Happy Canada Day

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?

Backseat Driver

Elizabeth is becoming a quite the backseat driver. She loves giving directions and recognizes familar routes, she is often heard from the backseat yelling 'No Momma you need to go left/right'. When Daddy is driving she constantly yells 'Daddy slow down, you are going to fast', this might have come from me as I frequently scold Ivan for his speedy ways. While looking for our friend in the parking lot the other day Elizabeth pipes up 'Momma you need to turn on the GPS'. She of course gives her music requests throughout the drive and always wants me to 'turn it up LOUD'. She is becoming quite the backseat dancer and loves to sing to Madonna and JT.
MRI update Elizabeth is back to herself now, she is still pretty wobbly but after good night sleep she was up and ready to go. We were pretty concerned that night as she had a hard time keeping her head up but after sleeping it off she was fine.

The wait is over

Well the 11 month wait is over Elizabeth finally had her MRI. We were so panicked that something would go wrong with her getting sick before or the sedation not working and she would be swinging from the rafters in the MRI suite. I have laid awake at night thinking of all the possibilities that could go wrong and even had a back up plan at another hospital if things did not go well. The sedation worked well she was asleep in 10 minutes, she really got upset about the needle to her leg to sedate her but was forgiving minutes later. She woke up right after and was quick to demand drink, t.v., books, food and snack. The meds have given her a voracious appetite. She has been telling me she is hungry and wants more food which for her is beyond rare. Our only concern that even 12hrs later she still cannot sit unsupported and cannot be left alone as she cannot get around without being carried. She was so tired she was asleep by 7:00. Hopefully tomorrow she will be back to herself but I am thinking our day will include a trip to the Pediatrician.

Move over Lightening

Yes it is true Elizabeth's Lightening McQueen car is now competing for her attention. Rocket from The Little Einsteins is now at close second for Elizabeth's favourite toy. Elizabeth since seeing the movie Cars a year ago is obsessed with anything with Lightening McQueen on it. Much to her dismay Mommy refused to buy her Lightening McQueen crocs when they came out but did settle for a Lightening Jibitz instead. She wears Cars pajama's and pull-up's and envies all the boys with their Cars clothing and backpacks. She has a large selection of Cars toys, pillow's and books. She most often plays with her talking Lightening and loves to bang his nose into objects (or parents) and loves to hear him yell 'ouch'. She spends hours racing her cars down a speedway we have made and also enjoys pushing Lightening around in her stroller (no dolls, just cars). But since Rocket has come into the picture Lightening has been in the sidelines and now she plays games with the characters from The Little Einsteins and seems to have a little crush on Leo. She watches Little Einsteins faithfully each night, squealing throughout the show and ensures that one of her parents is watching it as passionately as she is.

Celebrations

We have been busy this past week. Birthdays galore and of course Father's Day. The first birthday party was for Ashton who is now 3 years old. Elizabeth had a really good time at his party, she loved playing with all his toys. Ashton is the sweetest little boy, he and his family have been through so much and through everything he continues to have smiles that melt your heart. Next was Grandma's 60th birthday party. Elizabeth was so excited about Grandma's party and enjoyed telling Grandma she was 'old'. She definitely is not too old as she has lots of energy to keep up to Elizabeth and all her antics while I am at work. Olivia and Avery's birthday was next and all the kids enjoyed splashing in their pool and slipping down the wet n' wild. The girls also turned 3 and were so cute working together to get their mountain of presents open. Last was Father's Day, Elizabeth and I made Daddy a stepping stone for the garden. Elizabeth was also able to keep our project a secret until today which was great as she most often in her excitement spills the beans.

We really do hate...

BARF. We hate barf and all that it entails. No Elizabeth does have the stomach flu. We are still dealing with her weekly vomits spells and even though they are not as frequent it is still hard to deal with. It is like living with a mini volcano you never know when (or where) she will erupt and spew forth. There are so many variables to her vomiting that it can be hard to pinpoint what has caused it but we can still narrow it down to crying, swallowing food whole, reflux, anxiety, allergies and poor oral-motor coordination.
Last week was one of the scary moments that has lead us to not traveling long distances without another adult. Elizabeth had another huge choking spell on the way home from Toronto on a very busy stretch of highway. I noticed her gagging in my rearview and by the time I crossed 2 lanes to pull over with my hazards on Elizabeth had choked until she vomited all over the car. As there was no side lanes I had stopped a full lane of traffic on the highway to get Elizabeth out of her car seat whack her on the back and try to dispose of as much barf as I could so I get her back in the car. Thanks to the MTO vehicle that saw my difficulty and he pulled behind me and left his lights flashing until I sorted her out. Of course it was a day where heat and humidity were high and the next 2 hrs in the car was difficult to tolerate as the smell was overpowering. Despite thorough cleaning I cannot get the smell out of my car.
We have to get back to some more oral-motor work as we have been slacking here at home and go back to her reminders to chew as she is back to swallowing foods whole. We also have upped her stomach meds as she has been a bit more gaggy/barfy lately. On a good note we saw her Pediatrician today and she has gained 3lbs in 6mths YEAH, she is even a bit squishy in areas.

