CME Medek

Elizabeth has just finished her daily sessions with Ramon Cuevas for her Medek Therapy. Ramon had some new tricks for and exercises for Elizabeth and she in the beginning soared though them. The first day she mocked his balance exercises and would dance on his wobbling boards, so he upped the ante and had her completing acts that I think only the gymnasts in Circ De'soliel could perform. Ramon continues to be patient with Elizabeth as she teases him and pokes at him and he seems to be really impressed with Elizabeth and how hard she works. It is still is unbelievable that she can perform highly challenging exercises with ease but her walking can be so unstable and erratic. It was a crazy long week and it is a lot for Elizabeth to be expected to perform and spend so much time cooped up in the car. We still have a couple more sessions but they are on weekends so this weeks 3-4 hr drive will be reduced to an hour each way and it is not at dinner time so no more eating junk food in the car and restaurants. We have already noticed Elizabeth is lifting her knees up when she walks and she has even stepped up some curbs and up the front step without holding on to someone. It seems like working with Ramon gives her additional confidence and allows her brain to handle obstacles naturally she does not have to stop and process what her body needs to do she can just do it.

He's back.

Nemo is back, it has been almost 2 weeks since Nemo was left behind at Great Wolf Lodge. After many phone calls Nemo was left on our doorstep by UPS when we got home tonight. Elizabeth had an emotional reunion with him it and took awhile to calm her down as she broke down as soon as she saw him. They are now both snuggled in her bed together. I am sure Nemo just like in the movie has a couple of stories to tell of his adventure home. He will soon be going on a new adventure in Mommy's washing machine as I am a bit grossed out that he was found in the hotel linen but at the present I cannot tear him away from her embrace as she sleeps. Welcome home Nemo.


Excitement.

Tears of joy.

Helping Out

She is such a great helper and boy does she love the mud. Happy Spring Gardening.

A Little Getaway

We had a great weekend and were able to get away from everything for a couple of days. With a group of friends (including Elizabeth's beloved boyfriend Owen) we went to Great Wolf Lodge in Niagara Falls. What a great place to go we all had so much fun and there was so much to do. Elizabeth loved the water park; she played in the fountains, relaxed in the lazy river, jumped the waves in the wave pool, went down water slides and swam for hours. The lodge was perfect for families from story time in the lodge, fireworks, an arcade and interactive animals. The kids were in awe of everything and had a great time together. Owen as usual could not be far from his 'Biz' as her calls her and the two spent every waking minute being together. Even all the adults had a great time, we got to go down the big water slides and had fun spending time together when the kids were passed out from all the fun.

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.

Happy Mother's Day

I hope everyone had a great Mother's Day. I had a lovely day which began with me being able to sleep in until 9:00, it was sinful. Elizabeth had made a beautiful card and a gift certificate for a manicure and pedicure was attached. I can't wait to get a pedicure my feet are needing some help prior to leaving the house in sandals. Daddy and Elizabeth even gave me some alone time while the two of them went to Home Depot in the afternoon.
During the week Elizabeth's pre-school had a Mother's Day tea and she presented me with a beautiful rendition of me on a wooden spoon. Her class also sang some songs for the Mom's and made a cake for us as well, it really was a special thing for her school to do.
I hope everyone had a good Mother's Day too.
Happy Mother's day to all you amazing and dedicated Mom's.

225

As usual around tax time Ivan and I sit down and calculate all the mileage expenses for Elizabeth's medical and therapy appointments. While calculating her out of town appointments I counted each appointment that Elizabeth attended last year and the grand total was 225 for the year 2008. It totally kills me that 225 times Elizabeth is dragged around to therapy, Dr's appointment's and diagnostic procedures. Some of these places we go are at least 2hrs of driving to get there and back. When Elizabeth gets up in the morning she asks 'mama are we having a busy day today?'. As I am working I often try to get her appointments in on the days I am off which leads 2-3 appointments in a day. I am so lucky to have my Mom take her to some of the local appointments and a current job that allows me to flex my time and work around Elizabeth's' schedule.
So many times we had others question Elizabeth's play and socialization and this 225 gives me an understanding, times where she should be playing and learning through play she is in the car, working with adults or being examined. There are days when I am exhausted after a 'busy day' as Elizabeth calls it and I remind myself that I get a break from this when I am work, Elizabeth lives it everyday. It still amazes me how through all this she is so happy and cheerful.