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, May 30, 2010

IRSF Conference 2010

What an amazing weekend! Wes and I went to our first Rett Syndrome conference. It was pretty intense, but so motivating. We have learned so many ideas and techniques from the experts and from other families (the other experts). Seeing how successful other girls are doing in school and with their communication is inspiring, and gives us hope for Abby's future.

By far, the best part of the conference was meeting other families that share this common thread with us. There is an immediate connection that makes conversation so easy. Everybody "gets it". It gives us the overwhelming sense that we are not alone in this. All the crazy things that we deal with every day are ordinary for this weekend. It's great.

When Abby was first diagnosed, I didn't know how to think about the possibility of a cure. I didn't want to let myself believe that Abby could live the life that I had dreamed for her, with the fear that those dreams would be crushed again. I also didn't want to be pessimistic, and accept the inevitability that this was a life sentence for Abby. This weekend has given me a chance to appreciate the path that we are on with Abby, while still believing that her life will likely be impacted greatly in the future by a treatment or cure. The possibility is there, but I don't have to hang on to it for dear life. Life is good now.

Location:Colorado springs

Wednesday, May 26, 2010

Last day of school!

Today was Abby's last day of her first year of preschool. What a year it has been!

Saturday, May 22, 2010

Big Stuff!

I have to brag about my girl tonight. She has been rolling over from her belly to her back for a week or so now. She used to do it when she was younger, but she lost it a while back. With regression, she has lost hand function, so she doesn't want to bear weight on her hands to push up off the ground. Lately, however, she will push up and stay there for a while, and then roll over. I was trying to show her uncle Pat and aunt Teresa, so I put her on her belly. Well, I got a phone call so I left the room. While I was gone, she went from her belly to all fours to sitting ALL BY HERSELF. Wes was lucky enough to see it too. Hopefully, I can get her to do it again tomorrow. I'm so excited for her! She hasn't been able to execute transitions like that in a LONG TIME. She is always surprising us. Yay Abby!!!

Wednesday, May 19, 2010

more food allergies?

So, Abby had a food panel at her doctor appointment on Monday to see if she is still allergic to eggs and nuts. I was hoping she would have outgrown her allergies, but they just called and said she still is severely allergic to eggs and nuts, but is moderately allergic to milk and soy. What? For lunch today, Abby had a cheese stick, apple, soy nut butter sandwich, and milk. She eats a lot of soy because she can't eat nuts, and she gets a ton of dairy. She has never had any reactions. Could her stomach be hurting when she eats/drinks milk and soy and I not know it? Ahh! Her doctor said she should only consume them now in moderation. I am thinking about going to an allergist because I want to make sure that is right. With egg, nut, milk, and soy allergies (and acid reflux restrictions), there's not a whole lot left. The girl likes to eat, but I'm running out of things that I can give her.

Any ideas on the milk allergy thing? I thought kids usually outgrew milk allergies as they got older. She gets a food panel every year, and this is the first time soy and milk were a problem.

Monday, May 17, 2010

Carnival Fun!

Tonight, we took Abby to an AAC carnival, where she is getting her physical and occupational therapy. The carnival is put on by Kosair Charities. Abby was given a VIP (Very Special Communicator)sticker when she entered. All the activities were set up for nonverbal kiddos, so it was pretty cool. She had a great time. She still needed help, as she is just starting to use the symbols, but it was a great event. They also had some tables set up with AAC devices for us to check out.

It wouldn't be a carnival without cotton candy.

Abby made a sand art necklace, using the communicators to pick the shape and colors.

She especially liked feeding the elephant peanuts and getting a treat in return.

We also had Abby's 4-year well check today. It's nice to go to the doctor without any immediate issues. Her seizures are under control. The acid reflux seems to be okay,and she's not having any other health issues. Yay! She even rolled over this week for the first time in almost a year. In phase 3 of Rett, lost skills can be gained. Maybe Abby is going to start gaining back some of those things that she could once do. I hope so. It does seem like she is having a little better control of her motor skills lately.

