LOIS-

[Guest guest]

I’m glad you enjoyed it! You know

how it is… we have to have an outlet- and this is mine!!! Thanks again.

From: Mito [mailto:Mito ]

On Behalf Of lois saunders

Sent: Monday, April 25, 2005 11:33

PM

To: Mito

Subject: RE: Introductions- from Suzanne in AZ

Suzanne,

Thank you for sharing the site! I love it,

you did a wonderful job. I really liked the footsteps entry, but what really

got me was Dear Little One, Things are not

always what they seem. It made me cry, not tears of pity, but tears of

living every word of the story. I've been

very quiet lately, I had to tell you what an amazing job you've done though.

Lois

Introductions- from Suzanne in AZ

I think this is a great idea. I get confused sometime, trying

to remember who is who. Hopefully I will meet some of you in St. Louis . I look forward to it.

So, I am new to all this, about a year. My story with Zoe my

almost 3 year old, is the similar, vague consistant, I know something is wrong

song!!

She was delivered a bit early by c-section, fussy baby, not

a lot of sleeping, lots of crying, unexplained fevers. Peds saying it was all

normal, big sister bringing home ear infections etc. etc.. croup etc. I got

very aggressive at about 9-15mos, when her strabismus showed up and her head

growth accelerated.Had to do my own specialist referrals, private therapies

etc. Found no answers, became obsessed and took her to the Clev. Clinic.

Through the grace of God, we ended up with Cohen reading her files. Turned out

her brain MRI was misread as normal. The history and labs and MRI all

pointed to mito.

He took her as a patient and began testing. His diagnosis is suspected complex

1. She currently is learning to use forearm crutches, but almost 50 percent of

her cerebellum is missing, she has malformations in her left fronta l lobe and

myelin damage- but no documented seizures yet. Perhaps a suggestion of

demyelination- but nobody wants to talk about that( any help on this would be

great) .She gets infections easily and crashes hard, lots of quick hospital

visits last year, but none yet for 2005. She has about 50 verbal word

approximations now, 100 plus signs, hypotonia throughout her body including

orally, flat feet, heat sensitivity, frequent sweating, feeding problems (

prefers to drink milk through the night vs. solid foods) and technically has an

MMR diagnosis, however she has complete cognitive abilities as to all that is

going on around her. She uses a reverse walker and due to the cerebellar issue

has very poor balance reactions. She seems to seek stimulation and cannot fall

asleep by herself at night. She is ( thank god) an affectionate, sweet,

outgoing happy kid.

Her big sister Olivia, almost 4 , has been complaining of

lots of fatigue over the last 6 mos. Has these nasty alter ego meltdowns when

tired that frankly seem metabolically based, food helps and her normal behavior

returns almost immediately. She has had tons of croup, pneumonia and viruses

but developmentally is perfect , advanced and growth wise is fine. Due to the

fatigue thing ( you can only do toughlove for so long when you have one mito kid) I had her labs

done at our local lame lab. COQ10 came in abnormally low with the lab summary

of breakdown in the metabolic pathways, specifically mitochondrial disfunction.

Her croup has recently progressed to cough variant asthma,

and she too gets the bruising on her legs. We are getting ready to repeat her

labs at the Clev. Clinic , but I would love any input from parents on this kid

and what I have named. ( Brutal honesty is fine with me!!!)

I have been married to the love of my life for 5 years, he

is 54 and I am 37, we wanted to have more kids, but wont try anymore- sigh we

have our hands full!! He is a great dad- but works long hours at his business

during the day. Due to the age difference, we worry about our future, the girls

health etc. etc. I am sure you all understand that one!

I work from home, I publish an embroidery magazine and it is

really challenging these days with no sleep, 7 therapy appts a week and at

least one doctor appt.. but I am surviving. I try to make a difference where I

can and believe I am I started a parent support group for parents of delayed

kids- to share resources working toward diagnosis- and that is going well. I

turned it over to my girlfriend who helped start it when I recently took over

the AZ Chapter UMDF President role. Lots of work there too, but for a great

cause.

You can see pics of my kids on my blog www.specialneedsmom.com and if you

scroll down to footstep entry there is a mothers instinct story of our search

for a diagnosis. Oh and for a bit of fun, I like to read, write, and appreciate

good food , wine and quiet time at home.

Sorry this is so long!! Take care- Suzanne in AZ

Please

contact mito-owner with any problems or questions.

Please

contact mito-owner with any problems or questions.