Medek

We had the opportunity of meeting and working with Ramone Cuevas at his recent Cuevas Medek Exercises certification course for therapists. Ramone is an amazing man who has founded CME, his work that he has done for children and families in helping their children to walk is amazing. Elizabeth's private PT was obtaining her certification and asked if we could come along to learn from Ramone. It was an amazing experience Ramone is gentle and Elizabeth worked well with him. Elizabeth would get upset as she had to wait her turn to work with him, she really enjoyed it and was proud when she would accomplish a task. Ramone even took the time to teach her PT exercises that would help Elizabeth. We have some of the boxes at home that he uses so I am going to try the new exercises at home as well. Elizabeth had done a year of Medek with a great PT in the past but unfortunately we could no longer attend as her PT moved back to Toronto. I don't think I will ever forgive myself for not staying with CME as Elizabeth gets so much out of it and it really helps with her balance. Once again we could not justify the long car ride for an hour of therapy. People from all over the world travel to have Ramone work with their children in his center in Chili and he comes to Canada once a year so meeting him was an honor.

A busy week-end

Our first long weekend to start off the summer was quite a cold weekend but we had lots of fun. Mommy and Daddy had a wedding out of town and left Elizabeth at home with her worker Erin. This is only the second time we have left her overnight and she had a blast. We feel so at ease leaving her with Erin as she loves Elizabeth and they have so much fun together. Erin and Elizabeth went to the park, they had lots of junk food and Erin took her to an 'underground' (indoor) playground as Elizabeth called it. Mommy and Daddy had a great time at the wedding (thank you Karen) and even got to go Antique shopping and bought a beautiful shelf to start a new big girl room for Elizabeth. The next night we met Olivia and Avery at the horse races for family night. The girls had a blast; there was a petting farm, a bouncy castle, craft table, face painting and fireworks. The Daddy's had a good time betting on horses as well. Elizabeth tried popcorn for the first time and loved it, I always thought she would choke so I never gave it to her. Elizabeth and Ivan ended the long weekend with a nap together in our bed (they were exhausted).

No more Follow-Up

Another whirlwind day where nothing got accomplished at home and Elizabeth spent her day being dragged from one appointment to another. Her first appointment was to review her AFO's as we are still concerned with her Rt. knee hyper-extending and the Orthopedic surgeon wants to her try a newer splint. I discussed this with the Orthotist and his student and they agreed to try a new splint. As they have not done this before it will be a trial and it will be free of charge for us (her splints run $2800). They will use it as a case study if it works which is fine by us.
Our last appointment was the Growth and Development Clinic and as she is 3 it was our last follow-up. They completed the Bayley's scale on her and she did very well, I was so proud to see her answering the questions and following directions. She scored quite well with her only major deficits in gross motor. We met with the Dr. who also specializes in CP and I had lots of questions for him. He said that yes Elizabeth's does have Ataxia (the first time a Dr. admits it) and that it probably has nothing to do with her prematurity as it is quite rare to have Ataxia. He questioned that it may be a genetic condition but cannot speculate until an MRI is done (we are still waiting it has been 10mths now, arghh). We hope this is not the case as we really want another baby and Elizabeth deserves to have a sibling as well. He did mention he also sees it in her hands as well as her arms and hands do shake/tremor and this is something we have noticed lately as well. He was very pleased with her cognition and language but was concerned with her articulation and questioned why we are not using hearing aids. It is so hard to figure out is her articulation related to Ataxia, poor oral motor tone and hearing loss, she is monitored closely so it is not a big concern for us.
Her last preemie stats are wt. 26lb and height 82.8cm.
Elizabeth was so good only a couple hairy moments from being cooped up too long. She also had a poop on the potty today, we are so proud.
Overall a good day; free splints, a diagnosis and a poop on the potty. A day at the park would have been preferred but we will take what we got today.

What she learned at Pre-School

When Elizabeth came home from school she showed me what a little boy in her class has taught her and she preceded to make a the face above. Elizabeth has thoroughly enjoyed her first year at pre-school and has learned so much and really enjoys being with her friends. As usual most of her favorite buddies are boys but she is spending more time with an energetic little girl. She still recieves support from her Resource Teacher half the time and recently told her to 'go away' as she is on her to make sure she pays attention and completes tasks. Next year she will be going into the 3-4 year class which will be good for her as she needs to learn from older peers and as her teacher says she needs to be around older kids who have more language as the children are younger in her class and cannot keep up with her conversations. I was really happy to hear that as I was concerned that socially she is falling behind. She is also showing a real independent streak at school and does not want to sit in her special chair and wants to do most tasks on her own. She is also walking down the stairs independently with the railings for snack time. Next week she will be going on her first field trip and on a yellow school bus she is so excited.