On A Whim

It began as a casual discussion and ended up with a fun filled vacation with my parents and my sister Katy. We spent a week in Orlando and had a blast visiting Disney's parks and hanging out at a really nice resort. It was a bit cooler but the weather was so much warmer than the miserable damp cold here at home.
Elizabeth had planned our itinerary before we left and Gram's and Auntie Katy were dragged to Dinoland at Animal Kingdom, to ride the clam shell and see Nemo at Epcot, to ride as many rides as we could at Magic Kingdom and visit her favourite characters (Lightening McQueen, Mator and the Einsteins) at Hollywood Studios. With a letter from Elizabeth's physiotherapist we were able obtain a wheelchair pass for her stroller and did not need to wait in the long lines (I highly recommend this). Being able to take her stroller in the line was so helpful there was no way Elizabeth can walk and stand for prolonged periods amongst so many people without falling and getting hurt. Having the pass makes me feel that for once Elizabeth gets a break and they made such a big deal of her and even gave her some extra time with her beloved character Leo from the Little Einsteins.
We enjoyed some time at the pool at the resort and Elizabeth loved swimming and playing in the sand. Mommy got a trip to Target which is my favorite store I love all the deals there, the kids clothes are so cute and totally cheap. All in all it was great vacation I think we tired my parents out and my sister was not a fan of walking but it made her day when she was pulled on the stage during the High School Musical play. Disney is such a magical place we loved every minute.

Arts and Crafts

I love doing crafts and Elizabeth shares that love with me. Crafts are such a fun way to learn and practice her fine motor skills. We have been working on her printing with her OT using the Hand writing without Tears program, it is a great program it really makes learning fun. Elizabeth is printing about 10 letters on her own and worked hard at signing all her Valentines cards. Her drawing is great, when she concentrates she can draw some pretty recognizable pictures most often her house, spiders and cats. Her cutting is going great she is controlling her scissors easier, she still has a slight tremor and twitch in her hand that makes some things difficult. Using her new love of the Veggie Tales we frequent this site for all sorts of craft ideas like Bob the Tomato above.

We love winter

We do really love winter. Yes it can be miserably cold, the shoveling is endless (beyond endless lately) and it takes a good 20 minutes before the car warms up. There are so many fun things to do in the snow. Elizabeth loves winter or maybe I should say the snow. She loves snow and is trying to eat her way to China in our snowbanks. The pebbles at the park that feed her sensory needs have been replaced by snow, mountains and mountains of snow. Elizabeth is now crawling in the snow and takes advantage of her low position to eat as much snow as she can (see above picture). It is nice as this is the first year she is mobile in the snow and it is great exercise for her. When we can convince Elizabeth to abstain from her feasting we are tobogganing. Elizabeth is a daredevil going down the steep hills on her own, this is really amazing because at the beginning of the season she was still not sitting on her own in a sled. Elizabeth is also learning how to skate, Daddy has built her a rink in the backyard and she is doing well with her walker wandering on the ice. This weekend has been quite warm and much of the snow has melted but I am sure more is to come as winter is halfway through and I will still be yelling 'Elizabeth only eat the white snow'.

Argh!!!

Once again things did turn out as expected. We visited Elizabeth's Neurologist with her new MRI results and was hoping for a final diagnosis of Ataxic Cerebral Palsy with her new results. It did not go as planned, he does not feel she has CP and is still wanting to rule out other genetic and degenerative conditions. He feels that the changes in her 2nd MRI may be as a result of a degenerative condition and has taken her MRI to many colleagues for their opinion. I don't think he believes me when I told him that Elizabeth is improving with her balance, we are amazed by her continuing progress he just sees a very smart but wobbly girl. He also wonders if Elizabeth's symptoms are dystonic (varying tone) instead of Ataxia but one of her diagnostic signs does not meet the criteria of CP; when he elicits a response in her foot her toes point down (CP points up). He also is looking into a cerebellum disorder such as Joubert syndrome and is still questioning Frederich's Ataxia (but the lab had lost her blood so we have to do again). He is quite concerned and wants to help us but cannot come to a conclusion so we wait again. We will be seeing a Motor Disorders Neurologist at Sick Kids, he feels this Dr. can be the only one to help us and maybe offer treatment. We are still waiting to see Genetics and maybe they can help to come to a conclusion, our biggest concern is that this can be passed on to other children.
Good news her EMG was okay so it rules out a neuropathy and we don't have to do it again. Having needles stuck in her leg with electricity going through was not a good experience for Elizabeth or Mom it was quite painful for her. She is again on a waitlist for another sedated MRI to ensure there are no new changes.
We would love everything to be okay for Elizabeth but the reality it is not and we can handle that. It's the constant what if's and waiting for a diagnosis part that is getting a bit long, drawn out and not fun. Elizabeth should be at home playing not being tested for everything under the sun.