Here's another easy way to help raise money for Rett Syndrome Research. Check out this contest from the Extraordinary Measures film. It raises awareness for rare diseases. The cause with the most votes will win $10,000 for research. You can vote up to one time every day. Rett Syndrome Reversal is the photo of a couple holding a baby (on the 2nd page).

http://extraordinarymeasuresthemovie.com/#/quilt

Thanks Nonnie and Papa Dave for the Idog! Abby can't get enough of it. She likes touching it's face, and hearing it "sniff" her. It's great because it plays her favorite music.

Abby was so excited to be back to school yesterday. She was all smiles as we were getting her ready for the bus. She had a good day. Of course, she slept on the way home. She gets sleepy enough for a 10 minute nap on the bus, but not enough for nap after lunch. I think we need to have a talk about the difference between a blink and a nap.

I spoke with her doctor about her reflux issues, and he scheduled a swallow study for next week. That will show if there is any problems with chewing and swallowing. It's a pretty simple study. She will eat different textured foods that are coated in barium. They watch what is going on inside her body on a monitor. An SLP will be there with us, and will show me what's going on as she watches the video. Hopefully, it will just show that everything is working the way it is supposed to and we can look into other causes for her spitting up issues.

Abby was pretty tired today. She had a rough night last night. She got sick several times in her bed while she was asleep. I'm still not sure what the deal is with that, but it is quite an ordeal getting her a bath and back to sleep three times. She doesn't do it at all during the day. I thought it was reflux, which is worse when she lays down, but one time she was asleep sitting up with us. I will have to talk to her doctor tomorrow. We haven't seen a GI doctor yet, but I think it's just about time. It is such a minor issue compared to the other GI issues that are common in Rett. I am so thankful that this is our biggest concern with her eating. Many girls have difficulty even chewing and swallowing. I'm not sure what a GI doctor can do with kids her age, but it would be nice to explain what Abby is doing and see what he/she thinks. Maybe it is not that bad, but her pain tolerance is pretty high and she can't tell me how she feels, so it's better to be safe than sorry.

Go Cats!

Whether its a commercial break or not, it's time for a story when Abby pushes her book button.


Logan and Aunt Teresa

These games are just too long!

Happy New Year!

I hope everyone had a great Christmas! Abby has really enjoyed her break from school and therapy. She loved visiting with her Nonnie and Papa Dave, who came in from Texas. We can't wait until they move back!!! She has been a bit moody the past couple of days though, so I think she is ready to get back into her routine. She's getting a little bored with us at home. She does seem to like her new toys. She especially likes to touch the Idog and see the lights blink. We got her some drums, but she hasn't paid much attention to them yet. It sometimes takes her a while before she will try a new toy, so we'll have to wait to see if they ever interest her. Of course, she loves her Little Einstein movies. We are trying to limit how much time she watches them during the day, fearing that she will have withdrawal when school starts and our schedule doesn't allow so much down time. She might also have a difficult time not being able to sleep in. Yesterday she slept until 9:30! I could get used to that.

We are going to the Rett Clinic in Birmingham on Friday to see Dr. Percy. I'm looking forward to talking to him about Abby's reflux. She has vomited a few time during the middle of the night over the break, even though she is taking Prevacid to control acid reflux. We have also had to stop giving her so many high fat foods to prevent her from spitting up, especially in the evening. I weighed her this morning and I think she has lost at least a pound. Dr. Percy was a little concerned about her BMI in July, so I hope it hasn't dropped more this time.

Our New Year's Resolution: Abby will eat more. I will eat less.

Santa

Abby's glasses finally came in. Yay!!!They all look a little sleepy, including Santa.