Re: Subj: Anyone else experience anything like this?

[Guest guest]

Hi :-)

Your a hoot!!! LOL Thanks so much for the link and the humor.

BIG hugs,

Kass, mom to Madison(3 1/2) and Chance(almost 7), suspected mito....and

Abby the Abb-ster(2)

stacimom@... wrote:

Dear Kass,

Your post is all-to-familiar to me. Noticing

a change, not sure if need

to be concerned about it, asking listmembers who have "been there,

done

that", having definitely mixed feelings about answers...

Relief to find out

what probable cause/expectations are, being pissed off that it's

one more

sign of mito. The being pissed off is from that tiny part

of my brain and

heart that still longs for the child of my girlhood dreams.

Now, what ballad

should be playing now?

"The men in my little girl's life." Absolutely

wonderful guys... just

never thought they'd be docs. Techs. Therapists. etc.

Sorry, just a challenging night. Trying

to enforce a 9 p.m. bedtime-

lights out, Wow. Just like I've seen other parents

of 6 yr. olds do on tv.

Her version of "Mommm". Gee. What did those baby books

we threw out the

window say to do?

Okay. 's Back. I meant to answer

your question re: change in

eating habits with the best resource I can think of: A webpage

from the mito

webring. Re: nutrition, Craig's dictation to his dad, Jim

is the best.

Here's a link to it, and the full addy you can copy and paste into

your web

browser if the link doesn't work. They explain the situations

much better

than I can.

Gotta go now. Miss Staci's stopped cooing for mom to come

in, she's started

kicking the wall. We live in a mobile home, she can't hurt

herself, but a

kick sure is a good attention-getter.

<A HREF="http://www.geocities.com/HotSprings/Falls/3484/craigsfood.htm">Click

here: Nutrition</A>

http://www.geocities.com/HotSprings/Falls/3484/craigsfood.htm

Peace, joy, and just came in... "wow. It smells

like Staci went

again." Oh, I just love how the Magic Bullet

(bisacodyl 10 mg.

suppository, half suppos. for under 12 years old) works. She'd

already gone

once while her LVN was here....

Enjoy the web ring. Mito is a very individual, unique disease,

yet every

problem Staci's had has been mentioned on the list before she had

it, or the

list helped us recognise it as a mito problem... instead

of a jumbled mix

of symptoms. Blessedly, the list and archives have solutions

to the

problems... what works, what doesn't work for each person...

and hope for

the future.

Good backrub, [i could use that more than a hug right now.]

Staci's mom.

Staci is almost 7, has a potpouri of Respiratory Chain Complex

problems, gt,

cataract surgery, controlled seizures, non-walkie-talkie, excellent

communicator, now looking like the Pepsi girl with Dorothy braids...

taking

us on a trip through Mito- Oz.