March Break

Last week was March Break here and Elizabeth had the week off. Between having some down time with Grams while I was at work we managed to fit in some fun activities. We visited the sugar bush with Elizabeth's friend Alex and went another time with Daddy; they played in the snow, ate lots of maple sap, maple syrup, maple candy and of course pancakes. We went to the Royal Ontario Museum with her best buddy Owen and his brother Austin they loved the dinosaurs, the bat cave and checking out all the child friendly displays. Of course as things are not good in the tummy department for Elizabeth she had one of her vomits in the museum, with the help of my best friend Amy and Mommy's quick instincts it was caught and disposed of before anyone had a chance to blink (I will discuss these woes in another post when I figure out what is bothering her). We also enjoyed a night away in a hotel with Alex and we took the girls shopping at a very cool mall that even had a racing alley with rides. Elizabeth also had her first real play date with a girl in her class, it was so sweet to see how well they get along and how appropriate Elizabeth was in playing with her. All in all it was a good week and we were lucky to have some nice warm weather as opposed to now where it is miserably cold and rainy.

Trotting

Elizabeth has started trotting at her hippotherapy now and of course she loves it. Elizabeth and her instructor (with much of Elizabeth's persuasion) have worked out a plan, if Elizabeth works hard in her session she gets to end with a trot. It is just a brief trot but she squeals with delight when the horse speeds up. Watching her is like watching a rag doll being bounced around as she still has pretty low tone in her trunk but she hangs an with a big grin. She now is doing most of her session holding on the reins which shows how much of an improvement she has made. Elizabeth has tried a couple times to get her horse into a trot when she shouldn't but so far the horse has not been persuaded. Elizabeth is already upping her requests to begin jumping but for now we will keep with trotting.

Good-bye Winter????

Our winter has been pretty pitiful in terms of Canadian weather. We have had small amounts of snow that melts as fast as it falls. I love winter and all that there is to do in the snow and cold and this year we really have not been able to do too much of it. We were able to go sledding twice, build a very very small snowman, construct a small fort (I had to use all the snow from our road to build half a wall) and Elizabeth got to graze in the snow. On the colder days we have been taking Elizabeth skating at local outdoor park and she really is getting better; she can stand independently for a couple of seconds and with her walker can shuffle a couple of feet.
This past week has been beautifully sunny and warm so we have been out bike riding and drawing on the driveway with her sidewalk chalk. We are not sure if this is a sign of spring or will we still get another cold snap with a dumping of snow, either way we will find a way to have fun outside.

Biting Fast

That is how Elizabeth described the pain in her knee the other night. That night was one of the worst; she was crying, gagging and screaming out 'momma they are biting fast'. It was one of the nights where the only way I can get her to settle is to rub her knee until she falls asleep (after motrin, heating pad and rubbing cream).
We did see the Orthopedic surgeon and he had ruled out a knee injury and growing pains as it is localized. The surgeon's input was 'it must be behavioral, she should not be getting that much Motrin' needless to say I was very upset after seeing him if he knew us at all he would realize that this is not behavioural and that I have gone to great lengths to ensure that this does not turn in to a behavior issue.
The reality is Elizabeth has pain that no one can really figure out and no one can really give us options to prevent this pain. Elizabeth is right now out with the neighbourhood kids and her Dad and has been out for a couple of hours which means that tonight she will be in agony. Do I bring her in to avoid her pain getting worse or do I hope that in time she will get stronger and this will get better? I can't see how this can get better as each time she grows it starts up again as she becomes more unstable and hyperextends more. It really is a vicious cycle we want her to be active but at the same time we want her comfortable. Until then we might buy shares of Motrin.

Mornings

I hate mornings, I am not a morning person and I really like/need sleep. We have a bad habit here and on the days I am not at work Elizabeth sits happily on our bed watching tv while I get a bit of extra sleep, this bad habit causes us to run behind in the mornings. Elizabeth also has a very hard time in the mornings she is often miserable, slow to move and getting her fed is painful. Breakfast is not Elizabeth's good meal, on an average she has 1/2 piece toast or muffin, 2 ounces of applesauce and 1 ounce of juice and this takes an hour at least. This agonizing breakfast leaves us running behind even more. I have tried pleading, feeding Elizabeth, yelling and taking her toys away but nothing works. The above picture I had told her she could not play with her toys before school as she had taken so long to eat, so instead she sat happily reading her favorite book about bugs so much for punishment..
To add to our morning drama a missing AFO or beeping FM unit will be sure to keep us from getting to school on time.

