree for Julianne and the super perky sales associate told me that no, they have every color in the rainbow but not black. I mumbled thanks and walked out.

As I drove home, I missed the exit I needed, twice. "RECALCULATING!" my GPS shouted at me. My head was pounding and I cannot explain the relief that came over me as I pulled into our shared driveway. I practically ran into the house and locked the door behind me.

I changed the boys and put them down for a late nap and then went on the prowl trying to find my Imitrex so I can attempt to fight my migraine.

And here I sit on my bed, wearing mickey mouse pajamas, with a cold glass of sweet tea, trying to keep my mind from wandering to the unknown. I'm wrestling with thoughts of whether or not I should send Xander's birthmom a letter letting her know what is going on... or if that would only serve as torture for her as she waits for us to find out.

I'm desperate to reassure her that everything will be okay. That the family that promised to give him the life she felt she couldn't, is going to make this okay. But I can't. I'm a human mama, not a Supernatural Father.

Days like this make me want to crawl under a rock and hide. Hopefully we get a decent appointment date for Xander's neurology referral soon.

Hopefully.

~Stephanie

Blindsided...

2011-11-30T17:50:00.000-08:00

Example of a Cafe au Lait Birthmark

We were blindsided today. Today Xander had his pediatric gastroenterology appointment. I figured it would be a general intake appointment... you know.. give medical history, talk about symptoms and dietary habits. And then the doctor would order blood work and testing. So instead of dragging four children to a medical appointment to be crammed into a too small room, and possibly be distracting, I stayed home with Lainey, Julianne and Solomon.

But things didn't quite go as we expected.

All of the above happened. And Brandon was also given three referrals that we need to follow up with.

One is an allergist. We figured that was going to happen. We know of three food allergens already. So it is a possibility that there is something he is eating that we haven't realized is a culprit.

Brandon got orders for blood work (FIVE tubes!) and set up a time for a (sedated) endoscopy.

And then Dr. V saw Xander's birthmarks. Xander has a Cafe au Lait spot on his arm. He's had it since birth-- well.. at least since he was a week old, since that is when we were matched.

But recently it has gotten bigger and he's had new spots show up. But since we knew what they were, we didn't think much of it.

Dr. V grew very concerned. He says that Cafe Au Lait marks that are getting larger or becoming greater in number can be a symptom of Neurofibromotosis.

Blindsided.. right there in our livingroom when Brandon called to report back.

The tears flowed. I shook and felt like I was going to be sick. The room started to spin. I called my aunt and she couldn't even understand what I was saying. I repeated myself over and over until she could put the pieces together. Eventually I could speak intelligibly.

When Brandon got home, he told me that Xander sang "How Great is our God" the whole way home.

We might have been blindsided, but God wasn't. God knew and He isn't leaving.

Let's look back and see how far God has brought our baby boy:

His birthmom made an adoption plan for him instead of aborting him.

He survived his birth and withdrawal.

He was matched with parents that continue to push him instead of using his birth circumstances as excuses for him not to try his best.

He was spared from contracting Hepatitis C.

He has shown NO developmental delays.

God's hand in Xander's life is apparent. And I'm choosing to cling to that as we pray about the journey ahead.

Clinging,

Stephanie

Dear God...

2011-11-29T22:24:00.001-08:00

Dear God,

I know a lot of people write to Santa this time of year, but I believe in You, not Santa. I've seen You do amazing things and I'm hoping for some extra Christmas cheer this year.

I'm super thankful for my children, but is there anyway that You could give us good news before Christmas? As I watch the days tick by, I've come to grips with the fact that most likely, we will not have a new blessing this year, but could we at least have some news about a match? Or maybe just a glimmer of something so we know that we are still on the right path?

We've continued to inquire about some children without committing ourselves to any one agency and we've not heard much back. I check my voicemail and email like a maniac and nearly had a panic attack when I realized that my cell phone rode in the car with Brandon to work today. And then I overheard a conversation today that was like a knife in my heart.

I love You and I want You to have the glory. In Your most precious Son's name, Amen.

Tearfully,

Steph

Comments

2011-11-25T19:48:00.000-08:00

I think I finally figured out the comment issue that seems to have been a common theme.

Hopefully everyone can comment. If you do choose to comment under Anonymous try to leave me your first name. :)

~Stephanie

Thanksgiving 2011

2011-11-24T08:00:00.000-08:00

While this Thanksgiving isn't what we pictured just a few short months ago, I still have a lot to be thankful for.

A- Annalise: She taught me that we are willing to jump whatever hoops it takes for our children. Even if it doesn't work out the way we hoped, Brandon and I jumped and were willing to continue. She opened our eyes to more special needs.

B- Brandon: I am super blessed with a loving husband that extends grace on a regular basis. He knows exactly how to keep me together and somewhat sane. ;)

C- Christ: Years later, I'm still astonished that Jesus Christ died for little ol' me.

D- DeLainey: The one who made me a Mama at nineteen years old. I wasn't sure I was able to be a mom-- or a single mom. But she gave me the strength to persevere a lot and made me realize how strong I could really be.

E- Egg Drop Soup: My old faithful, comfort food. Yum!

F- Friends: I have the best friends a girl could ask for. I'm blessed with old friends that I've reconnected with, long term friends and new friends.

G- Gloria Jean's Hazelnut Coffee: My favorite brew in our new Keurig. The appliance was supposed to be Brandon's new toy but we use it about equally.

H- Homeschooling: I am thankful everyday that homeschooling is legal in the United States. It has been a huge blessing witnessing my children learn and I'm thankful that they are getting a Christian education.

I- Internet: I have no idea what I would do without the internet. If I had to guess, I'd approximate that I google about 10 things a day. I use the internet to glean ideas, stay in touch and research tons of things.

J- Julianne: We ached for a baby together and finally our deepest desire was granted. The pregnancy was very rough and I spent several months on bedrest and many hours in various medical offices for the different specialists that helped keep us safe. She was worth it all.

K- (Auntie) Karon: Auntie Karon has played a major role in my life. She started out as my mother's best friend but over the years she has really become more of a mother to me. She is one of my best friends, one of my confidantes, and fills a grandmotherly role in my children's lives.

L- Life: I've had a few scares in the past that leave me always thankful for my life and good health.

M- MOMYS: Mothers of Many Young Siblings. These ladies are the sweetest, nicest group of women. They regularly remind me to put on my big girl panties and try again. I've gleaned such amazing answers to logistical problems from them and they are the ones that were my cheerleaders for nursing Solomon.

N- Natalie: Our new babysitter. We got a date night for the first time in... um... forever! We didn't scare her off with our four children and is willing to return. Score one for Ma and Pa!

O- Ovulation: It isn't a given in my life. 'nuff said!

P- Prayer: I'm thankful that I can pray no matter where I am. Sometimes I pray aloud, and sometimes I pray silently. Sometimes I pray a long prayer and sometimes I pray one word requests ("Help!") But God is always there.

Q- Quilts: I had a grand idea to use some of Brandon's old dress shirts to make quilts and my Auntie Karon made it happen. The children love snuggling under theirs and I love mine too.

R- Richmond: A place that tested my patience for quite sometime. But once I got past the rough spots, I fell in love. Right now I can't imagine living anywhere else. But I've also learned to never say never.

S- Solomon: Our laid back, observant "bonus" baby boy. He still prefers mama and is pretty stubborn and vocal about it. It's very funny coming from such a laid back fellow.

T- Tools: I used a power tool for the first time yesterday and I had no idea I'd love it as much as I did! Lookout world!

U- Umbrellas: Whoever thought that up, is a genius in my eyes. I hate getting rained on!

V- Vacation: We've been on three vacations in the last 12 months. We made amazing memories and enjoyed spending time together. 2012 has no vacations on the docket. :(

W- Women's Bible Study: I learn so much every time I go (even if I haven't read my assignment.. ahem!) I've gotten to know the women in my new church at a deeper level through our study.

X- Xander: My first son. My *very* busy toddler with the cheesiest smile I've ever seen. Our adoption that went so smoothly that there isn't a way to explain it, other than to say that God's fingerprints were all over the process.

Y- Yes ma'ams: There is very little that can make my heart melt like a well timed yes ma'am. Xander has finally gotten the hang of ma'ams-- everything was sir!

Z- Zany jokes: I think I'd heard every Laffy Taffy joke and Knock Knock joke out there. But I love the laughter that ensues. I vowed that my children would grow up with laughter in their home and so far, so good!

Thankful for Him,

~Stephanie

DeLainey's Orthopedic Adventures

2011-11-20T21:08:00.000-08:00

(Lainey loopy pre-surgery..)

I've been meaning to write about our adventures with the girls orthopedic interventions.

Here goes!

As mentioned before Lainey was scheduled for surgery on October 13th to have her gastroc muscle released.

She was a little naive about surgery and what would happen. But in her usual happy go lucky way she made it through.

She drank some meds that made her loopy and she was wheeled to the OR. They did her IV after she was out. Thank Goodness!!

And then we waited... and waited. The surgery was estimated to take about 45 minutes to an hour which to my impatient self meant "forty five minutes, Mom!"

So I got antsy when it was really an hour. Right as I asked Brandon to ask for an update, we saw Lainey's orthopedist, Dr. K.

She said it went really well and that in few minutes we'd be escorted to recovery.

Lainey was still very sleepy. Her big blue eyes looked like Dopey. They crossed and went different directions and did all kind of silly things! The first thing she asked for was something to drink. (That apple didn't fall far from the ol' tree!)

She was in a good bit of pain, so it took a little while to get that under control and just like that, we wheeled her out of the hospital in a wheelchair and after a little drama got her into the van. She was very scared to put pressure on her legs at all and that caused a few alligator tears to roll out. The casting was also stretching out her hamstring muscles which wasn't exactly pleasant.

She asked for an adult Chic-Fil-A combo and we obliged. Then we parked her on the couch and she requested to watch Extreme Home Makeover.

She dozed in and out of sleep that night and only stayed on the pain medicine (tylenol with codeine!!!) for a few days. Sleeping was the only thing that was super challenging because she had to wear braces on her knees that kept her legs completely extended.

After a few days she was able to hobble around. After 4 weeks she had her casts taken off. Her poor skin looked rough (eczema and some skin breakdown too) and the incision had no closed completely. This worked in her favor and instead of getting another set of casts, she got two soft cast boots that can be removed for bathing. She was much happier especially when she found out she didn't have to wear the knee extender while she slept.

~Stephanie

PS: Did you notice the non-skid part of her hospital socks are on the tops of her feet? Oh yeah.. did I mention she was really, really loopy? She said they had to be on top so they could look at her. ;)

No news.. is no news...

2011-11-17T14:37:00.000-08:00

The last time I spoke to the adoption lawyer she told me that another family was in the process of meeting the requirement to adopt the little boy we inquired about.

She said that she would know within 2 days if it was going to work out for them and if it fell through she would call us.

And the phone hasn't rang.

So we have no news.

Honestly, we are thrilled for the little boy.

But we are sad.

Thanksgiving 2011 will look much different than we had planned. This Thanksgiving is Annalise's first Thanksgiving and we looked forward to celebrating with her. But we won't be able to.

We are trying our best to temper the sadness by reminding ourselves that we have much to be thankful for. I have four great children, an amazing husband, a warm cozy home. My husband is gainfully employed. We have the freedom to worship our amazing God. But in the quiet moments a lump rises in my throat as I walk past our empty baby swing, or our unused changing table.. and I realize that there is an empty spot in our family and in our hearts.

Some days the tears stream down my face freely.. other days I seem okay.

But we will make it through this too. Even in the sadness we are learning so much.

