Abby starts with A!

Something amazing happened this week.  Alison, Abby's speech therapist,  and I were talking with her today about school.  Abby kept grabbing the turkey that she made earlier that day at school.  I guided her to the "art class" page on her computer so she could tell us about it.  She immediately said "red, yellow, orange".  It's not often that Abby is that quick and consistent.  I could tell she was "on".  She then went, on her own, to the alphabet/spelling page.  The letters are arranged like they are on a rotary phone (remember those?), with each box representing three letters.  When she hits the ABC box, she has the choice of selecting any of those 3 letters.  In the spelling page, she can also say things like "it starts with", or add punctuation.  Anyway, she immediately spelled her name.  A-B-B-Y!!!  She was able to go in and out of the letters three times and find all the letters.  We hadn't even asked, which is probably why she was able to do it without getting anxious. Amazing.  So her therapist and I both went crazy and Abby proceeded to say "it starts with A".  And thats not all.  She kept tapping the turkey with her hand and then said "it starts with T U".  She was so proud of herself. My girl is learning how to spell!!! 

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!

What are we dealing with?

Abby has been on seizure meds for 2 years now.  We have gone back and forth about these meds because girls with Rett Syndrome have so many episodes that mimic seizure activity and we have never confirmed one on an EEG.  She may have several a day for a week and then not have another one for weeks.  The minute we schedule an EEG, she will go seizure free until it is cancelled.  Seriously, it happens every time.  Abby had an appointment at the Rett Clinic last month, where I showed Dr. Percy a video of the events that she has been having for about the last  6 months (which are different from the seizures that she was initially put on medication for).  She was initially put on Keppra when she had a lot of seizures during an illness.  She was fighting off a stomach bug and sinus problems.  She hasn't had any seizures like that since then.  Dr. P  discussed the possibility that those true seizures were triggered by her illness, but that these recent episodes are not seizures.  They could be Rett spells, other neurological events that shouldn't respond to seizure meds.  If so, we need to consider if she needs to be on a daily medication.  This comes on the heels of her having the best day ever when I forgot to give her her morning Keppra dose.  Coincidence?  I don't know.  I didn't really think she was having any side affects, but she was so alert and vocal on that day that I am now questioning that assumption.  We really just need to confirm one of the episodes on an EEG.  I'm so tired of not knowing what the heck we are dealing with. 

We had an EEG scheduled last week.  Of course, she had an all time record without a seizure.  We ended up canceling the appointment at the last minute.  She had three weeks without anything that resembled a seizure...until tonight.  It was scary.  I think part of the problem was that she was congested, which made the vomiting and lack of breathing that usually accompanies these events even more problematic.  I hate being so helpless when she is struggling to breath.  Ugh.  I hate Rett Syndrome.  The only positive that I can find is that she is very relaxed afterwards.  It was right before bed time, so she took a bath and went right to sleep. 

I don't know if it's better for these events to be true seizures or Rett spells.  If they are seizures, there might be a better chance of controlling them.  That would mean  she would continue/increase the meds and the side affects that go with them.  If they are other neurological events that aren't true seizures, she won't be taking meds, but there will be little chance of controlling them.  It seems like almost all of Abby's friends with Rett are struggling with seizures right now.  They are just a nightmare. We need a more effective treatment for seizures for our girls very soon!   

The Dance

This weekend, Abby's school had a Father/Daughter dance.  It was a fundraiser for a sensory garden to be built on the outside of Abby's classroom.  That will be awesome.  She was scheduled to be having an overnight EEG at that time, but it was cancelled a few days before, so she got to go to the dance!  Yay! She and Wes had a wonderful time.  I worked serving the girls and dads ice cream, which worked out nicely because I was able to get a few photos.

                                               

They are a pretty stylish couple, I must say

Abby was up and dancing a lot!

But she needed some help, too.  Those shoes are pretty cute, but maybe not the most sensible choice....but they are so cute.  

Uh oh.  This is one of her anxious faces.  If she could tell you, I'm thinking she would say something like this, "I'm breathing crazy and I can't really get my mouth to swallow or close.  Ugh." I was thinking, with the loud music and all the excitement, she would be anxious all night.  I was pleasantly surprised that her anxiety was short lived.

They had a booth set up for manicures, face painting, and hair color spraying (among other things).  Abby did all three.  All pink, of course.  After getting out of bed the next day, her sheet and pillow case were a pink glittery mess.  I love it!

A donation of epic proportions!

Since Abby's diagnosis, our family and friends have participated in an annual strollathon to raise money for  the International Rett Syndrome Foundation.  We've used social media to gain support and raise money for our cause.  Wes works as a multimedia artist for UPS, and also does freelance work making animations and has written a couple of books to instruct others how to use some of the software that he uses.  Most of the contacts that he has in his profession are not local, often they are all over the country, people he has never met.  He decided that even though he usually posts only information about his profession on these forums, he did share a little about Abby and the strollathon a couple of years ago.  I am so glad he did.  This 3D community has been very generous, raising thousands of dollars towards our team each year.  Artists gave and companies encouraged their employees to help our cause.  One company in particular, Luxology, has been a huge supported of Team Abby.  We are humbled by their generosity.    

Last month, Wes read on a forum that Luxology was running a special sale.  They were discounting one of their software programs, and also donating half of the proceeds to IRSF!  We couldn't believe it.  It was a great sale, making the software half off.  Wes even bought it himself.  I later got an email from IRSF stating that they received a check for $60,000.00!!!  That amount will be more than enough to fund a research grant for an entire year.  That could make such a difference.  Thank you Luxology!   

Check out their website to learn a little about what they do at luxology.com

It's here!

