Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Sunday, November 29, 2009

Here's a great way to support research for Rett Syndrome. Girl Power 2 Cure now has a tool bar that you can add to your computer. Then, each time you use it to search the internet, a penny is donated to Girl Power. Each time you make an online purchase, a percentage of the total is donated. It's quick and easy. Check it out!

Girl Power 2 Cure Toolbar

Thursday, November 26, 2009

Happy Thanksgiving! There is so much to be thankful for this year in our family. We are thankful for our two little kiddos. Abby and Logan are both doing great. Logan is now 10 months old and is such a blessing. Abby has had a great year. She has started so many new things and is doing better than I could have imagined in school. We are growing increasingly concerned about complications with Rett such as scoliosis and seizures as Abby gets older, but she hasn't had signs of either. We are so thankful for her health and pray that she is able to continue doing so well. We also pray for all the other kids with Rett who are struggling with more complicated health issues. We are also so thankful for all our friends and family. Abby is truly blessed to have such great grandparents, aunts, uncles, cousins, and friends. We spend the day today with many of these people. We eat with my family today, and visit Abby Papaw and Memaw on Saturday. Abby was a little fussy with the crowd, but she coped pretty well.

I gave her choices of what she wanted to do while we were at the party. Of course, she chose to watch a DVD of Little Einsteins every time. I am posting some photos of her communication cards I made for today. She uses her eye gaze or her hand to make a choice.

These are some of Abby's favorite activities right now. Today, she only wanted the DVD, but she usually likes all of them.

This card can be used to help Abby communicate why she is upset. It has a sippy cup, snack, potty, and her blanket. The only problem is that when she gets too upset, she doesn't want to look at the card, but we are working on it.

Tuesday, November 24, 2009

Last night, we went to my sister's house for dinner to celebrate Tyler's birthday. Tyler is Abby's cousin, and I babysit him occasionally, so he and Abby are buddies. My sister, Cheryl, had some toys set up for Abby and Logan to play with when we got there, so they were definitely in their element. Abby especially enjoyed the chocolate cake and cheesy bread. She was a little fussy at the end of the party, and needed a little TLC from her Nanna. All the partying wore them out. They were both asleep before I pulled out of the driveway.

The Birthday Boy

Logan and cousins, Ben and Emily

Abby and her Nanna.

Abby and Emily

Monday, November 23, 2009

Okay, it's catch-up time. On my last blog, I mentioned Abby was going on her first field trip. Her class went to the North American Live Stock show. My dad and I went along with her. I was hoping she would react to the animals, but she didn't seem too interested. She does not like going to the zoo, but I thought maybe it was because the animals are too far away for her to really get excited about. It turns out, even when she is REALLY close to them, she is still not interested. She was actually pretty fussy most of the trip, until we put her headphones with her music on. The expo center was a little loud, which was bothering her. She was much happier sitting in her stroller and listening to her music. She's just not in to animals right now. However, if I could some how affix buttons onto the animal and string twinkling lights around it, that might be another story. But then PETA would get involved...I better just let it go.
Abby has developed an interest in cartoons, a particular cartoon, actually. We were in Blockbuster the other day (yes, there are still a few people who actually go to the video store), and Abby kept hitting a Little Einsteins DVD. I noticed in the past that she enjoys the music from the cartoon if it is on, but she never really watched much of it. She does not like to sit for very long, so she has never watched TV much at all. Anyway, she was clearly communicating that she wanted the movie. When I showed her several different movies, she kept hitting and staring at the Little Einsteins. Of course, we rented it. She has been watching it every day since. She gets excited as soon as the music starts at the beginning of the show. We play it on her portable DVD player in her room, so she can wander around her room while watching her show. It is so nice to find something that I know she enjoys. So often, I have to just guess what I think she might like.

Wednesday, November 18, 2009

Abby's teacher said she had a terrific time in the pool today. This was the first time she was at school when her class was scheduled to use the pool. She really likes the water, when it is not therapy (and she can tell the difference very quickly). Also at school, her class has been working with farm animals. I think her favorite activity so far was a book about animals jumping in the mud. The kids used chocolate pudding as mud, and painted pictures of farm animals to go along with the story. I know her teachers took photos, so I'll post them later. She was so excited when I saw the pudding she spread all over the animal pictures. Tomorrow, they are going on a field trip to the North American Live Stock Show. Abby's Grandpa and I are going with them, so we'll all get to check out the animals. I'm anxious to see how she will react to the animals up close.