~Stephanie

A Less Cryptic Message

2011-11-15T07:20:00.000-08:00

My last post was intentionally cryptic. Unfortunately, I have to be that way until we know everything and have made some decisions. What I can say is that the direction that our family is headed, is changing and it will be quite a surprise to most of our friends and family.

As usual, I'll share more when I am able.

I can tell you something else though. Brandon and I submitted our adoption profile for a little boy yesterday. It was a very hard day emotionally. But I don't think waiting longer would have made it any easier.

I found myself bargaining with God. Have you ever done that? I caught myself saying "Okay God, I see the way that You've presented this information to us, and after prayer, we feel like we are supposed to send our information in. But this time? When we are obedient to You.. errr...again... can You try really hard to make this work? Can You spare us more pain and brokenheartedness?"

I know alot of people don't admit to trying to bargain with God. But I made a commitment when I started this blog that what I am, is what you get. A learning human. And humans really don't like to hurt. We tend to not like pain and tend to do what we can to avoid it.

I immediately felt convicted for trying to bargain with God. And after a lot of prayer and tears, I changed my prayer. Instead I was saying "God, I feel You've shown us this little boy for a reason. I don't know if we are only meant to pray for him. Or if we are to ultimately become his parents. I know that most roads worth traveling are not easy. But we trust You. We love You. And we are so excited to see what You have for us."

And then peace swept over me.

I'll say it again. This is God's adoption. Sure we are the people filling out paperwork, networking, etc but ultimately God knows who is meant to be the next Bee. So we wait. And we hope.

Electricity Flowing

2011-11-05T23:45:00.001-07:00

I can't share much right now but there is a tiny bit of movement here in the Bee Household. You can almost feel the electricity in that air!

If you think of us, would you pray for us on Monday afternoon? I'll announce as soon as we have something to announce. :)

I'm so thankful for every one of you that pray for us even during times that I can share so little. It is truly appreciated.

I have much more to share but I need to get some pictures first. The Bees have been busy with service projects and we've done some rearranging to make our modest rental home work for our lifestyle. I still love our last floor plan so much more, but the location and the privacy of this home is what grabbed our attention.

I'll write more soon!

Stephanie

Be Still...

2011-10-31T02:32:00.000-07:00

I love observing people to see how they are wired. I especially love watching the people close to me and predicting their response and then seeing if it plays out like I thought it would.

Some people make really quick decisions and make them well.

Some people go back and forth, analyzing every option over and over. Then they second guess their decision after they've made it-- even if it turns out well.

I'm both in different situations. Sometimes, I make those quick decisions and sometimes I mull things over, changing my mind back and forth. Sometimes I allow the indecision to stall things past when I have the capability of actually making a choice. Other times, I make a snap decision and it works out well.

Brandon leans more on the quick decisions that are made well. He is drawn to employment positions that require this. He loves fast paced work. And luckily for me, he loves fast paced homelife.. life with four is anything but slow. LOL!

Why am I sharing this you ask?

Well.. in my previous post I asked for you to pray for us as we prayed for direction. Brandon and I both seemed to be getting the same answer.

And honestly both of us having the answer so quickly, made us wonder if we were reacting in fear.

We have the opportunity to commit to one agency for a fee and become an "official" adoptive family for them. The fee is pretty significant to us but we trust this agency and the adoption coordinator. The adoption fees are within our adoption budget. Our homestudy is written far more open than the current adoptive families which means that our adoption profile would be shown often.

And yet we feel like we are being told to "Be Still."

I know, I know.. I scratched my head at that one too and so did Brandon.

I can't tell you how many times I've wondered "Is this fear talking, or You God?" I've asked God this question repeatedly. And yet, Be Still continues to be what we are supposed to be doing.

Honestly, we feel at peace with this decision. We are still eligible to adopt. But for now, we are attempting to listen to the message and savor life with our amazing four children and live in the moments.

Trust me, I know how bizarre this all sounds. When I started my blogging journey it was to document my life -- the good, the bad and the seemingly crazy.

Somehow we do crazy really well.

~Stephanie

Best News in a Long Time..

2011-10-21T18:29:00.000-07:00

Katie is no longer an orphan! See here...

In Bee tradition, I danced right where I was.. which happened to be the carwash.

Got lots of funny looks, but I don't care.

I promised.. just as God promised Katie to the Musser family. ;)

Right or Left?

2011-10-16T23:49:00.001-07:00

Things have once again been crazy busy.

In the last 15 days, we've had a major car repair on our one vehicle, had issues with the well not working in our new rental, had a small air conditioning issue, had a 2 hour cell phone conversation with our internet provider that required Brandon to run into the middle of the yard to get the instructions and then run back in and work on the computer, back and forth, with some calls dropping and having to call back in, had an extra 2 year old for a few hours one day recently, cracked the windshield of our one vehicle, had a day surgery event, had 6 tubes of blood extracted from a fearless two year old, were contacted about an out of state adoption situation possibility and had a one night fever.

One day it will slow down. I know I keep saying that, but one day we'll really start coasting.. right? If not, please keep that answer to yourself. This is how I get through the crazy days.. telling (lying?) to myself saying that it won't be like this forever...

Now we are preparing for my aunt to arrive this week which means that everything truly has to be unpacked because she will be staying here with our children as we go on an adults only getaway.

I'm so excited.

Brandon and I look forward to the opportunity to reconnect and talk some more-- especially without little ears around. We just want big ears around-- big MOUSE ears. ;)

Brandon and I have big decisions to make in regards to our adoption journey. Big, HUGE decisions. We want to hear God loud and clear. We want to be on the correct path!

At this time, we aren't discussing what those choices/decisions except among ourselves, but we would covet your prayers. God knows and once we decide which path to take, you'll know too.

In the meantime, if you think about us, would you pray for us? We appreciate it!

~Stephanie

Stumbling or Falling?

2011-10-09T10:08:00.000-07:00

Oh I love when something happens with my children and I feel that nudge from the Holy Spirit! All morning I've been reeling and writing this post in my head!

For those of you that haven't gotten to meet our Julianne, she is such a blessing. One of the things that has amazed me in raising a larger family has been watching the similarities and differences among our children. Gifts and areas of opportunity sometimes overlap but sometimes they are completely different from child to child.

Our Julianne is a sweet girl. She can be a little shy. She makes a friend easily and her love language is touch. I can calm her in a matter of moments if I can touch her. She loves it when I rub her back during service, or hold hands with her. Or when I brush her hair out of her face. She gives out hugs often. She dances to her own little beat and is witty beyond her years.

She is also very afraid of heights. I'm not talking rollercoasters or skyscrapers, even stairs frighten her.

At our church, we have several flights of stairs that you can go up or down depending on which area of the church you are trying to get to. It's taken me a few months to figure out these stairs because I am directionally challenged. For Julianne, these stairs challenge her every week.

Most weeks she stands at the top with tears in her eyes and we have to coax her down. She will step down, then bring the other foot to the same stair, then go down to the next stair. She doesn't alternate feet and stairs. Nope. One stair at a time. All while desperately clinging to the rail, with her Bible bag draped on her arm. Most of the time, she will leave her hands planted on one part of the rail and step down and have her body all stretched out because she is scared to move her hand down the rail a little. We've shown her how to slide her hand down so that she doesn't even have to let go. Cognitively she knows she has to move her hand down, but she usually takes quite some time before she will do it.

But this week... this week, she started down the stairs. And she immediately started to get upset as she yelled out "I'm falling!!!!" I was in front of her on the stairs walking down and Brandon was behind her. She has never fallen down these stairs or any that I can remember.

She wasn't really going anywhere. She was still standing, grasping the rail so hard that her little knuckles were white.

Brandon called out down the stairs, "Baby, you are okay! You just stumbled! You didn't fall! Daddy is right here..." And a little tear slipped out onto her cheek.

Stumbled.. you didn't fall and I'm right here.

And I felt that quickening in my soul...

We got down those stairs and I stopped her right before she walked into large group time, to wipe her cheek and comfort her.

And I told her "You did it!" She flashed a quick grin and said "Yup! And I didn't fall! Daddy was there!" And I nodded yes.

And then her grin disappeared as quickly as it had arrived.

"But Momma, what if I did fall?" I assured her that if she had fallen, Daddy would get her and pick her up and dust her off... and that she could try the stairs again another day but she had to keep going and keep trying.

And I felt that quickening again.

I walked to my class in my own little world trying to process what was going on in my heart.

Here's the application:

No matter how many times we walk the stairs, they may still look scary. Just like Julianne's Daddy was there ready to catch her, so is God. Just like Julianne was scared to fall, sometimes we are too. Sometimes we think we are falling and we are really only stumbling. Sometimes we cling to things so hard, that we can't do what we are meant to do. Julianne was desperately clinging to the stair rail so hard that she couldn't reach the next step. Instead of sliding her hand down the rail, she was stuck. But if Julianne would have skipped the stairs and taken the elevator, would she still have learned that she can walk the stairs?

Are you taking the elevator in your life? Or are you taking the "scary" stairs? When you feel like you are you falling, are you really or are you only stumbling? If you did fall, would you try it again? Are you desperately clinging to something that is keeping you from being able to freely walk?

Father, open my eyes to things that I am avoiding, by taking the elevator instead of going the scary way. Remove the fear from me, so I can go that way. Reassure me that if I fall, You will catch me, in only a way that You can. Allow me to loosen my grip on whatever I am clinging to desperately, so I freely walk and if I must cling, allow me to cling onto You. I love You and praise You. Amen!

~Steph

The Great Picture Dump..

2011-10-05T19:25:00.000-07:00

My frustrations with Blogger have led me to not upload pictures for quite some time. Here are some recent pictures. (I'll caption them underneath the picture.)

Traveling to Lynchburg to visit friends meant that we happened to be in town for R's birthday! She had a tea party. I love this picture because it shows Julianne's REAL smile... not the fake grimace I get so often!

Julianne and Mr. D. She loves to be read to!

A and Solomon. A is the oldest of five and babies come second nature to him. ;) My boys love A and being held. Win- Win!

Sweetie Solomon :) He's getting harder and harder to photograph because he moves so fast! Those eyes still melt his mama!

Xander put his self feeding skills to test with Jello! He kept telling the jello to be still! It didn't listen. (So far my girlies are left handed and my boys are right handed!)

Brandon with three girlies. R was picking features for her fairy character for a game.

This picture cracks me up. Xander eating breakfast. Oversized John Deere shirt, no pants and camo knitted beanie with a "Ladies Man" bib. He dressed himself. I'm keeping this one for blackmail!

My Rainbow after the Storm...

2011-10-04T09:04:00.000-07:00

I'm so convinced that God gives me rainbows when I need them. They serve as a gentle reminder that He stands by His promises.

Friday, we headed out to pick up the U-haul truck and it started to rain on the way to our apartment. We had people coming to help us load up our place! I quickly asked the girls to pray that the rain would stop.

And it did.

Further down the road, I saw a tiny piece of a rainbow. It wasn't a huge beautiful arch but it was a tiny, tiny, fragment of a rainbow.

I smiled as I started thinking back to how amazingly God has provided for us during this journey.

Here are just a few of the ways that He has provided:

- We found our church right before this whole thing began. We'll be here 3 years this November. I do not find it to be a coincidence that our church was revealed to us right before this crazy ride.

- Other than our homestudy (that could still be used although we do have to pay for an update since we moved) and our travel expenses we lost very little of our adoption fund. We are thankful that God spared our tiny fund especially since almost all adoption fees are non-refundable.

- We "randomly" chose a Sunday School class when we visited this church the first time. They welcomed us with open arms and I don't think a week has gone by since that we haven't heard from someone in between church activities. These friends rejoiced with the news that we were matched. These brothers and sisters in Christ have battled in prayer for our situation when things went south. They've reached out to us. They've hugged me. They've cried with us. They've shared their own stories.

