Clayton update

[Guest guest]

Hi all:

It has been a while since I gave an update on life in my household so here

goes. First Jake is doing real well and is becoming an amazing ice skater -

watch out for him in the 2012 or 2016 Olympics.

Cole is also doing great but becoming quite a devil. He is now almost fully

potty trained - completely during the day but not a night and sometimes has

problems at nap BUT he wears big boy underwear all day.

Clayton is stable. Not great not bad. He is still eating - but no more than

a year ago and still dependent on night time tube feeds with elecare. He is

eating more foods but his excema is acting up real bad. I think it is time

for a scope and a return visit to Dr. Sampson. We are do to see Dr. on

March 30th. He is still less than 2% in height and his weight is about 15%.

We will be off to the endocrinologist for a visit after he turns 3. They

believe his height issues are caused by the mitochondrial disorder but

complicated by his EG. Also everynight he tells me his belly hurts. I do not

know. Health wise he has been stable but we worry. He did have a specialized

brain MRI last Thursday - a MRI with Spectroscopy - took 2 hours and still no

results - although the neuro has been the covering neuro at CHOP all week and

extremely busy. I am praying that no news is good news - BUT they did have

some concerns. The sedation really screwed him up for several days and he may

have had a seizure - although I think it was just that his blood sugar

dropped so low from not having and food or tube feedings for almost 12 hours

- he is not supposed to go more than 4-6 hours without something. Also I

have been crazy as Clayton and Cole turn 3 March 30th and we are in the

process of transitioning Clayton from Early intervention into the pre-school

handicapped program. Things seem to be going well - BUT WHO knows. His IEP is

scheduled for March 17th. On a good Note Make A wish is sending us to Disney

for Clayton's wish from April 26th - May 1st. We will be staying at give kids

the world. We are all excited.

As for me I am doing great. I have lost 30 pounds and look great. I am down

to 135 and want to get down to 120 and plan to wear a bikini this summer. I

have started to date and I feel better than I have in years - with the

exception that my tummy seems to be screwed up so maybe one day soon I will

be able to get myself to a GI - yeah right.

Love,

Sharon

[Guest guest]

Sharon,

Congrats on the weight loss!

Dawn