Thoughts

Lately I am always wondering what do parents of 'normal' children do. It is a question that I am always wanting to know. I try to imagine what I would do differently if Elizabeth was not given all the challenges she faces. It is pretty accurate to say that the majority of Elizabeth's waking hours are spent on reaching her developmental goals. We do not spend all day drilling her and making her work but we do try to add all her goals into her daily life and through play. During the day there is no TV we do crafts, baking, obstacle courses, her Medek exercises, her AVT goals, play games, play with her toys, sensory activities and read. Along with this she is at physio, OT, gymnastics, riding, swimming and of course her endless Dr.'s appointments.
I watch the mothers at her gymnastics go upstairs together to watch their children as I stay with her class to help Elizabeth. I wonder what do they do at home with their children and what they talk about as a group? I don't begrudge the time we spend with Elizabeth as she is so much fun to be with and everything we do will help with her independence. I just can't help wondering how things would be different. Would I lay back and read a book while she was playing? Would Ivan and I have a different social circle and allow time for ourselves? Would we leave her with a babysitter? Would I still be full time at work? Would Elizabeth be in daycare full time? Would a cold be mere inconvenience, would I even worry about it? Would she have siblings?
What I do know is that with Elizabeth we never take a moment or milestone for granted, the simplicities of sitting in a chair, using a fork, chewing, climbing on the couch and her telling me I 'am the best momma womma there is' will never be missed they are cherished even more.

On A Whim

It began as a casual discussion and ended up with a fun filled vacation with my parents and my sister Katy. We spent a week in Orlando and had a blast visiting Disney's parks and hanging out at a really nice resort. It was a bit cooler but the weather was so much warmer than the miserable damp cold here at home.
Elizabeth had planned our itinerary before we left and Gram's and Auntie Katy were dragged to Dinoland at Animal Kingdom, to ride the clam shell and see Nemo at Epcot, to ride as many rides as we could at Magic Kingdom and visit her favourite characters (Lightening McQueen, Mator and the Einsteins) at Hollywood Studios. With a letter from Elizabeth's physiotherapist we were able obtain a wheelchair pass for her stroller and did not need to wait in the long lines (I highly recommend this). Being able to take her stroller in the line was so helpful there was no way Elizabeth can walk and stand for prolonged periods amongst so many people without falling and getting hurt. Having the pass makes me feel that for once Elizabeth gets a break and they made such a big deal of her and even gave her some extra time with her beloved character Leo from the Little Einsteins.
We enjoyed some time at the pool at the resort and Elizabeth loved swimming and playing in the sand. Mommy got a trip to Target which is my favorite store I love all the deals there, the kids clothes are so cute and totally cheap. All in all it was great vacation I think we tired my parents out and my sister was not a fan of walking but it made her day when she was pulled on the stage during the High School Musical play. Disney is such a magical place we loved every minute.

Arts and Crafts

I love doing crafts and Elizabeth shares that love with me. Crafts are such a fun way to learn and practice her fine motor skills. We have been working on her printing with her OT using the Hand writing without Tears program, it is a great program it really makes learning fun. Elizabeth is printing about 10 letters on her own and worked hard at signing all her Valentines cards. Her drawing is great, when she concentrates she can draw some pretty recognizable pictures most often her house, spiders and cats. Her cutting is going great she is controlling her scissors easier, she still has a slight tremor and twitch in her hand that makes some things difficult. Using her new love of the Veggie Tales we frequent this site for all sorts of craft ideas like Bob the Tomato above.

