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.

Wednesday, December 23, 2009


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

Monday, December 21, 2009

Merry Christmas..almost

We are in Christmas mode around our house. We celebrated with Abby's Papaw and Memaw yesterday, and made candy with my mom, sisters, and Abby's cousins today. Sometimes Abby gets anxious and upset in these situations, but it has really helped having her DVD player available for her now. It gives her something to do when everyone gets loud or she is not able to move around the way she wants to. She gets into a routine at her grandparents house, and she doesn't like it when a crowd blocks the area where she usually walks and plays. She still walks around and interacts with everyone, but now she can go to the DVD player in a quiter area when she needs to.

While I am SO happy she has taken an interest in her movies, this Little Einstein thing is becoming quite an obsession. Tonight, before dinner she cried for nearly 40 minutes. It came out of nowhere, and she was way too upset to give her choices of what she wanted. Usually, I can figure out what the problem is by offering a snack, drink, sitting her on the potty, or holding her with her favorite blanket. This time, however, she just got progressively more upset the more I tried to comfort her. I put her down to see if she would walk toward what she wanted, but she nearly beat up our Christmas tree. She was getting less sad and more mad by the minute. I decided that it must be her acid reflux and she must be in pain, so I put her in her highchair while I tried to figure out what I could do to make her feel better. Her DVD player was on the table, so I pushed play while I tried to figure out my next step. Well, as soon as her movie came on, she laughed. I couldn't believe it. She had cried so much her face was blotchy. Like I said, this Little Einstein thing is becoming an obsession.

It kind of makes me happy that she is so determined, though. The girl knew what she wanted and wasn't going to stop screaming until she got it (typical 3 year old). The goal is to give her other ways to communicate what she needs, but sometimes, crying is the most effective way for her.

Saturday, December 19, 2009

I haven't posted in a while because we've been quite busy. Abby has been doing well. She is now out of school for her Christmas break. She also has a break from her therapies, so it will be very relaxing for her. Abby's OT and I decided last week that she will go to Kids Center once a month instead of once a week from now on. I have lots to work on at home, and she sees an OT at school, so I think that will be enough. She is still getting PT weekly in addition to her school PT. We are not currently getting speech outside of school, but I am sure we will be soon. We are super excited to see Susan Norwell next month. I am hoping to get some direction with Abby's speech at that visit.

I figure Abby will be getting speech, OT, and PT in some form indefinitely. There will be times when she needs one more than others, and times when she may need to take a break. All 3 every week outside of school is difficult to schedule and hard on the wallet. It's hard to decide what can be done by us at home and what needs to be done at a center. I long for the days of First Steps (early intervention). We were so fortunate to have the best therapists working with Abby at our house. Now that she is 3, early intervention is over and any therapies outside of school are private.

It has been a while since I uploaded photos from our phone, so this is kind of a hodgepodge. Abby isn't wearing her glasses because they broke 2 weeks ago and the new ones haven't come in yet. Usually her eyes cross in photos without her glasses, but I think her strabismus might be getting better because she hasn't been crossing them much at all, even without her glasses. Yay!

Abby and Logan helping with the Christmas lights.

How can she fall asleep in the middle of lunch?

Abby was great on the horse this week. She rode backwards, to the side, and facing forward. It's pretty challenging for her, but Michelle sings to her to keep her from getting upset.

We love to look at houses that have completely gone overboard with Christmas lights. This house is one of my favorites. I don't know who they are, but I feel like I should drop a $10 bill in their mailbox to help pay their electric bill. Over-the-top light displays are awesome! Even Logan and Abby couldn't turn their eyes away.

Saturday, December 12, 2009

All I Want for Christmas

We have been dong a lot of Christmas shopping over the past few days for the kids. I have tried to find things for Abby that involve music. She LOVES music. Here are some of the ideas we have for her thus far.
Sound X Electronic SMI-1321P 8 Pad Drum Set - Pink -  Singing Machine - Toys"R"Us
This drum set is very sensitive to touch. Of course, Abby won't use the sticks, but I think she will like making her own music. We are going to put it on a small round table so she can activate all the drums.
i-Dog Amp'd - Green and White -  Hasbro - Toys"R"UsAbby's Nonnie is getting her this idog. It lights up and dances to the music that is hooked up to it. She will love playing her favorite music through it's speakers and watching it light up and dance. I think she will be able to activate it by herself. There is one button on the nose that turns it on. I may have to figure out a way to stick it to her shelf so she won't push it back or knock it over when she tries to push the button.
Product DetailsAbby's Memaw and Papaw are getting her a piano that plays music when she walks on it. If I tape the edges to the floor, I don't think she will trip on it. This isn't the exact one she is getting, but it's similar.

