Introducing ourselves again
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April 7th, 2009, 01:05 PM
Join Date: Apr 2007
Location: So. California
It's been awhile since I have been posting in this section of JM, I am so thankful to Hope and everyone that is spending time here, so that we can help each other out and just vent and try to relate.
I'm Sara, SAHM to 16 month old Carter who has a rare syndrome called Mowat Wilson Syndrome(MWS), by rare I mean there are less than 200 people in the WORLD that are diagnosed with it. While it was the worst day of our lives (at the time) to get the test results that he did indeed have MWS, looking back we are really lucky that we had such great doctors from the beginning and they were able to diagnose him. At least we know exactly what we are dealing with and we started therapy right away.
Some of the things MWS cause in Carter.
-microcephaly (small head/brain)
-mental retardation (of course we don't know where he'll fall mild to severe, hoping for mild of course!)
-Hirschsprung's disease, this is an intestinal problem that he had surgery for
-Hypospadias, he also had surgery for that last October.
-low muscle tone, he will always battle this, we are in PT twice a week.
-75-90% of the kids have seizures of some kind
-majority of kids have little to no verbal language, even though they can hear, so we are working on signing with him
-global developmental delays
We do LOTS of therapy every week, he has PT 2X a week, Occupational Therapy once a week, with homework, since I just can't get him there 2X a week. Feeding therapy 1X a week, as he's still eating pureed foods only, and aquatic therapy which also addresses his muscle tone, at the moment we are going once a week, but we can go twice. He also sees an infant development teacher once a week, but thankfully she comes to the house.
So that is a little about us and Carter's syndrome. Really Carter is doing quite well, he is crawling and getting into everything, he pull sup onto his knees, but we are working on getting him onto his feet and cruising, we work on it, but he's really not ready yet. He doesn't say any words or communicate real well, but mommy always knows what he needs and he is a little joy, I just love him!
We're expecting baby #2 in November, so that should be interesting!
Please ask any questions, I may have left some things out, I just felt like this was getting SO long, sorry! I am looking forward to hearing more about each of you and your little ones.
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