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)