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Re: update Fri

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Glad to hear you will be coming home today but I know how the stomach issues

must be causing you lots of stress. If you want to talk some more send me

your phone number to honeybear50317@... and I will call you back

sometime soon. Glad she continues to make some progress.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

update Fri

>

>

> Good morning

> Lots of updates to pass along. is stable, is starting to

> sign again, and is going home today. That's the good news. However,

> the results of her manometry and upper GI are in, and the news is not

> good. has gastroparesis and neuropathic pseudo obstruction.

> Her guts just plain do not work. Also, her hernia is now a full

> third of her stomach and is very floppy and waiting to strangulate.

> The surgeon wanted to operate today but Dr. Korson felt that a Friday

> afternoon was not the best time to do major surgery on a mito kid.

> So we'll be returning to have it done on the 25th.

>

> has made lots of progress but she's still a very different

> child from who she was in August. Her spunk is showing signs of

> returning and she's telling me what she wants. I think her

> difficulties will be more visible when we get home and she's

> surrounded by toys that her hands just can't operate. She'll be

> using a stander so that's one more piece of equipment in our tiny

> house. Cathing is going well but it's one more thing to add to our

> already overwhelming routine. Luckily our nursing hours have been

> increased but that depends on the agency finding nurses to fill

> them.

> So here we go. Wish us luck. Our home computer died so we're using

> the laptop most of the time. My email address is

> mom2colemankidz3@....

>

> Heidi, 's Mom

> 2 years, complicated mito kid.

> www.caringbridge.org/ma/heather

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

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