- One of our friends from our Sunday School class, helped me find my way to the Women's Bible Study. This has been amazing for me. I tearfully asked for prayer during our prayer request time one week and afterwards several women stopped by to introduce themselves and tell me their own adoption or fostering stories and promise to pray for us!

- For this move, several men and one couple from our Sunday School class blessed us with their time and packed our things into the moving truck. The next morning they came and unloaded the moving truck. It was speedy and efficient and done without a single complaint. Brandon and I are still in awe of how smoothly and quickly it happened!

- Our new neighbors are so friendly! Everyone has come to introduce themselves.

Each day does get a little easier. We've moved past disbelief. We don't understand why this happened, but we have accepted it. We are finding ourselves laughing and smiling more.

~Stephanie

PS: I know I have been lacking in the picture department. I am about to dump a bunch from our phones. So stay tuned!

The Last Post...

2011-09-29T22:13:00.000-07:00

...from this place! Tonight is the last night we are spending in our apartment on the west end of Richmond. Tomorrow we are moving to a house we are renting in a neighboring county! :)

While this will be a new start and we are super interested to see what God has in store for us, it is also a bit bittersweet.

In each room we have such sweet memories. We have memories of family meals and family game nights in our dining room. Giggles and fun in the playroom. Lots of living in the living room.

I bedrested in this home.. desperately hoping to keep Solomon in as long as safely possible.

We brought him home from the hospital here.

Xander took his first steps here.

I spent countless hours in various parts of our home nursing my sweet baby boy.

Solomon crawled here. Xander said his first words here.

My girls have had SO much fun here. Julianne and Lainey started to learn to swim in our community pool. We spent lots of time on the playground.

We hosted birthday parties here. We had company here. My aunt came here last Thanksgiving. It was also Solomon's first Thanksgiving.

We also cried a lot of tears here recently.

We even had a bit of excitement (and stress!) A hurricane AND an earthquake!

But the good has far outweighed the bad.

Each of our various homes have had numerous memories and stories within them.

I can't wait to see what this next home has in store for us.

....As for me and my house, we will serve the Lord. ~Joshua 24:15

~Stephanie

Divine Appointment: Doctor Appointment Style

2011-09-25T09:59:00.001-07:00

Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us? And I said, "Here am I. Send me!" ~Isaiah 6:8

God never ceases to amaze me. I don't know why I am still shocked. But this Friday I had yet another chill bump moment.

On Friday, I took Solomon and DeLainey to our family doctor. Solomon had a weight check and DeLainey needed cleared for surgery.

Our doctor is a really neat guy. He has this amazing way of taking input from the patient (or the patient's parents.) He's pretty laid back and relaxed. He is a homeschooling father of six children and he "gets" us and our quirks. He understands the role that our faith has in our lives.

Anyway, so he saw Solomon and said that we don't need to do any more weight checks. He examined DeLainey and filled out the form that her orthopedist had sent.

Easy peasy right?

Except I knew what the next question was going to be. We'd called and spoken with him several times about Annalise. And I knew he would follow up and ask me if we had gotten the information he requested and would ask if we had any updates.

In fact, I was so sure he'd ask that I'd prayed before we arrived. I prayed for the tears to stay in my eyes and not come rolling out on my cheeks. I prayed that I would have the voice to explain what happened yet I prayed for God to let me continue to be the huge adoption advocate that I am-- Even when my heart hurts so.

See, Dr. P has been very interested in our adoption story. Not just interested in a casual way. He's been interested in an information seeking way. Slowly over several appointments we've been able to share bits and pieces of our story.

So I let him know that Annalise was not going to be coming home to use and joining our family and I saw the emotion flash across his eyes. A knot rose in my throat and I blinked back tears.

I told him that we loved her and we have no idea why God had intersected our lives for such a brief period of time. I told him that we may never know on this side of Heaven. He shook his head in agreement.

I let him know that we are grieving deeply and that this is such a loss for us. He said he could only imagine the pain that we are feeling.

I felt the need to continue to talk, so I told him that we believe that God is good and that we can feel Him holding us as we walk this road.

And then I felt the need to shut my mouth. (HA! I know some of you are thinking.. FINALLY?!? LOL!)

He shared that he and his wife are discussing adoption again. They had discussed it a number of years ago but that it had come up again.

And most recently, they had discussed the possibility that an adoption could fail.

I got goosebumps-- right there in the office.

We talked for quite some time more. We were in the exam room for almost an hour. (Unheard of for most doctors, I know but luckily we were his last patients of the day!)

He never said how it had come up. Had it come up because we have shared bits and pieces? Is God using Xander's story or Annalise's? Had it come up because he did the children's adoption physicals? Had it come up because we came to him for advice on Annalise's behalf?

Maybe he needed to hear that it was a hard road if an adoption fails, but that God is our Sustainer? Maybe he needed to know that people do make it through failed adoption? Maybe he needed reassurance from someone who had been there and done that, and really wanted to return the t-shirt?

I may never know. But I know that God is still using me- as broken and grieving as we are. As imperfect as this story is and as imperfect as I am-- He can use this and He can use me.

Use me, Lord. Send me!

~Steph

What I was Trying to Say..

2011-09-24T23:28:00.001-07:00

(Photo Credit)

Last week, when I was doing my reading for a Women's Bible Study, I came across a passage that instantly made me think of a blog post that I made some time ago.

Except she explained it so much more clearly than I did...

Here's the passage, taken from the Resolution for Women by Pricilla Shirer.

"Maybe it feels as if choosing contentment is a simultaneous choice to quell your desires and silence your future aspirations, to quit ever hoping for more. On the contrary, contentment is the equilibrium between the enjoyment of life now and the anticipation of is to come. Contentment serves as a guard against desires gone wild. It is the key to unlock you from the bondage of unrestrained longing that wells up, within your heart and inevitably begins to control your life, making you a slave to what you don't have instead of a fully engaged participant with what you do. It is the faith-filled belief that what God has bestowed on your now is worth gratitude and appreciation, not merely because it is enough, but because it is good.

By choosing contentment, your not getting rid of your desires; you're just demanding that they assume an appropriate, humble position in your life, not bossing you around like a tyrannical dictator forcing you to submit to his ever-growing and ever-changing list of demands. It means you no longer allow your yearnings and aspirations to control you, to rob from you the full use of gratitude for what you've currently been given, leaving you unable to enjoy this because He hasn't seen fit to give you that.

Making this resolution of contentment will offer you an opportunity to look forward to tomorrow with peace and ease and an appropriate level of anticipation instead of the frustration and hurriedness that often accompanies our glances towards the future. It will be your ticket to live with goals and ambitions inspired by His expansive, mind-blowing will, without having to sacrifice today's blessing.

In staying surprisingly satisfied, you actually receive the best of both worlds. You give yourself permission to enjoy fully the things you have, the person you are and the life you're currently living while continue to harbor the dreams that keep you growing and stretching into the future..."

This lesson couldn't have come at a better time....

~Stephanie

Frequently Asked Questions: Adoption Loss Edition

2011-09-19T23:35:00.000-07:00

This post will be honest and raw. It's just kind of where I am right now.

So, how are you doing?

Days are okay. The busyness of our home is a blessing. We are busy homeschooling DeLainey and Julianne, Xander is adding new language daily, Solomon is on the cusp of walking any day and fall programming has started at church adding AWANA and Bible Studies into our schedule. We are also busy packing for our move.

I still jump when the phone rings and check my email often. Every day I wake up and walk through the house expecting to see her things that have now been packed away.

Every now and then, something comes up that takes us by surprise. Like when I got an email asking to reschedule the appointments I had to cancel.

Nights are much worse. When it is quiet and the busyness has died down, I have more time to think. Sometimes I find myself over analyzing each phone conversation or email trying to see if there were signs that this wasn't going to work out.

The only thing we have found that might have been a small sign was a quick questioning when we were visiting. During the last day we were there, the director mentioned that another agency worker had brought up that we said that we would open to adopting again. It was a response to a question that we were directly asked by the foster care worker.

She asked us to clarify our stance and we explained that if once things were settled at home and Annalise was medically stable and thriving we felt called to adopt again, we would be obedient and that we were open to another blessing through pregnancy. The director pressed us further asking if Annalise would be the last child in our home and we said that we couldn't guarantee that, but that we weren't out just collecting children. We told her that we love and care for each of our children as individuals. The director seemed satisfied.

We felt at the end of that conversation like everything was smoothed over. It was never mentioned again. But that conversation haunts me at night. Should we have been more vague? Should we have said that she would be the last child and later said "Oh, oops, we changed our mind?" Deep down we feel like we did what we should have. We were honest. But at night the thoughts start swirling in my head.

Nights have gotten a little easier. I shared on Facebook that nights were hard and that is when I think of Annalise most. Several friends have committed to pray for me and I believe that the prayers have made a difference. I know over time things will get easier and that things like this just take time.

Are you still going to adopt?

For now, we still feel called to adopt. Some days the path seems a little unclear (domestic, foster or international?) Some days we are frustrated and hurt and consider stepping off of the path. But for now, we are still on the path.

Where are you in the process now?

We are back to waiting for a match. Our profile book was sent to the local agency we used to adopt Xander. They asked for a second copy and that book was sent to their satellite office. We have a great relationship with the adoption coordinator there and trust the agency. Right now, we are not actively seeking to match with any other agencies.

Are you scared to try this again?

Truthfully? Yes, sometimes. We have now seen the best and the worst of adoption. We've worked with a wonderful agency and a terrible agency. Thankfully, we have fabulous memories of Xander's adoption. We try to use those memories to help us keep perspective. Adoption does work and can be a wonderful experience. When and if we do match again, I'm sure some feelings will bubble up, but the adoption professionals that we work with have told us that it will be normal and they will help us through.

We appreciate your thoughts and prayers,

Stephanie

More Comfort through Song Lyrics..

2011-09-16T22:24:00.000-07:00

Brandon and I bought this compilation CD just a few weeks ago. We bought it on a whim and had no idea how comforting the words would be...

Held by Natalie Grant

Two months is too little

They let him go

they had no sudden healing

To think that providence

Would take a child from his mother

While she prays, is appalling

Who told us we'd be rescued

What has changed and

Why should we be saved from nightmares

We're asking why this happens to us

Who have died to live, it's unfair

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

This hand is bitterness

We want to taste it and

Let the hatred numb our sorrows

The wise hand opens slowly

To lilies of the valley and tomorrow

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

If hope is born of suffering

If this is only the beginning

Can we not wait, for one hour

Watching for our Savior

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

Held,

~Stephanie

Words of Comfort...

2011-09-14T19:50:00.000-07:00

I've found comfort in a lot of words recently.

Yesterday I received a card from a sweet new friend. A friend that has intertwined her family with ours in a powerful way. Amy.. the words on the card you sent made me weep. The effort you went through to send me a card, share your intimate story of your own failed adoption, and the reminder that we both believe in the One that has planned our lives and will work everything for good in the end touched me deeply.

Brandon came home from church Sunday and excitedly told me about the sermon.. on perseverance. (I was home sick with sick kiddos.) He said it gave him goosebumps as the sermon started.

Many of you have sent messages of thoughts and prayers for our family. We are so thankful for each of you and your outpouring of messages.

When I got into the van on Friday afternoon my eyes stung. I wasn't sure I had any tears left at all. I was driving to get some groceries and I heard a familiar song that took on a whole new meaning to me. I pulled over as soon as possible and laid my head on the steering wheel and sobbed. My body shook. As the song ended, I played it again. And again. Eventually, I could sing with the song. Just a few words, here and there. And eventually, I could sing the whole song with misty eyes..

Today the same song came on as I was running errands, and I turned it up. Loud. And I sang like no one was watching. It was me and God-- an intimate worship experience in the middle of afternoon traffic. I've internalized the words. This is our song for now.

