5484Re: Introducing Myself
- Jan 5, 2008Hello Virginia,
My name is Jenna, mother of a 2 1/2 year old little girl named Allie (Allison). She was
diagnosed with CNM after her second muscle biopsy just before she turned two. She is
fed through G-tube only, she does not walk or stand by her self however on
thanksgiving day she crawled for the first time ever and has not stopped since.
I am happy to hear that your son Christopher is doing well and I'm very glad that you
found us! As I'm sure you've already found, this group is amazing!
--- In Myotubular_Myopathy@yahoogroups.com, "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.
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