Thankful for uneventful days

Today was an uneventful day, and I'm thankful for that.  Abby didn't do anything that made me call the doctor, search the internet, or read through our Rett Handbook.  I didn't feel the need to stare at the monitor while she slept or keep an eye on her lips to see if they were a tint of blue.  She roamed around the basement without assistance for the first time in a long time, which is so great.  She swallowed well most of the day and was in a pretty good mood.  

Last week it was a seizure one day, blue lips a couple of times for a few days, eyes rolling in the back of her head one day. There were the usual melting spells and periods when she wouldn't swallow.  She walked okay one minute, but wouldn't even stand up the next.  It was not the best week.  She stayed home from school so that I could monitor what was up with her breathing.  I am thinking she was having small seizures triggered by breath holding.  

I'm still not used to it.  I call the doctor and try to get some answers.  Why are her lips blue when she's not seizing and seems to be breathing somewhat normally?  Is her breath holding causing seizures?  Why would her eyes roll back?  Why would she have a seizure out of the blue when she hasn't had one in 8 months?  What should we do?  

Abby's pediatrician is consulting with her neurologist and a pulmonologist, but I already know what the conclusion will be.  She has Rett Syndrome.

One day I might get used to it, but I'm not there yet.  I know all of the above are common in RS.  I know there is very little, if anything, that can be done about it.  It just doesn't seem like that should be the case, I guess.



  

    

In the next few weeks, Abby will have a lot of new things to start working on.  She is set to restart hippotherapy (horse therapy) soon.  She did very well with hippotherapy in the past, but they stopped taking our insurance. Now that she is on the waiver, she can restart.  With all the trouble she has been having with her unsteadiness, hippotherapy is a great thing!  

Also, her PT is ordering her a gait trainer and a Convaid Stroller/wheelchair, or something similar.  Now that she's too big for a child stroller, it is necessary to have something comfortable for her to sit in for those times when she isn't able to walk the distance.  Since she is unable to step up on the bus, she will use the wheelchair to get on and off the bus.  I have put off getting one long enough.  Her little feet are hitting the wheels in her stroller, so I guess it's time.

Even when she is anxious and unsteady, she will be able to walk in the gait trainer, as it will prevent her from falling.  I am hoping that it will give her more confidence, making her less anxious about falling.  I should point out that the goal is still to keep her walking independently.  Today she did great, and was able to walk around for quite a while without help at all.  At other times, though, she just needs assistance to keep her safe.  I am thinking of it as a temporary fix to her unsteadiness.  I am confident that she will be able to walk independently again soon.  That's not entirely true, but trying to remain confident that she will.

The thing that I am most excited about is Abby starting private speech therapy again.  Our insurance has denied her speech, so she has only had it at school since January.  Now that she is on the waiver, she will get it on a weekly basis.  This means we can start the process of getting her a communication device.  I can't wait!!!  I read about them all the time.  I know Abby will thrive when she is able to have a voice.  As soon as we start speech, I want to start the process of getting a trial of at least these two devices to see which would be a better fit:
Eco2
Tobii  Ceye
I can't wait!! Though she isn't in speech yet, I have been in touch with a therapist who knows Abby, and we are completely on the same page.  I know it's a long painstaking process to get funded, but I can't wait!!

Logan

Most of this blog is dedicated to Abby and her journey with Rett Syndrome, but this post is about another amazing little kiddo.  Often, Logan plays the role of Abby's little brother, especially when he accompany's me at her school, therapy, or other appointments.  I'm sure he's had more therapy than any of his friends.  He knows all about communication switches and loves using them to tell stories.  He is one of the boys who is always jumping and running into things, yet he has never knocked Abby down, which is nothing short of a miracle.  They share smiles in their carseats-Logan especially likes Abby's sneezes and squeals.  Sure, he gets frustrated when she pats his head with her cast (ouch!) and is mad when he has to wait for her to finish on the potty before we are able go outside, but he is very gentle and sweet to her.  He runs to her bedroom to grab a pull-up and a wipe as soon as I take her to the bathroom.  They both like for him to feed her snacks, and he is happy to share his juice box with her.    He's a sweet little guy....feisty as any little guy I've ever seen, but sweet nevertheless.  

He is crazy about sports, or balls, or both.  It's an obsession, really.  Instead of playing at the playground, he wants to watch the people playing tennis.  I made a special trip to an amazing park that I though he would love, but he only wanted to stand and watch the UofL field hockey team practice across the field.  He can't get enough of Sports Center, and was loving laying on the couch watching the World Series.  I thought this was surely just a phase, but, when he starting grabbing the sports page, I began questioning that assumption. 

Fortunately, Logan is going to spend some one-on-one time with his grandpa tomorrow while Abby goes to therapy and the dentist. He is sure to have a blast hitting baseballs and shooting baskets.  

   

    

We have already been trick-or-treating twice, and we will go again before Halloween. There are so many Halloween parties.  Abby is loving it.  She likes the lights, music, and all the costumes.  She liked it much more than the pumpkin patch.  We've had a busy few weeks-here's a few photos.  

