2 Year Old's Chiari Malformation 1 with Paralysis???

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby brianfsmom » Fri Jan 25, 2008 9:59 pm

Dustin,

Thanks for coming back and giving us an update. I know I, as have many others, have been wondering how everything was going. That is positive news, and I hope everything will continue to go well.

Laminectomy and craniectomy do go hand-in-hand as part of decompression, as often does a duraplasty. It's great news that the syrinx has shrunk by so much.

I can't offer any recommendations for PT, but you do have my prayers. Please continue to keep us updated, and I wish you the best.
brianfsmom
 
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Postby angie7 » Sat Jan 26, 2008 8:38 am

Thanks so much for updating us. I have been thinking of him and your family. It sounds like he is on the road to recovery and that is GREAT news!!!! Keep us posted on how he is doing.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Dustin » Mon Jan 28, 2008 11:57 am

Got back home last night from the best weekend we have had since Dax's injury. We played, he laughed, we acted silly, watched his favorite shows, and read all his books. His anxiety and agitation has gone away (for now) and I hope it stays away.

They did the first trach change yesterday and we moved out of the PICU to the Rehab unit. They were so happy to see he has lots of movement in BOTH arms on command. About a dozen times he lifted his arms about 4-5 inches off the bed onto his belly. They are un-coordinated right now, but day to day his movmemnt is getting stronger. We are pretty happy right now with his progress. Thanks for the prayers and concerns. I feel that we are actually ON the road to recovery and not trying to get on that road anymore.
Dustin
 
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GREAT news

Postby brianfsmom » Mon Jan 28, 2008 12:35 pm

Dustin,

That is really wonderful. I'll keep you all in my prayers! Very good news indeed.
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Postby Janice » Mon Jan 28, 2008 12:52 pm

Hi Dustin,

Thank you very much for the update.

I'm happy to hear the great news. :D It's exciting to hear about his movements and laughing. Happy times indeed.

I pray that Dax stays on the road to recovery and that his time in rehab is well spent and extremely successful.

Take care and thanks again for the update. I will keep you all in my thoughts and prayers.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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