Thursday, July 24, 2008
We met with Elizabeth's Neurologist to review the results of her MRI. Her MRI is pristine not one mark on her brain, the only thing they noticed was a narrowing of her spinal cord. Her symptoms still continue to puzzle everyone, her gross motor and self help skills were between 16-20mths and her cognition and language was over 40mths. The Neurologist has many theories; Spinal Muscle Atrophy SMA, Frederich's Ataxia, Spina Bifida, peripheral neuropathies and dystrophy disorders. Many of the disorders mentioned can be degenerative and have us beyond panicked. He didn't mention to us but I noticed when he tried to elicit Elizabeth's reflexes she had little to no responses to her limbs. He concludes that none of her symptoms are related to prematurity but probably as a result of genetics or some spinal cord dysfunction. Once again we are on an emotional roller coaster and another waiting game. He sent Elizabeth for bloodwork and she once again was a brave girl letting them take 8 vials to send across the country. He has referred her to Sick Kids for EMG, nerve conduction studies and we will wait for another MRI this time of her spinal cord. The wait for an MRI continues to be 10mths, I am going to plead with her other Neurologist to put her on the urgent list at another hospital. After hearing all his thoughts ataxia seems like easy way out. Please pray that things will be okay for her and that whatever disorder she has is not degenerative and that she will stay our energetic happy little girl. We have not asked God for much in the past but at this point we don't know what to do. She means the world to us.
Thursday, July 17, 2008
Elizabeth loves swimming and is desperate to swim on her own. We had done swimming lessons in the past but withdrew her as she was having a hard time keeping up with the lessons. I enrolled her in a new program called Timid Toddlers and with this group parents have the option to stay in the pool with their child (for Elizabeth's age group she would now be on her own by now). We join her group on the first day (late as usual) and the children are holding onto their parents with all their might and the parents are looking quite fearful of what is to come. I carry Elizabeth into her group her arms and legs are thrashing, she is splashing everyone within ten feet and she is squealing 'let me go, I need to swim, let me go'. It took all of my strength to hold onto her and keep my swimsuit on. A father says 'looks like we have a dare devil in the group'. I think he is right as she is trying to figure out how she can go down the massive water slide they have. She really is trying to swim at home in her pool and when we put her water wings on she is lifting her legs and kicking in the water. Learning to swim is probably a good idea as Miss Elizabeth is quite fearless and sees no wrong in jumping into any body of water on her own.
Thursday, July 10, 2008
Elizabeth has a total shoe fetish she loves shopping for shoes. She always goes for the pretty, dainty shoes and this year is desperate for a pair of flip flops. For any other mother of a little girl summer is seen as a time for sandals and cute flip flops. For me it another reminder that I won't see Elizabeth running in a sundress with sandals. In hopes to find a summer pair of shoes for Elizabeth we head off to the shoe store. As soon as we get there Elizabeth is eying a pair of flip flops and and ladybug rain boots (neither work with AFO's). I find a couple of pairs of sandals/mary-janes and begin to try to fit Elizabeth's AFO's (ankle foot orthotics) in them, pair after pair is rejected as they don't fit and so we go to runners again. While trying to find a pair of shoes a family in the store begin staring and I hear the kids ask 'what is wrong with her?', of course the kids are learning from Mom because she has her eyes fixated on Elizabeth's braces. I try to ignore the kids but they get more persistent with their questions so I politely explain that Elizabeth is not as strong as other kids and her braces help her to walk. I can't blame the kids for their curiosity kids are kids and they need the right information but adults are adults and somewhere I am sure they have been taught that staring is rude.
Once in a pink pair of New Balance runners Elizabeth exclaimed 'Momma they work, they work I can walk!'. The mother pipes up and says 'God bless her what a sweet soul'. It takes all my strength not to tell her 'yes God bless my daughter's sweet soul. Are you and your children finished staring yet?'.
Wednesday, July 02, 2008
Another crazy busy weekend. It was Canada Day on Tuesday so we had an extra long weekend from Friday until Tuesday. Elizabeth needed to go to Sick Kids Hospital for her hearing check and since Mommy was at work Daddy took her and they stopped off at the Royal Ontario Museum. Elizabeth loved the dinosaur exhibit and the bat cave. She couldn't believe how big the dinosaurs were. Her hearing test was her best this time which is great because the last one was quite poor. The audiologist is going to try to find us someone who specializes in Brain Injury as she feels that her articulation problems may be due to Ataxia and not hearing loss. Elizabeth has an amazing vocabulary but it difficult for others to understand her.
We also were finally able to go up to my parents cottage, Elizabeth was so excited to be there. We went swimming, played at the beach, she went kayaking with Grandpa, canoing with Ivan and I, played at the park and went fishing. She loved to fish and caught the most fish. She loved to reel in her line and look for fishes. We had a small crisis when Mommy dropped the camera into the lake but it dried up and is still working. Elizabeth and my sister also enjoyed watching movies together and Elizabeth saw Beauty and the Beast for the first time.
When we got home Elizabeth went swimming in her new pool. With water wings on she really is trying to swim and loves the water. The only thing with her pool when she is in we need to be in as it is very deep and she falls quite a bit. Our apologies to the neighbors for having to see us in our swimsuits in her pool.
Lastly we went to see the fireworks at the lake for Canada day. We decided to ride our bikes there as parking is a bit crazy. Elizabeth loves the bike trailer and it is a great workout for her parents. She loved the fireworks and fell asleep on the way home in her bike.
Have I said how much we love summer?