Thursday, September 30, 2010

Kansas City Strollathon

This past week we took part in the 1st Kansas Strollathon for Rett Syndrome chaired by our friend Shannon. We had perfect weather and 11 families and their friends raised around 19 thousand dollars. With the match from the Pioneer fund that would be 38 thousand. We had a great turnout and some teams had 50 or more people walking with them. It was very touching.

I will let you know a final total in the near future. Thank you to everyone for your support!


Above is the pic of our darling Princess Abby arriving at the event. Just look at that smile. It was the day before her birthday and we told her everyone was there for her!
Shannons daughter Alyssa looking ultra chic!
Yipee for Abby. This is her approval or happy thing she does!
Happy Birthday singing to a few girls and Abby!!!
Group pic! Great job everyone! If you would like to see more pics you can visit the photographers page at
http://kcvideo.com/home/blog/45-photography-blog/165-kansas-strollathon

Saturday, September 18, 2010

Catching up!

I have not been a blogger slacker lately. Just an Abbys blog slacker. Been helping other people out with projects. Exciting RettGirl Awareness projects and more. I've loaded the latest pics for a little story time so you can catch up with our favorite princess! Above is Abby holding her purple card. It's like a little awareness in your pocket and we hand them out everywhere when people ask what Rett Syndrome is or what Abby is living with.
Look how cute she is! You can order your own awareness cards at GP2C. I don't know what we'd do without them.

Always my favorite pics. I love it when my kids play together. Also the only time I can get my son to take a pic is with his sister.


Look at the love in this picture!


One of my BFF's from high school came home after 23 years. She spent a week and we love her so so much!



Our friends Bridget and Kelly gave us a great idea to buy a stamp with Abby's name on it so she could write her name on her papers at school! I think I was a little more excited about it then she was. You can buy the $18.99 stamp at Staples. Some girls around the country had to order their's but they made ours while we waited. Took about 5 minutes.



Oh my gosh Mom! That's my name!



Seriously? I can write my name now?


Yeah! Is this the coolest idea ever or what?



Screw you guys! Where's my checkbook?
More soon
T

Tuesday, September 7, 2010

Sleep Study Update

This one took me a few days to get over before I could post.

As we feared Abby does suffer from Sleep Apnea and had 4 incidents where she stopped breathing in her sleep. I tried to explain it away as breath holding and she must have woken up and did it out of anxiety because it was dark and she didn't know where she was. But she was hooked up to dozens of wires so they could tell weather or not she was asleep..and she was.
She also suffers from what is called Hypopnea. Hyponea is a medical term for a disorder which involves episodes of overly shallow breathing or an abnormally low respiratory rate. This differs from apnea in that there remains some flow of air. Hypopnea events may happen while asleep or while awake.
The nurse also told me that girls with Rett Syndrome should never be put to sleep on their backs,should be elevated 30 degrees and on their side if possible.
Luckily our church is in process of making Abby a homemade sleep safe bed. I don't know all the details so I don't know if it will be electronic so we can raise the head or not. If not we will just buy her an Apnea wedge and already have some pillow rolls ordered so she can't roll over.
For now her PED is to keep an eye on her tonsils and we are to keep her on her allergy meds. If the tonsils get any bigger they will have to come out. If the breathing gets any worse at night she will have to go on cpap. I am praying it doesn't come to that. Makes my heart hurt.
So thanks for keeping up on my baby and keep her in your prayers. She,of course,is happy as a clam and this has probably been going on for years and we just didn't know.