One day my song will change but for now, this is where we are. (Emphasis mine.)

I Will Praise You in this Storm by Casting Crowns

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day.

But once again, I say "Amen", and it's still raining

As the thunder rolls

I barely hear Your whisper through the rain,

"I'm with you"

And as Your mercy falls
I raise my hands and praise the God who gives

And takes away

Chorus:

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when

I stumbled in the wind

You heard my cry to You

And raised me up again

My strength is almost gone

How can I carry on

If I can't find You
And as the thunder rolls

I barely hear You whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

(Chorus)

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

(Chorus x 2)

Heart torn, but praising Him in the storm,
~Stephanie

I don't know what to say...

2011-09-10T20:00:00.000-07:00

A beautiful set of bracelets that a friend from high school made me. I put their inititals on the inside of my wrist so it is easier to read. It is my reminder of the little people that I have the great pleasure of hearing call me Mommy. The first Sunday I wore this to church, I got multiple comments about how gorgeous it was and when I showed them the inside, many of the mother's clutched their chest and said how perfect it was.

Tonight, we clutch our chests for a different reason. We are heartbroken. It feels like someone has reached inside our chest and snatched our heart out.

The last 48 hours have been a whirlwind with amazing highs and incredibly low lows. To go from the mountaintop of being told that we have ICPC approval to being told that we cannot come get our daughter, is a long way to fall.

And we've both fallen and the landing was hard.

I'd like to say that we didn't fall into the pit of despair. But we did. Thankfully, we both have amazing friends that jumped in and rescued us and set us on the side of that pit, like a lifeguard does for a drowning swimmer. They breathed scriptures over us and told us that they loved us and that they never doubted for a second that we did all we could.

We have no idea who He has intended to have join our family.

But we stand on the solid rock of His Truth.

He has not left us. He is still with us. He is Father to the fatherless. He has called us to build our family this way. He is not done telling His story. At the end of His story, He will have the glory.

I'm enraged that we could be treated so callously by a social worker. The fact that I had to explain the importance of permanency for Annalise to an "adoption worker" sucks the air out of my lungs and leaves me speechless. I ache to know that a birthfamily trusted this agency.

Everywhere I look, I see signs of her.

Clothing I washed and folded

Hairbows that were bought for her curly thick hair

Diapers waiting to cover her sweet bottom

A carseat that her big brother sat in when he was a tiny baby that I washed especially for her arrival.

A changing table that was purchased.

A crib waiting for a sweet 10 lb baby to lay in it

A stack of pictures that I carry everywhere with me, so I can show my friends who we are eagerly anticipating and constantly praying for.

A stack of papers that we gathered and completed to complete this process.

A tiny suitcase with a coral homecoming dress, matching hat and shoes.

An email box full of messages about her.

A file folder with her name on it.

A blanket a friend crocheted especially for her and mailed and a tiny onesie sent from across the country.

The dress I wore when we met her.

I know God is going to turn these ashes into beauty in only a way that He can. He loves me. He loves Annalise more than is humanly possible. He saw that we loved her sacrificially, just as we love all of our children. We were willing to do whatever it took to bring her home and care for her the best way that we could. We were obedient.

We still carry her in our hearts. We look at her pictures with fondness. We are better people because of her. We will never forget her smile and the way that love took us in when we met her.

And so tonight I go to bed with tears and swollen eyes and hope that I dream about her.

Heavenly Father, please help us pick up the pieces. Guide us down the path that You desire for us as a family to travel. We thank you for the brief visits that we were allowed to have with her. Thought we ache, we trust Your goodness. We love You and we praise You. Amen.

~Stephanie

Urgent Prayer Needed...

2011-09-09T10:08:00.000-07:00

It's been a whirlwind here at our home this morning. I don't want to jeopardize anything by giving details but we would appreciate your prayers for this process to be smooth and without any further difficulties.

I feel like the rug has been snatched out from under us. :(

~Stephanie

UPDATE: We are CLEARED!!!!

2011-09-08T16:15:00.000-07:00

After I found out that we had to provide more information to the state something changed within me. Deep down, I started to wonder if we would be approved to adopt Annalise at the state level. I wondered if we would ever get ICPC clearance. After all, they had already gone out of the norm by asking us for a child-specific homestudy and that required an addendum and more documentation on our part. Fear had started to creep in and I did everything I could to keep it at bay.

But I carried a tiny piece of fear with me. And that fear haunted me at night, when the house was quiet and everyone else was sleeping.

Today, ALL of that fear is finally GONE. I refreshed my email at 5:15pm just as I was sitting down from an afternoon of doing the seasonal closet switcheroo. And I saw it! There was an email from our socialworker with the local agency telling us that she got a notice that we got approval today.

Of course it was after business hours when I read this glorious email. So I immediately called Brandon and told him the news. And we both started dialing every number we had for either of the agencies and their respective socialworkers. We both left several voicemails, just in case.

We are hoping to find out tomorrow when we can travel and take placement of our newest princess. And maybe, just maybe, once we know when she is coming home, we can rescue our appointment for next Thursday in Philly!

We appreciate each prayer that has been said on our behalf during this process. I can never thank everyone enough for the prayers..

Just last night, I walked into church with slightly swollen eyes and one heck of a makeup job to cover my splotchy face. I had been crying but had to attend a meeting and other obligations. I pasted a nice fake smile on my face hoping no one would notice.

It was so incredible, that several of our new friends asked if we knew anything about Annalise's homecoming yet. Almost every time I turned around someone else was asking. I blinked back tears and told them no, that we didn't know anything more. I told them that I had already cried that day and that it was a really hard day for me. And each one told me that they would continue to pray. Your caring and attention to the details of our lives has not gone unnoticed. We are humbled that you care about even the tiniest details.

Thank you so very, very much.

~Steph

Cancelled...

2011-09-08T09:05:00.000-07:00

Yesterday, I did something that I prayed I wouldn't have to do.

I had to call and cancel Annalise's appointments. When we matched in July, I was given a list of specialists that we would need to set up appointments with. I was never given any dates for when Annalise would be coming home but was asked to find specialists and set up care with them.

So I guessed. I thought surely, surely, by September Annalise would be home.

That first appointment was scheduled on Friday, September 9th. And we've had to come to grips with the fact that she won't be home by then.

And then, I had to cancel the appointment at CHoP, for next week.

We are bummed. I've cried. But our hands are tied. We have done everything that has been asked of us.

I'm not losing hope. I know deep down, that God can still do it. He can. And as much as I want to believe that He will.. I have to be realistic and say that right now it doesn't look like she will be here in time.

I'm brokenhearted and I've cried buckets. Buckets and buckets of tears.

And I'd do it all again- over and over. She is worth it. She matters.

~Steph

Hurdles...

2011-09-07T21:30:00.000-07:00

Photo Credit

Last week when we were driving to Lynchburg to visit some friends (since we still had no power at Casa de Bees) I received a phone call from our homestudy agency. I was hopeful when I answered that it was good news.

I hoped it was our phone call telling us that the Interstate Compact process was done and that we needed to make arrangements to bring Annalise home.

It wasn't.

Instead, I was asked to address some specific concerns that were raised during the ICPC process. We were asked to do something that is not normally done during the ICPC process for private adoptions.

I was bummed. I was annoyed. And my frustration was almost at it's boiling point. I almost asked God, "WHY!?" We had had no power since Saturday, we were living in hotels with four children 8 and under (not exactly my idea of fun) and now this.

But I was scared He would ask me, "Why not?" Who am I to think that I'm so special that I should never have difficult or hard moments in my life?

Instead, Brandon and I discussed that we would continue to do whatever it takes for Annalise to come home. We are committed to her, in good times and in bad times. That is what parenting is about, biological or adopted, special needs or typical!

We told our friends about the hurdle that we now had to clear. They prayed for us.

Thursday, I had the pleasure (ha!) of typing a 4 page document explaining away these concerns and enclosing a 16 page document from our insurance company and a copy of a law.

I even managed to crack a few jokes with friends about how much better it would be to write this letter with a glitter pen instead of making a boring, old typed document.

I did it with grace that God provided. I did it with strength that God provided. I was almost joyous towards the end of my writing when I saw how easily the words flowed and all of the resources I needed were easy for me to find.

Before lunch on Friday, I saw the rough draft of the addendum. It was completed and mailed out the same day. (Amazing turnaround!) And now we wait some more...

Our socialworkers at both agencies have commented that we've been quick on our feet to provide the additional information and to set things up. THIS is God blessing this process, friends. Brandon and I have very few "connections" here... and yet (most of) the people we've spoken with have gone out of their way to help us or to give us information about someone that can. We continue to thank God for each of these blessings. Some may choose to see these occurrences as coincidences or happenstance. I see the sovereign hand of the Almighty, expediting parts of our process, so that our baby girl can have permanence in a family that loves her so very, very much. As much as we love Annalise, the One who created her loves her more.

Annalise, not a day goes by that we don't think about you, talk about you and wish you were here. We never imagined the process would take this long and we are doing everything in our power to get you home as soon as possible. We continue to pray for everyone involved: you, your foster family, your birthfamily, the workers at both agencies, the government officials that are completing ICPC, all the way to the postal workers that we count on to deliver these documents and the notaries that make these documents official. We pray that everyone does their jobs to the best of their abilities, with what is best for you in mind at all times.

Heavenly Father, we continue to walk the road that You set our feet on. We are continually amazed at Your planning for our lives and we are excited to see what our future holds as Annalise joins our family. Comfort Annalise and prepare her to join our family. Continue to encourage Julianne and DeLainey especially. Breathe hope and joy into their thoughts about their sister and keep them from feeling that Annalise joining our family is hopeless and that Annalise has been forgotten. Help Brandon and I with the decisions that we are going to be making about Annalise's care. We love You and praise You! In your precious Son's name, Amen.

~Steph

Why special needs?

2011-09-03T09:36:00.000-07:00

We've gotten this question quite a bit. I've openly shared on our blog that we specifically asked to be homestudy approved for a child with special needs. In fact, I was a bit annoyed when I read our homestudy and it said were were approved for a child that is "healthy or with mild, moderate or severe special needs."

I remember turning to Brandon and saying, "Healthy children have less trouble finding adoptive parents. That isn't where we are called."

I know what God has put on our heart. We are commanded to care for widows and orphans (James 1:27.) When we prayed about how to do this, we were led to adoption.

Personally, I have always had a desire to adopt and I was thrilled. But in our case God has asked us to do something that we never thought possible. When you adopt, you get a nice neat little checklist asking which medical conditions you would accept in a child and you are asked to check "Yes, No, or Case by Case" for each condition. We prayed before filling out our form. We researched the needs we were unfamiliar with. And then we marked them ALL yes. It was probably the single most spiritual moment I've had in my life. I knew without a doubt that I was in the center of God's will. We trusted God to choose the right child for us. And without a doubt, He has.

Annalise's medical history is hard when you see it on paper. We are currently waiting on a copy of her medical records to arrive. In her foster home, those records fill a 4 inch notebook. Our girlie has seen more than ten different medical specialties in her short life. She has already had three surgeries. But when I held her 10 lb body and looked into her eyes, I saw Jesus and I knew that I am exactly where God has asked me to be.

Have you asked God where He wants you to be? And then did you listen? Or did you reason your way out of it? The sweet peace of being in the very center of where He has asked me to be is so peaceful. I sincerely hope each of you find the center of where He has asked you to be too.

Have no fear. We are not naive when it comes to her significant needs. But we trust that God will guide us down this path with her just as He has all of our children.

"...Whatever you did for one of the least of these brothers and sisters of mine, you did for me."
Matthew 25:40.

Disaster and the Blessings...