Sunday, May 16, 2010

Abby had a great time today at her cousin's 4th birthday party. Happy Birthday Nolan!

The big four-year-olds

All smiles for Daddy!

Wednesday, May 12, 2010

Tuesday, May 11, 2010

I think that maybe you should reconsider your refusal to take an afternoon nap. I know our dinner conversation may not be all that entertaining, but falling asleep during dinner every night is not ideal. I know you're big stuff, but even some 4-year-olds still need a little rest after a day of school and therapy.

Sunday, May 9, 2010

Happy Mother's Day!

Happy Mother's Day to all the moms out there! We went to church and then out to lunch. Instead of sitting in the cry room at church, we sat with Abby in the sanctuary. I wasn't sure how she would like the (sometimes) loud music, but she did great. She sat with me and snacked on some cheerios. It was so much nicer being in the sanctuary, and not listening to the service on a TV in the nursery. I think she actually enjoyed sitting with us like a big kid. Abby gave me a cute paperweight with her picture in it that she made at school. Very cute!

I am posting a few photos of some things Wes and I have been working on for miss Abby. Wes is a techie, so when we got an ipad, he got to work making something for her to use. It is still a work in progress, but I think it will be a cool thing for her to use, especially when we are out. When she touches the picture, it says the appropriate comment. This screen is comments about her video. We also made a help screen. We have a lot of ideas of ways to use the ipad with Abby. The pictures have to be pretty big because her fine motor skills aren't great, but we are going to see what she can do with it. When Wes gets time to fine tune it, he'll make it available for anyone else who is interested in it. In the end, we want to be able to make it easy to swap symbols and record audio.

This is my much less techie version. Abby has been using this when we play in the water.

This is a very old communication device, but its about all we have that has more than a couple of choices. I am using it mostly to familiarize Abby with the symbols, but the surface isn't sensitive, so we have to usually help her push the symbol that she is looking at or attempting to touch.

Saturday, May 8, 2010

Sunday, May 2, 2010

So much to do...

It is so difficult to find the time to do everything that I want to do for Abby. It's probably like his for lots of parents, especially those of kiddos with special needs. It seems nothing is quite good enough, right? I have so many ideas in my head of how I want to do things for her, but at the end of the day, few of them get done.

For example, one thing I am trying to do is to print out symbols, and use them throughout the day with Abby. Until now, we have used mostly photos. Symbols are pretty abstract, so we will have to use them a lot, and in context, for them to work. I imagine bath symbols to use in the tub, appropriate symbols for water play, symbols to use when she's getting ready for bed, etc. We need to model using them in conversation so that she understands how she can access them to communicate as well. My plan was to get the 30 day trial of Boardmaker Plus, and print and laminate symbol cards all weekend. By tonight, I should have symbols everywhere for us to use. What really happened? I installed the software to find that it is not nearly as easy as I thought. I have messed around with it, and printed out a few symbols, but nothing that I am ready to use. Argh!!

I have so many other things on my mind that it's hard to focus on any one thing. I am so glad Abbys IEP meeting is over, but getting what she needs is going to be a long process. The meeting was 2 1/2 hours long on Thursday. We are fortunate that the people who work with Abby are supportive and have her best interest in mind, but it will still be an uphill battle to get her the services that will make her successful in school. It's expensive for the school district to pay for an aid for one student and for a device that will allow Abby to communicate, but that is not my concern. My concern is advocating for Abby. We will get her what she needs, but I really don't want to have to get an advocacy attorney this early in the game. Also, United Healthcare has denied Abby's Speech Therapy on the grounds that it is meant to restore speech, and since she has never had speech, how can it be restored? I mean, if she can't speak, why would she possibly need other means to communicate? I knew that these battles were coming. With our insurance change, I figured her therapies would be questioned. I will appeal, and appeal, and appeal. I knew the school would fight my requests, and they did. I'm not much of a fighter. In fact, I avoid confrontation whenever possible. It seems that's all going to have to change. If ever there was something worth fighting for, I think this is it.

Okay, I vented, now maybe I can get those symbols printed out....