Maxi-Man is 5 yrs. Today! Just checking in...

January 30, 2004

Hi everyone,

Maxi is 5 today! He recently had a check-up and some tests...

He is just shy of 38 inches, weighs 31 pounds and is eating again.

He bone age is about normal, he seems to have caught up, they say he

is in adrenarche. We are watching his diet, he still has the keytone

thing going on, but he is on the weight for height chart. Still not

on the weight or height chart for regular kids, but right on mean

for the RSS chart(the one from magic)for untreated RSS. He is

tracking to 4 ft. 4 to 4 ft. 8, and we are still trying to get

growth hormone approved. No one wants to approve it without

diagnosis, you know, the same old stuff. But at least the docs are

finally open to it. They want to hold off on delaying puberty too,

until it becomes " more evident " . I guess blood tests don't mean much

after all, I mean this is NIH and town we are talking about,

but enough of that. We simply refuse to worry at this point and are

trying to get on with life. It seems my little guy is too big for

RSS and too small for anything else. Trying to find big boy clothes

in a 3T is trying, but we manage, mostly in thrift stores. My

husband is still unemployed and home-equity is sustaining us, though

our cobra payment is more than our mortgage, ouch. But we have each

other and Maxi is happy. He has had a lot of Daddy time and that has

made him more independent. His IEP was done for the next year, and

he will move into all day kindegarten in the fall and still recieve

OT and PT. His language is very good, and he appears to have fairly

good hearing. I hope you are all doing well, and I just don't get

online much these days. My 14 year old is planning a peace rally on

the Ellipse in D.C. for teenagers to take place in April, and my

twenty year old is on tour, with the musical Ragtime. He just grew

again and is topping out at 6 foot! I stay busy with the three and

just don't get on line so much. Just wanted to check in!

Hugs for All,

AmyMarie

Mom to Will 20 yrs, Breanna 14 yrs, and Maxi 5 yrs! today with what

I term WKW or " Who Knows What? "

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