Lewis was born 30th September 1997. He was born full term, I had no problems with the deliver and every thing seemed fine. He weighed 6lb 13oz.I breast fed him, or should I say tried. 9 days old he was in hospital because he wasn't produces dirty nappies, The Doctors checked him out, gave me some medicine. At 3 weeks old he was sleeping right through the night. Lewis didn't thrive at all, after six weeks of breast feeding he hadn't put on any weight, and the mid wife suggested I bottle fed him. He put more weight on in 1 week than he had in his six weeks of life. Great., but then he started to be sick. He made gradual progress, I knew something was wrong, everyone said boys are slower than girls don't worry. Lewis crawled made sounds, walked around the furniture just as normal, but he was very cautious, and wouldn't let go to walk. I noticed everything he did took him longer to achieve. He did walk at 18 months old, the day of the doctors appointment typical, The Doctors kept an eye on him, and we was sent to a pediatrician because one side of Lewis head at the back, was flat, Doctor thought it was because he slept on that side of his head and it would correct its self by the time he was years old. We had regular visits every months to his development.
Lewis started to suffer from a bad chest, and ended up in hospital with pneumonia
I always seemed to be at the Doctors, and started to feel like a paranoid mum.
At the hospital visits the Doctor suggested we had Portage, this is educational input on basic skills every week. Lewis was 'years old. He did well, when he got confident with the lady, but it took a while. He was sent to a nursery from 2.5 years, to encourage his social skills. He never made a sound their, he was very quiet and timid, but as soon as I would arrive and we left the nurse he wouldn't stop talking, only basic thinks one word.
I have had a lot of problems with speech therapist. I believe you know your own child best. The problem is that people think because a child doesn't have a good range of words, that they don't understand, This is not true. I would go to speech therapy and they would just start to get to know Lewis when they would leave and someone else would take over, and because he didn't know them he wouldn't speak to them, plus he got bored with put the dolly on the chair under the chair, etc. So they insisted that he had no understanding. His reports from nursery were frightening, according to them he couldn't do anything. Which was untrue? As a family we went through everything what was the problem, He wouldn't walk over grids, anything with holes, he had strange little habits. The Speech therapist Suggested I had Some test done, Blood test, So i went back to the hospital and asked, The Doctor said it wasn't worth it Lewis was Lewis, I insisted, the test took 6 weeks to check chromosomes everything, Our appointment was 8 weeks later, I thought everything must have been ok because I hadn't heard from them, And that's when we found out 49XXXXY.Lewis was 3.5 years old. We was told to come back in 2 weeks and this was the same as dealing with a bereavement, with a list of questions,
As everyone will no the history on this 49xxxxy its out of date, and Im very glad to say that our little boy is wonderful. He doesn't have a mosaic, its in very cell of his body, He suffer from a low immune system, and prone to pneumonia. He was on long term antibiotic which worked great, for 2 years, we have just stop, so we will see how he goes on.
He never stops talking, he can put little sentences together of about 6-7 words, he can make himself fully understood, He's starting to read, he swims with armbands, he interact with other children no problem, Lewis is so pleasant and has wicked sense of humor. His elbow are ok, their over extended, but so are mine. His fingers and toes are fine. I have never seen any tears from his eyes! He's above average weight and height, Still not good with eating, very fussy, loves milk.
Lewis goes to a special school and is integrated in to mainstream school two half days, His school is closing down, so we will have to make some decision on his education and which direction to go, feel free if any one wants to talklove Sue xxx
Here is a picture of Lewis on our holidays last year in Spain, with his sister in the background
Story Submitted by: Ssndunn@aol.com
