The Principal's Office

We have begun to register Elizabeth for school at the catholic school which is in our area. As usual things are not easy with her next transition. We have put much thought into where Elizabeth should be in terms of grade level because according to the date of Elizabeth's birth she should be placed in grade 1 next year. Here the cut off for the school falls in December and if you are born before January 2005 you are to be placed in grade 1. We are not comfortable with her beginning grade 1 for a multitude of reasons and therefore are asking for her to be placed where she would have been if she was born at term (she was due March 2005). Placing Elizabeth in a grade 1 class full-time is setting her up for failure; we know she has delays in many areas and she will never keep up with her peers at a level which they can but there are some areas where she will be close if she was allowed to go to school with kids who were born close to her due date. This extra year of her being at home half time would allow us to continue what we are doing at home, in gym class, in physio and at speech. We are not the only people who feel that Elizabeth should be held back; her teachers, resource consultant, therapists and her Pediatrician agree with our decision.
Because of our request things are not going well with her enrollment and I think the school is trying to find a way to exclude Elizabeth. There have been questions regarding our faith as we are intending to enroll Elizabeth in a catholic school despite the fact we have followed what is required by the school board. Dealing with this principal makes us wonder is this the right school for her as it does not seems like she is even wanted. If they do end taking her (to SK of course) will they accept her or will they treat her badly because we have questioned their policies (which I have read and recited to the Principal)? I have tried to be fairly nice with the school but nice may not be cutting it and we may need to go higher up to reach a decision. We are now waiting to hear back from them and when they are to 'assess' Elizabeth at her pre-school, if it is a no we will have to resort to plan B which may include moving to get her into a public school with a decent record. Wish us luck, lots of luck.

Spelling

Elizabeth is learning to read and spell now and is amazing us her with her ability to read. While I was making dinner Elizabeth was working away at her easel spelling words and drawing a picture of each word. I had to clarify the first word with Elizabeth and she agreed that it did spell boob and beside it was a drawing of a boob. I just hope that is one picture she does not draw at school.

An Emergency

Of course these things always happen on a Friday afternoon when the clinics are closed for the weekend. Elizabeth's AFO broke, the hinge that keeps the top and bottom secure and which give her movement cracked and the screw popped out. For Elizabeth this is a bit of a catastrophe as her AFO's are her legs; they keep her stable and prevent her from doing further damage to her knees. Elizabeth rarely leaves the house without her AFO's on as she is not safe. I immediately sent an SOS email to her Orthotist but of course he is out of the country for the week.
Luckily Elizabeth still fit into her old butterfly AFO's so she has spent the week in a very short butterfly AFO and a somewhat short ladybug AFO. Becasue of her not growing much over the past year and a half we missed disaster and are coping with her mismatching AFO's. Without the mismatching pair of AFO's she would have had to spend the week at home (which she would not have minded at all).

A White Lie

I did it again, a little white lie to appease one of Elizabeth's Doctors. In December we met with one of her Neurologist's and I had mentioned that Elizabeth had been having the nightly pain in her knees and that she was becoming tight in her hamstrings and rotators. We are definitely concerned with Elizabeth's new found tightness as she is more of a low tone kid and her higher tone is causing difficulty with her sitting. Because of our concerns her Dr. wanted to start a trial of Baclofen. Baclofen is most often used for children with very high tone as it is a muscle relaxant. Baclofen can have side effects of drowsiness, dizziness, vomiting and weakness. Baclofen will reduce Elizabeth's tone and would make her difficultly with walking worse and her hyperextension worse. Despite me trying explain that I did not feel this was the best option for Elizabeth she hurried us out with a script for Baclofen and I was to call in 1 month to let her know how it was working.

After having a chat with one of Elizabeth's other Dr's it was agreed Baclofen was probably not the best option for Elizabeth. So to avoid getting kicked out of the specialized clinic (we have been kicked out of a clinic before because I sought a second opinion) I told a bit of a white lie I called and said that we did try the Baclofen and it made Elizabeth worse with her balance and mood and we stopped giving it to her. I felt really bad in doing it but it is also important that we stay in the specialized clinic.

These times really make me wonder if I did not have the educational background as a Nurse for children with Developmental Disabilities where would Elizabeth be? I just think of the many families I meet who english is not their first language or the parents who do not question their children's Doctor what happens to these children? Sometimes Doctor's are on their own agenda and no matter how you try to explain your child they are not listening because of this I have to sometimes tell a white lie.