2011-08-29T15:58:00.000-07:00

In my last post, I talked about one type of natural disaster. But today, we are talking about another: Hurricane Irene.

Brandon and I grew up in Augusta, Georgia. And one little quirk about our hometown is that if you are traveling and "lost" you just follow the evacuation signs to find your way. I happen to know that it REALLY works because I got turned around on the way home from Charleston, South Carolina, in my pre-GPS days, and tested my theory.

So we've never really dealt with hurricanes. Rain and storms, but never this. So we were naive. But we did the best we could with our (limited) knowledge. We bought charcoal, lighters, flashlights, batteries, and some food that didn't need refrigeration. I made sure we had plenty of diapers, wipes and toilet paper. I bought shelf stable milk for the boys. We filled our bathtub and large pots with water. We put our important papers in a Rubbermaid container with the diaper bags. We set that by the door in case we needed to make a quick exit from our place. We filled our van's gas tank. Brandon and I prayed that Richmond would be spared.

And then we went to bed. To be honest, we thought we over-reacted but locals kept telling us about when Isabel hit in 2003. Several people told us that they were without power for 12 or more days.

Saturday, Brandon went to work as usual. It was overcast and windy. At home, the power flickered on and off. But it always came back on.

Brandon's office shut down right before his lunch break. I was relieved that Brandon was home. I always feel safer with him by my side. We went about our business. The rain started and I laid all the kids down for a nap. Shortly after, around 5, our power went off. I held my breath for a bit, willing it to come back on. But nothing happened.

I was reading in bed, when a high pitch squeal started sounding. I woke Brandon and asked him what it was. He asked me what it was. It was so loud, I couldn't think. It was in our room, but no where else. I asked on facebook. Eventually I realized that it was coming from the floor in our closet. Finally we got through to our maintenance hotline. They had been inundated with people calling because they had no ac. (Dear fellow Richmonders, if you have no power, calling the apartment complex hotline for your ac not working is fruitless.)

Turns out, since our apartment is technically a basement apartment, we have a sump pump. (I had no idea what a sump pump is. Have a mentioned in Georgia we have attics, not basements?) Well when the power went out, the sump pump quit working and the water level was rising, so the water level alarm sounded. Lesson learned. We also learned from the maintenance worker that we had no way out of our apartment complex because there were trees and power lines down. He happened to be on property, which is how he got to us so quickly.

We hunkered down. The worst was yet to come. We opened our blinds for some light until the sun went down, reserving our batteries. Then at dark, we put the boys to bed, and let the girls play cards in the same room we were in so we would only have to use one flashlight.

We all eventually went to bed. Hoping we'd have power the next morning.

The next morning came and we woke up sweaty. Brandon and I had slept on top of the covers and the children had minimal pajamas on. We were all hot and it was getting hotter as the morning went on.

We only have large windows on one side of the apartment and the breeze wasn't going the right direction to come in. We had no cell service. Having to think on our feet, we packed just a few days worth of clothes, the milks (coconut and whole) from our fridge, grabbed some food
supplies and headed out.

We had no idea where to go really. We did get out of our neighborhood and saw that we had no street lights or traffic lights. There were entire power poles down. Trees had smashed fences, lines, etc. Gas stations were closed.

I finally got a little cell service on my phone and saw that most of the Richmond hotels were full from other evacuees coming into the capital, so we headed west, reasoning that the east would be worse off than we were. (We are on the west side of Richmond.)

We drove until we saw a decent looking hotel and stopped to see if they had any available rooms. We took the room.

And this is where we've been since. We did venture back into Richmond today to look for Brandon's phone that got lost in the hustle and bustle of trying to pack with four very scared and one absolutely hysterical child. (Xander does not take well to his routine being changed.. ever!) We did find the phone. The power was not restored and since then the outage line has backtracked and taken away our predicted time (that has since passed.) The food in our freezer and fridge will be a total loss. The line at the gas station was VERY long. Some intersections were manned by police officers. Every now and then we'd find one that worked. Some had no one manning the intersection.

Among all of this craziness, there are many blessings we've seen.

1. We received an email from the K's letting us know that they were praying for us and telling us of the preparations they had made for Annalise before the storm had even gotten to us.

2. We are safe. Some of us are frazzled, some of us are scared. But we are together and unharmed.

3. Our apartment did not sustain any damage from flooding. When the maintenance worker arrived, he pretty much told us to prepare for our master bedroom closet to flood. He even helped us move everything out and then he advised us to shut the closet door and lay a towel down. This was to help prevent our bedroom/entire apartment from flooding.

4. We had used a lot of our frozen/refrigerated food stores in preparation for the end of our lease. So we didn't lose as much as we could have.

5. We have an emergency fund (Thank you Dave Ramsey) that is taking a hit, but serving it's purpose.

6. My girls think this is a vacation. When we went back to check our power this afternoon, we thought to grab the swim suits. So we enjoyed our hotel's pool this afternoon. And we grabbed laundry soap, so we used their laundry facilities as well. The swimming helped burn a good bit of energy and that is helping my children fall asleep tonight.

7. Brandon and I have been able to rest in the Lord's plans for us. We believe that THIS is the reason that Annalise hasn't been able to come home to us yet.

8. We've learned a ton. We've learned about God's goodness and how to prepare better if there is a next time.

Thank you Jesus, for keeping our family safe. Thank you for these life lessons. We love You and praise You!

~Stephanie

Earthquakes!!

2011-08-25T13:32:00.000-07:00

Tuesday, we experienced our first earthquake. We had no idea what it was, though.

Brandon had come home for lunch. We enjoyed a family lunch and as Brandon and I started to get up to pack his dinner, everything started shaking. I ran to look out of the window sure that something had exploded.

Instead I saw a beautiful, sunny day!

Brandon and I walked outside. Nothing seemed out of the ordinary.

We walked around our building (we are on the backside by ourselves) and saw some neighbors outside. We asked what happened and they told us it was an earthquake.

I wasn't aware that Virginia had earthquakes so I hopped online to confirm, and sure enough, we had an earthquake!

Not exactly something on my bucket list.

~Steph

MIC-KEY Button Info...

2011-08-23T21:24:00.000-07:00

I won't lie.. I was more than a little concerned about Annalise's MIC-KEY button. However, I found a support group on Facebook and I spent some free time (har har!) reading their postings and watching their videos. The knowledge empowered me and I pounced on Brandon when he walked in the door one night to tell him all I learned.

But Brandon is a hands on learner. So I was secretly pleased when Mama K walked Brandon through giving Annalise her first feeding from her new Daddy! I watched on and sure enough, it was exactly like the video said.

Now I am certain that this is manageable!

We've gotten a few questions about what it is like and how it works, so I thought I'd post a video I found. This is how we will feed her all of her baby formula. She is working on taking things by mouth, but they have to be thickened to at least a honey or nectar consistency because she aspirates liquids. Maybe one day, but for now we choose to be thankful that she can receive her nutrition through another method! For now, her goal is to be a "social eater." That means that they want her to be able to sit at the table with her family and taste things. Like if she were at a birthday party, she could take a bite of cake, etc.

Annalise has a feeding pump that puts 1 cc through the tube a minute. So her 60 cc (about 2 fluid ounces) feedings take one hour. Then 3 hours from the start of her first feed, she starts again. So really, there will be a two hour break in between feedings. Her feeding pump will go everywhere with us. Her feedings are done at 6 am, 9 am, 12 noon, 3 pm, 6 pm, 9 pm.

Overnight, she has a continuous feed as she sleeps.

We are also using this video to show our girls how their new sister will eat. Of course, when I first told Julianne that Annalise doesn't use bottles, she thought I was going to nurse her "like Solomon." You should have seen her face when I told her no, not that way either. My poor little boogie-bear was SO confused! (Psst... it is possible to nurse an adoptive baby..)

Click on the link below. It will take you to You Tube.

MIC-KEY Video

~Steph

And we wait..

2011-08-21T21:04:00.000-07:00

(A picture I took on our trip to Susanna's. Doesn't it look like a postcard? Or a puzzle? Absolutely gorgeous!)

Our Interstate Compact paperwork left the NJ office on Friday afternoon... All FIVE sets of 200+ papers.

This is the ONE thing left to complete for Annalise to come home. As soon as this is cleared, we can go pick her up!!!!

Pray with me that red tape moves quickly!

Also, please continue to pray for my friend, Susanna. She is waiting for paperwork and red tape to clear so that she can travel internationally to bring Katerina home. Pray protection over Katerina. They are expecting to wait about 4 months to return to her, but we are praying for it to be expedited!

His,

~Stephanie

Finally, a meet up with Susanna!

2011-08-19T21:44:00.000-07:00

We took a little detour on our way back from New Jersey and stopped in at my friend's home. You may remember that we were supposed to go to a Memorial Day Picnic that Susanna and Joe host and that didn't work out earlier this year.

Susie had a very hectic day and was just eating breakfast (!!) when I called to let her know that we were stuck in traffic and wouldn't be arriving when I thought... That was between 2-3pm. (They were preparing for Susie to travel to meet their Katie-Bird!)

However, God had amazing plans for our meeting. One of her friends brought her supper that afternoon, so she was able to finish what she needed and didn't have to worry about supper prep. And it was enough that she asked us to join them for dinner. This gave us more time to chat!

Their house was our refuge after a few whirlwind days. Brandon and I were able to encourage Joe and Susanna in their adoption and the calm and peace in their home and their personalities were able to soothe our frazzled nerves. Of course, I was able to blabber about our newest baby girl and I had a chance to view a video of Katie! We also talked a lot about her upcoming trip.

Joe unknowingly really encouraged Brandon in their chats. I have found incredible support online through the MOMYS group and I often forget that Brandon is often lacking that fellowship and encouragement.

I did get to hold sweet Verity for a few seconds, but stranger anxiety has set in. I understood full well since Solomon is only about a month or so older than Verity.

I have to say that her part of Pennsylvania is GORGEOUS! It was very green and there were fields and livestock outside our windows for most of that portion of our drive. The area had a very innocent feel to it. Let's just say that there was a marked difference between it and Philadelphia. ;)

Susanna and Joe, along with their ten children, were gracious hosts. I wish we had more time to spend with them.. but as I said during our departure, I bet I have no problems getting Brandon back out there again! ;)

~Steph

PS: This was just the beginning of a series of blessings poured out upon us.... I can't wait to share all that God has done! AND Blogger is giving me FITS! I'm trying to upload a picture of a horse and buggy parked in the parking lot of a grocery store!

The Meeting

2011-08-18T05:58:00.000-07:00

("Hurple", Annalise's lovey, picked by our girls, named by Little K.)

As we walked into the K's home, we were greeted by Daddy K, Mama K, Little K (their 9 year old daughter) and the adoption coordinator. Annalise was no where in sight. We shook hands, introduced ourselves and sat on the couch.

Little K asked who we were. I wasn't sure what her parents had told her so I looked to Mama K. Mama K said we might be the baby's new parents. The word *might* pierced my heart but as I looked at Little K to shake my head yes, I realized that her heart was being pierced at the same time. She's had 8 months of a little sister. She obviously loves our girl. I made a mental note that we should be mindful of Little K's feelings. She asked if we were her parents, would we keep in touch. I said that would be no problem as long as her parents allowed it. She smiled and sat at my feet, watching me carefully.

Immediately, Mama K said she was going to get the "the girl of the day!" And soon I had 10 lbs of sweet baby in my arms. She studied me hard. She could tell I was new. At first she had her body very stiff. I coo'd to her and told her how beautiful she was. I held her so that she could study Brandon too. Soon Brandon and Annalise were playing with each other's hands. To be perfectly honest, I had wondered about her tiny hands but soon she was gripping Brandon finger with her thumb and pointer finger. She has quite a grip!

