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.

Tuesday, March 30, 2010


Yesterday, I was sitting on the floor while Abby was walking around playing with her toys.  She came up to me, and hugged me.  Abby gave a hug.  This is huge.  For those of you who get hugs every day, this may not seem all the monumental, but believe me, it is.  I got my first one last week (made me cry).  I mean, a huge, arms-around-the-neck-and-squeeze kind on hug!  She has given small ones before, where she taps our back, and we assume she is trying to hug, but this was so different.  It was a rare glimpse of her body doing what her brain tells it to do.  She raised her arms, put them around my neck, and squeezed.  That's quite an accomplishment.  It has made my day week.  Keep them coming, Abby! 

She also went back to school yesterday and had a great day.  Her teachers said she was all smiles all morning.  That makes me so happy to hear.  She starting having periods during the day where she won't swallow on Sunday, but not nearly as much as last week.  I am thinking maybe she has a scratchy throat still?  I don't know.  She is happy, though, so that's enough to make us happy.  She is doing awesome using her left hand, after having it in a cast for a few weeks.  She made choices well at school, and she was finger feeding great when she got home.  Go Abby!  Her left hand is, by far, her dominant hand, so it's good that she is using it again.  She doesn't use her right hand for much, other than mouthing and patting.

Wednesday, March 24, 2010

All Better!!

Abby is doing SO much better today.  I didn't even have to take her to the doctor....again.  She stopped running a fever Tuesday morning, and she has been back to herself ever since.  She is swallowing normally, which is a huge relief.  It's so nice to see her wide smile and hear her laugh, after a week of quite.  Trying to figure out what the problem was is exhausting, so I'm just glad it's over.  She still has a cough, but seems to be feeling fine.  She stayed home from school today, and maybe tomorrow.  I don't want to send her until I know she's not contagious.  The combination of hand mouthing and patting everything makes for quite a germfest.

I have photos to post, but I have Logan has misplaced the cord, so I'll have to post them later.  I'll have to go searching in the playroom.  It's probably right next to the set of carkeys that we lost a few months ago.            

Monday, March 22, 2010

Under the Weather

Abby hasn't been feeling well the past few days.  She started running a fever on Saturday, and starting coughing on Sunday.  Today, Monday, she still has a fever and is pretty congested.  I have taken her to the doctor twice, but they say its a viral infection and should last only a couple days.  She is also not swallowing very well.  It's wierd.  She eats and drinks normally, but she will not swallow her saliva.  Her mouth is closed tight most of the day, and has been since last Sunday.  If I pry it open, it is full of saliva.  What the heck, right?  I have had her throat checked twice, assuming her throat was soar.  I am hoping whatever is making her feverish is also making her not want to swallow.  I'm not writing off the swallowing issue as a "rett" thing just yet.  If she is still not feeling well tomorrow, I'm taking her back to the doctor.  I have a hunch there is more to it than a virus.  Yes, I'm one of those parents.  Three times in 6 days.  She just looks so pitiful, and very uncomfortable when she is trying not to swallow. If only she could tell me what hurts....          

Friday, March 19, 2010

Abby's cast if off! Yay!!!

This morning, I took Abby to get her cast taken off.  While she did not like getting it cut off at all, she was so happy when if was finally removed.  I thought it might take her a while to start using it, but that was not the case at all.  As soon as she stood up, she used it to push the buttons on a few toys in the doctor's office.  Later, she picked up a piece of cookie and put it in her mouth.  It looks like the 4 weeks she went without using it didn't hurt it's function.  What a relief!

Wednesday, March 17, 2010

Abby had her Speech and Physical Therapy evaluations at Kids Center today.  She gets her OT there already, but she was receiving her PT at a center that offered hippotherapy as well.  Our insurance has changed, so we're having to switch to a participating center.  Anyway, it went well.  I really liked the PT that did her eval, so hopefully Abby will be put on her schedule.  She will get both Speech and PT weekly.  Our appt. with Susan Norwell has be rescheduled for next month.  I talked to the speech therapist today about collaborating with Susan, and following the plan she gives us.  Here are a few of the things that she will be working on in PT and Speech:

Physical Therapy
- improving balance (walking on uneven surfaces, ramps, etc.)
- transitions (chair to standing, standing to sitting, laying to sitting, etc)
- stairs- (always hopeful)
- protective reflexes (exercise ball)
-finding an appropriate mobility thingy? - maybe a convey stroller?  Abby is getting too long for her strollers, so some time in the next year, we will get something that will be more appropriate for her.  For now, I use the double stroller....I only have so many hands to push.  She walks great at home and on pretty even surfaces, but there are lots of times where she needs a lift.
- baring weight on hands (crawling, all fours, etc.)

- using eye gaze to make choices and object identification
- additional goals will be added as Abby starts her therapy

The craziness of the past few months has made for a break in therapy, but it's time for the girl to get back to work.
This evening, Abby and Logan hung out with their cousin, Kiley, at the park.  Kiley is great with the kiddos, and they love her so much.