Abby and Logan loved trick-or-treating at the zoo.  Abby wore a witch hat with her cute tutu and Logan wore his spiderman pajamas costume.  

Yes, that is a hug!  Abby LOVED the princesses at the zoo, so we got her an Aurora costume for Halloween.  

Abby and I had a play date with Aidan, his brother Kade, and Karlie and her sister Emily last week.  Aidan and Karlie have Rett Syndrome also. Aidan's mom, Kerrie, was nice enough to have us all out to her house.  Her boys are just precious!  I am so happy that Kim and her girls made it, too.  Karlie is absolutely adorable!  It is always great meeting with other Rett families.  We decided that a girls night out is in order very soon.     

Abby's class had their Halloween party today.  She got to wear her costume, which she loved.  Unfortunately, she had a seizure at school this morning.  It was the first one she has had in nearly 8 months. Ugh.  She seemed fine after the seizure, just a little weak.  She still was able to stay for the party and even go to therapy.  Hopefully, it was just a breakthough seizure, and she won't have any more....hopefully.  In the rush to get to her school after hearing she had a seizure, I left my camera at home. She looked pretty sweet in her princess costume-you'll just have to take my word for it. 

Fall Photos

It seems necessary this time of year to take the kids to a farm and pick pumpkins.  It seems like they should love the hayride, the pony rides, the petting zoo, and all the fall festivities.  Somehow, it has yet to turn out that way.  Logan was less than impressed with anything the farm had to offer.  In a patch full of pumpkins, he found a.... bouncy ball.  Abby was a little irritated that she could barely take a step without tripping on a pumpkin vine and didn't love the sun in her face all afternoon.  They weren't upset or fussy, but they definitely would have had more fun at home or the park.  With that being said, one would think we will buy our pumpkins at the supermarket next year, but I doubt that will be the case.  Maybe next year they will have fun, maybe.      

Even though the kids didn't love the farm, we did get a few photos.  The smiles didn't come easy.  I looked ridiculous dancing around and singing behind the camera, but I'll do what it takes to get a cute photo.  After all, we had them looking all cute in their fall sweaters, drove across town, and carried them all over a farm-I was going to have something to show for it.     

    

Rett Syndrome Awareness Month

In honor of Rett Syndrome Awareness Month, I put together a montage of Abby. Well, I guess it just gave me an excuse. I have seen a few other ones lately and it gave me the itch to make one for Abby.   Anyway, here it is. Warning-It might be a little sad, or maybe its just me...but I can't watch it without crying. I didn't intend for it to be sad, but photos of little Abby are tough to look at, even though big Abby laughs when she watches it.  I think it will be useful to have a short DVD that gives information about Abby's journey with RTT.  I can give it to businesses/groups when it comes time for fundraising or getting grants etc.

Photo and video editing at www.OneTrueMedia.com

Ouch!

Miss Abby has fractured her arm again.  Sigh.  It's a small break, actually 3 small breaks, but a break nevertheless.  Again, we didn't figure out what had happened until the day after it happened.  Determining that cause of pain in a child that doesn't talk, can't point to a spot that hurts, and has a high pain tolerance is VERY difficult.  Wes and I laid her on the bed and started poking all over her body to see what made her cry.  Even with a broken arm, she didn't flinch when I manipulated her arm.  

She was upset a couple of times last night, so I thought she was just tired or was having acid reflux.  She would get upset for a while, and then calm down and sleep for a while.  This morning, however, she was even more upset and we noticed that she wasn't stemming with her right hand-a dead giveaway.  She always pats her chest with both hands.  We immediately took her to the children's hospital for an x-ray.  We went to a new one in the area, which was amazing.  They have made the hospital like a funhouse for kids.  We actually had a woman who came in to entertain Logan while Abby was getting her splint.  She brought toys and slushies.  It was fun for all, even Abby, who did not mind laying in bed watching cartoons and snacking all morning.  

Apparently, when she lost her balance yesterday and fell back, her arm was fractured, even though we caught her before she hit the ground.  Maybe her arm hit before we caught her?  Maybe it was fractured earlier in the day when Wes reached for her arm when she was losing her balance?  I don't know because neither incident was really all that noteworthy.  She was upset, but not inconsolable.  She has been getting very anxious about falling, so we thought she was just scared, not hurt.  She loses her balance a lot, but we always catch her.  I guess we are going to have to be more careful about how we catch her.  Honestly, I was waiting for child protective services to come in and question how it is that this is the second break in a year and we don't know how it happened.  But they didn't come and the doctors were very good, even though we had to correct a couple of them that Abby's diagnosis is Rett Syndrome, not Tourette Syndrome.

Abby is doing fine, though.  Now that her arm is in a sling, she isn't upset at all and  was told that she was the best patient that they had ever had at the hospital.  The hospital has only been open a few weeks, but I didn't tell her that.  She was beaming.  That's my girl!