Re: Heidi (from Darla) We are fine!

[Guest guest]

Life is beginning to calm down a bit now. For a couple of weeks we had

to deal with not only the viral attacks but also the scheduling changes of

all the therapies for Joey and . We didn't know would

need so much help, but unfortunately see does. She is so precious and so

tiny, but has been quite delayed due to lack of stimulation from her past

home. Same thing was an issue with Joey so it has been neat to see them

both making major changes and doing well in our home. We have had to really

do some scheduling " miracles " by having up to three therapies going at the

same time in my home on Mondays and actually have been able to fit in the 19

hours of therapy per week needed for all the 5 kids needing it. We plan to

decrease both Asenath and Zipporrah's PT soon though as they are doing

decent in that area presently. But with Asenath, Zipporrah, Joey, and

all having PT, OT, and SP, and Marquis having SP, it makes for a

busy home with people coming and going all morning. We have arranged it so

most therapies are done before 1 PM or near that time so the rest of the day

is free with no visitors. We hope as time goes on that several of these

therapies will decrease or stop but for now, each is very important to do,

so we have made adjustments to do so. One good thing is that we have to

have a clean upstairs for the therapists to work in most days so the

" disasters " get cleaned up much faster! LOL

Thanks for asking how we are. I have been pretty quiet on here, but

have been reading everything. Hope all is going well your way.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

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

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

To Darla

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> Hi Darla,

> It's nice to see you posting again! I hope that means that things

> are going a bit more smoothly. How's your new little guy doing?

> Heidi, 's Mom

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

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