It's... a

-nother boy!

We were all shocked. Even Brandon thought it was a girl this time!

The best news of my appointment is that there is NO EVIDENCE of a subchorionic hemmorhage.

That is right...

NONE.

Praising the One I know and love!

There is still a need for prayer though. I have a marginal previa which means that the placenta is too close to the cervix. There is still plenty of time for it to move... well it doesn't really move, the uterus stretches and the placenta goes with the uterus.

Anywho, it does make me at risk for more bleeding and if it doesn't move, then I could need a repeat csection.

But I've been taken off of bedrest and told to take it easy. (No heavy lifting, etc.)

Once again, I'm surrendering this to God. He knows how our baby will come. Julianne needed a csection to get here safely. And as a mother, I'm willing to sacrifice my comfort and desires for my wee one.

Oh and his name is Isaiah.

A few months before I knew I was pregnant, we were studying a passage in Isaiah and the hair on the back of my neck stood up. I love lots of passages in Isaiah. I told Brandon after service, that the name Isaiah really stuck with me. When we were scared we would lose our baby, several of my friends sent me verses from Isaiah and it again, made the hair on the back of my neck stand up... God is just soooo good like that!

My favorite passage, one I repeated several times a day on bedrest was from Isaiah is 40: 28-31.

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men will stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. " (NIV)

Love that. What a powerful passage to those that are demoralized and weary.

Isaiah's middle name is Samuel.

1 Samuel 1:27 is often quoted.. but rarely do you hear the next verse with it.

"'I prayed for this child, and the Lord has granted me what I asked of him....' " - 1 Samuel 1:27

and then:

"So now I give him to the Lord. For his whole life he will be given over to the Lord.' And he worshipped the Lord there." - 1 Samuel 1:28.

What a powerful statement. One of surrender and trust. And faith. And worship!

Brandon and I have walked a long road so far. We've had trial after trial here lately, and we are still living joyfully in a relationship with God. But we realized that this baby isn't ours. He's the Lord's. We prayerfully hoped and prayed while surrendering... and what a sweet surrender that was.

I can't wait to see Mr. Isaiah Samuel. His story started before his birth... and I've already learned so much from him!

~Stephanie

Blabberings from Bedrestland...

Whew, bedresting is exhausting and mindnumbing. We are getting lots of school done these days because mama can't do anything else and we are homebound. Julianne is almost done with her kindergarten assignments and we had to purchase another workbook to keep her going in something because she looooooooooooooves school so much.

Lainey is chugging along too. She isn't as eager as Julianne but we are steadily working through the remaining assignments she has.

Wednesday we got a call from our OB's nurse telling us that the pharmacy had insurance approval for the Makena shots and we just needed to speak with them before they could ship them. Brandon got to be that person because all of the red tape I've dealt with this year as made me frustrated and I'm supposed to be relaxing. I could build us a house out of the red tape we've dealt with this year.

The shots were overnighted to our OB's office and I got to be the lucky recipient that afternoon. YE-OUCH! I'll continue to get those shots every week until 32 or 35 weeks. (I find out more tomorrow.) Brandon sweet talked the nurse into letting us have a listen to the baby's heart beat as my prize and the heartrate was 162!

Seeing the doppler makes me so nervous each time because we've had such a hard time finding the heartrate easily and that always makes me panic. So I hold my breath and pray but this time it wasn't nearly as panic-inducing.

I walked out on cloud nine.

But returned back to bedrestland.

Tomorrow, I have an appt at 3:15 (eastern time) for an ultrasound and then an office visit with my OB. He told us that they will be measuring the hemmorhage site, seeing if the part of the placenta re-attached, and checking cervical length. A 2nd trimester SCH raises risks for preterm labor so that is concerning given my history (and what we are hoping the shots help with!)

Then he winked and said "We'll see about getting a peek at gender as well."

So we might! If we do, then in Bee tradition we will announce the baby's name. If not, then I have at least one more ultrasound at 18-20 weeks. That is the big anatomy scan.

Eventually we will know!

Thanks for the prayers and thinking about us. We greatly appreciate the thoughts and prayers.

I'll update ASAP tomorrow night.

~Stephanie

The Mindgame

I've had a tremendous amount of quiet time in my head which can be seen as a good thing or a bad thing depending on who you are. I'm on Day #9 of bedrest and while I'm not a happy camper about being sidelined as my family continues on without me playing an active role, I'm doing what I was told was the ideal to give our baby the best chances.

I hate chance. Anyone that knows me for about 5 minutes knows that I'm a play it safe kind of girl. I want a sure thing. And as I get older I realize more and more that nothing is a sure thing while you are here on earth. Not a thing here is a sure thing.

I watched a friend bury her husband. Growing old with the man you love isn't a sure thing.

I watched a friend lose two sons in a row. Babies making it safely through pregnancy isn't a sure thing.

I walked a road of infertility and miscarriage and watched several friends as they walked the same road. Getting pregnant and staying pregnant just isn't a sure thing.

Brandon and I have quietly whispered in the dark (so as not to have to watch the tears fall down each other's cheeks) about the what ifs. We've talked about the hard possibility that our baby may not make it. (The subchorionic hemmorhage is behind my placenta and raises the odds of placental abruption quite a bit.) I'm not in Lala-Land where every problem is solved neatly in a 30 minute or 60 minute show.

This is real life-- where the only thing that is a sure thing is God. And I've clung to Him. I lay my fears and worries at His feet each day-- sometimes several times a day. I've re-read stories about miracles and things that look horrible from an odds point of view. Just because I'm a believer doesn't mean I'm promised an easy life. What I am promised is eternal life. THAT is a sure thing. My ONE sure thing. And that joy and hope keeps me going each day.

