Mitch & Lexi-A big Happy Birthday!

[Guest guest]

darla,

thanks so much for the bday greetings for my babies.

ruth

[Guest guest]

Just thought I would say happy Birthday again to Mitch. And I am not sure I

heard Lexi had a birthday, so Happy Birthday to her too!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

Re: How common is Tachycardia with Mito? And why?

> Tamara,

>

> Lexi has had tachy episods since birth. Always, like you mention,

> accompanied with paleness and in her case, dusky episodes where her sats

> drop to the low

> 80's. I haven't ever had an exact " why " ...then again, it's mito. Why

> does

> ANY of this happen?!?!?! I now know to look for some triggers: is she

> too

> hot, cold, excited, tired, in pain for another reason (cat scratched her

> last

> week and triggered one), hasn't gone to the bathroom, etc. Not that it

> stops the

> events, just kinda helps me make sense of it in my own brain, ya know?

>

> I have the running joke with Lexi that she will graduate from high school

> still on her monitor. She does NOT think this is funny. Our doc wants us

> 6

> months seizure free before giving it up. yeah, right. In my dreams.

>

> Hope this helps.

>

> ruth

> mom to Mitch (baking his 10th bday cake as we speak) and Lexi (just turned

> 7), both mito affected and my treasures

>