Huh????

That is all I can say today after our appointment with her Orthopedic Surgeon. I was looking forward to seeing her as we are concerned about Elizabeth's knees hyperextending and causing her pain at night. We have tried her new chrevron splints all summer and have gotten nowhere with them as they cause her to be even more unstable. These are the concerns I wanted to talk about today and instead I get the 'look' as she sits down to talk to me about Elizabeth. She begins 'it is about time we start talking about wheelchairs now and Elizabeth can really benefit from an electric wheelchair and you should start looking into the options now. Elizabeth needs to keep up with her peers and an electric wheelchair will give her freedom'. She has seen Elizabeth many times and sees her walk but yet she feels it is time to start looking HUH!
I really don't think we are in denial about Elizabeth and her capabilities but to have her in a wheelchair when she can walk is a bit mind boggling to me. She mentioned school and her safety and I know that there will be questions and concerns but to place her in a wheelchair for convience is not right. We know and have talked with her therapists that she will need a special needs stroller for distances and that we can deal with but an electric wheelchair and a wheelchair van are not really options we have thought about. This just confirms any doubts I had about taking her away for Medek as maybe it can help her independence and freedom. Another wasted morning where we could have been playing at the park and having fun and not have to get ripped off for hospital parking.

What do you say?

What do you say to people who are ignorant to all that is around them? To people who are well meaning but just don't know how to say the right thing or really shouldn't say anything at all. Do you tell them to mind their own business or give them a piece of your mind? Do you ignore them? Do you use it as an opportunity to teach them about disabilities?

Often these moments I am thrown so off guard by people I say nothing at all. Elizabeth is getting bigger and her swaying walk is more obvious to others and we have had some mind blowing comments and questions that have left me speechless and often in tears.
What do you say to a person who asks me if I know there is something wrong with my child's legs? What do you say to the woman screaming at me because we have used our handicapped pass to park in a closer spot? How do you react to someone joking that my daughter is drunk? How do you deal with a person who is talking to my daughter like she does not understand a spoken word?

I would like to educate others about disability and all that Elizabeth has overcome but sometimes I just want to enjoy our outings and try to keep things as 'normal' as they can be. Sometimes I would like to tell them where to go and that it is none of their business.

We are booked!

We are now officially booked to take Elizabeth for Medek. It is a trip that makes Disney look truly cheap but we hope it will pay off. We are booked for 12 days of twice daily sessions with Ramon Cuevas. We have done Medek in the past with a close colleague of his and do continue with the exercises at home. We are hoping that spending time with Ramon will teach us more exercises to do with Elizabeth and will give her a bit more stability with her walking. Elizabeth's walking has greatly improved and she is now beginning to step onto raised surfaces and is falling less but we have to be continuously at her side ready to catch her. We know that Elizabeth's walking will never be the same as her peers and that Ramon cannot cure her but we are hopeful he can help.

Elizabeth is now old enough to be in kindergarten but for many reason we are holding her back. Her safety in school is a big concern for me and I fear that once in school they will demand she use a walker for safety. A walker is not a huge deal but she chose to walk independently and I want to honour it. I have horrifying visions of her on the playground, being knocked over and breaking something and I know chances are it will happen, a change in wind is enough to tip her over. I know that the assistants will not stay by her side in the playground and she will be encouraged to play away from all the kids to avoid injury. I know this as I visit many schools through work and see it all the time.

We have been warned and discouraged by some not to do this type of therapy but we are willing to give it a try. We have met Ramon and he is kind and gentle with the children, Elizabeth immediately took to him and wanted to do more work on his boxes. Just mentioning this therapy to some of Elizabeth's Dr's would spark a very heated discussion but we know Elizabeth and if it is too much for her we will stop. Elizabeth's emotional state is more important to us than her mobility. We will spend our time not in therapy doing as many fun things that we can come up with so she will look back at this as a fun time as well as hard work.

To see a video of Ramon click here.

Good-Bye Summer

Sadly summer is over and as usual it flew by. It is time for us to get back to the grindstone and get on track with all her therapy appointments and her ever growing list of goals we are to be working on at home. I really need to find a way to organize our days to get everything in (oral motor, proprioceptive exercises every 90 minutes for 10 minutes, sensory, AVT, fine motor, gross motor and the list goes on). Summer was a great way to escape our homework and do lots of fun things and keep her active outside. This summer we had many day trips (Marineland, African Lion Safari, waterparks) and of course stay at Grandma's trailer and enjoy the pool, beach and campfires.
This summer Elizabeth wowed us with some new achievements; maintaining a sitting position going down on the slide (she used to fall and bang her head), swimming in the pool with her water wings on, running though a sprinkler independently (I still chase her ready to catch), pedalling her bike for 4-5 feet, removing her AFO's, potty training (we are so proud), drawing recognizable pictures and climbing the stairs using a handrail.
The one thing we do look forward to in the fall is apple picking and Halloween. Elizabeth has already chosen her costume and talks everyday about going to the Boo barn (children's haunted barn). She also could not wait for her preschool to begin so she get back and see 'her kids' as she calls them.

