Maxi-man Update!

[Guest guest]

Hi Everyone!

It has been awhile, like six months or so, but just thought I'd check

in. Maxi is in kindergarten now, he will be six in January. He still

doesn't cross over his body and is still considered hypotonic so he

has " pull outs " three times a week for occupational and physical

therapy. He has slowed down alot and isn't nearly as hyper or hard to

keep up with, his blood sugar seems to have evened out, unless he is

sick. He is 31 pounds and 40 inches tall. No growth hormone, and no

real diagnosis, except short stature. He was gaining weight nicely for

a year or so, but is now on the losing end again. He looks alot

skinnier than he did at the convention two years ago. He is in a size

4 pants with suspenders, sometimes a five, rolled up. Shirts, he

usually wears threes or fours. Becauses I buy most of his wardrobe at

thrift stores, I can sometimes buy him older looking clothes that have

shrunk a little. He has become conscious of his height at school and

has been picked on for it, but he gave as well as he got, and luckily

the teacher used it as an opportunity to teach about communities and

diversity and did not make some big behavioral or dicipline issue out

of it.

His new style is a mullet (I gagged when he told the barber what he

wanted), he says if Washington can have a ponytail, so can he.

Thank you " Liberty's Kids " . He has now had his fifth set of ear tubes

and his fovea are still mishshapen and miscolored and his retina's do

not sit on his eyes right, so he has eye appointments every three

months, or is supposed to anyway, when we can get them scheduled,

there is always a waiting list. His vision is still 20/20, but he does

have peripheral blind spots and problems with depth perception.

He is still very light sensitive. Maxi is as big in personality as he

ever was, is very talkative and not nearly so rough and tumble, (tell

he doesn't bite) he really has calmed down. He still gets up to

eat at night, but most nights he can get a snack on his own. He eats

through out the day at school and it is written in his IEP that they

have to place the snack in front of him 6 times through out the day.

He is in full day kindergarten and loves it. He comes home exausted

and still has a tremor. We try to eat things at night that he can use

his hands with, or a straw in the evening, but he is really working on

holding utensils,it is just so difficult at the end of the day for him

to grasp them. The doctors give us no reason for this they just say

" mid-line anomalies " , like the eyes and ears. So we are still here,

floating without a diagnosis, and while frustrating, it is not the end

of the world.

My husband, after being un-employed for a year, mortgaged our house

and bought a living assistance service franchise called " Visiting

Angels " . He provides CNA and companions to the elderly and disabled.

He is still not making it financially yet, so we still have no salary

and have been living off home equity. Thank God for the housing

shortage in our area, it makes this do-able, for another six months

maybe. We are still paying the 1000.00 a month cobra payments and that

will end in march. So far, I haven't found an insurance company

willing to touch us. But, all in all, we are still here, doing great,

and Max is, if little, at least thriving in his own way. My duaghter

started high school this year, and is thriving too. She just made

district choir and is in an IB program. My oldest son, Woody, A.K.A.

Will, is in his third year Mason and turned 21 this summer! I

feel very old. I am a little thinner, and still cancer free! I am also

catching up on all of the sleep that I have missed in the last five

years! Anyway, that's about it, I try for a picture, as Maxi's folder

was deleted, I hope and pray you all are well. I was sorry to miss the

convention this year, Maybe next.

Hugs,

AmyMarie

Mom to Maxi 31 pounds 40 inches tall and 6 in January, Breanna 14 soon

to be fifteen, and Woody 21 years old and 6 feet tall!