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

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!

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!

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

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

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...

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....

Coming in August 2012, Lord willing...

Tearfully humbled and utterly grateful,

Stephanie

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

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!

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

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

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...

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...

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...

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...

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...

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...

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...

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

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!

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..

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