Kennedy's Dad Finally Back

[Guest guest]

Greetings to old friends and new. This is Kennedy's Dad back on-line after

six weeks of technology-induced absence I've finally taken the time to fix

this stinkin' PC and jump back in. First I disappeared to deal with Y2K at

work, then Kennedy was ill for a while, then I and Ann and all the kids

started giving the flu to each other. So after a month gone, I logged back

on, promptly downloaded about a billion pent up 'mito-mails', blew out the

hard drive, and then bungled up the whole box while trimming old junk off

the drive. The coup de grace' was when the CD drive started making sounds

like Kennedy's vent when the battery fails. So anyway, the box is back and

so are we.

Since so many people join the list, and since one of them might have a key

that I really could use to help my little girl, please let me e-bore you

with Kennedy-history in case someone knows something that might help.

Kennedy was born after a normal gestation period and was perfect for three

months. Then started to regress, no weight gain, lost eye contact, stopped

smiling, etc. At nine months she experienced respiratory failure during a

bout with the flu and has been ventilated, g-tube, nissen, ever since.

She essentially exhibits the neurological equivalent of a one month old who

can't see. She can handle off-vent timespans of thirty minutes or so when

she is otherwise healthy. She can not hold her head up, sit up, etc. She

does not speak, smile or cry. She will whine but with no facial emotion.

She LOVES to eat her hands, and will chew her fingers to the point of

swelling if we don't catch her in the act. She is exclusively fed on her

g-tube. She has no reflux problems, and generally experiences no bowel

difficulties (although she will drop a brontosaurus doodie diaper on us in

the truck EVERY time we are all dressed up and in a hurry).

We did muscle biopsies (frozen) when she was a year old and the Cleveland

clinic diagnoxed her with Complex III deficiency. We do not necessarily

believe it, but have no other trail to follow.

If anyone out there, even if we have already conversed, has a similar kiddo

then please reverse e-mail me with as many specifics as you care to share,

including meds, treatmnents, etc., especially if they have improved your

child's condition. If you wish, direct private email to jhairston@... .

To old friends, thx for letting me e-drone on for a moment. To new friends,

may your patience and your insurance maximums be everlasting!

God Bless all your kids, and thanks for any help provided -

Hairston

Kennedy's Dad

(Complex III, vent, g-tube)

[Guest guest]

In a message dated 02/20/2000 8:39:47 PM Pacific Standard Time,

jhairston@... writes:

> To old friends, thx for letting me e-drone on for a moment. To new friends,

> may your patience and your insurance maximums be everlasting!

>

Glad to see you back!

Kathy Corley

mom to and (mitochondrial encephalomyopathy, complex I and III

defects)

[Guest guest]

Glad to hear your back-enjoy the " wording " on your posts! Michele

[Guest guest]

hey john!

gppd tp see you back and posting again....your story of the dental infections

gone haywire still brings tears of laughter to my eyes! sure wish i had more

answers for you but, alas, we seem to be in the sadme boat as you: searching

for answers and only finding more questions!

anyway, good to have ya back

ruth