Monday, May 31, 2010

NUK

video

I'm adding this video because the OT keeps telling me to use the NUK, which we do all the time and have had for the past 2 1/2 years. This video was taken March 2008..........

I'm exhausted with the same ideas and need new ideas to help her chew, swallow, and reduce the drooling. but when you have a child who could really care less about food and eating and seems to be stuck in the put everything in her mouth phase....well what else am I supposed to do???????

Thursday, May 20, 2010

honestly

Lately, I’ve been reading a lot of blogs by other women who have children with disabilities.  The more I read, the more I feel like I’m painting a fake coat of paint over my life in my blog.  These women are truthful, deep, eloquent in their words about their lives.  They say all the things that I want to say, all the things that I blog throughout the day in my head.  I’ve been realizing that I always cut the truth short and try to make it a sweet positive picture.  I never want to burden anyone with my normal, my reality, my disappointments. I never want to offend anyone, especially the people who I love the most who read this, but truly don’t get Sadie or they are afraid of her, or they are afraid to say anything…say something…After all, the majority of the people I know, simply have nothing to complain about, well besides the insignificant normal issues of parenthood or life. When someone asks about Sadie, I most always reply, she’s great, thanks for asking.  But when I read the posts by these total strangers, these foreign bloggers, these yahoo groupers, I feel connected and it feels good to know I’m not alone in my feelings. 

It hit me the other day after having a few conversations with my new friends.  My new friends who also have children with disabilities, that the dynamics of my old friendships have changed, and I’m the one who changed.  I’m the one who doesn’t have the patience to listen to the trivial.  I don’t know exactly where I’m going with my post/point here, but I just want to start being real here on this blog.  I don’t want to sugar coat it, I want other mothers who might be in the same position as me to feel a connection to me the way I do to them. I never meant to mislead anyone to think that life with Sadie is easy and wonderful all the time.  Don’t get me wrong, life is wonderful and I have a lot to be thankful for, but it isn’t the normal that most of my normal friends have.  (please don’t hit me with “who is normal”) And this reminds me how thankful I am for the fact that I appreciate everything that Sadie does in her life.  Every little utterance, every hug, every kiss, I’m even grateful when Sadie puts her straw cup on the table rather than throw it.  Silly to you maybe, but that is a huge accomplishment and testament to her cognitive growth…she reached that milestone, and I love it. 

Monday, May 17, 2010

at the botanical gardens

We celebrated Mother's Day with the family at Botanical Gardens. Sadie
absolutely loves to be around other people, smiling, laughing, simply
exploring. This photo was taken after she spent a few minutes waiting in
line to see the bald eagle nest at the Botanical Gardens. She patiently
stood there and when her turn came, she jumped up and down with her arms in
the air indicating that she wanted to look next. And she actually did look
for just a second. But most of all she enjoyed being on the step to the
telescope and Memaw standing behind her trying to help.

Sunday, May 16, 2010

Grateful Mama: Thoughts on mothering my daughter

http://sugarmagnolia70.blogspot.com/2010/05/thoughts-on-mothering-my-daughter.html


Sent from my Verizon Wireless BlackBerry

Friday, May 14, 2010

Thursday, May 13, 2010

Hibiscus Flowers on DAFOs

The Henry's Family....Sadie has the same hibiscus flowers on her dafos!!!
Sent from my Verizon Wireless BlackBerry

Wednesday, May 12, 2010

Ortho update


I'm making this short and sweet because I'm exhausted. We saw the orthopedic surgeon yesterday for Sadie's annual checkup. He said her feet look good, but she is still toeing-in. He recommended tibia torsion surgery, where the tibia is cut and then turned, and reattached so the foot is turned out or straight. She would then be in casts for 6 weeks....sounds like ZERO fun...for me or her...for right now...i say NO.

Saturday, May 8, 2010

Several postings ago

I would like to say for the record that I don't agree with the doctor that said Sadie was experiencing the terrible 2s....She didn't feel good and had the beginning symptoms of a sinus infection. She probably had a headache...anyway, she ended up being on back to back antibiotics 5 days after that appointment and a runny nose 1 day after that appointment. AND she is now on allegra for allergies.

At Duck


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Day at the Beach




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Tuesday, May 4, 2010

Killing time between doctor appointments at the park

Geneticist appointment in the a.m. And PCP in the p.m. We got lucky and spent a great 45 minutes enjoying the sun and beautiful weather.
There's a newer better Microarray test that shows the bands of genes on a chromosome up to 2,000,000. It's called the SNP (pronounced snip) Microarray. The last test Sadie had a year and a half ago was the CGH Microarray, which showed up to 1,000 bands.
This is so important because genes control more than just hair and eye color, they also control, block, and communicate (epigenetics) with tumor receptors, cancer, other medical issues that might come up. Knowing which genes are missing, in Sadie's case, will help us keep a close eye on any potential medical issues. We know that Sadie is missing the gene that suppresses bladder tumors. So we will monitor her bladder.
Etc etc etc....
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