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.

Jumping

Elizabeth is desperate to jump. She frequently is in awe of other children jumping and asks me why she cannot jump too. At her gymnastics it is somethings that we struggle with as a lot of the exercises involve jumping. She has a trampoline at home and she recently has began to jump on her trampoline while she is holding on to the bar. To see if we can help her with jumping independently we are using Ramon's philosophy 'train the brain' and using his CME Medek jumping exercise to teach her how to jump. The exercise mimics what her body would do if she is to jump and with enough repetitions she should have the skill mastered (I think it is 1500). The biggest obstacle for her being able to jump is her uncoordination which sends her limbs flying in all directions when she tries to jump, the CME exercises puts her body through the motions of jumping. She has been working hard with Dad at her jumping and today at gymnastics she jumped a couple of times and actually got her feet off the floor for a brief second. Her gymnastics coach and I were ecstatic and Elizabeth was so proud of herself.

CME Medek

Recently our local news ran a story about CME and the work of Ramon Cuevas. Elizabeth's first Physiotherapist Simona is also featured in the clip, Elizabeth took her very first steps with Simona.

We feel very strongly that CME Medek has enabled Elizabeth to walk independently, I am fairly certain that without CME Elizabeth would be using a walker. A couple of weeks ago we saw Elizabeth's Orthopedic Dr (the one who told me it was time to get Elizabeth an electric wheelchair to keep up with her friends) and she could not believe the progress Elizabeth has made in the past year HA HA.

Presently we are not doing CME at home as Elizabeth is walking quite well but we are ready for the next growth spurt to begin again to give her stability.

Checkout this clip.

http://news.globaltv.com/programs/16x9/Walking+Tall/1980901/story.html#

Done!!!

We have officially finished our Toronto block with Ramon and I think we are all relieved that it is done. Elizabeth once again was so good, she works so hard and never complains. While she is great during her therapy we can see the stress it causes on her as her anxious behaviors have crept up again; our 2 markers are hands in her mouth and her toilet paper fetish which both have have reappeared. We have lots of pictures and videos (which I need Daddy to post) but as we need pictures of the block configurations there are few of Elizabeth at work. Now we must sit down print the pictures and add them to her home program binder. Ivan and I have noticed some changes in her walking with seeing Ramon, she picks her knees up a bit more and can walk up the step at her school on her own. Once again it really is an honour to have Elizabeth work with Ramon, he truly is a remarkable and dedicated man.
Elizabeth for all her hard work enjoyed a lunch a Rainforest Cafe and a couple of new toys, I think she could have got a new car out of if she tried as were so proud of her hard work. We even this week celebrated a full day at home which is a milestone as I don't think we have had a full day at home for months lately. We tributed our day with Elizabeth's favorites; making Popsicles, playing in her sandbox, playing in the water and having a backyard picnic.

Elizabeth's Day of Colour

We are having our first fundraising day for Elizabeth. My cousin who is an extremely talented Designer has volunteered her time for Elizabeth. We have secured a venue where she will meet interested parties to answer design/colour scheme questions for your home. Wish us luck for this weekend we are hoping to get enough appointments to make use of my cousins time.

All the funds raised will go towards CME therapy sessions for Elizabeth.

An Update

I will warn you now this will be a long post but we have been pretty busy lately.
I think the best place to start is her therapeutic riding; she is doing very well and now rides a pony which is better for size. She does not fatigue as much now and can ride for longer periods holding her arms up, she still needs trunk support from 2 side walkers but she is doing well enough that she will soon learn to trot. As the weather is getting better she will be riding outside which is a nice change. Her favorite part of the morning at the barn is chasing the cats.
She is growing like a weed, she now weighs 33lbs and is 95cm. Growth is great but it is hard on her physically, she seems to grow overnight and it takes her 2-3 weeks to adjust to her height and she regresses with walking, for awhile she would not walk independently and cried if I let her hand go. Today was a good day she was more independent and she even stepped up a small step independently. Growth means new AFO's so she was casted today for a new pair, she requested ladybugs this time.
Her Developmental Paediatrician was happy with her and as Elizabeth looked at her and engaged with her the thoughts of Aspergers are now put aside (YEAH). As there is still no clear diagnosis she is referring us to see a Metabolic Doctor at Sick Kids, she is still concerned with Elizabeth's regression with growth and illness and wants a full work-up to rule out any other condition.
We saw a Genetics Doctor who was really nice and genuinely concerned. Ivan and I had a laugh as before we met her Ivan said if she asks if we are related I will pop her in the nose and of course the first question we got was 'Are you 2 related in any capacity?'. I know we both have big eyes but yuck, this question comes up with every new specialist. She has some thoughts and does not think CP. She wants to talk with her other specialists before she begins testing which was nice as she wants to avoid additional bloodwork.
Levo-Dopa medication was not for Elizabeth, she cried inconsolably even in her sleep , she was even more unbalanced, she was gaggy and began her night twitching again. We finally weaned her off it and she is much happier and less wobbly.
She had another 12 lead ECG and a 24 holter monitor and now she will be seeing a Cardiologist to review the results. I should know by now not to look at the monitor when they are doing this but I did and I got freaked out when I read the results (short PR, short QT, arrhythmia and anterior ischemia). This can mean that her heart is still irregular and getting worse or it could be that it is how it reads a child's ECG and she is fine and I panicked for no reason.
Elizabeth is becoming quite the Mommy's helper she wants to help me do everything (laundry, setting the table, cooking, cleaning) and has earned many stickers on her chore chart which she trades in for a toy. She is quite the riot and comes up with the funniest things; 'Momma where is Ivan is he coming home tonight?', 'Momma you smell like rotten eggs' (morning breath) and we are still are working on her not telling everyone with a bigger belly that they have a baby in it.
She is doing great with her CME exercises with Ivan, she happily puts her shoes on and off they go. We will be seeing Ramon at the end of the month and we will be working a new home program. It is going to be pretty crazy when Ramon is here as is he is at least an hour away but we have some weekend appointments and we have planned our work schedules around her sessions.
By mid June we will be ready for a vacation.

Thoughts

Lately I am always wondering what do parents of 'normal' children do. It is a question that I am always wanting to know. I try to imagine what I would do differently if Elizabeth was not given all the challenges she faces. It is pretty accurate to say that the majority of Elizabeth's waking hours are spent on reaching her developmental goals. We do not spend all day drilling her and making her work but we do try to add all her goals into her daily life and through play. During the day there is no TV we do crafts, baking, obstacle courses, her Medek exercises, her AVT goals, play games, play with her toys, sensory activities and read. Along with this she is at physio, OT, gymnastics, riding, swimming and of course her endless Dr.'s appointments.
I watch the mothers at her gymnastics go upstairs together to watch their children as I stay with her class to help Elizabeth. I wonder what do they do at home with their children and what they talk about as a group? I don't begrudge the time we spend with Elizabeth as she is so much fun to be with and everything we do will help with her independence. I just can't help wondering how things would be different. Would I lay back and read a book while she was playing? Would Ivan and I have a different social circle and allow time for ourselves? Would we leave her with a babysitter? Would I still be full time at work? Would Elizabeth be in daycare full time? Would a cold be mere inconvenience, would I even worry about it? Would she have siblings?
What I do know is that with Elizabeth we never take a moment or milestone for granted, the simplicities of sitting in a chair, using a fork, chewing, climbing on the couch and her telling me I 'am the best momma womma there is' will never be missed they are cherished even more.