Technology

In the spirit of Thanksgiving, I'd like to write how thankful I am for technology.  This is, by far, not the thing I'm most thankful for, but today it seems pretty important. Not the technology that allows me to make phone calls while browsing the internet, or watch movies and play games, but the technology that makes Abby's life better...and easier.  I'm so thankful for these resources that enable her to communicate.  She uses technology a lot.  It's not unusual for her to use her communication device (Eco2 with EcoPoint) to talk while using a laptop computer to listen to a story.  When she is stressed and over stimulated, she listens to music on my phone to calm her, or interacts with my phone to kill time in a waiting room. Would we survive without these conveniences?  Of course. However, I definitely appreciate the difference they have made in our life. Touch-screens that respond to her touch, even though it is neither refined nor consistent, make her happy.  A communication device that responds to her eye gaze is just amazing.   

Abby and Logan listening to a story on onemorestory.com.  She is using a jellybean switch to turn the pages and commenting on her communication device. 

School Update

Today, we had an ARC meeting for Abby to discuss the need for her to have a one-to-one aide and to increase her minutes in the regular classroom.  Thankfully, the meeting went well, and an aide was written into her IEP.  We have requested an aide a couple of times since Abby entered preschool, but each time it was determined that she was "well cared for" without an aide.  Our latest request was about 6 weeks ago.  It was again determined that it wasn't needed.  Ugh. We weren't happy with the decision, so we scheduled an ARC meeting to discuss it further.  A couple of weeks before the meeting, Abby was injured at school. She was sitting in a chair that was knocked over, sending her face first to the floor.  Fortunately, she didn't put her hands out to catch herself (which certainly would have caused a fracture), so her only injuries were to her lips, teeth, and gums.  After the trip to the hospital, our resolve to get her an aide was even stronger.  I wish it hadn't taken an accident to get Abby the services that she needed, but that's pretty much how it went. After a lot of phone calls to attorneys and advocates, recommendations from doctors and specialists, and Abby missing over a week of school, the district finally did the right thing for Abby....albeit a little late, but they did it nevertheless.

It has been beyond stressful. I'm so relieved that this fight is over. It has left me very disappointed in our school district, or at least the decision-makers who do not actually work with the kids that they are making decisions about.  However, the teachers and staff that work with Abby are great.  They are supportive and have her best interests at heart.  I am so excited for her to have more time in her mainstream room! I did a little lesson about Abby and Rett Syndrome for that class a few weeks ago and they were very receptive and welcoming to her. She has been increasing her time in the regular classroom gradually since kindergarten.  It has worked well, and she is progressing smoothly. She has reached the maximum amount of minutes she can mainstream without changing her placement to a regular education classroom.  For now, the placement is great.  She loves being around her typical peers.  Without their own communication barriers, they are able to connect with her in a very different way than nonverbal kids like herself.  With her aide, I am comfortable with her being able to have the modified instruction she needs.  I still think she is benefiting from the small group instruction in her self contained room, especially while she is learning how to use her device. For now, this is a great fit for Abby and I am very excited for what the rest of this year will bring.  

School buddies

         

How's Abby?

I haven't blogged in what seems like forever. I've thought about it many times, but the longer I wait, the more "catch-up" I want to do. If you know Abby, you know a quick "catch-up" is not easily done, so I get overwhelmed and end up quitting. So I'll just start with a picture and go from there.

Water workout

Abby started doing her PT in a heated pool last month and it got me thinking that we should take advantage of Abby's love of water.  She can't walk in the baby pool (the typical 12" depth is awkward) and she isn't able to stay upright in a lifejacket, so she usually sits in a float.  In an attempt to make the water a little more interesting/therapeutic for her, we bought this huge monstrosity for our yard.  The water is about 30" deep, so it lets the ring stay at her waist, giving her support if she needs it, but allowing her to walk safely.  It has a seat to catch her when she falls.  Today she was even putting weight on her hands as she walked! The resistance in the water will be super beneficial and I know she likes being able to maneuver around the pool independently for the first time.  Logan is going to have a blast in the pool this summer, too.  I love it when an idea actual works out....for now:)

When we bought this float for her at 6 months of age, we thought she would outgrow it over the summer.  It makes sad (and a little mad, honestly) every summer that I get it back out. I will be very happy when we can finally retire the blue duckie ring!

On a related note, check this out!

http://www.rettsyndrome.org/flash/Research-Flash_online_050912.html

    

We caught one....finally!

We have tried several times to catch what we think are seizures on an EEG.  Her events/episodes/seizures are very sporadic.  She may have 8 in one day, and not another one for 3 weeks. We had an appointment with her neurologist yesterday.  He suggested that we add a new medicine because she continues to have events on a regular basis.  I am uncomfortable adding a new medicine without confirming they are seizures.  As we left the office, I asked if we could try again to do an ambulatory EEG.  That's an EEG that they hook up in the office, but we get to go home and return the next day to have it removed.  As it turned out, they had an opening.  Just so you know, that never happens.  It is usually a matter of scheduling the EEG several weeks in advance.  Although Logan was not thrilled for what amounted to four hours in the doctor's office, we had to do it.  I never thought I would pray that she had a seizure/episode, but today I did.  I am so relieved that she did have an event before we returned the EEG!! Hopefully, everything was working correctly and the doctors will be able to read it and let us know definitivly if these events are seizures of not.  Just knowing that we don't have to keep trying to catch one on the EEG will be a burden lifted.

Hopefully, Abby won't have to sport the head wrap again for a while.  I pulled out all the stops today trying to get her overly excited/anxious.  We went shopping, which made her a little anxious, but when I started running out of time, we headed to lunch.  If Chick-fil-a at lunch time doesn't cause a seizure, I don't know what will.....and it did. 

I felt more than a little guilty about trying to get her to have an episode, so I gave her plenty of time to relax and wind down after the EEG was removed. Sorry, Abby:( 

  

Walking with the gait trainer

Abby received a gait trainer when she stopped walking without assistance.  We were so happy to get it, but she didn't really take to it until recently.  She would stand in it, but wouldn't take many steps.  She did much better with a harness.  Now, a year or so later, I'm so happy that she his getting more use out of it.  We took it outside a few days ago and she did great.  I can tell it's a little awkward for her, but it will be great to have it available for the times when I can't walk with her and the harness.  Go Abby!

I think she's a little happy with herself!

  

Movie Night

I love it when these two cuddle together!