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Forum: Children with Special Needs

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  #1  
December 31st, 2006, 10:06 PM
m.and.a
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I can't believe I haven't found this board before. My name is Manda, and I am from the July 06 playroom. My girls were born 10 weeks early after surviving a rare twin complication called Twin to Twin Transfusion Syndrome. We were relieved when they were born and seemingly healthy. Aleah has the worst luck in the world because she developed NEC (her intestines died) and on top of it, it went undiagnosed... I call her my little kitty because she's got so many lives. She's had a total of 4 surgeries. We finally brought her home nearly 6 months after her birth. Right now she is DXd with BPD(chronic lungs), chronic liver disease, first stage liver failure, sclerosis, and some other things. She's trached, but we hopefully plan to take it out this summer. If she needs a liver transplant, it'll stay in place until after the transplant, but we're still in the maybe stages of the transplant. We're also iffy on her hearing impairment right now, but is the least of our worries.

That's the quick and the dirty of it. It's been mentioned to me that Aleah displays autistic tendencies, but she's really too young to tell. She hates to be held and cries when you kiss her, but she's been through so much and spent most of her young life in a medically induced coma. So, we're going to give her some time first.
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  #2  
January 1st, 2007, 04:43 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Hi Manda! I am glad you stopped in and found us here! I noticed you live in VA?! I am in Yorktown, you are Fredericksburg? That is only a couple hours away!

Do you Sah?

I am Lindsay and my Sydney is almost 14 months and has microcephaly. That is the big dx, but she has many other situations, many of which we are still seeing new doctors about.

Again, glad to have you here! Everyone here is so supportive and helpful!
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  #3  
January 1st, 2007, 07:25 PM
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Join Date: May 2004
Posts: 393
Hi Manda. Welcome to the board. My name is Jenn and I am mommy to my DD Kendall who is 11 and my two sons, Cade who is 4 and Colton is 23 months.

Cade is my guy with special needs. He has not been diagnosed with any one syndrome but he has PVL and some other damage to his brain and those things have caused his issues.

I wanted to tell you that my Cade was just like Aleah as a baby as far as not wanting to be held, cuddled, kissed and all of that. If he was hurt, he never wanted to be comforted. We have had tons of OT and have worked hard to try to get through alot of the sensory defensiveness.

Anyway, glad to have you here!!

Jenn
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  #4  
January 1st, 2007, 08:21 PM
m.and.a
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Thanks ladies. Glad to be here.

Yup, I'm in Fredericksburg. I SAH, but I'm also a part time graduate student in my *ahem* spare time. I was a library manager at Marymount U in Arlington until I had to go on bedrest at 16 weeks. Then the girls came early, and now Aleah is under lock and key and has no fewer than 2 appointments per week.

Sensory defensiveness... I like that term. Her PT says that she might be "hypersensitive", that it's common in preemies, and especially developmentally delayed preemies. Aleah has started smiling at, well almost at us in the last few days. She rarely looks anyone in the eyes, she watches people through her periphreal vision. Her rehab specialist calls this "avoidance".

I LOVE the names Cade and Colton. Was Cade a preemie? I know so little about PVL's. I had a friend with a grand daughter that had a PVL, and that was the first time I'd ever heard mention of it.
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  #5  
January 2nd, 2007, 06:43 AM
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Join Date: May 2004
Posts: 393
Quote:
Thanks ladies. Glad to be here.

Yup, I'm in Fredericksburg. I SAH, but I'm also a part time graduate student in my *ahem* spare time. I was a library manager at Marymount U in Arlington until I had to go on bedrest at 16 weeks. Then the girls came early, and now Aleah is under lock and key and has no fewer than 2 appointments per week.

Sensory defensiveness... I like that term. Her PT says that she might be "hypersensitive", that it's common in preemies, and especially developmentally delayed preemies. Aleah has started smiling at, well almost at us in the last few days. She rarely looks anyone in the eyes, she watches people through her periphreal vision. Her rehab specialist calls this "avoidance".

I LOVE the names Cade and Colton. Was Cade a preemie? I know so little about PVL's. I had a friend with a grand daughter that had a PVL, and that was the first time I'd ever heard mention of it.[/b]

Manda,
Oh yes, hypersensitive is still a term we use to describe Cade. It doesn't only affect him with touch but basically in all areas. I am thankful that our first OT was able to see his sensory issues and she has been absolutely wonderful in working with him and also with teaching us about him. There were some days when I felt like she knew more about him than I did. He was seeing her at her office through EI weekly from the time he was about 8 months old until he aged out of EI at 3 yrs old. Now that we have to pay for that out of pocket we can only afford to see her once a month. I still feel like our monthly visits are very beneficial though because as always she is a wealth of experience and information. I really feel like most of Cade's progress has come because of her, her knowledge, her experience and of course her work with him.

Thank you for the comment about my boys names! I have the hardest time coming up with boy names. As far as your question, no Cade was not a preemie. My pg was 40 wks with him and was an easy one. Most people thought Cade was a preemie - he was small for 40 wks by most people's standards. He weighed 5lb 13 oz. We really have no idea why he has PVL or why he has the migrational defect.
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  #6  
January 3rd, 2007, 06:40 AM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Aleah has started smiling at, well almost at us in the last few days. She rarely looks anyone in the eyes, she watches people through her periphreal vision.[/b]
Sydney does this very same thing too! She relies on the periphreal vision quite a bit!
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