I ordered this communication purse for Abby after seeing it on the Girl Power to Cure website. They have some great ideas for Christmas gifts kids with Rett. This purse is so cute . I am trying to get a set of photos cards the right size ready for Christmas.

She will also be getting Little Einstein movies and a few other toys. My sister found some tone bells at Pottery Barn that Abby can push with her whole hand instead of using a grasp to ring them. It takes a lot of thinking to find the right gifts for kiddos with special needs, but our family is great about finding things that she will love.

Monday, December 7, 2009

Thursday, December 3, 2009

Abby had a rough day at school yesterday (or today-depending on what time it actually is right now). She fell out of a chair while trying to stand up. Abby can get out of her chair sometimes. Due to her apraxia, when she attempts to plan a movement, the message from her brain to her muscles gets all jumbled up. Sometimes, however, her movement is the result of emotion. These times, she doesn't have to think about it, so she is able to execute the movement successfully. That's how I understand it, anyway. The chair she was sitting in today was actually too high for her to get out of independently, and she fell forward, hitting her face on the ground. Her teeth cut a pretty big laceration inside of her lip. We took her to the hospital, assuming she would need stitches, but it turns out they don't stitch a mouth laceration unless it goes all the was through. She had lots of blood and a big lip, but nothing serious. Thankfully, Abby wasn't too upset about the whole ordeal. Once Wes found some Little Einsteins that he could play for her on his iphone, she was happy. By the time we left Kosair, it was about 3:30. She had no nap and no lunch, and was still all smiles. She is such a little trooper. I think her teacher and I were way more upset than she was. This was the first time one of Abby's falls have landed her in the hospital, and I'm hoping it's the last.
I am so excited! We have scheduled a consultation appointment in January for Abby to see Susan Norwell, a speech therapist who specializes in treating girls with Rett and other kiddos that are nonverbal with motor impairments. I put a link to her webpage, Focused Learning Solutions, on my sidebar. She has done some amazing work with people with Rett and I can't wait to get some ideas to help Abby communicate. Our appointment with Dr. Percy, in Birmingham, has also been resceduled for January. Dr. Percy and Jane Lane are doing a Natural History Study that involves nearly 1,000 persons with Rett Syndrome. As a part of the study, Abby visits them at UAB twice a year, which is great because we get the opportunity to ask them questions and get their imput. It's going to be a busy month, but I love talking to specialists who really "get" my girl.

Wednesday, December 2, 2009

Abby did so well at school today. Her teachers said she is letting them know when she needs to go potty every time. She walks over to the restroom door, and hits a picture of a potty to let them know. I think the routine at school is really helping with her potty training. Now, if only we could get a routine going at home. She used to push a button that said "I have to go potty" that was outside the door. The problem with that was she REALLY likes to push any button and hear the response. If she pushed the button, I would put her on the potty. She was sitting on the potty A LOT, and not really having to go. Now, I just put her on the potty when she walks into the bathroom. I know she will get it at home and I'm so proud of her for doing so well at school.

Abby and her occupational therapist, Linda, played in rice during therapy today. Abby worked using her hands to grab, activate toys, and scoop. She also went to the sensory gym to play on the big therapy ball and swing.

(Thanksgiving photos-Abby and her cousin, Kylie)

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.

Wednesday, October 28, 2009

Today, we took advantage of the break from the rain and took a walk. We found a great trail not too far from our house, perfect for checking out all the fall colors before it's too late. We got some great photos of the kids. You wouldn't know it from looking at the pictures, but Abby was VERY upset when we started walking. Like, lets just go home, upset. After about five minutes, she was laughing. Her mood swings today are making me dizzy. She did the same thing at therapy this afternoon. She's ecstatic one minute, devastated the next. I have to remind myself that it is so much more aggravating for her not to be able to communicate than it is for me. But, my goodness, the mood swings.

Monday, October 26, 2009

We had a nice relaxing weekend. We usually read stories every night to help Abby and Logan get ready for bed, but for the past few nights, it hasn't quite worked out the way. Abby has been getting VERY giddy at bedtime.

Wednesday, October 21, 2009

After school today, Abby went to Kids Center to see Mrs. Linda, her OT. Abby is usually sleepy when she gets out of school, but not when she gets to Kids Center. She gets a sudden burst of energy. Abby likes getting a snack while she works on feeding herself, playing games, and working in their sensory gym.

Linda helping Abby hold a crayon.

No, Abby is not dressed up like a cat burglar, she is wearing a SPIO garmet. It's made of a lycra blend, giving her compression to help her body awareness, among other things. She used it last year, but I didn't see that it helped much. We are reintroducing it again to see if it makes a difference.

After working hard, Abby took a break in the ball pit. Even Logan got to play!

Abby got a new Tripp Trapp chair tonight. She has grown too tall for her highchair, so this adjustable chair is a good fit. She likes it already. What a big girl!