Re: CHAT: Maxi-man Update!

[Guest guest]

Amy Marie - I am so glad that things are going well, and loved

reading your update!

>

> 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!