We love winter

We do really love winter. Yes it can be miserably cold, the shoveling is endless (beyond endless lately) and it takes a good 20 minutes before the car warms up. There are so many fun things to do in the snow. Elizabeth loves winter or maybe I should say the snow. She loves snow and is trying to eat her way to China in our snowbanks. The pebbles at the park that feed her sensory needs have been replaced by snow, mountains and mountains of snow. Elizabeth is now crawling in the snow and takes advantage of her low position to eat as much snow as she can (see above picture). It is nice as this is the first year she is mobile in the snow and it is great exercise for her. When we can convince Elizabeth to abstain from her feasting we are tobogganing. Elizabeth is a daredevil going down the steep hills on her own, this is really amazing because at the beginning of the season she was still not sitting on her own in a sled. Elizabeth is also learning how to skate, Daddy has built her a rink in the backyard and she is doing well with her walker wandering on the ice. This weekend has been quite warm and much of the snow has melted but I am sure more is to come as winter is halfway through and I will still be yelling 'Elizabeth only eat the white snow'.

Argh!!!

Once again things did turn out as expected. We visited Elizabeth's Neurologist with her new MRI results and was hoping for a final diagnosis of Ataxic Cerebral Palsy with her new results. It did not go as planned, he does not feel she has CP and is still wanting to rule out other genetic and degenerative conditions. He feels that the changes in her 2nd MRI may be as a result of a degenerative condition and has taken her MRI to many colleagues for their opinion. I don't think he believes me when I told him that Elizabeth is improving with her balance, we are amazed by her continuing progress he just sees a very smart but wobbly girl. He also wonders if Elizabeth's symptoms are dystonic (varying tone) instead of Ataxia but one of her diagnostic signs does not meet the criteria of CP; when he elicits a response in her foot her toes point down (CP points up). He also is looking into a cerebellum disorder such as Joubert syndrome and is still questioning Frederich's Ataxia (but the lab had lost her blood so we have to do again). He is quite concerned and wants to help us but cannot come to a conclusion so we wait again. We will be seeing a Motor Disorders Neurologist at Sick Kids, he feels this Dr. can be the only one to help us and maybe offer treatment. We are still waiting to see Genetics and maybe they can help to come to a conclusion, our biggest concern is that this can be passed on to other children.
Good news her EMG was okay so it rules out a neuropathy and we don't have to do it again. Having needles stuck in her leg with electricity going through was not a good experience for Elizabeth or Mom it was quite painful for her. She is again on a waitlist for another sedated MRI to ensure there are no new changes.
We would love everything to be okay for Elizabeth but the reality it is not and we can handle that. It's the constant what if's and waiting for a diagnosis part that is getting a bit long, drawn out and not fun. Elizabeth should be at home playing not being tested for everything under the sun.

Something New

Elizabeth is now able to sit on a big chair independently. This may seem like a small feat but for us it is huge. When we are out Elizabeth either sits in highchair or on our knee but now she can sit in her own chair and for short periods of time kneel on a chair to eat. Gone are the days of trying to pry her and her AFO's out of a highchair (the number of times I have had to ask a stranger to help is endless) and gone are the days of eating with one hand holding her up. Once again she wows us, way to go Elizabeth.

Decisions Decisions

Schooling. What to do, it constantly is on my mind on what we should do for Elizabeth. Elizabeth was eligible for JK this September but we did not enroll her. Elizabeth continues to go to her Nursery school 3 mornings a week and we are very happy with the school she is in, her classroom has 7 children which I love. With Elizabeth still in pre-school she continues to receive pre-school services at our Children's Center she receives OT, PT, AVT, Speech (for feeding) and a resource consultant for pre-school. Her therapy is direct and usually every 1-2 weeks, although it is fading. Once Elizabeth is enrolled in the school board she loses these direct services and will be seen sporadically at her school (no parental involvement) for consultation with her teachers. We can continue our private PT as our insurance covers the cost which is great but Elizabeth needs OT and Speech which we do not have insurance coverage for.

The other dilemma is what age group should she be paired with? If Elizabeth was born at term then she would not be eligible to start school until September 2009. My thinking is to hold her back and put her where she should have been but this requires a fight from us to do so. Elizabeth is so scattered in her skills I do not know where to put her. Elizabeth's gross motor and self help skills are still in the 12-16mths range, her language and cognition is beyond her age but her social and emotional skills are still behind. I know she will understand the curriculum but will other children understand her and can she keep up with physically active peers? So many questions.