Soon she relaxed and molded into my body. Huge smiles that take up her whole face were starting to show. There were a few times that we were speaking with the other adults in the room and she'd poke me to make sure I was still paying attention to her.

Every so often, I'd hear "Stephanie?" and I'd look up.. a bit embarrassed that I had obviously gotten caught looking into my new daughter's face and tuning the rest of the world out. It was just us, staring at each other and taking each other in.

I'm not allowed to publish pictures. But I'll do my best to describe Annalise. She has very dark brown skin that looks fabulous in turquoise, coral and pink. She has very long, thick eyelashes and very prominent eyebrows. She has a ton of curly hair that Mama K puts a bow in each morning. She smiles easily. Her cry is tiny and unlike anything I've ever heard. We only heard her cry once in the 6.5 hours that we were there that afternoon and that was when she wanted to come back to me while we were eating dinner. *grin* She bats at toys, she can spin around on her activity mat using just her feet and head. She has an effective pincher grasp on her left hand. She also grabbed our fingers with a very tight grip as if to say "Gotcha!" She has no teeth yet. She is very tiny and is just starting to wear 3 month clothes.

You can probably see why I was in my own little world watching her...

Soon the birthparent counselor came. She shared some details about her birthparents that we had not known. Soon all the agency workers left us with the K's and we continued to talk about her medical history. Mama K has a thick notebook with details of every appointment, every test result, etc. I glanced through it but it was far too much to read in one sitting when I wanted to soak up every second with Brandon and Annalise. She told me that notebook will come home with Annalise. She also told me what she believes should be the next steps in her care.

I shared a little book I made with pictures of each of our family members. Annalise studied the pictures intensely. We also gave her a lovely that the girls picked out. Brandon and I slept with the lovey so it would have our scent on it. Annalise looked at it for a long time, taking it all in.

Brandon connected Annalise's feeding tube and held her as she ate. We also watched her eat some babyfood applesauce.

We shared dinner with the K family. We talked about our faiths and just general life. We laughed together. We felt at ease.

A bit after 6 pm, we left to go check into our hotel. After paying a toll, we found our hotel with no issues. We could see the Phillies stadium from our room's window. I took a shower and got dressed again. Brandon did the same but when he came out I was asleep on the bed. He gently woke me and we set out in search of our bank and a real Philly Cheesesteak. Afterwards, we headed back to the K's to meet our girl's favorite night nurse, Mama J.

Mama J was direct and to the point. You can tell that she cares for Annalise deeply. She gave us alot of pointers about choosing a nurse for our family and that was greatly appreciated. We left encouraged and hopeful. Brandon and I crashed into the bed and slept without moving.

The next morning, we drove into Trenton (and paid another toll!) to meet at our agency's office. We cared for Annalise as the K's updated their infant CPR certification just down the hallway. It was a little more awkward being in an office than in a home and I was instantly greatful that we had first met in the K's home. We took a lot of pictures of Annalise. Mama K took a picture of both of us with Annalise. Brandon took a picture of Mama K and Annalise with me. Brandon also took a picture with Little K and Annalise with me.

I kissed Annalise and told her we'd be back soon and to be a good girl for Mama and Daddy K. I blinked a few tiny tears back and I snapped her in her carseat to go home with the K's. We all hugged each other.

Afterwards, we had a meeting with the adoption coordinator and the director of the agency. Parts were tense but I had such peace during those conversations. We were asked if we were sure we wanted to proceed. We both said YES! and soon after we were signing paperwork to start the interstate compact process.

After another toll, (I told you it was a theme!) we grabbed a bite to eat and we were headed south to meet up with a dear friend, Susanna.

Our Journey North

2011-08-16T16:27:00.000-07:00

(I'm back tracking a bit... trying to keep records of this journey in great detail because let's face it, my memory isn't what it used to be!)

Monday we drove halfway to Georgia and met Auntie Karon and two of my nephews at McDonald's. We ate and chatted and then Brandon moved all of our carseats into Auntie Karon's van. It was hot. The air conditioning was broken in the McDonalds. We seem to bring bad luck to that McDonalds. Last time we met right after the tornados came through. Their air conditioning was messed up then too... and they were out of alot of supplies.

Then Brandon and I drove home. For about half of the trip we sat in complete silence. It felt weird and we laughed nervously. Afterwards we started talking about what expectations we had for the trip to meet Annalise. We also made a list of questions.

As we got nearer to Richmond, we got more and more nervous. Brandon decided that a chiropractic adjustment and a pedicure would relax me. So off we went.

Once we got home, we packed and headed to bed. There wasn't much sleeping done by me. I had too much to think about.

The next morning we woke up before the sun was up. We had heard horror stories of traffic in/around DC but we didn't run into much traffic there.

I was already a little tearful as we made our drive. I missed the Fab Four and we had alot of unknowns about our trip and meeting Annalise/our agency.

I couldn't keep the tears in though, as I saw landmarks in DC just as we heard a tribute to the Seal 6 team. God Bless the USA played during part of the tribute and the tears fell easily.

I'd never been to DC or travelled in the northeast. I was amazed at the sights and looked like a total tourist as I was attempting to snap pictures with the camera on my phone.

We were so unprepared for the tolls that we went through. Our GPS usually steers us clear of toll roads but we paid several on the way to the K's home. (Little did we know that this would be a theme of the trip.)

We made a bathroom stop at a Starbucks and Brandon convinced me to try a Starbucks drink. I don't like coffee but do drink cheap gas station cappuccinos and McDonald's frappes. I can't remember what he picked for me but it was a cold drink. This caffeine/sugar filled drink would later be my downfall.

About 2 miles away from the foster family's home, we stopped at a Wendy's for another bathroom break. I put my make up on and grabbed a drink. We were supposed to eat lunch before we came... but I was a ball of nerves. I started to panic a bit. My face was really splotchy and my hands shook. I fought back tears as I realized that the caffeine had not done a single thing for my nerves. I think I had a four piece nugget from Mickey D's. All I remember is trying not to throw up.

We did have a little comic relief though. Maggie (our Magellan GPS) decided to take us to the end of the road and tell us that we'd arrived. So we had to turn around and read the mailbox numbers to find the K's home. Brandon joked that Maggie was going senile in her "old age." She's almost 3 years old, but Brandon said that is like 60 in GPS years. (Like dog years LOL!)

For about three seconds, I didn't want to get out of the van and knock on the door. But I knew that our new baby girl was inside.

Could we handle her needs? Would we both be on board? Was this indeed, going to be our fifth child? As I knocked on the door, my knees buckled and I thought surely I was going to make a scene if I passed out. Slow deep breaths kept me "with" everyone.

And the moment that I met Mama K I knew everything would be alright. She very quickly went to go get Annalise and love took us in....

Sweet Peace...

2011-08-12T08:45:00.000-07:00

(A quote we noticed immediately after walking in the K's home.)

I've been quiet on the blog because we were traveling to visit Annalise! :) Monday we drove halfway to Georgia to meet my aunt so we could pass off the kids. This prevented either of us from having to make the full drive.

Then we left bright and early on Tuesday morning and returned in the wee hours of Thursday morning. Then I took yesterday to process a bit and work on my ultra long to do list. Somethings just never change.

I've had several friends check in with me to see how I'm doing. The truth is that we really dreaded leaving our baby girl behind. There were a few moments that I had to blink back some small tears. But it wasn't nearly as horrible as I predicted.

Here is why:

We have incredible prayer warriors that have been praying for that very moment. The moment we would have to hand our baby girl back and walk away with an unknown return date. I specifically asked several of our friends to pray for that very moment. I even gave them the exact time that the transition should be occurring. It truly was a peace that passes all understanding!

Annalise's foster family is just jaw-droppingly amazing! I've tried to explain what I mean by that a few times and I never feel like I give my description the justice it deserves! Mama K and Daddy K ooze joy and their love for children and Christ! They welcomed us into their home with open arms, they patiently answered all 5 million questions we had for them, they've had incredible amounts of people praying for her from their congregation, they've hoped and prayed for a family to come forward for her... I just can't even begin to share all of the details that make them so incredibly special.

But I do have a few that I would like to take the opportunity to share.

The K's have been fostering for 28 years.

Annalise is their 76th foster child.

They've adopted.

Mr. K's parents were also foster parents.

They are relentless advocates for children.

Shortly after we sat on their couch they handed us Annalise. We did most of her care while we were with her.

They invited us back in at 11pm to meet her night nurse.

Mrs. K showed me a little scrapbook that she had put together of Annalise's 8 months of life. Precious.. sweet.. thoughtful... WOW!

As much as we want her home, we have no doubts that Annalise is being cared for in a loving way. The peace is amazing and it makes our wait much more bearable.

So much more to share,

~Steph

PS: Would you lift my friend, Susanna, up in prayer? She starts her travels today to go meet her Katerina! We had the opportunity to share a little bit of time together on Thursday.. but more on that later!

Trying to keep busy...

2011-08-04T13:15:00.000-07:00

I've been trying to use my nervous energy to actually accomplish something. (Ya know.. other than pinning inspiration on my Pinterest boards and eating chocolate!)

I started to redo our file system the other day, and my labelmaker died. I can't organize without a labelmaker!

Yesterday, I got a new one and so last night I redid our filing system. Instead of having it in a traditional file folder system, I put everything in a large binder. It took some time and patience but I got it done and it feels great to have it done.

I have a few more little projects to work on. I still have printing to do. I still have to type our Notice of Intent to homeschool (times 2!!) We've made our hotel reservations for our trip to visit Annalise. I have to pack (times 6).... I have some sewing to do that I've put off for far too long.

And yet all I REALLY want to do is rock our new baby. I want to study her face. I want to sniff her little head and ask a jillion questions about her routine, her likes and dislikes and her healthcare.

Still waiting,

Stephanie

Tiny droplets of blessings...

2011-08-01T00:51:00.001-07:00

4:59 on Friday afternoon is a moment of dread for every adoptive parent out there. It means your agency is about to close and except for rare occasions you don't hear anything until the office opens again on Monday.

However, this weekend was different. Friday evening I felt defeated and I spent a good amount of time in prayer asking God to please help me to stand the waiting.

Saturday I was shocked to find an email from our adoption coordinator in my inbox! It was confirming our travel dates to visit with Annalise and her foster family. It was a little droplet of encouragement and we counted it as a blessing.

So imagine my surprise when I got another email this evening, answering some questions I had typed asking for more information about Annalise. I sent the email on Friday afternoon and knew it had to go through the proper chain (our coordinator, foster coordinator, foster family and then all the way back!) so I wasn't expecting it back quickly. And yet it came. :)

Another tiny droplet to keep me going...

These tiny crumbs are helping the time pass more quickly.

But I think I've also worn this song out...

Praising and serving Him as we wait,

Stephanie

PS: Brandon and I moved our church letter this morning to the church we've been attending the last couple of months. This is a HUGE milestone after 2.5 years of searching for a church home and visiting a ton of churches (I lost count when we hit the 20's.) To my Warren readers- I have to say, you raised the bar very high! We love you and miss you! It was definitely a bittersweet moment but it feels good to settle in.

Time to Play the Blessing Game...

2011-07-29T17:40:00.000-07:00

So much is up in the air about our adoption right now. I feel discouraged and defeated...

A long time ago, I had a super optimistic friend that occasionally got on my nerves because she was so very optimistic. *grins * When she got down, she played The Blessing Game. I used to roll my eyes. But I'm of the belief that you can learn something from everyone. So one time, I tried it myself, and decided it wasn't half bad.

Today has been an incredibly cr*ppy day. So, what else is there to do? Play The Blessing Game! *blinks back hot tears of frustration*

1. I have an incredible man by my side to walk this adventure called life with. He's there no matter what-- through thick, thin and super thin to barely there! He's proven this over and over in our 7 years of marriage. We laugh together ALOT and we cry together too. He knows me inside and and out.

