Re: [Myotubular_Myopathy] update on Kyle
- Oops... Sorry Darlene. I read your name but had Ann in
mind when I sent the response...
--- ANN MILLER <dm4462@...> wrote:
> Hi Kiera,Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>
> Glad to hear Liam is doing good. I was worried
> him. He has been in our prayers everyday. Is he
> Robinul or anything to help with the secretions?
> Kyle was about 4 months old before we started
> any big improvements in him. His biggest
> were when he came home. He came home when he was
> 6 months old. After two weeks home, he started
> to touch the toys I had hanging in his crib. We
> have our
> good days and our bad days. But there have been
> good than bad over the last 3 1/2 years. It's hard
> believe he will be 4 years old in December. People
> saw him when he was born and haven't seen him in
> say it's hard to believe it's the same child when
> they see
> him now.
> We will continue to pray for improvements in Liam.
> God Bless,
> ----- Original Message -----
> From: Kiera
> Sent: Wednesday, August 03, 2005 3:38 PM
> Subject: [Myotubular_Myopathy] Liam Update
> Hi everyone. Glad to hear about everyone's summer.
> Sounds like Kyle is having a grand time. And
> I pray that Javad's time is coming.
> Liam is doing okay. They had been trying him on a
> breathing aparatus, Vapotherm (widely used in the
> States but new to Canada) but he wasn't showing
> improvement and requiring tons of suctioning. We
> making the switch from Bubble CPAP to Vapotherm
> gradually, increasing the number of hours each day
> tolerated. Isaiah and I went away for a few days
> July for a much needed reprieve and the day before
> got back he blocked, requiring bagging so they put
> back on Bubble full time. We're not sure if it's
> Liam is not improving or that the Vapotherm isn't
> working so he's been back on Bubble now and seems
> be doing better. Today we had him off for a bath
> some play time, one hour total, and he seemed to
> okay. Only time will tell.
> We're talking about feeding tubes. At this point
> are considering a G tube but they want to do a Ph
> probe first to see if there's significant reflux.
> there is, we might consider a GJ.
> He's an incredibly playful and happy little guy,
> always smiling and interacting, despite being
> to various aparatus 24/7 and having suction
> shoved down his throat and nose. We've hardly
> any sound coming out of his mouth until the other
> when he discovered that if he growls, he becomes
> more audible. It was quite funny to watch.
> Anyway that's all for now. Thanks all for being
> and hope you enjoy the rest of your summer.
> Kiera, Isaiah and Liam
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