Sunday, September 19, 2010

I was approached by a colleague at work who had just finished a course from Cascades. As part of the course my colleague would receive a free pair of AFO's and she thought Elizabeth would be great to try them. I have been looking at these AFO's for awhile but did not want to invest money buying something that we have not tried.
Elizabeth was fitted for the Cascade Jump Start Bunny orthotics, these ones help to minimize knee hyperextension and keep her foot in proper alignment. We really want to work on Elizabeth's strength and increase her muscle mass to her lower legs and her old AFO's do not allow her to do this.
The bunny's have been great and she really likes them. They do limit her knee extension when she stands and they allow her to sit more comfortable on the floor which is great for school. The bunny's also help keep her feet from dropping when she rides her bike. She still needs the support of her regular AFO's for playing outside and walking distances as she will complain of knee pain at night if she wears them when she is active. We are hoping with her new phsyiotherapy block she will get some increased strength and be able to wear her bunny's when she is active too.

Sunday, September 12, 2010

Big Girl School

Elizabeth started Senior Kindergarten last week and is loving big girl school. I have not been worried about how she would feel about Kindergarten because she is so easy going. Her first day of school she went off with the other kids and didn't even say good-bye. The little girls flocked to her as her outfit was pretty 'blingy' with her new sparkling lite-up sketchers and her bejeweled shirt all which she chose herself. We arrived at school with all the 'non-normal' first day items that I thought would help with her transition (maybe more the teachers transition), AFO's, handouts regarding dystonia, ataxia and Auditory Neuropathy, 2 Epi-Pens, weighted pencil and FM unit.
I was a bit worried about her going as when she met her teacher last week they gave the impression there would not be an Assistant for her, of course I was not happy. Luckily on her first day I met with the Assistant who would be available to help her get dressed and assist her with gym and recess. We also on the first day met the Itinerant for the Deaf who was there to set-up Elizabeth's FM unit which I was really impressed with.
All in all it was a good first week. There are things that we need to iron out but for now I am biting my tongue and trying to avoid being 'that' Mom. Hopefully as they get to know Elizabeth they will understand how much she just wants to be like her peers and will allow her the same opportunities, for now I will just hang on and wait.
You may have noticed in Elizabeth's pictures no AFO's, we are trying out some new ones and will post her progress soon.

Monday, September 06, 2010

Elizabeth had her routine hearing check at Sick Kids last week and as it is becoming quite monotonous. Elizabeth has to listen for the sounds and place pegs when she hears the sound, this is the same activity she has been doing for the past 3 years (see above old picture). I despise this activity for many reasons; the pegs I am sure have never been cleaned, she of course will still put them in her mouth, the abundance of pegs are tempting for Elizabeth and her sensory needs (she loves run her hands through the bucket), I have to attempt to distract her from running her hands through them and keeping Elizabeth still for any length of time is a challenge. Elizabeth does pretty good despite how boring it really is but after 10-15 minutes we have both run out of patience. We have had the same Audiologist since Elizabeth's Auditory Neuropathy diagnosis and she doesn't mind all Elizabeth demands for stickers and for her to play the animal that make sounds. We also saw her ENT and he is still amazed by her progress as she is one of the few children to not need a cochlear implant. Only 15% of babies with AN regain their hearing and she is one of them which is such a blessing.
Normally her test results show a mild hearing loss in her left ear and her right ear tests fine. Last weeks results showed her left ear with a mild hearing loss and now a loss to her right ear as well which is not typical and is not related to congestion. AN can be such a frustrating diagnosis as it is does fluctuate day to day and we do not know how much distortion Elizabeth deals with. A great example of how AN distorts speech is here.
We will go again in 4 months to be retested and hopefully her right ear will be better. It is a good reminder for me to increase how much we use her FM unit at home and when we are out but the times when she really needs she cannot wear it (the pool and gymnastics). I must remind myself to bring a different activity for Elizabeth, any ideas would be much appreciated.

Wednesday, September 01, 2010


Elizabeth just finished another session of swimming lessons. I know I have said this before but she loves water, I think this a time she feels free. Sometimes this freedom she feels is a bit too much for her and she thinks she can just float away but at least this time they did not have pull her out from the bottom of the pool. She was able to hold still long enough for a back float and is beginning to swim a bit on her own (under the water). As usual we sit on the edge of our seats waiting for her to go under and this time was even worse because they were learning to dive in the deep end. I myself think learning to swim should come before diving in the deep end (with no floaties). Her instructor was great as well and she really worked hard teaching Elizabeth to pull herself out of the pool which too she is getting better at. We will sign her up again in the spring as I think I have enough white hairs for now.