Therapeutic Riding

Sophie had been on a waitlist for a local therapeutic riding place nearby for well over a year.  We had waited three + years before that for her seizures to stabilize so that we could even apply.  We finally got a call in October that they had a spot open up for her.  I used to ride competitively when I was a teenager so I was over the moon that my girl was going to ride horses!  When we arrived Sophie was visibly excited and didn't want to take her eyes off the horses.

Lucas gettting in on the horsey action. lol.

We took her out for an assessment and we were sooooo excited.  Unfortunately that excitement was blown to smitherines pretty quickly.  We got her up on a horse and they expected her to hold her trunk up mostly by herself.  Sophie doesn't have that muscle tone needed to keep herself upright and she was a rag doll without any support.  It went downhill really fast and before I knew it we were being told that she wasn't a candidate for the institute.

I was devastated, we had been excited for this for so very long and it was gone just like that.  I was a mess, crying right there.  Sophie had a cut on her nose from the helmet when they let her head smash on the neck of the horse.  They were obviously not prepared at this facility for someone with such severe CP and it showed right away.

I have a number of friends who have successfully enrolled their children in therapeutic riding/hippotherapy with kids as severe as Sophie or more so.  Once we lick our wounds we will start looking for a new place to try.  In the meantime I have these adorable photos of Sophie in her riding helmet.

This photo was when the OT finally went in to help.  They took her off the horse shortly after as they thought she was in distress.

Musical Lightbox

Last winter we were gifted a switch adapted musical lightbox.  Sophie has become very proficient at using her switches so this was a nice addition to her adapted toys. I haven't used this with her as much as I should because she really enjoys the response she gets when she activates the switch properly.
 

 The lightbox is from American Printing House for the Blind.  It lights up and plays music when the switch is activated.  I am hoping to get a latch timer for Sophie because she finds it hard to hold the switch down for any extended period of time.

Since Halloween is on its way I added some little spider and pumpkin stickers for her to look at when the lightbox lights up.  She was very interested in them and I will have to think up more ideas of what to place on the lightbox to keep her visually interested when playing with it.

Soccer and Alphie

Sophie received a soccer ball from Santa this year that is pretty awesome.  It talks and sings and is very responsive to the slightest movements.  That Santa sure does know how to pick them.  Sophie is loving playing soccer by kicking the ball off her foot rest and she has a grand time throwing me the ball by rolling it off of her lap.  She loves the interaction of the back and forth and you can tell she is very proud of her ability to move the ball herself.  Her gross motor skills are improving in leaps and bounds.

Sophie is getting a lot of therapy this year and I think it is really paying off.  She has joined a physical literacy program for children with epilepsy/neurological conditions and she is loving it.  Each Saturday she joins a volunteer for three hours along with other children and they have fun being active.  It is a government initiative with the epilepsy support centre and it has been great so far.

We are also lucky enough to have a recreation therapist coming to her school regularly to help improve the inclusion element of Sophie in gym class.  Sophie's EA has taken on the suggestions with much enthusiasm, unfortunately the teacher still doesn't include Sophie in gym class and to this point hasn't really shown any interest in learning ways that Sophie can be included in her class in the future.  Thankfully we have an amazing rec therapist that can teach Sophie's EA so it is the teachers' loss.  Right now they are trying to create an adapted badminton racket.  Awe.Some.

Sophie's fine motor skills are also forever changing and improving.  This is an Alphie robot toy my mom got her for Christmas 2012 and Sophie was not interested and didn't have the dexterity to do anything with it.  Just a year and a bit later and Sophie is fascinated by it and is trying very hard to push the small, fairly difficult buttons all by herself.  I always try to rotate around her toys so that she doesn't get bored and I am glad that I never gave up on this one.  It also is great for literacy and numbers depending on the card you choose.

Shootin' hoops

Today Sophie was very happy to get up in her HOPSA and have some fun with her new toys.  She loved looking at herself in her new mirror and walking on her new playmat.  She was in her HOPSA for quite a while today and after quite a while I thought she might be done but then she seemed to have a new burst of energy. 

Lucas received a new basketball for Christmas which gave me the idea of bringing up the basketball net from the basement for her to play with.  We have used this with Sophie many times before but usually with her in her walker or wheelchair.  This was really nice to use in the HOPSA because she could move around more freely and really feel like she was playing a basketball game.