Knees

Elizabeth's poor knees they are causing her so much pain and discomfort. This has been going on for the past year and it comes in spurts but this week has been horrible for her. The pain we think is related to her hyperextending her knees with the most strain on her Rt. knee, when she walks or stands she pops back her knee for stability (as you can see in the picture of her Rt. knee). Certain activities such as bike riding, swimming, walking without AFO's, sitting in the car too long and extended walking really aggravate her pain, we try to be be careful but at the same time she needs to keep active to keep her strength. We have tried so many things to prevent her knee pain; rigid AFO's, AFO's up to her knees, a Benix knee brace, kinesiotaping, heat, Motrin (we are going through a bottle a month), massage and creams. Elizabeth during the day does not complain regularly of the pain but lately she is chewing her fingers and when asked she says her knees hurt, Elizabeth describes her pain as 'a hundred owies biting my knee'. Nighttime is the worst time for Elizabeth, she is up for hours and up frequently in the night writhing and crying. Her sleep lately is so disturbed that she is wetting the bed and during the day she is miserable. During the night we use heat, her Voltaren cream and Motrin and that lasts a couple hours and she is up again. I try not to get in the habit of sleeping with her but on some nights the only way to soothe her is by rubbing her knees. Lately we all have been miserable as we are all very sleep deprived. I talked with her Developmental Pediatrician and she was able to get us an earlier appointment with the new Orthopedic Surgeon as she is very concerned. We will see her Pediatrician for a check up this week as I just want to make sure there is nothing else I have missed and it is not a referred pain. She will also go and see the Orthotist to review her AFO's and see if there is anything else we can do to her AFO's to make her comfortable. We are also starting another block with her PT to work on strengthening to hopefully help her not put as much pressure on her knees. I so worry what it will be like for her when gets older, I see what her dystonia/ataxia/hypotonia (still waiting for a diagnosis) does to her little body now and I cringe to see what it will do to her as she ages. My last thing to try is for her to see a Chiropractor I just need to find some extra time in her busy schedule.

Gymnastics

We have come to a point with Elizabeth where physiotherapy sessions were not benefiting her as a child as a whole. Elizabeth does well at physio she does what is expected and works hard but it must be stressful for her to have to comply while being watched and coaxed by therapists. She was not being socialized with other children only to adults in her weekly phsyio. We enrolled her into gymnastics and for the past year and a half she has been thriving in gym class. In gymnastics Elizabeth is being challenged physically and she is also being socialized with other kids, she is waiting her turn, talking to other kids and getting out in the community.

Elizabeth loves gymnastics and her long time teacher loves having her in the class. I stay with Elizabeth and help her as she needs help for most things, Elizabeth is not physically able to do what the other children can do but she is mastering things on her own pace. Two of the biggest things she can now do is jump on the trampoline (she can actually lift her feet up and can jump for up to 5 consecutive jumps) this is HUGE for her. The other thing she can now do is when holding onto the uneven bars she can lift her feet to the bar, when we started she could not even bring her legs up an inch.

What I love about her current gym class is there are only 3 kids in her class and they have the gym to themselves. Distraction is still a big issue for Elizabeth and the limited kids keeps her engaged. We just have get her teacher to pay as much attention to the other kids as she does for Elizabeth as you can probably see the poor little guy in her class is bored to tears, I spend a bit of my time in the class praising the other kids as they feel a bit left out. Elizabeth still goes to biweekly physiotherapy as it is important that a trained professional keeps an eye on her and helps her progress but being in the community is just as beneficial.

Happy New Year

Another year has flown by and 2010 is here. We have had a pretty quiet Christmas vacation and are trying to find things to do in a very cold climate with NO snow (it is pretty crazy that here in Canada on Christmas Day we had rain and worms were actually on our driveway). Daddy has been very busy renovating our bathroom and I have been trying to keep Elizabeth busy and active. Elizabeth was out of commission with a respiratory bug since her birthday and took a good 10 days to get back to herself. We had many trips to the Dr's and of course her vomiting started again due to her cough. With puffers and antibiotics she is now cough free, we are now hoping her vomiting goes away as it seems like her old habit of getting upset = vomiting is back.
We celebrated a quiet New Years as just before we were going out Elizabeth got upset and vomited her big New Years feast so we decided to call it quits and hang out at home. New Years day I took Elizabeth to our local recreation center and she was able to watch Ice Carvers carve the Olympic Rings. Elizabeth had the most fun playing in the debris the carvers left as it is as close to snow as we are getting now. We were able to get a way for the night with a good friend up North and she loved swimming in the hotel, playing in the snow, snow tubing and eating snow.
We wish everyone a healthy and happy New Year.