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.

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.

Therapeutic Riding

Elizabeth has started Therapeutic Riding and is really enjoying it. Riding will help Elizabeth gain strength in her abdomen as her tone is quite low there. While riding she has to reach to pick up objects and also has to ride with her arms up in the air. The riding coach really thinks that Elizabeth will be able to gain strength in her core from riding. Right now it is pretty difficult for her and she sways and slumps but she tries hard. She has already asked when she can start to gallop and when she can get some spurs for her boots.

Who plays with dolls?

Not Elizabeth, she is now a proud owner of a remote control excavator. Elizabeth definitely is not the typical girl and really has a hard time understanding why one would play with dolls. She prefers her Geo-Track train set, Lightening McQueen and now her excavator. She has on occasion pushed Lighting around in her doll stroller but that is as far as she will go. As we refuse to push her around on her airplane she thought maybe by hooking up her excavator she could pull herself around the house. Pretty smart girl, she may take after her father and follow his footsteps in Engineering.

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.