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.

Friday, April 30, 2010

Yesterday was absolutely gorgeous!

Location:Park photos

Friday, April 23, 2010

Monday, April 19, 2010

So Proud!

Abby started her consult with Susan Norwell today. It went great! I am so proud miss Abby. She worked for a couple hours in the morning, and again in the evening. She really enjoyed working with Susan, who has already taught us so much. It's awesome to meet someone with so much experience with Rett Syndrome. She really gets Abby, and Abby is loving it. We don't have a lot of devices at home for Abby to use, so it was great to see Abby try a few out. We were blown away at how well she did with everything that we tried. By the end of the visit, we will have an idea of what device we need to get for her. She doesn't normally use symbols either (she uses photos), but she was using the Boardmaker symbols without any trouble. I hate to say it, but I think we have underestimated her. This consult is just what we needed to get on the right track. Abby usually gets bored with me "working" with her after about 30 minutes, but she lasted much longer today. The communicators she used today gave her so many options of things to say. It was amazing. She clearly has a lot to say, if given the right tools!

Here are a few of the things she tried today:

Abby seemed to like this device, although it limited her responses to 8 choices. She could access all of them, but had more difficulty physically getting her hand on the top row. It would be good to have the model that allowed scanning, so she wouldn't have to rely on the accuracy of her hands. It would be great to have this with the Boardmaker Plus, which would give us lots of symbols at our fingertips.


This device is something that Abby could use for a long time. She could use scanning to access an endless amount of words and phrases that are age appropriate, which is cool.


Abby loves books! Susan had some great ideas to make books more interactive for her. I don't know what I think will be the best communicator for her yet, but I do think we will definitely invest in Boardmaker Plus. It will give us access to thousands of symbols. With it, we can start using symbols in a natural context throughout the day. I'm starting to get it, Susan. It's not so much that we're teaching her the symbols. We're using the symbols in our conversations with Abby, so she will learn how she can use them too.

Sunday, April 18, 2010

On the road

We are in Chicago for our consult with Susan Norwell this week. We see her Monday, Tuesday, and Wednesday. I'm so excited! It was about a 6 hour drive, but Abby did really well. She watched her new DVD for a while, but for most of the trip she was content to just look out the window and rest. She always likes to roam around new places, so she has been enjoying playing with her toys in the hotel room. I hope she is as happy tomorrow and is willing to work for Susan.

-- Post From My iPhone

Wednesday, April 14, 2010

Happy 4th Birthday!!!

Abby turned four yesterday. It's a little hard to believe.  She had a great day at school yesterday, and smiled whenever someone told her "Happy Birthday" or sang to her.  What a cutie! I tried to make her party something she would really enjoy.  Sometimes she gets a little anxious around a crowd, so we kept it very small.  She has been loving playing in the water, so we cooked out and let her play on the deck with her water tables.  She was a little tired, but she seemed to enjoy herself and all the attention.  Her OT gave us the idea of using a switch operated fan to help her blow out her candles (thanks Linda).  It worked great.  Here's a link to the video. 

She was very interested in her new Little Einsteins DVD, of course.

Friday, April 9, 2010

We're home from the hospital. We met with a new doctor, an eptologist, who specializes in seizure disorders. He seems familiar with Rett and was pretty knowledgable. The eeg last night did not show any seizures, which is good. It was an abnormal eeg, but that is Abby's norm, if that makes any sense. This doctor seems sure that what she was having in January and February were true seizures. It can be difficult to tell the difference between the shaking/staring spells common with Rett and true seizure activity. Even though a seizure was not caught on the EEG, we are assuming they were seizure because they stopped when we gave her Keppra, and they were observed by a couple neuro's, all who said they were definitely seizures.

Ideally, she would have had the 24 hr EEG when she was having days where she had multiple seizures, but they couldn't schedule it until yesterday. It is still unclear if the staring/blinking spells that she had a while back in her sleep were seizures or not. Either way, it doesn't seem too significant since it isn't happening frequently.

Long story short:
Abby was having general seizures a few months ago.
She's not having general seizures now that she on Keppra.
She may or may not have had a few different type of seizures at night over the past few months where here eyes flutter.
She didn't have any seizures last night.

Did we need the prolonged EEG to tell us this? Probably not.

Thursday, April 8, 2010

I am killing time while Abby sleeps, and I came across this great blogpost. Check it out. The blog is written with facilitated communication by a women named Karly who has Rett Syndrome. She is amazing. This post discusses her visit with Susan Norwell, the speech therapist that we have a consult with in two weeks. I'm praying nothing happens that will change our plans, as we have rescheduled several times. The post makes me even more excited to meet Susan.


I'm having trouble making the website a link. I don't quite have the hang of this iPad yet. It has come in awful handy, though. Between Abby and Logan, our old laptop is missing about 10 keys. Typing on this is much easier!

24 hour EEG

Today, Abby is having a 24 hour EEG. I haven't been looking forward to having the leeds put on her again. Last time, with the 20 minute EEG, she was inconsolable. This time, the tech was much more gentle, and Abby didn't mind at all. We will stay at the hospital overnight, and they will see what kind of seizure activity she is having at night, if any. She is staying on her medicine, so I wouldn't really expect much to happen, but people much smarter than me say that the only way to confirm seizure activity with Rett Syndrome is with this prolonged EEG, so here we are. She is perfectly happy with her movies and her favorite blanket, so we should be okay. I am waiting for the doctor to come in and convince me to have an IV put in. I'm not budging, though. I know it's "seizure protocol", but it will make her miserable and she has been fine at home for several weeks. Here he comes...

What a surprise, he doesn't think she needs one - no IV for Abby. Yay!

Wednesday, April 7, 2010

Fun in the Sun

Abby seems to be having a great Spring Break. I don't know if its being outside or what, but She has been in the best mood all week.

What a smile!

Tuesday, April 6, 2010

Happy Easter

I hope everyone had a Happy Easter. We enjoyed celebrating Easter at church on Saturday and with family on Sunday. Abby enjoyed the treats, of course. She had a baby in her Easter basket that she thought was pretty cool. It talks and plays peek-a-boo using a motion sensor on it's forehead. It didn't take her long to figure out to hit the baby's head to get it to play. We have been really enjoying this awesome weather. I brought out the water tables today for the first time this year. Abby was so excited! She loves playing in the water.

Logan got a VERY short haircut for the summer.