Monday, March 28, 2016
Stand Up
Even though I knew this was going to be a milestone year for Thomas, this moment with his AFO (ankle foot orthotic) on for the first time will be forever etched in my mind....
The look on his face when he stood for the first time was one of joy, confusion and determination. He loved it. Something he has wanted to do for so long and he was suddenly able. I know this isn't the first time that he has accomplished something that was such a struggle for him, and it certainly won't be the last, but to see him do it for the first time still brought a tear, or twenty, to my eyes! Love my guy!
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Sarah, your I stumbled across your blog and it's given my so much hope today. I had tears when I saw the photos of Thomas with NO TUBES going into or coming out of him! My stepdaughter gave birth a week ago to beautiful Brynlee Rene, who has myelomeningocele with vocal cord paresis and stridor. She had decompression surgery today. I've had visions all week of a vent and a trach and to read that your little boy is eating and starting to walk ... I'm just so happy for you, and this gives me hope.
ReplyDeleteIf I might ask -- how long after the decompression surgery were you aware that it hadn't activated his vocal cords? And what sorts of treatments has he undergone since then for the vocal cord paresis?
Thanks again, so much.
Hello Ms. Lisa! I am so glad you found the blog. Congratulations on little miss Brynlee!!
ReplyDeleteAfter Thomas's decompression the stridor did not go away and his cords still were not moving. This was leading to a trach, but the doctors at our hospital had another procedure to try first. It was called an Anterior/Posterior Cricoid split. He had this done about 3 months after decompression and we haven't heard the stridor since. His vocal cords are now moving and his apnea is gone. What hospital are you guys at? Cincinnati Childrens is where we had the procedure done. It is not widely known as it is so new, but we heard from another family that had it done about it so we asked. I would be happy to talk further if you have questions. Thomas is doing great now, still not talking but making lots of sounds and we are thinking he will talk one day, but he signing in the meantime. Please let me know if you would like more information or if you or your step daughter need anyone to talk to. I remember how scary and overwhelming everything can seem at first, but Miss Brynlee will amaze you!!!