Frustrated with continual episodes (concerning Zipporrah)

[Guest guest]

In the past three weeks Zipporrah has had several episodes of weakening.

She has been battling these almost invisible viral attacks. The only way I

can tell she is fighting them is some fevers and occasional dripping of her

nose and redness under her eyes. These are mild and yet several times she

has woken up with new issues. She has went back to being right handed

because her left side has been hit a couple times, her right leg was

struggling with neuro-motor planning issues and increased weakness causing

her knees to buckle, and now today her left leg is buckling and she won't

put weight on that leg much. Her SP therapist has noticed increased droop

in her cheek on the left and increased problems with oral motor issues.

I know this is just a part of how my girls are affected by Mito, but

it is so frustrating to see Zipporrah struggle in such a similar way to how

Asenath has been. The fall/winter season has just begun and I am really

wondering what this winter will bring if Zipporrah or Asenath get bad

viruses. There is also a fear in me that Zipporrah could also go down the

route of CNS vasculitis like Asenath because they are starting to believe

that Mito is the whole reason for it in Asenath. Sorry to vent. It's just

hard some days, you know.

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, neuro-motor planning issues, SID, GERD,

100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

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)

[Guest guest]

Darla,

I am so sorry to hear about Zipporrah. I wish I could help you,in some

way,,but all I can do is tell you that I'm sorry,and I hope she gets better

soon. You mentioned the winter,,where do ya'll live ? I wonder how the cold

weather might affect a child like yours. We live in Texas,,so we don't really

have to worry about too much cold weather. And since I homeschool,,we don't have

sick kids at school,to worry about. Anyway,,,I was just wanting to let you know

that you and your kids are in our prayers

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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