Merry Christmas

We hope everyone had a great Christmas. Elizabeth was so excited this year we woke at 6:00 with her squealing 'he was here, he really was here, Mom and Dad Santa was here' she was so excited that Santa had left her stocking on her bed full with treats.
Elizabeth had an interesting list of wants this year; she had a requested the Kota the ride-on triceratops, a remote control bat and a remote control tarantula. Santa was really taken aback by her requests and told her that was a 'strange list' while she posed with him for a picture. Santa did alter her requests and brought her a toy puppy whom she adores she spends every waking minute with him; she walks him, pats him and has even built him a doghouse. He was really great at keeping her occupied while we prepared dinner for all the family. What I love about her puppy is that he does not even pee unlike her cousins Baby Alive doll (Elizabeth is quite spooked by this doll, go figure loves tarantula's but afraid of Baby Alive) which peed through her diaper in minutes. Auntie Maria did fulfill the request for the remote control tarantula and Elizabeth takes great pleasure in chasing us around the house with it.
We are continuing with our tradition of Christmas Eve Mass, Elizabeth was so enthralled by the festivities at the church, she even answered all the questions about Mary, Joseph and Baby Jesus. She did have that look in her eyes in the church that leaves me on edge as she is quite mischievous but she limited her naughtiness to just poking at Grams while she sung.
Wishing you all a Merry Christmas.

Secret Santa

This is our second year of Secret Santa. I have joined the CP Moms group on Yahoo and have met (on-line) an amazing group of Mom's who are dedicated to improving the quality of life and the independence of our children with CP. It is a great place to learn and receive support from others who have the same concerns and worries that we have. It is with this group we have had our second Secret Santa gift exchange with Mom's from around the world. This year Elizabeth received Polly Pockets from her Secret Santa, she loves her Polly Pockets and I hope the Polly's are having fun driving around on her trains (look closely at picture). As Elizabeth has a liking to male gendered toys I never thought about Polly Pockets but she really enjoys them and they are great for fine motor skills. It is nice to see that as she is getting older she is playing with girly toys as well. Thank you Secret Santa and thank you to Ashton's Mom for once again organizing the exchange.

She's 4

I cannot believe it our little girl is now 4 years old. It is crazy 4 years ago we were faced with the thoughts she may never come home to now a little girl who this morning had to make sure her lipstick matched her sweater. She told me that she really does not want to be 4 and that she much rather would be 20, I screamed 'oh no you are growing up too fast already'. As we usually do we celebrated her birthday with multiple parties surrounded by family and friends. She wanted this year to celebrate her birthday at a local farm we often go to so we all braved the cold and rain and enjoyed wagon rides, tractor races, the chicken coop and crafts. Of course her birthday could not be complete without her best friend Owen by her side, he as usual carefully chose his best shirt to go and meet his beloved 'biz' for her birthday.
I was asked recently why do we always have a big party for her and the only reason I can think of is we are not just celebrating her birthday but her life and her achievements. Four years ago we would have never thought these days would ever happen and just talking to her and watching her grow is an amazing blessing.
Today was also Elizabeth's Christmas Open House at school and I loved watching her at school. She enjoys being with her classmates, she follows the lessons and is keeping up with her classmates quite well, I was so proud of her today.

Christmas is coming

Going to Christmas parties with her cousin Madison.

Our yearly tradition of going to the night Christmas parade with Owen, Olivia, Avery and Auntie Katy.

Building snowmen and eating her weight in snow.

Making Christmas ornaments.

Playing Hookie

Yes, today we are playing hookie. I called the hospital where Elizabeth was to go to for her VCUG to check her bladder and kidneys and told a fib that Elizabeth was sick. I have never done this before and feel quite bad for doing it but we think that Elizabeth has been thorugh enough procedures this year. Lately she has been held down screaming for one too many painful and scary procedure and I cannot bear the thought of holding her down while someone tries to catheterize her.

It won't be a total lazy day as she still has AV therapy, music therapy and physiotherapy but in between we will make Christmas cookies. Elizabeth loves baking and is becoming quite the Mommy' helper. I know I will have to face her Pediatrician in the New Year and hopefully she will forgive me (or maybe forget which is really being hopeful).

Boxes

A huge thank you to Daddy. He has spent days in the garage building the boxes, pegs, planks and pegs that we need to complete Elizabeth's Medek exercises. With the equipment he has made we are able to build endless obstacles that Ramon has recommended for her home program. Because of the time we spent with Ramon and the work we do at home Elizabeth has made some pretty amazing gains and most importantly is more happy and confident with her walking. We and her therapist's have noticed her arms are lower when she walks, she falls less, she is slower, she is starting to pick up her legs and bend her knees when she walks and she can handle uneven surfaces with less support. Her knee has begun to hyperextend again and we have started to Kinesiotape it but it is not causing her discomfort, it was great to see that the excercises Ramon had done with her really helped with her knee.
This is the first time when outside with Elizabeth we do not need to be beside her, I was able to rake the leaves with Elizabeth outside and was not worried about her falling, that is huge for her. She also has started to climb and now gets herself into more trouble as she climbs the couch and can push a chair around and climb up to reach what she desires. By the time Ramon comes back to Canada in the spring we will be ready for a new home program.

The new addition to our arsenal

We have for awhile been having concerns and difficulties with Elizabeth regarding over stimulation and sensory seeking. Going out to busy stores, being in a crowded room, eating in a restaurant and even visiting friends and family's homes has been more challenging. Elizabeth easily becomes overstimulated in these situations and becomes a child that we don't know. Elizabeth is a very good natured child who cooperates with most that we ask of her but in these situations she trashes her body throwing her head back, throws objects, squeals, yells, cannot stay still, hits and kicks. We have tried so many ways (weighted belt, deep pressure vest, busy toys, stories) to engage her in these situations but in the end exiting is the only way we can get her calm. It saddens us because she is not that child but there is something in these environments that causes her discomfort.
Elizabeth also has gone from avoiding textures to seeking stimuli; so much that she has been found making angels in the dirt, shredding toilet paper roll by roll, spilling her food or drink so she can feel it in her hands and emptying my plant pots. These can be 'typical' things to do but they became that she was unable to complete daily tasks without her fix as we call it.
We ended seeking help from a private Occupational Therapist who has given us some great ideas and has shown us the Wilbarger Technique of brushing. The brushing technique has really helped Elizabeth it calms her and enables to participate in activities/outings that are normally difficult for her. The protocol does require brushing and joint compressions every 90 minutes but we are only doing it in the morning and before a stressful situation. Her teacher has noticed the days we do and don't brush her as Elizabeth does not squeal and become overexcited when she is brushed. We also are continuing with her proprioceptive activities to enhance her body awareness, she loves the rough play and being flattened by her big PT ball.