2. I have four healthy children with lungs that work very well. Both Solomon and Xander screamed the whole way home from the church tonight. We were there to meet the prospective pastor. Oh yeah and they screamed during part of that, too. The girls gave us the running commentary of what each of their brothers were doing in the van as they were screaming. I could just feel gray hair popping up!

3. God is always there to hear the cries of my heart. And He knows my thoughts before I say them. You know.. like when you are sobbing so hard that no one else can really understand what you are saying? He's got you!

4. Our adoption fund is complete thanks to an incredible blessing.

5. I have amazing friends that pray for me without me asking. Just today I got an email from one of them. She has no idea what an encouragement her words were to me.

6. I got news today, that my friend, M, that suffered two devastating late pregnancy losses is expecting a baby boy and he looked wonderful on her most recent ultrasound. I danced around the room and ran to tell Brandon when I found out.

7. Tonight at church, a couple that we are becoming friends with asked us how things were going and they weren't scared off when we let them know some issues that have come up. I have no doubts that they are carrying part of our burdens and praying for our situation.

8. Xander signs "Thank you" when you change his diaper. What a polite little fellow he is growing into. He also signed "Sorry" for acting insane in the van and then said "I lu loo!" (I love you!)

9. Solomon reached over my shoulder to pat my back when I hugged him before tucking him in. Sometimes the blessings are so little, you might miss them if you don't look closely!

10. Lainey saw that there was some work to be done when we got home and asked if she could do it for me. Bless her little servant's heart. <3

11. Julianne shared with us that she has faith that this is all going to work out and soon all seven of us will be together, forever! I love her optimism.. even when I am having trouble mustering it up in myself..

*smile* I am feeling a little better.

Please pray for the communication to be a bit more definite when we speak to the agency this coming week. Brandon and I feel very out of the loop and it has become very frustrating for us.

Trying to hang in there,

Stephanie

Things that make me giggle...

2011-07-28T23:16:00.000-07:00

Remember my comment about giggling as I washed my counters after the phone call with the social worker?

I'm ready to share more... And it still makes me giggle and stand in awe of how wonderfully God plans things.

Here is just a few of the things that made the hair on the back of my neck stand up during that phone call.

1. I've always wanted a December baby... always. I know that sounds completely random, but well we all have random quirks right? (We currently have Feb, April, May and June.) Annalise was born in December. This past December we were in Disney and I kept counting our children (I do this pretty obsessively when we are in public) and feeling like someone was missing. Brandon and I had a similar experience right before I found out I was expecting Solomon.

2. Last March 2010, I experienced more adoption dreams than I have in any other single month. Adoption was SO on my heart. In fact, one major plus to moving to this apartment was that we could be approved to adopt again... Annalise was born 9 months later.

3. Among the list of specialists that we will be in contact with is an orthopedist. We have one that we LOVE. Lainey will be attending physical therapy... so will our Annalise. We know our orthopedist's views of adoption, because I mentioned the baby SB to her (he also had orthopedic needs.) She has an amazing heart.

4. The one transfer that we thought we desperately wanted for Brandon has no Children's Hospital nearby. Annalise needs to be near a medically resource rich area with several specialists. We were told that when it came down to deciding between a few families, that they looked at what resources are in the area. The local Children's Hospital is about 10 miles from our home and the Medical College of Virginia is just a little further than that.

5. But if we took any of the transfers that he had applied for, we would have been at least 12 hours away from Philadelphia and Baltimore. Philadelphia and Baltimore are where the main specialists in the CdLS field are located. Currently, Baltimore is less than 3 hours away and Philadelphia is about 4 and a half. *Every* transfer that Brandon applied for would have made it more than 12 hours away from these medical facilities.

Resting in His plans,

Stephanie

The Day of the Phone Calls

2011-07-27T21:53:00.000-07:00

This morning, we made a zillion phone calls trying to connect with specialists for when Annalise comes home. I was transferred 8 times to make a single cardiology appointment!

Our Annalise has Cornelia de Lange Syndrome. We've known about it from the start. We had never heard of it until we connected with another adoptive mother that was advocating for her, desperately hoping to help the agency find a forever family for a sweet child. This mother also adopted a child with CdLS.

We researched.. we prayed and we sent our homestudy out. We've had so much peace about her. But we need to get things set up so we can transfer her care. So we called and got some appointments scheduled.

We also called the Children's Hospital of Philadelphia (CHoP.) They have a Center for CdLS there so we will take her there to have specialists familiar with CdLS help us make a game plan so that she is getting the best medical care available. Our specialists in town will use that information as a guideline.

I've hesitated a bit to post about CdLS on our blog. We've mentioned it to a few friends who have all been amazingly supportive. I hesitated because I want people to see her for her, not just see her CdLS. Please forgive me for not sharing sooner.

When we spoke with the girls about Annalise.. we told them that she was going to look a little different than what they were expecting. She has two fingers on one hand, and one on the other. She has no radial bone in her arms. BUT before I could say anything else, Lainey interrupted me and said "But Mama... she is still fearfully and wonderfully made by God."

I swallowed hard, blinking back tears and told her yes, that she is still fearfully and wonderfully made. And then they ran off to play.

I wish the whole world could be so accepting. I know that people may stare. People may ask questions. We get that. But we've also fully embraced Annalise and just want the very best for her. We want her to be included, embraced and celebrated.

After our crazy phone calls with Bran on one phone line calling one office and me on the other phone line calling a separate office yet trying not to schedule things at the same time on the same days.. and after explaining for the 550th time that the earliest we can take her to be seen is September because she isn't with us yet but that we don't know for sure what day she will be here either... we packed up the kids, got in the van and left!

We went to Sonic for Happy Hour. Ya gotta love half priced slushies and sodas.

We turned the praise music up. I put my sunglasses on and spent time enclosed with 5 of my favorite people in our van. We thought about Annalise. I prayed as I watched the country fields blur past my window.

It was peaceful.. and another day passed which means we are one day closer to visiting Annalise and ultimately bringing her home.

Father, sowing Your Word into the hearts of my children has already returned fruit! I'm so thankful that You've prompted me to teach my children to memorize Scriptures. Please continue to look over Annalise-- prepare her heart to join our family soon. Give us strength as we count down the days before we meet our third princess. We so desperately want to hold her tiny body in our arms. Lord, help us to work out the logistics and order our steps so that we can transfer her care. I'm so thankful that I've been in contact with other parents that are parenting their special blessings. The wisdom that I've gained from them and the Foundation for CdLS has been so incredibly valuable. We love You and praise You. Amen!

~Steph

Disappointment...

2011-07-26T19:22:00.001-07:00

We were hoping to be able to visit with Annalise this month. I knew that was a bold hope but I knew God could do it, if it was His will.

It's not.

This afternoon, we found out that our visit is looking like August 9-10. We will find out officially later this week.

Fourteen more days.

And we'll visit.

Then we'll come home.. without her.

The soonest she can come home is after August 24th.

It is disappointing. But we have to trust that this is His timing...

We'll continue to pray and wait.

And eat icecream.

My Heart Sighed...

2011-07-24T12:18:00.001-07:00

This morning, Brandon was so excited to announce to our Sunday School class that we are matched and let everyone know that we are expecting Annalise to join our family soon. We briefly got to share the story behind her name and how old she was. We also asked for prayer for her UTI. Everyone was thrilled for us.

Then this afternoon, we met up with some classmates at a local restaurant to eat lunch and chat. I was able to let our new friends know that Annalise has some special needs and briefly got to share about them.

And they didn't blink an eye. It was as if I said, "Our Annalise has brown hair, brown eyes and one dimple." There wasn't an awkward silence.

But I know what was there: Acceptance.

I nearly burst into tears at the table. Instead, I looked away and took a few deep breaths and my heart sighed.

I can't wait to see how God uses Annalise for His glory. I wonder how He will use us as we parent Annalise. We are praying you home, Baby Girl and can't wait to introduce you to our friends, near and far, that are so diligently praying for you and us.

Father, as I look back over our journey the past few years, I'm always amazed. Part of the journey was painful. Some days were lonely. The pruning hurt. But the growth that I see in Brandon and I as Believers and the strengthening in our family unit, is nothing short of amazing.. Thank you!

~Steph

PS: The form does have to go to South Carolina. Our socialworker is going to call this week and politely ask that it be expedited. Pray that it returns quickly!!!

Specific Prayer Needs:

2011-07-22T01:29:00.001-07:00

1. Annalise has an UTI and is on antibiotics. She was vomiting (they believed from the antibiotics) so they took her to the ER. That was the last I heard. Pray for healing and relief from any pain and yucky side effects of the medication.

2. 10 years ago I lived in South Carolina for a short time. There is a possibility I would need a form to go to SC and back before she can come home with us. (A NJ requirement not a VA requirement.) This makes us nervous because our form for Georgia like this got held up in our homestudy for Xander. Please pray we don't need this form. It only searches back 7 years and I have NOT lived in South Carolina during that time.

3. Please pray that our visit with Annalise and our placement takes place before August 17. Otherwise the soonest she can come home is after August 24.

4. Please pray for her foster family that has cared for her so lovingly while she has been in their care. We hope to be able to keep in touch with them. (We still keep in touch with Xander's cradle care parents.)

5. Pray for peace and comfort for her birthparents. They love her very much and we look forward to updating them just as we do Xander's birthmom.

6. Please pray for the children waiting patiently (or at least trying) for their sister. Julianne was in tears this morning because she said she just wants to see her Annalise so badly. :( We've talked about it to try to comfort them, but I'm praying for peace that passes understanding.

I cherish each prayer said on our behalf and thank you from the bottom of my heart!

~Steph

FAQ's #2: Annalise

2011-07-21T09:25:00.000-07:00

The questions are flying all around so I thought I'd answer some in one place. :)

Why did you name her Annalise Hila? / What does her name mean?

The name Annalise came to me in a dream a while ago. It means "Grace and Favor." Ever since I've had that dream, I've continued to have other dreams involving adoption. In those dreams, we adopted a girl but I could never see her face and I had no idea if she was going to be adopted domestically or internationally. See my postings about those dreams HERE and HERE. (Note: the November 18th post was written just a few weeks before OUR Annalise was born.)

We struggled to find a middle name. At one point, we thought her middle name was going to be Promise. Then when we found out that we were selected to go through the match process with this particular baby, I remembered that we first found out about her on the 4th of July. She is a first generation American in her birth family (more on this later), so I thought something patriotic would be fitting. But nothing fit.

Yesterday, when we got the match call, on a whim I asked what her name is right now. It's Hila. Right now the agency is pronouncing it two different ways. Hee-la and High-la. But the adoption worker didn't know any of the story behind her name or the significance.

So I looked it up. And it came up that it is a Hebrew name that means Praise. When I read that, I KNEW that this is why finding her a middle name was so hard. She will keep her name and we will move it to a middle name. She will be Annalise Hila. We are pronouncing it "High-La" although I know that isn't the Hebrew pronunciation. We are trying to make it easier for others to say properly.

How old is she?

She is 7 months old and will soon be 8 months old.

Wait, isn't Solomon only 14 months old?

Yes. *giggle* We'll be some Busy Bees. We will have 3, two years old and under. I told you my spacings keep getting smaller!!!

3, two and under? What are you doing logistically?

We already have an infant carseat. It will take one more crib. And lots of diapers! Oh and I'll be praying A LOT. God has grown me with each addition, and I expect nothing less with our 5th.

International or domestic adoption?

Domestic adoption.

When will she come home?

August. We will visit her first and then come home. During that time, the interstate compact paperwork will be completed and when it is done we will go get her and bring her home. This will mean only a limited amount of time away from the Fab Four.

