5477Re: [Myotubular_Myopathy] Re: Introducing Myself
- Jan 2, 2008Hi Virginia,Glad to hear Benjamin is doing fine. You willdefinitely have your hands full with a 2 year oldand 3 month old.Both boys have x-linked MTM but they aredifferent in many ways. Both boys are trachedand have g-tubes. Connor had 6 cardiacarrests when he was between the age of4 months and 6 months. He is mostly ventdependant. He does come off the vent about2 hours a day. Connor can't sit up and musthave someone near him at all times. Kyle onthe other hand, is very active. He attendsregular Kindergarten class. He is off the ventduring the day except when sick. Only usesit at night. Kyle has operated a power chairsince he was 3 1/2 years old. He can also use amanual chair as long as it is not on thick carpet.He is very vocal with his speaking valve. Kylewill try to do anything his older sister does. Heknows sign language and we are in the processof getting him an augmentive communicationdevice. Both Connor and Kyle are doing great.We have managed to keep them out of thehospital now for Connor it has been a little overa year and Kyle will be 2 years in March.I'm glad you found this group. It has been agreat help to our family. Without it I don't knowwhat we would have done. The support isunbelievable. If you have any questions, don'thesitate to ask. One of us will be able to help orat least put you in the right direction.Take care,Darlene----- Original Message -----From: bv_mixednutsSent: Wednesday, January 02, 2008 7:05 PMSubject: [Myotubular_Myopathy] Re: Introducing Myself
--- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
> Hi Virginia
> Welcome to the group. My name is Darlene. I have
> two grandsons with x-linked MTM. Kyle just turned
> 6 years old on the 15th and Connor is 2 years old.
> I'm Kyle's primary caregiver. This is a great place
> for information and support. Glad to hear
> Christopher is doing so well. Does Benjamin show
> any signs of MTM?
> Take care
> ----- Original Message -----
> From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>
> Sent: Friday, December 28, 2007 4:02 PM
> Subject: [Myotubular_ Myopathy] Introducing Myself
> 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
> 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.
Benjamin our older son does not show signs of MTM but we honestly
don't know what to look for. Benjamin is as far as we can see a
healthy 2 year old. He has hit all of his development milestones
early or on target so we pray he will not be affected by MTM
Do both of your grandsons have MTM with the same severity? Are they
ventilated, how are they doing?
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