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.