Monday, November 16, 2009

We had a uneventful weekend, which is nice. Abby was pretty moody. I think her reflux is making her upset. Reflux is very common with Rett Syndrome. I started giving her Prevacid twice a day yesterday, instead of just once, so hopefully that will help. I hope the Prevacid will allow her to eat the same foods without having problems. She is on a high fat high calorie diet. Typically, girls with Rett need more calories and fat to maintain their weight than typical kids. She is a great eater, so it hasn't been too much of a problem getting her to eat enough. With the reflux that has developed, though, some of the fattier foods, like boost, have been causing her to spit up. We are going to Birmingham next month as a part the Natural History Study. We will also get to talk to a nutritionist as part of the study who is familiar with kids with Rett, so I'm sure she will have some suggestions.

Abby's PT suggested that she wear these AFO's an hour a day to help her shift her center of gravity. She tends to lean back most of the time. These boots are raised a little on the heel and have support on the calf, preventing her from leaning back. She does not like them at all. She wore them for 30 minutes tonight, but it was a struggle. She does not want to walk with them on, which is sort of the point. She just stands still. It will definitely take some getting used to. Like with most things, she's a good sport. I'm sure they feel pretty awkward.

Monday, November 9, 2009

Abby was all giggles this afternoon! We went to the doctor this morning, so she was glad to be home playing with her toys. One day I will learn how to hold the camera when shooting a video. Oops!

Sunday, November 8, 2009

Today was extraordinarily beautiful outside, so we took advantage. We raked leaves after church and went on a bike ride. This was the first time we took Abby on a ride in a while. She usually doesn't like it. We thought we would try again, and I'm glad we did. Once we got going, she was all giggles. Hopefully we will have a few more nice days so we can go again.

I wanted to brag about how well Abby is doing with her spoon. We support her at the elbow, and at the end of the spoon when needed. She used to need help getting the spoon to he mouth. Now, after having help loading the spoon, she moves it to her mouth by herself. We have to hold the end of the spoon most of the time to keep the food on it, but she knows the motions of putting it to her mouth. We have her do it for about 10 minutes, and then we feed her the rest so she doesn't get too frustrated and resist eating the rest of her meal. She's big stuff!

Wednesday, November 4, 2009

Abby has had a great week! At school yesterday, she responded "no", when asked a question. There have been several times when I have heard words pop out, only to convince myself that maybe I was hearing things. It's great when others hear words, too. They also they heard "mama", "dada", and "moo". It's so exciting when she says words. It doesn't happen too often, but when it does, it's amazing. I hope so much that she will be able to talk someday. I think that is the most difficult part of her diagnosis right now. I'm around a lot of 3 year olds, and they have a lot to say. I can't help but think that she has lots to say, too. I can't imagine not being able talk for even one day. She is one patient little girl.

She worked on using her hands with her occupational therapist today. She doesn't have much functional use of her hands, but she is able to grasp (primarily with her dominant hand) for a short period of time. She has been working on holding on while she swings. Today, she held on for longer than a minute without letting go. She also has been working on using her legs and arms to roll. We put her on a soft ramp, and help her roll down. She doesn't love it, but she's a good sport.

Monday, November 2, 2009

There is so much to be grateful for. Instead of racing to Christmas, I am trying to focus this month on the many blessings our family has. As I was reading some online articles, I came across this RSRT blog. It made me thankful that there are so many enthusiastic, brilliant, and passionate people who are working to find a cure for Rett Syndrome. Reading their accomplishments thus far, and all the work that is being done currently gives a tremendous amount of hope.

Sunday, November 1, 2009

Happy Halloween (a little late)! Abby was not able to trick or treat in our neighborhood last night because she wasn't feeling well. She slept most of the day, and couldn't keep anything down. When she woke up today (at 3:30am), she was better. I guess it was a 24hr. bug. She did get to trick-or-treat at school on Thursday, and had a great time. Of course, I took pictures.