A Proposal

Elizabeth has had her first marriage proposal and declared her intention to marry a' handsome fella' as she calls him. The little boy who Elizabeth calls handsome is in Elizabeth's class and he himself is much like Elizabeth as he has a physical disability and has motor abilities are similar to Elizabeth. These two hit it off right away and frequently pair up during gross motor time to help each other out. Being the sweet little boy he is, he tries to help Elizabeth up the stairs holding her hand but it often turns into disaster as they are both unstable on their feet. He told the teacher his plans to marry Elizabeth so she told him he should ask her first, Elizabeth gladly accepted and the deal was sealed with some rocks which he gave her. Elizabeth has declared she will marry her prince when she is 16 (as well as getting her ears pierced).
I don't know who was more happier about their relationship his Mom, Elizabeth's teachers or myself. I hope these two remain friends when they get older as they have a bond and an understanding of each other that only they can comprehend.

Confused

These past 2 months have been extremely busy with appointments for Elizabeth and I can pretty much say not one of them has helped us at all, it has only left me more confused. We met with her Movement Disorder Specialist, a Metabolic Dr., saw her Developmental Pediatrician and her Neurologist. Most Dr's have their own opinion regarding Elizabeth and why things are so difficult for her. Her Movement Disorder Specialist stands firm that it is Dsytonia related to her Prematurity (which I would assume is Dystonic CP), the Metabolic Dr. was leaning towards a Cerebellar Disorder, her Developmental Pediatrician did notice some dsytonia on assessment and and her Neurologist feels strongly Elizabeth has a genetic Cerebellar Ataxia (not at related to her prematurity). We did go over MRI number 3 with her Neurologist and he agrees this is not a degenerative disease (we can cross off one thing) but that the atrophy of her cerebellum, basal ganglia and superior vermis is not related to prematurity. He wants us to go back to Genetics and ask her to be tested for genetic Cerebellar Ataxia's.
After meeting with her Developmental Pediatrician we agreed to Dystonia and I have accepted it as much as I can but now after meeting her Neurologist I am so confused and fed-up. We are getting near the date of when Elizabeth needs to be enrolled in school and a diagnosis is needed to get her services and support at school. I am so tired of dragging Elizabeth from hospital to hospital to see Specialists and I cannot forgive myself if I have to pin her down one more time while somebody pokes her. Elizabeth needs to be at home playing with her friends, playing with her toys, getting fresh air, eating at the table (we have so many meals in the car) and working on the areas where she has difficulty. Elizabeth should not be sitting in rush hour traffic watching her DVD's and be exposed to so many nasty hospital germs. I don't know what to do now, I will talk with her Developmental Pediatrician to see what she suggests, for now I am hiding from Genetics who have called again wanting to book us in. I will leave you with some pictures Elizabeth had taken while I was talking to her Dr., this was an especially fun day as we waited 3 hours to see this Doctor.

She's done and we are NOT going back!

After much procrastination I bit the bullet and took Elizabeth to her Ped's office for the H1N1 vaccination. I did not warn her ahead of time and once we walked in the room, she immediately figured out what was coming. Once done she stated 'oh that was easy that's not like blood work'. About 2 hours after the vaccination she started falling and complaining of tired legs. By the night she had raging high fevers and was unable to walk, stand or at times even sit up. I was getting pretty nervous as I had a bad reaction to the seasonal vaccine and cannot receive vaccines but by the next day in the afternoon she could walk holding your hand, she still had fevers but was taking fluids. Today she is back to herself again and full of mischief. I am happy to hear that she fits the age group that does not have to get a second dosage as I don't think I will ever get her an influenza vaccine again. I think this is a area where she is like me and is a bit sensitive to vaccines. As for the extreme regression in her motor skills her Developmental Pediatrician is still quite concerned that this happens, at least this time it was only for 2 days. It is hard when this happens as she is bigger and heavier. Toileting her is difficult as she can't even hold her weight to get her pants down and carrying her limp body around the house is much more difficult. Elizabeth should have her immunity by the end of the week and we are keeping our fingers crossed that she does not get exposed to the nasty H1N1 as I think it would really be hard on her.

