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.

Free Spirited, impish and tenacious are words I hear often to describe Elizabeth. I agree these are words that best describe her. I know once she enters school the phone calls from the principals office will begin. She has a will of her own that is unstoppable at times. She is not naughty or aggressive and does follow what I ask of her (most often) but she is impish and free spirited. She frequently teases her best friend Owen by poking him in the ear or tries to take his toys, when she does not even want them. Her most recent letter home stated because she was not listening her toy had to be taken away by her teacher and when I discussed this with her why she needs to listen she replied 'that's okay I will steal it back on Monday'. Time-out as infrequent as it is here is often not a punishment as she sings away on the step, once she can go she promises me 'don't worry Mom I promise I won't do that again'. She really is an unstoppable force at times and boy can it be exhausting.

In light to our recent concerns with Elizabeth's socialization I am trying to ensure that we are also engaging in appropriate play. We spend so much time in therapy making sure she meets all her goals that we forget how much she learns from just playing. Elizabeth by far prefers to play smash up cars and trains so I am trying to encourage her to play with dolls or other domesticated activities. This week we have been playing shopping we arrange our store with clothes, candy, food and toys and get the cash register ready. Elizabeth while playing clothing store dressed up and of course her outfit was not complete without her Cars slippers. Once she had her wand she wanted to play sword fights because that is ' what fairies do'.

Elizabeth had a great Halloween. I really think Halloween is more exciting to her than Christmas. She had decorated the house inside and out, completed every Halloween craft imaginable, made her closet into a haunted house and baked Halloween treats. Her butterfly costume was a runner up to a bat costume she was eying, but the butterfly wings made the deal. She also dressed up as a cheerleader for school as the butterfly costume was too hot. She really liked the cheerleader costume as she thinks she is a cheerleader from High School Musical.

Hope everyone had a Happy Halloween!

The good the bad and the ugly.

Things have been busy around here lots of appointments and tons more to come. Just before we went to Montreal Elizabeth had her second MRI. The second MRI was done under a general anesthetic and as it was done at the children's hospital they were able to see more. The MRI showed cerebellum atrophy which correlates to her Ataxic symptoms. Her Developmental Pediatrician is fairly sure with the new results that Elizabeth has Ataxic Cerebral Palsy. Her diagnosis does not change what we are currently doing but may help with getting help when she begins school. Even with the new results Elizabeth still has to be seen by Genetics and have an EMG done to rule out other diagnosis'. The good news Elizabeth is over 30lbs and in the 25% for weight which is great. The bad is Elizabeth's reflux has not been getting better and we are still needing to increase her meds therefore we will see Gastroenterologist to look into her reflux again. Another bad Elizabeth also had her Echo done and she still continues to have an irregular heart rate so she needs to see a Cardiologist as well. To add to her appointments and horrible tests Elizabeth needs to have a VCUG and a renal ultrasound as she is still having bladder infections and is complains of back pain. The ugliest is the Dr's concern with Elizabeth's lack of eye contact and some odd behavior's she is having. We are going to work on eye contact and see her Developmental Pediatrician in 6 mths and hopefully we won't be adding to her list of diagnosis'.
Sometimes I think he time we spent in NICU was a easy compared to everything that we go through as a family now, it should be getting better now not worse. It seems like she is never out of the woods.

We are home!

The time has flown by only the last few days Elizabeth started to become homesick. We are so amazed at how hard she worked with Ramon, she really made us proud with her determination. The last few days of therapy were videotaped and a home program was made for us to do at home. Ramon recommends 30 minutes a day of the exercises, it seems like such a small price to pay for being more independent. Dad has his work cut out as he needs to make all the boxes, planks and boards for her exercises and he will be doing most of the exercises with her while I spot. The only downside is that 2 of us need to be there during her exercise in order to ensure her safety and most of the exercises require strength that I do not have.
We still see her swaying and unsteadiness with walking but she is falling less and can step on or over obstacles without holding on to our hands. She walked independently up a small flight of stairs yesterday and that is something I would not have even imagined her achieving for at least a year. We also noticed less hyperextension of her knees as well and she now bends it when she walks.
It really was an honor to have Ramon work with Elizabeth. Ramon is such a humble man who is so inspired by children with disabilities, he believes in them and their potential. Therapists from USA and Canada took time off and flew in just to watch him practice. He has had many criticisms about his methods but I do believe without his boxes, planks and as he says 'ooky whooky' exercises Elizabeth would not be doing what she is today.
Once she succeeds with the current program we will meet with Ramon or his colleague again to develop the next program, between that time we will have to look into fundraising as this is an expensive venture. Any ideas?

Fun in Montreal

We have been enjoying our time here in Montreal there is so much to do and explore and the weather has been great. We have been repeat visitors at the Biodome, the Pumpkinfest at the Botanical Gardens and an amazing park where the squirrels will eat right from your hand. The shopping here is tantalizing, the stores are mind boggling and require much self control on Mommy' part to keep the spending to a minimum. Daddy came early and surprised us for Thanksgiving it is nice to have him here, Elizabeth and I really missed him.

Update

Elizabeth after a weekend break is back to her twice daily Medek sessions with Ramon. She is wowing us all with her determination. She really enjoys the challenges and asks to go again. She eagerly waits for the next exercises as Ramon configures the boxes and planks to challenge her more, she usually says 'oohh this will be tricky'. She was able to walk down the planks unassisted and is needing less support from Ramon.
I think the work is helping with her balance and teaching her to slow down on obstacles. When at the park today Elizabeth normally grabs my hand to go down to the swings but today she just walked down on her own. She did spend a good part of the weekend in her stroller as her legs were hurting her from all this exercise.
I think Ramon has taken a liking to her, he puts up with all her teasing and poking at him. Elizabeth is enjoying her spare time checking out shops, going to the movies and going to animal exhibits. Mom is getting a huge workout from pushing the stroller and running with Elizabeth to her sessions as we are always a bit late.

We are here!

We have arrived and started CME with Ramon. We have settled in the hotel and I am slowly getting used to the erratic driving and thanks to the GPS we have not got completely lost only rerouted due to the endless one way streets.

We are slowly getting a routine sorted out for our day she has twice daily sessions with Ramon. She really seems to like CME and loves the challenges it gives her. She does get upset with some the exercises as she is afraid to fall on the higher boxes. She has walked/skated on balls, climbed imaginary stairs, walked across thin upright planks and is learning to jump with her knees bent. By the end of the session Ramon is sweating as it is just as tiring for him as it is for her.

In the picture above she is running on the edge of the block which she loved. At times she was laughing so hard she would fall over.

We are trying to fill our days with fun activities and rest. We visited the Insect Museum and she loved seeing all the bugs. She loved the tarantula's and Mom was not too sure.