After a year of waiting, Abby finally has her Eco2!  We are all so excited.  We were able to set it up last weekend with a mount that we are borrowing (until we get one of our own).  Abby has spent a lot of time exploring and having fun with it.  It has been a long time since she had the trial, so she's relearning where everything is on the device and figuring it out, which is going to be an ongoing process.  She's learning a new language using symbols and accession them with her eye gaze.  It's not simple, but she's smart and very motivated.  We know she can do it!

We're already learning a few new things about her.

1.  She's a bit of a hypochondriac.  "I don't feel well" and "I am not feeling well" are two of her favorite phrases, even when she is smiling and laughing.  Sometimes, it is followed by "that is silly", so I think she's just being funny.  The symbol is a little green face, which is pretty silly.  I can see why she keeps looking at it:) Funny girl.

2.  She wants a drink ALL the time.  She is getting her point across. "I feel thirsty", "I would like some juice", "I need a drink"

3.  It takes even longer for her to answer a question than I thought.  When she asks for something that I'm not sure she intended to say, I sometimes ask her if she meant to request it.  She might say that she needs to use the bathroom right after she just went.  It's really easy to say something on the device unintentionally, so I might ask her if she does need to use the restroom.  It is amazing how long it takes for her to answer.  She will look at yes and no, dwelling on each of them but not selecting them, looks away from the device completely, all before selecting her answer.  Darn apraxia.  I don't make a habit of asking her lots of questions for this reason-I don't want to stress her out.  Sometimes she won't even answer me at all, which is fine.  I'm learning so much about her by just listening to what she wants to say.  

4. She tells me "I like to go shopping" a lot.  This was news to me, but good to know.  I think we should do a little shopping this weekend to celebrate her passion.

And then there are those things that we already knew, but it's awesome that she can show us in a whole new way!

1. She likes the color pink, likes to go to school, and is five years old. She likes to tell me about it a lot.

2. She's funny.  Forever, I have been telling Abby to use her eyes to show me what she wants.  When she eats, she looks at the item that she wants.  So naturally, even with her computer, she still looks at the snack rather than the computer.  I don't want her to lose that, but I still model how she could request more food/drink with her talker.  Earlier today, she looked so closely at her juice box that she nearly knocked it over with her nose, then looked at the computer, then gives me a look like "I don't know how much more clear I could be right now".  Of course she looks at me over the top of her glasses, which is hilarious anyway.  She cracks me up.

I am so happy for her.  She lit up today when we brought it to school today for the first time.  They were just as excited, which also makes me happy.  I can't even tell you how great it was to leave her classroom with her talking to her teacher.  She was asking for a drink of water.  She was thirsty....and she could tell us!!  Amazing.


I found this news story to be so motivating.  This little girl with Rett Syndrome is using her eye gaze device to help sell Girl Scout cookies with the rest of her Troop.  How cool is that?  This is going to open lots of doors for miss Abby!

Not again!

If you're going to have a cast, it might as well be pretty!  Abby was fit for a cast on her left wrist today.  Unfortunately, she had another fall that left her with a small buckle fracture in her wrist.  As it turns out, unsteadiness, non-existent safety reflexes, lack of hand function, and weak bones are not an ideal combination.  I haven't really had any good ideas from the doctors to prevent this from happening again, but we go to the Rett Clinic in a couple of weeks, so hopefully they can help us out.  It doesn't seem to be causing her much pain, though, and she is very pleased with all the attention that her new bling it getting her.

Just last week, Wes mentioned that he was going to ban the use of glitter in our house.  I might have used to excessively with the kids over the holidays...maybe.  But a ban on glitter??  That's crazy, especially with a 5-year-old girl in the house.  When the nurse asked if she wanted glitter on her cast, Abby laughed out loud.  Funny girl.  Everything is prettier with glitter.

Happy Christmas

Abby was very happy on Christmas morning.  Despite the seizures that were making her tired and the inability to play with toys that she would no doubt enjoy, and her inability to express herself vocally, she was happy.  Isn't that amazing?  I was so worried that she would be sad because she couldn't open presents or play with her toys, but that just wasn't the case.

I lost a lot of sleep over the past few weeks upset about the fact that Abby can't play with the toys that other girls her age can play with.  Shopping for Christmas should be fun, but its just so hard to find things that I think Abby would like, things that she can use her hands to play with, but that won't make her feel like a baby.  I left the toy store on the verge of tears with frustration more that once. It's been the same every year since her diagnosis...and birthdays.  Sometimes they are just reminders of what she would be doing had she not been born with Rett Syndrome.  Are parents of kids with special needs always haunted by the dreams they once had for their child?        

I am realizing now that, thankfully, this is my issue and not Abby's.  She was just as happy as any kid I have seen on Christmas morning.  No, she didn't tear open any packages, but she was laughing at her gifts and loving them just the same. She didn't say "Merry Christmas", but she lit up when we opened the gift that she made for us at school.  It is the same case with her birthday.  I stress about how to make it special for her with her limited ability to participate, but no matter what we do she always has a huge smile on her face.  Regardless of how we celebrate, she likes the attention from family and friends.  That's what really means something to her.  I'm sure she likes the gifts, too, but they don't mean as much to her as they do to other kids.  They can't really provide her a lot of entertainment.

I don't quite understand how it is that she isn't more frustrated than she is.  How can she not be upset that Logan talks nonstop and she just has to listen?  I don't understand, but I know that she is in a better place with her abilities than most of us.  She went through a phase a couple of years ago when she did get frustrated a lot more than she does now.  Losing the little hand use she had was tough.  Biting and yelling were the norm. But most of the time, she really seems to be wonderfully content.  Seeing her face all these challenges with a smile gives me strength.  If I could be a little more like her in the face of hardship, that would be a wonderful thing.