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Personal Stories

Howard

11/5/1999

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Taylor, Nebraska
Eric was diagonised w/mds when he just turned 2 years of age--exactly 2 weeks before his sister was born.  We  knew he had some learning disabilities along w/speech disabilities but we never dreamed that he actually had  down syndrome.  To say the least, we were floored--he doesn't look like he has mds or any disability.
When he was 6mo, he was diagonsed w/craniosentiosis and one doctor recommeded head surgery, so we got a  2nd opinion and went w/the helmet therepy.  So he wore most of the time the helmet all day and night until he  was 1yr.  As far as the speech, we thought it was all the chronic ear infections he had and that he would outgrow   them.  (He had ear tubes put in at 2 1/2 yr) so we were concerned but just figured he'd outgrow that problem.  The last time he had ear infection the dr asked if he had a heart murmur, which at that time we had believed that  it had gone away, so we went to the specialist and found out that it hadn't gone away at all, but that he had 2  holes in his heart (they called it aterial sepital defect).  So he had heart surgery at 3 yrs of age.  We knew he had 2 holes going in but it turned out that he had 3. That was scarey to turn him over to the drs. to fix the problem,  but he benefited from it within 2 days--he had so much extra energy--sometimes too much.  

When we found out he had mds, all we knew was that it was a light form of downs.  So I'm glad there's finally a  website for mds--I don't feel so alone now.  Eric is now in kindergarden this year, which is going along fairly   well--he still has some problems on settleing down but it's getting better each day.  He really loves it and I think  it'll be good for him even if he has to repeat it, he learns more and more each day and his speech is coming along  slowly but surely.  The kids seem to help him and take care of him w/o too much of a problem and he learns  speech and alot of other things from just the kids.  Eric has 1 older brother (8yrs) and a little sister (3yrs).

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