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.      

School days..

Abby's teacher emailed me this picture of Abby and classmate the other day.  Aren't' they adorable?  

I am so relieved that Abby is doing so well at school.  First of all, she is just so excited and happy to be there.  We run into kids all the time who say "hi" to her when we are out and about.  It makes her giggle that she has so many friends of her own.  We have been so blessed that she has always been placed with wonderful teachers who have her best interest at heart.  I think she will be even more exciting when she has a communication device that will allow her to participate and communicate at a whole new level.  After the holidays, PRC (the company supplying Abby's communication device) will be doing a training for Wes, myself, her therapists, and her teachers.  That's a lot of people committed to helping Abby be successful with this device:) I think it will be coming SOON!  That would be the best Christmas present ever!!!  Well, not really.  The best Christmas present ever would be a cure for Rett Syndrome, but a communication device would be pretty darn wonderful!

I know it's been a while...

I haven't had much time to blog lately, but I do have a few photos to share.  Abby has been doing well, just the usual Rett Syndrome stuff.  We are still playing the waiting game on her device, but we're getting closer.  We've increased her evening seizure meds quite a bit.  Time will tell if the increase stops her morning episodes.  We had a visit with our local neuro a few weeks ago and talked a lot about the current IGF-1 Trial.  It's so exciting that doctors (not in the RS loop) are excited and knowledgable about what it happening at Boston Children's.  He said that it's pretty "mind blowing"!   The possibilities give me chills.  

Abby is loving school, which is just wonderful.  The best part is that the feeling is mutual with all her teachers and friends.  They are crazy about her!  She has been welcomed with open arms by everyone.  I was so worried that she would have a hard time making friends, but that is just not a problem.  Everyone knows Abby.  Given the huge barriers that prevent people from being able to communicate Abby, I am so grateful for the special connections she is making at school. What a blessing!    

This is a photo from her first field trip.  She had a blast picking out a pumpkin and taking a hayride.   

 

Abby and Logan were my little Supers for Halloween.  Logan is addicted to sweets, so Halloween was just fantastic for him.  Abby did much better this year, walking a great deal around the neighborhood.  She, too, had her fair share of candy.  I had two choices this year regarding Abby and trick-or-treating.  If we pushed her in her chair, she could use a switch to say "trick-or-treat".  We have done that in the past, and she really likes it.  However, she also likes to walk (with help, of course) and that would allow her to go closer to the doors to get the candy herself.  In the end, we let her walk without the switch.  It wore her out, but I think she had fun.  

A couple of weeks ago, Abby participated in an annual fashion show organized by the center where she receives some of her therapies.  There were over 70 kiddos with special needs that participated in this year's show.  Strutting out on the stage in their new digs makes everyone smile.  It's a fun event.  Abby had two escorts that made her feel like a princess.  

I'm surprised I don't have any photos from Thanksgiving...not even one.  I guess I was too busy eating, and keeping up with kids, and then eating some more.  Anyhow, I hope you all had a very Happy Thanksgiving! We have the trees up and are gearing up for Christmas.  Logan keeps asking me if Jesus is going to be here for his birthday party.  I would love some help answering that one.  I have yet to give him a satisfactory answer to the whole "but where are the pilgrims now?" question.    

Abby stayed home from school today so that I could monitor her seizures.  She had been having one every morning last week, and then they increased over the weekend. On Monday, she vomited at school.  When she has an increase in seizure activity, it isn't unusual for her to vomit.  Also, if she was getting some sort of stomach bug, she would have seizures.  That makes it difficult to determine the cause, if there even is one.  She seems to be in a pattern where she has about 3-4 weeks without seizures and then she has a week or so with daily seizures.  I expected to spend the day at home, recording anything unusual on my phone so that I can show it to her neurologist later this month.

I had my phone ready to record Rett episodes all day, but nothing crazy happened.  Instead, I got a photo of Abby not doing anything too crazy at all, which was nice.  Well, now that I look at it, her lips aren't exactly pink, but that's okay. It was a nice day.  Tomorrow will tell if this seizure "phase" is over.  

If anyone has any insight into these seizure patterns, I would love to hear it.  I don't think there is a trigger.  She does well for several weeks, then she starts having a seizure or so every day for 4-7 days.   Those seizures are all short, about 20 seconds.  She stops breathing, lips turn blue, non responsive, eyes roll back or stare, her tongue is doing something weird (i can't really tell what, but it sounds like something is happening in her mouth), and she sometimes vomits.  When it's over, she is out of sorts for about 15 minutes (very jumpy and limps are flailing) and then she sleeps for about 30 minutes.  When she wakes, she is back to normal.  I haven't caught these episodes on an eeg.  Has anyone's daughter experienced similar episodes?  We've increased her Keppra, but they still happen.  We have also given her Klonopin during the week when she has these episodes, but it didn't stop them either. I think we may need to get them on an eeg before attempting to increase meds again, or just deal with them. She sees the doctor in a couple weeks.  

My post was going to be about how nice the day was because I was expecting to have to deal with seizures, but instead we spent the day hanging out and later listening to a webinar about the IGF-1 trial.  I got a little sidetracked. Even though she didn't have any seizures today, they seem to still be on my mind.

Device Update

The process of getting an eye gaze device for Abby has been painfully long, but we are getting very close... I think.  First, we had to get the trial approved by both our insurance and secondary insurance.  That took forever.  It took a while to actually trial all the devices.  Now we have made our decision and we're again waiting for approval for the purchase of the device.  Yesterday, I am happy to say, we received our approval from our primary insurance company!!!  It should have been a given that they would approve the purchase since they already approved the trial, but I was still holding my breath that it would work out.  As it stands now, we are just waiting on approval from her secondary.  That was the longest wait for the approval for the trial, but at least it is the last part of the process.  As soon as they approve, which they should since they already approved the trial (and it was successful), we will get the device.  I hope that PRC has a device available and we don't have to wait a long time to get one shipped.

Now that we have decided on the device, we made a low tech communication system using the symbols that will be on her talker.  It is not a perfect system, but it will keep her familiar with the symbols while we are waiting on the device, and it will give her a way to communicate that is similar to the talker.  Even when she gets her talker, she will need a low tech way to express herself using the same symbols for those times when her talker isn't working properly, or if we don't have it with us.  This is the first time we have used these particular symbols for anything other than the eye gaze device trial.  When I showed it to her, she looked super intensely at the "home screen" symbols.  I think she was expecting some sort of voice output (other than me) when she looked at the symbols.  I'm sorry Abby, but we're working on it!