We got out two different balls, one that her fingers can get caught in which makes it easier for her to hold (even if accidently) as well as a small foam ball that is light and somewhat squishy.  With some help from her dad Sophie had a great time making some dunks and a few times she didn't even want to let go of the ball.  It is great practice for her to hold on to things like this and she seemed to really enjoy it.  It didn't hurt to have mommy and daddy cheering her on when she made the baskets.  :)

 

Today was a busy day getting blood work done at the hospital and going for multiple x-rays, we are hopeful of some good news when we get the x-ray results, more on that later.  Sophie was a real trooper and I was happy that we were able to have a relaxing afternoon at home.  Jason's mom has been visiting for a few days and Lucas and Sophie have been loving it.  They are getting totally spoiled with attention and are exhausted each night from all the fun.  It is hard to believe tomorrow is new year's eve already!

New apps for fun cause and effect

Sophie has been doing a great job of using her eyes and her hands lately.  She is focusing very intently when given something new to play with and I am finding that she has been having good control with her hands when aiming for something to touch. 

 

I have recently downloaded some new apps for her because it had been ages since I had given her any new apps to play with!  She is really loving most of them.  Afew of them...

Peek A Boo Sesame Street
Finger Bells
Splish Splash Inn HD
Black & White High Contrast by Fischer Price
Sing with the Wiggles

Finding cause and effect apps that aren't too baby but keep her attention is still a struggle.  I love when she is able to work an app all on her own so that Sophie can have the satisfaction of doing it all by herself.

I am going to be on the hunt for some more apps that will work well for her, hopefully some fun Christmas apps too.  We have ordered an Ipad stand that fingers crossed will hold the Ipad up for her at the right angle too.  It will make it nicer for Sophie to use the Ipad in her wheelchair if I don't have to hold the Ipad all the time.  We have never had a stand so this will be all new territory.

New AFO's

Sophie is feeling much better, her IV antibiotics over 5 days definitely did the trick.  The pneumonia seems to have left the building.  We are hoping to resume summer, if only the weather would cooperate!

Over the years Sophie has had a number of AFO's and it was becoming apparent that she was needing a new pair again.  AFO's (ankle foot orthotics) help Sophie in her stander by preventing her ankle from buckling.  It needs to fit like a glove and unfortunately her most recent pair have been causing us problems for a year.  I took Sophie back to the Orthotist to try to get it figured out but she wasn't willing to listen to what I had to say, at all.  In fact she dismissed all my concerns right away.  It was one of those appointments that it was obvious that she felt she knew best because she was the expert.  I was pretty mad by the end of the appointment because I was sure that the issues were going to remain when we came back for the adjusted AFO's, and of course they did.

So like any other smart consumer I let my wallet do the talking and I asked around and found another Orthotist (AFO's cost almost $6000). I am so happy I did.  It wasn't easy to find another place that does these type of customs but I found an old school gentleman that believes that mom can have valid concerns, but not only that, before I even told him the issues we were having with Sophie's current AFO's, he pointed out what he thought would be problems with them and of course it was all the same concerns I had.  Sold.

He pulled out all the plaster and got to work.  He still uses plaster because he feels it gets the best fit, better than the new fangled stuff.  The proof was in the pudding.  He created a leather booty for within the new AFO to keep Sophie's foot safe and comfortable.  No more hard plastic and moving parts that aren't needed that only cut and rub her foot anyway.  The style is totally different and so far it is working much better.  Sophie has been tolerating her new AFO's very well.  A happy Sophie equals a happy mommy.

Switch adapted for the fun of it

Playing on her own terms is not something that Sophie gets to do very often.  We are able to give her choices between items that we choose for her to pick from, but we don't really always know if she wants something different.  When she plays with something we sometimes have to help her play.  I love the concept of Active Learning because it is more on her own terms, playing without help. 

Excited about what has landed on her tray

Checking out her switch

I ordered some battery interrupters in the winter and a few days ago I finally got around to making some of Sophie's toys switch adapted.  One more step on the road to independence for my girl.  When a battery operated toy is switch adapted, Sophie is the one who has the control of that toy.  She makes it go, she makes it stop and she had a great time figuring that out this weekend.

Checking out her horse

Hand on the switch, ready to make it go

I know the more that she is able to use switch adapted toys, not just programs and games on the computer or Ipad, she is going to enjoy all the fun toys that are out there more than if we held it for her and she wasn't a participant in the playing.

Holding her switch and watching the horse walk

Happy with her toy and that she made it go :)

I switch adapted the little horse that neighs and walks across the floor first.  Next I used a dollar store fibre optic light to switch adapt.  Both worked really well and were easy to close the compartments that hold the batteries. It isn't always that easy, sometimes you have to file away the plastic to make everything fit.  It is hard to tell in the photos but there is a wire that goes from the back of the horse which attaches to the plug for the switch. 

 It is possible to make your own battery interrupter, which I will probably do at some point.  There are lots of tutorials on the web, but for now it was nice and easy to order a premade one that I could just use right out of the package.

Lots of opportunity for fun awaits. :)