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Old 02-02-2006, 10:26 PM
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Join Date: Jan 2006
Location: Baton Rouge, LA
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Default Anyone else have a child with a disability?

Technically I have two, but one is more obvious than the other.

My Katie is 8 and has spina bifida. She uses a wheelchair and is in the second grade. She had three surgeries this past summer that made the total to be 18! But she is a pretty normal girl. She is in her fifth year of dance class. She takes water therapy, and therefore loves to swim, which until these past surgeries she could do like a fish. She loves pink, Barbie, and cats too. She is very funny, mostly unintentional and has never met a stranger. I like to quote what I call "Katie-isms". For instance, yesterday at therapy she was admiring a baby and called her a Cutie Patootie. As we walked out she said, "I don't know what a patootie is, but she's a cute one!"

This past summer she got rods placed in her spine to correct her scoliosis (crooked spine). Usually people don't have this done until puberty,because once it is done, you cannot grow (except for the couple of inches you get from straightening the spine). But she had to have it done, and now will always be 4 feet tall.

She has a shunt to drain fluid out of her brain due to hydrocephalus, and the rods caused her shunt to malfunction (probably got kinked) so two weeks after the rod surgery, she had to have her shunt replaced (brain surgery). Then while she was in the hospital which was different from the first (first was Children's Hospital in New Orleans and second was in Baton Rouge), they went ahead and took out the staples in her back, and discovered a deep infection, almost to the rods. After a week there, she was transferred by ambulance back to New Orleans, where they did surgery to clean out the infection. She was sent home on IV antibiotics and couldn't start school for over a month.

While she was at home, supervised by her New Orleans surgeon, a not so nice "lady" called Katrina screwed things up by causing her surgeon first to be unavailable by phone, and then to have to evacuate to Houston for about six weeks. So her regular pediatrician had to take over in overseeing her treatment. Luckily her surgeon is back in New Orleans and did not suffer any damage to his house.

She usually sees him in Baton Rouge but we did go down Thanksgiving week to see him (the whole family) and was able to do things in the French Quarter like have beignets (sort of fried pastries) without having to stand in line. The kids even got teddy bears from NY State police we met at Applebees.

Oh and my other child- Nicholas is 11 and has ADHD, Obsessive Disorder, Tourette's Syndrome and an Anxiety disorder (your little sister has had 18 surgeries in 8 years- gee what a shock to be anxious). He started middle school this year in a magnet program, and having 8 classes (4 each day) has been difficult for all of us. If anyone has ever seen the show "Monk", then except for the neatness, that is my son. He has the other problem of OCD- not wanting to throw anything away, not even the packaging for toys. But he is smart- he wouldn't be in a magnet program unless he was, so I keep hoping that one day, he will find his niche (like being an "absent minded professor") and feel comfortable in his life. I have to admit that when people at church say "You are the one who has a child with special needs," I answer "Yes, and I also have a child in a wheelchair!" Luckily I have found a Bible study run by two female neurologists for moms of kids with special needs, so I have some people in my life who can understand.

So I would love to share info with other moms of special needs kids. Also I used to be a special ed preschool teacher, so I can be a good resource if you need it.

Nancy in Baton Rouge
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