Good-Bye Gymbo

It was a sad day at Gymboree. We went to our weekly session at Gymboree and found out it was closing. We have been going to Gymboree since Elizabeth was 1 year. I signed her up for Gymboree when we started all Elizabeth's therapy, I wanted a place for her to go where she could have fun. Gymboree has been an amazing experience for us she has had so much fun and at the same time is working on so many therapy goals through play. Her gymboree teacher has been so supportive, helpful and really seems to have a softspot for Elizabeth. From bubbles, maraca's, parachutes, climbers, slides, dancing and Gymbo the clown we have had a blast. As I didn't know this was our last visit I didn't bring my camera so I have left a few older pictures of our days at Gymboree. Thank you Gymboree for everything.

An official BIG girl

Yes Elizabeth is an official BIG girl now. She has moved into a big girl bed in her new room. She had chosen the colour blue herself and is quite happy that her room is 'Dinoco Blue' (a car from the Car movie). We all love her big girl bed as it is great for cuddling and having an occasional nap (Daddy's favorite).
Her second momentous milestone is big girl underwear. She is a bit let down as Cars do not make girls underwear, she really wants Lightening McQueen underwear. After 4months of trying she is now dry during the day. She does not let us know that she has to go which for her is funny because she is so verbal but when she is taken regularly she is dry. As for poops the code phrase is 'Mommy I am cold I need a sweater' she has not associated the goosebumps with needing to go to the toilet but when we hear the phrase we grab and run (I have ran blocks) and she is usually successful. Her rewards now are receiving money for her piggy bank to buy a toy. A dry day is a 'money day' as she calls it, she is now saving her money for a remote control tarantula which she saw at Toys R Us. I am not looking forward to the day when she brings it home as it really is a bit creepy.
She really is turning into a girl, it is saddening but also lots of fun.

Just like Mom

Growing up I was always warned to 'just wait and that one day I will have a child just like me'. I have heard over and over again the stories of how no one wanted to take me out when I was little because I was bound to say something that would have my mother turning every shade of red. Elizabeth is filling my shoes quite well and has us all on the edge when we are out as she is quite quick to notice others. Some of her recent observations have been 'Mama that man/women has a baby in his tummy', 'You are squishy' (to my great Aunt), 'Mama you are all crinkly' and to one of her therapists 'My Daddy has bad manners'. Her most famous observations are telling genders what genitalia they possess. In some instances I have been thankful that people do not understand her all the time but as she is following my footsteps she persists and gets louder until acknowledged. We now know 'the look' and are finding creative ways to distract her when we know she has noticed something.

It took awhile but...

Elizabeth has mastered how to ride a ride-on toy. We are about 2 1/2 years behind but she has finally figured it out. When Elizabeth first started physiotherapy their first suggestion was to get her on a ride-on toy as it was a precursor to walking. We bought ride-on after ride-on thinking that the fault was the style/size but she could never figure out how to move so it become more of an exercise for us as we pushed her. Elizabeth is now happily riding around the house on her airplane with propeller and music at full throttle.
Check out her footwear, Elizabeth scored a pair of jelly shoes from 'Old Lady' (Old Navy) and she loves them. I love how I can see her dainty little feet, they are not outside shoes due to her instability but she loves to wear them around the house.

More Opinions

In my panic from the last Neurologist's appointment I begged for an appointment to see her other Neurologist to discuss the speculations of a neuro-degenerative disorder. We met with Dr. T and thankfully he had received some of her latest bloodwork and her MRI results. He reviewed the MRI and did notice some small changes (small brain atrophy and enlarged ventricles). These changes still do not account for her Ataxic symptoms as they are linked with other types of CP. He feels very strongly that this is 100% related to her prematurity and it is not a degenerative disorder. Dr. T and another Pediatrician watched her walk and could not believe how imbalanced she is, she was walking her normal wobbly way and they were jumping to catch her as they thought she would fall, I could hear DR. T. say 'oh I didn't know she was that Ataxic'. Both Dr's feel strongly that she has Choreo-Athetoid Ataxic Cerebral Palsy. They feel that the movements in her arm are athetoid as they flail and fling uncontrollably when she walks.
We had a long conversation of further testing we could do to determine the cause and to rule out other possibilities but all require painful procedures that we are not willing to put her through. After the scary possibilities we are happy to have Elizabeth as she is happy and wobbly. I will talk with her Developmental Pediatrician and if she agrees we will take Ataxia and say good-bye to all the testing.

Marineland

The weather cooperated and we were able to meet up with Shannon, Brian and the girls at Marineland. Elizabeth was so excited to see her friends and Marineland on the same day. Every time the commercial for Marineland comes on at home Elizabeth screams for me to come and watch with her. Elizabeth loved the rides, she was a bit let down as she could only go only the little rides and not the big roller coasters, she really is a daredevil. She loved feeding the beluga whales, deer and bears. The beluga's enjoyed fish, the deer loved ice cream cones and the bears expired corn pops (courtesy of Marineland and our wallets). Elizabeth loved the dolphin show and was amazed by the killer whales. We didn't get home until after bedtime and all the girls were great despite no naps.