Charlie’s ankle braces were delivered today. So instead of PT he was fitted with his splints. (No PT pictures today- Sorry Meg) They are so cute and remind me of Forrest Gump. Because he wouldn’t keep his casts on his feet he was fitted with splints that can be adjusted or removed when he gets agitated. The straps are tightened to pull his foot into a tighter flexion.
Coop also had a chamber hearing test where he was inside a see-through sound chamber and the audiologist applied different levels of sound and looked for any behavior changes such as starting or stopping his cry, looking around etc. The tech that went with Charlie said that during the low-pitched sounds his eyebrows lifted like a startle. However it must not have been consistent because when Dr.Norby came to give the test results he said it showed “no response”. So we are going to proceed with the hearing aid trial (see picture above for hearing aid ear mold) and then cochlear implants, although we found out today that most insurances only pay for one ear and it is only approved for children one year and older. So we will be starting the appeal process now while we go through the hearing aid trials. Tomorrow is a big day for the little man. He has an 8:00 appointment for and MRI of his cochlea for audiology then off to get a CT of his brain for neurosurgery. Pray for smaller ventricles than last time and less atropy. I hope Charlie behaves tonight for his uncle Jared tonight.
Charlie’s ankle braces were delivered today. So instead of PT he was fitted with his splints. (No PT pictures today- Sorry Meg) They are so cute and remind me of Forrest Gump. Because he wouldn’t keep his casts on his feet he was fitted with splints that can be adjusted or removed when he gets agitated. The straps are tightened to pull his foot into a tighter flexion.
15 comments:
his eyes are looking so good open! how often does he do that? It sounds like progress up there. Praying for less atrophy!
love the new boots. good luck tomorrow little charlie cooper...
love and prayers.
Love the new kicks Charlie! they are way cute! You guys have the best family! Grandmas, Uncles staying overnight so that the mom and dad can have some alone time. How cool are you! Sleep well, little man! I hope the boogie removal nurse is keeping watch tonight too (although I do like the stories).
Have a good, restful night. Sounds like you've got a big day tomorrow.
I hope all goes well in the morning! Have a good night with the three of you at home. Britton needs you too.
Andrea M
I think the splints are going to be the next 'in' thing. Did Britt order the green straps? We are crossing our fingers, toes, arms, and eyes for some positive radiologic evidence tomorrow!
like ginny, i also like specific things to pray for. love the boots and socks, what a stylish old man, i mean little man... i hope everybody gets some sleep for the big day tomorrow - i know jay will, he usually sleeps in a chair.
ps, i still have hope for the low pitched startle...
Wow, his eyes looks so good! I thought that the hearing aids were not a good idea? I hope tomorrow's tests show good news. Get some good rest.
We'll be praying extra hard for Charlie tonight...thanks for continuing to keep this updated. We've grown so attatched. You both are so amazing. You might think that you are just doing what any parent would do in your situation, but you really are great examples. Good luck tomorrow.
Good night little Charlie! You are the craziest most adorable little feller around! I love you buddy.
We will be praying for you guys and positive results with your big day of tests tommorrow! We miss you guys so much, and think about you constantly. Please let me know if I can do cookie delivery again for you guys soon!! Love You All Tons!!!!!!!!!!!!
Hope all goes well. Insurance companies are a pain in the !@# aren't they?
B
I cannot blelieve what you guys are having to go through. (The Lord must REALLY love you guys to put you through all these trials)
Hang in there little guy, we are definitely praying for you Charlie Cooper!!
when will you find out about the tests?
Rox they moved thing back, so they are in the first test right now.
thanks, meg, for that update...I was getting anxious
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