Friday, December 16, 2011

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.



4 comments:

Tracy said...

((Hugs)) Thanking the Lord for his faithfulness and comfort to you right now.

Debbie said...

LOVE that you got to share with the doctor!
His plan is perfect.
(((hugs)))

Danielle said...

Thanks for all the updates, Stephanie. I am praying for all of you. How neat that you are able to be a witness in the midst of personal trial.

A.W. said...

I was wondering how he was doing!! I'm so glad I found your blog. I'll keep praying for Xander. :)
~andee