July 12th - we arrived at St. Louis Tuesday evening for Kyle’s SDR surgery today. We left home Monday morning and spent the night in Dayton, OH. We also got to meet Teddy and his family in Dayton. Teddy has very similar diagnoses as Kyle and is also a micro preemie. His mom and I met on Facebook when Teddy and Kyle were only a few months old. It was great to finally meet them. Kyle did surprisingly well for his first long distance car ride and ate very well on the road.
Yesterday was pre-op appointments with the surgery team, PT evaluation, and meeting with Dr. Park who performed the surgery today. Kyle was not very happy during the PT evaluation and cried and fussed pretty much the whole time. Nevertheless they were able to get what they needed for the evaluation because through the crying and fussing he did perform most of the tasks they were asking for. The meeting with Dr. Park went very well. His official diagnosis for Kyle was spastic triplegia, but he thought his right arm would improve after the surgery and the diagnosis would then change to asymmetrical spastic diplegia (since his right side is more affected). He predicted that Kyle will walk independently in all environments after the surgery and that he will be able to maintain that level of ambulation. He said SDR should completely eliminate his spasticity as he did not notice any signs of dystonia. He said Kyle should start taking independent steps within a year after surgery.
When got to the hospital just before 8:30 this morning to get him ready for his 10 am surgery. The OR nurse called around 11:15 that they had just started the surgery and everything was going well. Surgery took about 2.5 hours and Dr. Park said everything went well and he cut about 2/3 of his nerves. He said he would like to see him walk soon! Kyle was somewhat irritated and agitated after he woke up from surgery and remained that way for the rest of the day. A new chapter of his life begins today and we can’t wait to see what the future holds for him!
Yesterday was pre-op appointments with the surgery team, PT evaluation, and meeting with Dr. Park who performed the surgery today. Kyle was not very happy during the PT evaluation and cried and fussed pretty much the whole time. Nevertheless they were able to get what they needed for the evaluation because through the crying and fussing he did perform most of the tasks they were asking for. The meeting with Dr. Park went very well. His official diagnosis for Kyle was spastic triplegia, but he thought his right arm would improve after the surgery and the diagnosis would then change to asymmetrical spastic diplegia (since his right side is more affected). He predicted that Kyle will walk independently in all environments after the surgery and that he will be able to maintain that level of ambulation. He said SDR should completely eliminate his spasticity as he did not notice any signs of dystonia. He said Kyle should start taking independent steps within a year after surgery.
When got to the hospital just before 8:30 this morning to get him ready for his 10 am surgery. The OR nurse called around 11:15 that they had just started the surgery and everything was going well. Surgery took about 2.5 hours and Dr. Park said everything went well and he cut about 2/3 of his nerves. He said he would like to see him walk soon! Kyle was somewhat irritated and agitated after he woke up from surgery and remained that way for the rest of the day. A new chapter of his life begins today and we can’t wait to see what the future holds for him!
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| Kyle's first Happy Meal! |
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| "Hey buddy! - Kyle meets Teddy for the first time! |
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| This is how we play |
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| Kyle in the hotel |
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| Chicken fingers - yum! |
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| Getting prepped for surgery |
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| All done! Recovery begins! |
