Tuesday, October 28, 2008

DAD

I spent Saturday and Sunday with friends at a Creative Memories weekend retreat. When I got home Sunday evening, Sadie said, "DAD" for the very first time. This wasn't a babbling dada, it was clear as can be DAD. How amazing!

A few days ago, Sadie and Shelbi were so cute holding hands and pulling each other in circles around the room. I know Shelbi was sent here to love and be a companion to Sadie. They are so sweet and Shelbi is becoming our little helper with Sadie, even at 15months. Earlier today Shelbi walked in the other room to get Sadie's 'froggy' for her nap because I asked her to get it for mommy.

Wednesday, October 22, 2008

Friday, October 17, 2008

Language vs Communication

Language is important, we all know that, and we all know you can't get anything unless you take it or ask for it. For children who don't have language, or have receptive language, but don't have expressive language, this can be difficult and nearly impossible to get your point across to the person who controls your world. For children, their world is controlled by their parents, until the day comes that you can communicate.

For most of Sadie's life, her communication has been painfully limited and based on my prediction of the things she wants or needs. She is accomplished at saying mama and occasionally says bye bye. She will even say ahhh gohhh to say all gone, but as far as requesting things she has been severely limited.

We have been working on PECS (picture exchange communication system) since the beginning of summer. We, I, have been signing to her since she was a baby. Shelbi picked up signing immediately. Most recently, we have started to see some actual requesting. On Tuesday, Daisy(dog) was sitting in the recliner and Sadie wanted to sit in the chair. I told her that she should tell Daisy to "Get Off." I nearly fell out of my seat when she said, " ggggg ohhhhhh" to Daisy. Then today, I signed to Shelbi to ask if she wanted "more waffles." To sign more, you take the tips of the fingers on both hands and you touch them together. I look over at Sadie and ask her the same thing. OMG, she signed more...for the first time. I'm serious...for the first time ever. About five minutes later, I asked her if she wanted milk. I told her to show mommy with your hand that you want milk. To sign milk, you squeeze your fist together like you are milking a cow. She signed milk. As if one sign didn't make my day, she signed another sign. A little later on, she stripped down her diaper and clothes, which I now know means she has a wet diaper and doesn't want it on anymore, or that she needs to go pee. Her diaper was dry. I walked her in the bathroom and after a few attempts...she peed in the potty. They say things come in threes! I can't wait to see what she does the rest of today. She communicated her needs!!!

Friday, October 10, 2008

Chromosome Microarray

Ok, one more thing for the day.

We finally got the results for Sadie's Chromosome Microarray test, which show in more detail the genes that are affected with her karyotype.

Luckily, not much changed. She is still missing the 8p23.3 region of her 8th chromosome. However, the difference came with the additional xp material. The original Chromosome Analysis test showed additional xp22.13, but we now know that it is a shorter band of material with the addition of xp22.2 material. The genetic counselor said that additional material usually doesn't make a lot of difference, it is the missing material that has the most affect.

Pretty neutral information, not helpful, but not hurtful either.

GI appointment

We saw the GI doctor on Monday. He is always nice. They didn't do much more than take her weight, height, blood pressure, and temperature (armpit). We are now on 6 month appointments as the prevacid is controling the majority of her spitting up. Only on rare occasion, does she have a burb induced spit up. Yeahhhhh!!!

AFOs

Forgive me...I'm still trying to catch up on the blog.

Three weeks ago, Sadie was "fitted" for her new AFOs (braces for feet). When I say "fitted," I mean casted toe to knee and immediately having the cast cut off. The purpose is to have the AFO fitted specifically for her feet. I guess this makes sense...to me, but to a 3 1/2 year old...NO WAY. It wasn't nearly the worst thing to have done, but it makes the list.

Either way it had to be done. We picked up her AFOs from the therapist on Tuesday. Imagine trying to put a wet pair of jeans on an uncooperative child. We finally got them on, kicking and all.

She still only wears them at night to prevent recurrence of the tendon tightening.

By the way, they cost approximately $1200 and insurance only covers 80%. I guess that's better than nothing.

Tuesday, October 7, 2008

Busy Busy Bee

I can't believe October is really here and today is Sadie's 3 1/2 year birthday. Let's see, what has happened since April? Sadie continues to be a loving child with the occasional tantrum. As expected for any child with or without disabilities. Sometimes I think Shelbi is a bigger handful. They continue to grow and bond with each other. Loving and pushing each other all at the same time. Sadie is amazing us with her desire to learn and grow. She is a better eater and finally in the 25% for weight! Yeahhhhh!!!

As for school, this year has been more demanding on us and the teachers. In theory, her school is welcoming and excited to teach children with disabilities, but the truth is they are ill-equipped with the necessary special education experience. We have even found ourselves in the company of a person who discriminates and refused to be in her class. We are compromising, as we know, we do live in a free country and each person has a right to their own beliefs. The public school system is sending an itenerant special education teacher and speech itenerant to work with Sadie two times a week. This is the community preschool inclusion model.

I was driving Sadie to school last week and saw a bumper sticker...Well behaved women rarely make history. It must have been calling my name because I was torn by the feeling to fight or be grateful that at least one school would take her. I'm trying to find a balance so that I don't cram Sadie's issues down people throats. Bill and I want people to be interested in Sadie. BUT everyone has their own story and not the time to worry about another family. We do understand this; although, it is hard to take sometimes.