Where will she be in the meantime?

She currently lives with a private foster family for the agency. The couple has fostered over a hundred children for the agency. The foster dad is a pastor and the foster mother is a retired nurse. They sound like really neat people and I can't wait to meet them and our Annalise!

Speaking of the Fab Four, what will you call the Five now?

Fantastic FIVE! I also call us something with our last name in it.

Are you done yet?/ How many more do you want?

I don't know. Brandon and I have always taken the additions to our family ONE at a time, since God hasn't seen fit to send us twins. So Annalise will come and then we will see what happens. But you should know that Brandon LOVES even numbers... *wink, wink!*

Off to nest like a mad woman!

God, You always amaze me. I am so blessed to have the opportunity to raise five children to know You. Thank you for choosing Brandon and I for this wild ride. Thank you for giving my children such incredible faith. And thank you for answering Julianne's prayers for a baby sister! We are excited to see the layer that Annalise adds to our family. One of our friends posted on my Facebook wall that they are so glad that James 1:27 spoke to our hearts. I'm thankful we listened. We love you and praise you! In your Son's most precious name, Amen!

~Stephanie

Annalise Hila..

2011-07-20T11:41:00.001-07:00

...will be joining our family soon.

I'll share more after I go to my appointment and run some errands.

Mama has a dress to buy for the newest princess.

Julianne's reaction was priceless. Annalise is already very, very loved!

~Stephanie, mama to FIVE!

Property on Mars

2011-07-19T22:39:00.000-07:00

Photo Credit

So today I laughed until I cried. And then I laughed some more.

It happens a lot. If I'm 100% honest, one of the first qualities I loved about Brandon was his sense of humor. I usually have a really dry, sarcastic sense of humor and Brandon has a haha sense of humor. I do my fair share of rolling my eyes at his jokes, but he is one of the few people that can make me laugh until I cry.

This afternoon we were out exploring the areas around our new church (not the one I blogged about before.) We really like the area and we've started looking at the rental and real estate market.

Anyway, so a friend at church told us about a house in his neighborhood that had been listed for rent that was now listed as for sale by owner. He said we should call and see if they would consider renting.

So we drove by. We couldn't tell much about the house from the outside so Brandon called the number on the sign.

He chuckled to himself but I was oblivious. (A porch down the street caught my eye. Porches=Heaven in my book!)

I could hear the phone ringing and could tell that he was about to leave a message on the voicemail/answering machine.

And this is what I heard next:

"Hi, my name is Brandon ______, and I was calling about your property on... Mars.."

And at that point I choked on my Pepsi and started laughing hysterically. So did he. But he still had to give his phone number! So the numbers were broken up by our poor attempts at stifling our laughter.

We didn't do so good. He held the phone down and we laughed some more. I tried to get him to repeat his phone number. But he couldn't. He hung up.

And then we really died with laughter.

He called back and left a message saying that he had been disconnected and wanted to make sure that his phone number was stated clearly.. and he repeated his cell number.

Off and on, we've giggled about it. It just sounded so ridiculous.

Property on Mars.

Bwahahahaahahahahahahahahahahaha!

Welcome to our life!

~Steph

PS: I've had a really tough day today. Brandon's wedding ring has been missing, our van's ac isn't working properly, I got bad news from Georgia, and we are still patiently waiting to hear about Baby Girl. If you think about it, would you pray for us?

Readers Ask!

2011-07-14T18:08:00.000-07:00

So.. Erika, a friend from high school, left a comment on my previous post. She asked:

"I would ALSO like to know how you balance homeschooling the older girls

and have 2 (and hopefully more) under 2?! I can't imagine! I get

overwhelmed taking care of my one dog!! Hahaha."

And here are the strategies that make this possible:

1. First, Brandon's shift at work is three days a week. He does 3 thirteen hour shifts and he is done. All three aren't in a row. He has 2 days off in a row, works one day, off a day, works one day, off a day, works one day... and then it starts over! On the days that Brandon is home, we use what Brandon's calls Zone Defense and Offense. LOL! It's no longer Man on Man! This means that Brandon holds down the fort with the Littles while I do school with the Bigs or vice versa.

I have an incredible husband that insists on us sharing household/childcare responsibilities. I used to feel guilty that I didn't work outside the home but yet I didn't solely do all of the household and childcare duties, but over the years Brandon has convinced me that this is okay. :)

For instance: Brandon loves to cook. So the days that he is home, he usually cooks. I love to clean bathrooms and I'm obsessive about vacuum cleaning. I can fit an amazing amount of dishes in a dishwasher and yet I handwash pots and pans very quickly too. Those things are mine. :) Brandon and I share changing diapers, getting Littles dressed, feeding (except for nursing!), bathtime, playtime, etc.

2. Usually our homeschooling is done in the afternoon.. and coincides with an amazing phenomenon called Naptime. This, of course, only happens when I'm not pregnant, nursing, or sick. If I am pregnant, nursing, or sick, we school in the morning and I nap when the Littles do. *gasp* If we aren't having school that day, the girls are required to have Quiet Time. They can read or look at a book quietly. This assures that the girls are quiet enough for Naptime to occur.

3. Homeschooling doesn't take us near as much time as other schooling. Usually Lainey can knock out her work in about 3-4 hours. On days that she really applies herself, it can be much less.. or if she digs her heels in, it can be longer. Kindergarten took Lainey about 1.5 hours of formal work (max!!!) Of course, we had other "Activities" that tricked her into thinking she was playing and she was really learning. I'm sneaky like that and I'll trick Julianne the same way! Brandon and I believe that keeping school short and to the point, has really given our children a LOVE of learning. And that is one of our long term goals.

4. We also believe in delegation. The girls do their fair share of chores around here (and when the boys are old enough they will too!) We recently gave the girls new tasks after they begged for more chores. I have fabulous laundry folders/hangers now. The girls also take care of things like taking clothes to the laundry, sorting loads, refilling the diaper stacker, refilling the diaper bag with diapers, wipes and clothes, unloading the dishwasher, unloading and helping put up groceries, etc. Many hands make light work. The children don't do their chores at the same level of thoroughness I do, but they are learning!!!

Of course, the social worker got a much more succinct answer.. but I did touch on each of these thoughts. She seemed satisfied.

~Stephanie

PS: Like the new blog header? Anne-Holly surprised me by putting this together after a short Facebook Chat session. :) Thanks, AH!

A Sigh of Relief... and a Few Details...

2011-07-14T13:24:00.000-07:00

So the phone call came in that I was waiting for today. The adoption worker's voice was soothing and calm and that really helped my nerves. I did fumble a few of my words.. but well.. that is just me!

She asked a few questions that they felt weren't addressed in our homestudy. They included things like:

How do we plan to homeschool our oldest two and balance having five children.. three, 2 and under?

What activities are the girls involved in with their peers?

After that we went over the little one's health history and I got a few pieces of information about her birthparents.

When I got off of the phone with the adoption worker, I recieved an email with the release of information form for our homestudy agency. I quickly filled that out and sent it back.

We should know at the very least a little more late next week.

Shortly after I took care of that, I found myself chuckling as I wiped the counter. This has been a wild ride. If we are indeed matched with this little one, I'll be able to share more. Let's just say that God is SO in the details. I never imagined when we started thinking about adoption in 2007 that I'd ever be able to hand the whole thing over to God and simply say, "Your will be done."

But I have and I can't wait to see the rest of the "ride."

And so we wait....

and hope.

The Tiniest of Adoption Updates

2011-07-13T11:02:00.000-07:00

Today I got an email scheduling a phone call for tomorrow. So tomorrow I'll have a phone conference with social worker about a potential match for a baby girl.

Did you just read the last word of that sentence? It makes me go "Hmmmmmmmmmmmmmm..."

Maybe Julianne's prayers are going to be answered... (See what I mean here and here.)

If all goes well, then I'll sign a release of information and she will call and speak with our homestudy agency. Our homestudy worker is on vacation, so she'll have to speak with one of the other social workers.

So.. if you could pray for the phone call to go smoothly tomorrow, I'd greatly appreciate it. The time is listed as somewhere between 9am and 3 pm (eastern time.) Oh and you could pray that the children cooperate and that maybe World War 4 not break out while I'm on the phone.. that would be greatly appreciated too! Brandon will be at work so I'll be holding down the fort by myself.

~Steph

PS: Oh and the baby boy that we were hoping to match with (the one I nicknamed SB) isn't a possibility anymore. That situation got a little weird and we've taken it off of our radar.

Actually contemplating settling down...

2011-07-13T00:46:00.000-07:00

Settling down? You have four children and you've been married 7 years!

Ahhhh, yes. But not that settle down.

I've been peeking at real estate!

Our rent here is outrageous by our Augusta's standards. It hurts me to write that check each month. While our current lease is up in October, I don't think it will happen that soon. I don't think we'll feel comfortable buying until at least fall 2013.

I've looked at real estate here before, but I never really looked because I wasn't staying. Remember? This was a year plan and we were going home.

But lately I've noticed that when I talk about Georgia, I say Georgia. Or "Where we grew up." Or "Where we lived before."

When I have a bad day, I don't have pangs of homesickness. Sure I miss people. But not the location.

Now when I have a bad day, I go for a drive... around here. And I've found some gorgeous spots that make me smile even on the worst days.

Something is changing.. and I can't put my finger on it. But this has become home.

...Only took 32ish months.

PS: I just did something special, and I'm dying to share, but I can't. Someone (ahem.. my husband) reads this blog regularly. Trust me, if I pull this off, I'll be sure to share as soon as I can!

Closes?

2011-07-07T23:31:00.001-07:00

Sometimes after the bustle of the day winds down, I sit in the quiet and process my day. And sometimes after I do that, I find myself smiling and giggling to myself as I secretly wish I could stop time for just a few days so I can soak up my children.

Tonight, as I was procrastinating finishing up my side job's assignment for today, I found myself replaying a conversation that took place during a double diaper change. (I change Xander then Solomon, one right after the other.)

I had my back to the girls because I was standing facing the boys' closet where our changing table and dresser are located. My hands were pulling up Xander's shorts when I heard Julianne's voice from behind me. "Momma, what is that up there?" I glanced over my shoulder quickly and realized she was eyeing a stack of clothes on the top shelf. They are the tiniest boy attire that we own and I had quickly plucked them out of an unsorted drawer before laying Xander and Solomon down for a nap that afternoon.

Turning back around to kiss Xander before I put him back on the ground and repeating the mundane task, this time with a smaller tushie, I said "Baby boy clothes."

Now, Julianne isn't one to just take the short answer these days. And as my hands flew over the snaps on Solomon's outfit, I heard a small voice ask, "Baby boy closes? For what?"

As I wiped Solomon's nose with a baby wipe I said "Maybe for the new baby."

And without missing a beat, Julianne said, "We are 'dopting a girl baby."

I quickly answered back, "Julianne, we don't know for sure we are adopting a girl baby," as lowered Solomon to the floor. I gathered some laundry and the two diapers and started to leave the nursery.

And she sniped a quip back. "So Momma, where are the girl closes?"

I told her they were in a bin and that I hadn't had a moment to sort through them yet, but that we didn't have a ton of girl things leftover from when she was a baby.

She was satisfied with my answer but I heard her say softly before I left the room, "Well... then I guess we have to go shopping for girl closes, huh?"

I love that she says closes instead of clothes. It's the whole pluralization/possessiveness thing that she hasn't quite grasped grammatically yet. And yet, I love that she is able to form an argument of sorts and problem solve. No girl closes? No problem.. I know how to solve this-- Let's shop. And again, I love that she is so excited about a new sibling.

One day, when she says clothes, I'll long for these days. And it's after processing my busy days, that I realize that this is a season. A season that won't last forever.

May we all embrace the season we are in now.

~Steph