Olympic Spirit

Elizabeth has really been enjoying the Olympics and we have been having some Olmypics events here at home. Elizabeth loves watching the skeleton race so we have devised a skeleton run with the board that Daddy uses to work on his car. Elizabeth has perfected the pose that the riders do with their head up and legs straight and squeals with delight as Daddy pushes her around the house. Using Ramon's CME boxes we devised a bobsled run with organza and a rubbermaid box, I am not sure what Ramon would say of his use of the boxes but at least we got the dust off them.

Helping Out

Elizabeth loves to help around the house. I think partly this is because she likes to be by my side but she really is a big help. I don't mind her helping with laundry as it us a great way for her to work on getting up on her toes which is really difficult for her. She is also getting good at putting away her clothes, folding and she LOVES to help me bake (or snitch a couple of chocolate chips).

Cupcakes and Candlelight

We had a quiet Valentine dinner together with Elizabeth. Dinner consisted of overdone burgers, salad and cupcakes which of course was consumed by candlelight. Elizabeth had helped make cupcakes and both her and her Dad took great pleasure in consuming them. Elizabeth and Ivan have a love for sweets that I will never fully comprehend, the way their eyes glaze over and the silence that fills the air as they enter pure bliss is something they have inherited from Grandma Ellie. Elizabeth was very happy Valentines morning to wake up to a new Webkinz; of course sticking with her girly theme it was a dragon which she named Valentine. We could not have had a better day together as a family she has comes so far since Valentines Day day 5 years ago.

FM Unit

After much discussion with Elizabeth's audiologist and her ENT we have decided to try an FM unit to help Elizabeth hear in noisy environments. The FM unit is comprised of a small hearing aid/tube that is placed in her ear and a microphone that the main speaker wears around their neck. The FM unit allows Elizabeth to only hear the speaker not the environmental noises or her peers. Elizabeth's hearing impairment is quite unique, Auditory Neuropathy is a difficult diagnosis as no type of hearing test can really determine how much she hears or does not hear, the difficulty with AN is related to the static/distortion that interferes with hearing (think a static radio signal) and this also fluctuates day by day. The use of hearing aids is not helpful because they amplify the distortion/static.
Elizabeth has very acute hearing at home but when we are in a noisy environment her hearing is limited. Most often in a noisy environment we touch her to get her attention and then speak to her close face to face.
We have been using her FM unit for the past couple of months and do notice her being more attentive and not needing a physical reminder. Her teacher at school notices she is more attentive at circle time and during gross motor time she will follow directions without being asked again. I have used it when we go out grocery shopping and it is amazing, normally I have stop, yell her name or go and get her when she wanders off but with the FM unit she comes immediately and follows directions to get items with me only whispering.
The FM unit still is a bit fiddly as it falls out a lot and just recently she lost the ear piece. We are very thankful our insurance approved this as it very costly and we even were approved for damage/loss which I think we may need to use more than once. Hopefully one day they can find other ways to treat and test AN that do not include a cochlear implant because at the present that is the only way to remove the distortion.

Ballet

We are totally excited Elizabeth is taking ballet and she is loving it. Through one of Elizabeth's teachers I had learned about an adaptive dance class that is in a town next to us. I took Elizabeth for a preview class and automatically knew this was a great class for her. The class is run by the owner of the dance studio and is aided with girls who are in the dance class prior. Each child is paired with a volunteer who guides them through all the movements. The class is no cost and the parents watch the class from another room. The fact that I sit for 1/2 hr is a bit odd to me as every program Elizabeth is in I am usually running around with her in a full sweat but I think I can get used to it.
The class is quite challenging for Elizabeth as it requires balance and stability and most of the exercises cause her to lose balance but with the help of her assistant she can follow the group. Elizabeth was so excited to be dressed in her ballet suit and once dressed proudly declared 'I think Jake will like this', Jake is a little boy in her class who is just as spunky as her. At the end of the year the class will put on a recital which I will be there beaming.