We do have the opportunity to keep her in her pre-school (for a monthly fee) as they have a kindergarten class with a low ratio but as her Pediatrician says enrolling her in the school board now will ensure she gets the assistance of a aid as she has many safety concerns.

Any ideas? I need all the help I can get.

The Dentist

We love Elizabeth's Dentist. I dreaded taking her to the Dentist and procrastinated for quite awhile. The thoughts of an orally defensive child who vomits when the wind changes led me envisioning a nightmarish time. With Dr. S. it is quite the opposite she loves kids and understands what Elizabeth has gone through and is slow and careful with her. Her princess room, the treasure chest, flavored gloves and flavored cleansers, magic fairy wands and princess pictures make our trips to the dentist a breeze. Prematurity has left it's mark on Elizabeth's mouth as well, Elizabeth's 9mth tooth has finally emerged and due to the very delayed addition it has crossed her teeth and is causing a cavity in-between and reflux has worn her teeth. Dr. S keeps a close eye on Elizabeth so we visit every 3 months and she will refer Elizabeth to Sick Kids for sedation to treat her cavities as she feels it would be 'unfair to do anymore uncomfortable procedures on her as she has been through so much already'. To find a health professional who really understands Elizabeth is difficult therefore we love Dr. S. She makes teeth cleaning fun, I have not yet told Elizabeth about her Thomas room, she may ditch the princess room if she finds out.

Questions

Elizabeth while trying to get out of her bedtime routine was making face in the mirror asked 'Mom, why is one nose a circle and the other a rectangle?'. Elizabeth is referring to something I thought only I notice, from being intubated nasally she has a small cleft on one nostril. I went on to explain to her that when she was born she was very tiny, like a baby bird and she needed lots of help to breath and eat and grow from all her Dr's and nurses and that a tube that helped her breath gave her a 'dimple' in her nose that makes her unique. I thought this was the end of discussion but the other day she asked again about her nose and inquired if they were going to fix it to be the same and she wanted it fixed. I replied no it is perfect and kissed her nose.
My very thoughtful Aunt years ago bought me a book which I had tucked away about the story of a warrior who was a preemie, this warrior battled many things from his little time capsule and one day was able to go home to his loving family. This book and looking at her baby pictures so far are keeping her happy but I dread the day she asks why she walks differently. I again will tell her the story of the little warrior but inside my heart will be breaking.

Happy New Year

Another year has flown by at lightening speed. I thought it would be a good time to reflect on all Elizabeth's achievements during 2008, there are so many I know I will forget some but here goes. Increasing Independence is probably the biggest; Elizabeth can go to the bathroom on her own now and is accident free, she is able to remove her pants, shoes and AFO's now, she is starting to drink out of an open cup (huge, huge achievement), she can use a spoon and a fork to feed herself and she is enjoying picking out her clothing. She can walk independently for short distances (another HUGE milestone), falls are getting fewer, she can stay seated going down a slide (no more head bumps), she is climbing onto things now and can get on the couch on her own and she is starting to dance and shake her butt (it's really cute). As we finally have snow here another huge thing is Elizabeth can now move in the snow, she can crawl in her snowsuit and crawl up the snowhills, last year was difficult as she was so frustrated about her immobility. Language is as usual crazy, she is very eloquent and quite descriptive ('Mom this dinner is horrible', 'Auntie Katy what is wrong with you? You need to take a pill or something' and 'Hey Mom, my room is freezing you need to do something about heat in this house'). Vomit, we are down to once or twice a month now, I guess our last years tribute to no barf has worked, I just realized the other day that I am not looking for 'a safe place' to vomit in the places we visit now and that ball in my stomach is gone when we are out. I never realized the anxiety of waiting for the next public vomit that I carried around until I noticed that we were out and I had not looked for the largest bowl or bin. That is an amazing milestone and it has lightened my laundry load. Fine motor is really improving Elizabeth can copy simple pictures and is printing some letters, she even spelled Dad the other day.
I know I am forgetting lots but here are some of our major highlights of 2008. Happy New Year.