Wednesday, November 30, 2011


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

But things didn't quite go as we expected.

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

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

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

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

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

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

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

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

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

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

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

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

He survived his birth and withdrawal.

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

He was spared from contracting Hepatitis C.

He has shown NO developmental delays.

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




Donna B said...


I have a friend that has Neurofibromotosis. When she was in th 4th grade she developed an optic nerve tumor and had to have one eye removed. Since then she has remained relatively symptom free.

She has two children, her daughter is fine. Her son has it. She told me treatment has gotten much better in the past 25 years.

If Xander does wind up with the diagnosis, let me know and I can get you names of specialists that you can utilize.

Erika said...

That is so scary, Steph. Will defininitely be praying.

"Are These Kids All Yours?" said...

PRAYING with you and over your family!!! God ALWAYS KNOWS and ALWAYS CARES and ALWAYS WILL BE VICTORIOUS!!!

Rachael (IdaMom) said...

Praying. I know pretty much nothing about Neurofibromotosis. But I know our God is great and can be trusted.

Kristina said...

oh steph...praying for you!