Wednesday, June 10, 2009

Post- updated !





We just got home from our marathon appointments at Children's Hospital. Keaton was a trooper ! He has been very quiet just soaking it all in. Our orthotist was very patient and kind. With the brace Keaton's measurements drop to 17/11. Keaton says the brace is very tight and he can't breathe. It will take him a few weeks to adjust to it. He will wear it for 2 hours, increasing 2 hours every day up to 20 hours. We also have to progressively increase how tight the brace is strapped.
We also met with the hospital social worker who helped us with our 504 planning form for the 2009-2010 school year. Next stop Neurosurgery on Friday - then it will be off to Shriners for another opinion ....
Friday- we had Keaton's neurosurgery appointment. The MD and PA were great. Keaton had tears the minute we arrived at Children's Hospital. He is overwhelmed with all this. The MD and PA were able to interact with him, get him involved and complete the neuro exam. We were shown the area of syrinx in the spinal column. The plan is to do a complete MRI with contrast to see if there is any other underlying issue such as a tumor, chiari or tethered cord. If none of these are found they want to take a wait and see approach~ monitoring the syrinx.

9 comments:

Cristy said...

Praying for your little man! Gianna doesn't even know she is wearing it now, so he will quickly adjust to his brace. Which Shriners are you going to?

Gianna calls it her turtle shell, so I will have to show her these pictures so she knows some boys wear turtle shells too :)

Mom 2 six said...

We are looking at Philidelphia- we have been told they are the most progressive with JS.

Chelley said...

YOU know that you are in my prayers!!


I hope that the smile in the first photo stays with him!! It is such a sweet loving one@

Bob said...

Just want you to know that I am praying for your family every step of the way on your journey. May our wonderful Lord continue to bless your family.

Cristy said...

Shelly,

The email came back undeliverable. Gianna saw Dr. Samdani who has a degree in BOTH Neuro AND Ortho and is a brillant and compassionate man.

Did you talk to Janet Cerrone? She is wonderful.

My email is: gnc86@yahoo.com

Steve and Kristen said...

504 plans are a great thing. It's much more open than in IEP and you can have a lot of input. Your little guy can too.

We'll continue to check your blog so we can pray for your family.

Valeri said...

You are always in our thoughts and prayers.

Ron said...

Oh my, such a young age to go through so much. I hope all works out well for him.

If you are in Philly maybe we can meet up. We are about 4.5 hours from there. Let us know.

HeidiD in CT said...

PS - hadn't seen this post earlier - I guess she had a boston brace too. One thing they did for Katie was cut a hole in the belly - helped with digestion and breathing if either ever becomes a problem!