5474Re: Introducing Myself
- Jan 2, 2008--- In Myotubular_Myopathy@yahoogroups.com, kristin.burlage@... wrote:
>4 1/2 and was diagnosed with MTM1 at 4 weeks old. It's good that you
> Hi Virginia,
> Glad to hear your son is doing well post surgery. My son Justin is
found this site there is a lot of very helpful suggestions and support.
> Kristin BonnyGlad to meet you. I've been off line for a few days good to see so
> -------------- Original message --------------
> From: "bv_mixednuts" <bv_mixednuts@...>
> Hi i just wanted to introduce myself. I am Virginia and I have two
> sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
> diagnosed with myotubular myopathy a month ago through a muscle
> biopsy. We have genict tests outstanding to see if it is X Linked but
> the docs are pretty sure he has x-linked mtm. We are doing okay and
> hoping we will be able to bring him home in 4-6 weeks if we dont hit
> anymore bumps. So far he has been healthy other then a blood infection.
> Christopher had surgery yesterday for a tracheotomy, g-tube, and a
> ladds procedure to fix an intestinal malrotation they discovered.
> Christopher went through surgery with no problems and is doing really
> well. They put him on cpap just a few hours ago and he was doing well
> when i left the hospital.
> Anyway we live just south of Seattle WA. Christopher was born at our
> local hospital and transfered to Swedish NICU for 3 weeks then to the
> PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
> once we found out his diagnosis.
> So that's the basics, hope to get to know some of you.
many others are out there. We've had a hard time finding anyone
through the Parent Match program at the hospital.
I hope your son is doing well.
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