Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Amy Maire, Thanks for checking in. I often wonder how you are doing. J > > > 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! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.