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  #1  
April 7th, 2009, 01:05 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Hi mamas,


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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  #2  
April 7th, 2009, 02:15 PM
Ditzzy's Avatar Stupid Lamb;)
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Great post! Congrats on the new baby! Carter is so adorable! Wow, that's a lot of therapies!! You have had a huge journey as well. You are one awesome momma!!
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Last edited by Ditzzy; April 7th, 2009 at 05:13 PM.
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  #3  
April 7th, 2009, 02:47 PM
kittycat's Avatar Platinum Supermommy
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Location: Chicago, IL (W Burbs)
Posts: 12,488
You really sound like you're on top of things.

Does your insurance cover the aquatic therapy? I was reading today that it's a good option for kids with Ataxia/severly low-tone.

Has your therapy group or doctor mentioned communication devices, such as special picture boards? With the devices, they can say yes/no, or point to things they want to do with special program cards that you can customize for them. This is something they do at my son's school (and he used for a while). My neighbor up the street is in the business, and gave me some info not long ago that I could pass on, if you're interested.
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  #4  
April 7th, 2009, 02:53 PM
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Hi Sara, nice to "meet" you! You've got your hands full mama - I know how tiring that kind of schedule can be. But what a gorgeous little dude you've got!!
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  #5  
April 8th, 2009, 09:01 AM
Jasons_Mommy's Avatar I love my little man!!
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you sure do have your hands full. Congrats on your bean!! Im looking forward to getting to know you!!
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  #6  
April 9th, 2009, 07:33 AM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
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Quote:
Originally Posted by kittycat View Post
You really sound like you're on top of things.

Does your insurance cover the aquatic therapy? I was reading today that it's a good option for kids with Ataxia/severly low-tone.

Has your therapy group or doctor mentioned communication devices, such as special picture boards? With the devices, they can say yes/no, or point to things they want to do with special program cards that you can customize for them. This is something they do at my son's school (and he used for a while). My neighbor up the street is in the business, and gave me some info not long ago that I could pass on, if you're interested.
Actually our Regional Center was paying for the aquatic therapy, but they are picking up his "land" therapy for us as our insurance only covers 12 visits a year and we accomplish that in a month. The Aquatics center here has a class for special needs kids and it's a $75/year membership fee, plus you pay for the classes the months you go, and here it's about %70 a month as well.

There are also a lot of kid with too much muscle tone in our class. I really like the class because Carter loves the water and doesn't seem to know he's working.

I think the communication devices you are talking about is the picture exchange program? I have heard about that but I would like any additional info you have. I am sure Carter is not ready for it yet as he does not understand Yes and No or simple words at this time. However I love being proactive and learning about things before we need them.
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  #7  
April 9th, 2009, 08:38 AM
iamkc's Avatar Platinum Supermommy
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Location: Montana
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Welcome back! Carter is beautiful!!! I'm glad that you have wonderful docs to keep on top of his diagnosis, and it sounds like you're doing an amazing job yourself!

We're sort of in the same therapies with some of the same issues as you and Carter. Milo has something that about 4-500 people in the world have, and we're doing OT, PT, and are going to start aquatherapy as soon as everything settles down here. I'm glad to hear that Carter likes it so much! I'm hoping that Milo will take to it as well!

Carter is in the best hands with you-congratulations!
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