Ann (Elijah's mommy)

[Guest guest]

I just visited your caringbridge site and read about your rough trip

for Thanksgiving. Sorry to hear is was rough. I understand about the

packing issue. I always bring TONS of medical equipment and meds, etc. and

then to find something missing! RRRR! The last trip to Mayo, I left

Asenath's frig. meds! I couldn't believe it! Thankfully she was inpatient

the whole time unexpectedly, so they covered the stay with their own meds.

Even using a check-off list, I still forget at times! LOL! And going

anywhere for just a day looks like we are packing for a month! There are

" the necessities, " and of course the might need it so better bring it, " as

well as the " pleasure/can't get along without it " possessions (such as toys

or pillows). It all adds up to be sooooo much!

Traveling also can be so tiring. Every Mayo trip requires several days

to recuperate for me. I literally have to go to bed and stay there for a

day or two, except for short excursions to attend to Asenath or Zipporrah.

Thankfully my two oldest ones can play with them and keep them busy on those

days! I used to be much sicker before when the older ones were little

and I couldn't take those needed breaks.

But on the other hand, oh, isn't it nice to be with relatives as you

said?! It is bittersweet to see other kids the same age as our struggling

ones, but so nice too. We spent the holiday locally and did not go to my

parent's house sadly. Too soon after getting out of the hospital to travel

we thought. My husband's parents and relatives gathered locally and it was

a nice day without much difficulty and not much preparation thankfully. I

made a couple loaves of cinnamon swirl egg bread to take, but no major

cooking this year. YEH!

Sorry this was long but wanted to let you know I read your update and

all. Oh, I updated ours again too, so feel free to read it. Not much you

probably don't know already though.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

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

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, 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)