I'm in for the fight. This is a MINDGAME. I can't let the excitement be snuffed out. I simply refuse!!!!!

I am still refusing to let these complications steal our joy. The girls talk about "when our baby comes" and I force my mind go there instead of shielding my heart. We've arranged our school schedule to take a break in the fall "when our baby comes." We've chosen names. I've looked at coming home outfits.

Years ago, I wrote in my inspiration journal the following quote:

"Quit telling God how big your storm is, and start telling the storm how big your God is!"

So I am. Every morning, I lay in bed and praise the One that knows how this turns out. I thank Him for one more day with our baby. I thank Him for the children I have and my husband, who has been my biggest cheerleader during these 9 days. While I hope with all my might, I've tearfully prayed for the Lord's will to be done.

If we lose our baby, we will grieve. But every second that I'm still pregnant, I will continue to look forward to that little life. The 5th set of little feet joining our family. Our tiebreaker.

Either way, a testimony is being written. I'm just the storyteller. How blessed I am to know Him and recognize His works in our lives.

~Stephanie

No Regrets...

So an anonymous commenter asked me if I regretted announcing my pregnancy so early.

Short answer: No.

Long answer: Some people don't announce until after the 12th week of pregnancy. The supposed "safety mark" of pregnancy. I'm past that... so if I were to wait, when would you suggest I had waited?

I absolutely positively have zero regrets about announcing as early as we did. Every life is special and valuable and deserves to be celebrated. Some people celebrate for a long 9 months and then a lifetime. Some celebrate for a much shorter time but each life deserves to be celebrated... thoroughly.

We've cried tears of happiness upon the news that we were blessed with another life to love. We gasped in awe at the sweet little heartbeat fluttering on the screen at our first ultrasound. We laughed at our wiggleworm as the ultrasound tech struggled to get the measurements she needed for her reports. We have daydreamed ahead to having another little one toddling around our home.

We've also had a few restless nights here lately. We've uttered prayers for hours on end pleading for our baby to still be there the next time they check for a heartbeat. We've willed its little heart to continue beating.

But our joy isn't gone. I'm refusing to let the joy be snuffed out by the worries. So we celebrate. Each day we celebrate one more day with our sweet, tiny baby. We remain cautiously optimistic.

Tomorrow things can change. My appt is at 9:45am and I could walk out in tears after hearing terrible news.

And the Lord will still be good. He will still be sovereign. And we will still worship Him and praise Him.

But tonight, we thank Him, for one more day with our sweet child. I'm not borrowing trouble. I'm resting in the palm of His hand.

Are you celebrating the today? Or has the worry of tomorrow sucked the joy out of your today? Friends, none of us are promised tomorrow. And not a worry in the world adds a minute of time to our today.

I encourage you to celebrate today.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~Matthew 6:34

~Stephanie

Downhill Slide..

Saturday night, I was on top of the world. I was determined that we were going to attend church. I desperately needed to be among God's people, in His house, and soak up His word. I have no idea how we lived here 2+ years before finding a church home.

I had barely made it a month.

So I set clothes out, packed diaper bags and went to bed early. I prayed for all distractions and hindrances to move out of the way.

And then I was woken up at 4 am. Nothing was wrong, but I couldn't sleep. I had the most energy I've had in months. I could barely contain myself.

So I blogged. And then I got up and took a shower. And straightened my hair for the first time in so long I lost count!

We went to church and it felt SO good. We were so touched by how many said they missed us and asked how Xander was doing.

I shared how we figured out the Prevacid and had had the best day in a long time just the day before. So many were so happy for us.

And then when I went to pick him up from the nursery we were told that he had two loose diapers.

Hmmmmmmmmmmmmmm...

He was much fussier than he had been at lunch. Brandon and I exchanged worried looks and we both held our breath but his diapers were fine for the rest of the day.

The next morning, he had diarrhea.

And this evening I've changed several diarrhea diapers. *sigh*

After phoning our doctors, we are doing another Cdiff test tomorrow. *sigh* Another clear test would mean that we are dealing with something else. A clear test would mean that this is time for his endoscopy and sigmoidoscopy.

A positive cdiff test means that we put him back on antibiotics and depending how far it has gotten, we may be readmitted. *eeks*

We'll be waiting for those results with baited breath. Either way, something has to give for our guy. SOMETHING has to change for him.

Please pray for wisdom and strength. I can feel the panic starting to rise up within me again.

It was nice feeling normal for Saturday and part of Sunday, but once again I'm reminded just how much things have changed for us. What a cold slap of reality that was.

~Stephanie

Another Loop..

Sunday, we were so excited Xander ate about 10 fresh blueberries. Before all of this craziness, Xander would eat blueberries on top of his coconut yogurt. I thought we were getting somewhere!

And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)

Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.

And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.

Sooooo, blueberries are now on the No No List.

In the meantime, Solomon spiked a fever.

I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.

Sigh...

Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.

We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!

Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.

Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.

So for now we are NOT using antibiotics until we know FOR SURE that we have strep.

In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.

See the circle we can't seem to get out of?

While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.

Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.

While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.

Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.

Tomorrow we will have Xander re-tested to make sure the cdiff is gone.

Here are our big prayer requests:

1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.

Thanks!

Stephanie

More Fingerprints...

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!

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

Raw Emotions...

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

Variables... still not at baseline

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

FPIES: Food Protein Intolerance Enterocolitis Syndrome

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

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...

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

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

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

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