Saturday, March 13, 2010


Abby and Daddy dancing at grandmothers 90th birthday party!!
Abby gets a much needed hair cut.  Thanks Nonnie!

Abby and Logan visiting with their Nonnie before she's off to Texas.  

Sunday, March 7, 2010

The sun came out this weekend....finally!!

It has been so deary here for weeks, but the sun finally came out this weekend.  It is in the 60's today and feels so nice!
Abby's cast is now green.  The purple one was slipping off, so she had to get a new one on Friday.  This one does not allow her to move her elbow, but at least it will only be on for another 2 weeks.
I think Abby views the park as an outdoor therapy session.  She tolerates it, but by no stretch of the imagination do I think it would somewhere she would choose to go.  It is a good place for her to work on stairs, walking up and down ramps and other uneven surfaces, and using her hands.  For Abby, this is all work.  Sometimes we are successful in making it seem like play.  I think today she was so happy to be outside, she didn't care if it was therapy or not.  No doubt, her favorite part of the trip was the open space to roam around.  She is walking well, but I am a little scared to let her walk on the hardwood floors, fearing she might fall again and injure her wrist.  Outside, the ground was soft and she enjoyed walking around and checking out what all the other kids were doing.
This was the first time Logan has been to the park since he started walking, and he loved it!  He has finally found a place where he is allowed, even encouraged, to climb. 

Thursday, March 4, 2010

I rescheduled our consultation with Susan Norwell for March 30-31 today.  I am so excited!  She works specifically with kiddos just like Abby, and has many clients with Rett Syndrome.  We had the appt. scheduled for last month, but due to the seizure craziness, we were not able to make it.  The consultation will give us some direction with Abby's speech/communication therapy.  I especially want to talk to her about a communication device that could be suitable for Abby.  I imagine it will use a form of eye gaze technology, so I'm interested to have her give me some things to work on at home and at school to get her ready for such a device.  I think it's important to find someone who understands that Abby has the desire and the ability to communicate.  We just need to find a means for her to do so.  I think Susan gets it and I can't wait to hear what she has to say.   

I have also been making arrangements for our trip to Colorado Springs in May to attend the IRSF Family Conference. It will be our first conference.  I am so ready to get some fresh ideas.  We seem to be in a rut lately, probably because Abby and I are both pretty bored with what we have been doing lately.  Abby hasn't had much therapy lately either, partly because of the hectic last few months, and partly because our insurance has changed, and we are having to switch providers.  She starts receiving PT and Speech again at the end of the month at the same center where she is currently getting OT.  When Abby was in First Steps, she had the best team.  They collaborated constantly, which was awesome. Hopefully, since Abby will now be getting all her services at the same center, there will be collaboration among her therapists again.       

To cut or not to cut?

Abby's Nonnie has always cut her hair.  She is so patient and it always looks great.  When she was little, I tried taking h to a salon to have it cut, but it didn't work out.  After a few attempts, the stylist told me she couldn't cut it if Abby wouldn't sit still.  Well, that wasn't going to happen.  I have tried to cut her bangs a few times myself, but it usually ends up looking ridiculous.  Well, her Nonnie is in town, so I am thinking about getting it cut while we have the chance.  I was planning on letting it grow pretty long, so I could just put it up in pigtails, but it looked so darn cute short.  What do you think?
I realize this is not the most important decision in the world, but I'm just glad there isn't another pressing decision to make today.   

                                         This is Abby last summer with shorter hair.
                                                     Let it grow?

Tuesday, March 2, 2010

Purple Princess

After one week with a cast, Abby is adjusting very well. For the first few days, she would not move her arm at all. Now, she is knocking it into everything. Her accuracy isn't great, but she's making it work. Unfortunately, she puts her hand to her mouth and her forehead a lot, especially when she is tired. The cast is pretty heavy and rough-not something you want to hit yourself in the face with. We have covered with with mittens and socks to make it softer, and tuck it in at night to prevent her from tapping her head in her sleep. Other than that, it doesn't seem to be bothering her too much.

Abby stayed home from school today because she was up A LOT last night. I'm not sure what the deal was, but she was very restless. When she doesn't sleep much at night, I don't send her to school the next day. It seems like we just can't get back into a routine. I don't think she has been to school more than 1-2 days a week since December. That's probably why she's been more upset at school lately.

Today I babysat, so she got to hang out with her cousin and a few friends. Even though Abby does not interact with other kids in a typical way, I can tell she enjoys their company, especially at our house (where she is most comfortable). When I can facilitate games with everyone, she interacts and is so happy. She gets a kick out of Ring Around the Rosie.

The kids played Pretty Pretty Princess. It's fitting that Abby chose to be the purple princess, to match her cast and glasses I'm sure.