Homework

Elizabeth's homework is endless; since she was a baby we always have something from each of her therapists to work on. Elizabeth rarely complains and somehow manges to find fun out the work she needs to do. We have been working hard with a new private Speech and language Pathologist to help with Elizabeth's articulation issues and she seems to be making some progress. We are working on her 's' sounds right now and she is able to put an s in front of a word when tactilely prompted. The new SLP uses the PROMPT method to cue Elizabeth and she responds well to it. One bit of homework which Elizabeth loves is blowing bubbles, I added some dish soap to her water and she was blowing a river of bubbles and squealing with giggles. She did drink a bit of the soapy water but she didn't mind.

Prematurity Awareness Month

November is prematurity awareness month. To celebrate and bring attention to preemies Growing Your Baby is highlighting the stories of babies born too soon. Growing Your Baby is a blog I like to read; it highlights the latest celebrity family gossip, gives the latest baby trends, has cool giveaways and was created by a Mom who I have met who has a child who was a micro-preemie.
I think the preemie profiles are a great way to teach the public the difficulties micro-preemies face both in NICU and once home. All too often the media portrays preemies who despite all odds have no longstanding effects from their prematurity. There are some micro-preemies who are relatively unscathed by their prematurity but the reality is that many micro-preemies will face life long issues related to being born too soon. Shannon a co-writer for Growing Your Baby has done a great job at getting the real stories out.
To see Elizabeth's profile and visit Growing Your Baby click here.

16

Like every other parent I have been debating whether or not to get Elizabeth vaccinated for H1N1. After much thought and research we have think that vaccinating Elizabeth is less riskier than her getting H1N1. Elizabeth's lungs are getting better but I don't know how well they could handle H1N1. We have not gotten her vaccinated yet as the line ups are 6-8 hrs long, Elizabeth still has difficulty with line-ups and 6-8hrs waiting for a needle would require either her or myself being tranquilized. I am also waiting for the unadjuvented vaccine as well and the rumour is it should be out any day, we just might have to pull some strings to get it.
I have been talking with Elizabeth about a bad germ that is making people sick and the need for us to wash our hands to stay healthy and that a needle can keep her healthy. Elizabeth while getting dressed noticed a news story on TV regarding the H1N1 vaccination clinics and saw someone getting a needle. After watching the news clip she declared 'I am not getting that until I am 16'. I have not given her the heads up yet that she will be getting it before she is 16 but we will have that discussion very soon. Elizabeth also has decided that 16 will be a good age for getting her ears pierced and I do agree with that.

Halloween

Elizabeth had a great Halloween as usual, it really is one of her favorite holiday's. This year she went trick or treating as a spider, she really wanted to be a dinosaur but we settled on a spider. At school she wore my sister's old pumpkin costume which was made by my Mom over 20 years ago. When getting dressed as a pumpkin Elizabeth was very adamant that her hair was to be placed in an 'elegant up do' and after many attempts she was happy with my work. Halloween night I have never seen Elizabeth's little legs run so fast, she ran up and down driveways on a never ending candy mission. Her fast feet brought her home with big bag of candy which we are all enjoying. Elizabeth also drew her own design on her pumpkin and did a pretty good job with it.

Swimming

Elizabeth finished her swimming lessons and loved every minute. By watching these videos you can see how much she LOVES water. This group we did not go in the pool with her as she was supposed to have a buddy with her, the buddy never showed but she did pretty well without. It was a pretty anxious 30 minutes every week as you may see Elizabeth has NO sense of danger with water and can get a bit carried away. We had a couple close calls in the beginning and only once did they have to pull her from the bottom of the pool, she came up with a big smile and asked if she could do it again. Her teacher would keep the class close to me at the edge and I would remind her to keep on the step to wait her turn and grab her when she was floating (or sinking by). I constantly tell her Dr's how she is in constant motion and these clips are a good example. Elizabeth got her report card and has graduated to the next level which is pretty cool.

Jumping

Elizabeth is desperate to jump. She frequently is in awe of other children jumping and asks me why she cannot jump too. At her gymnastics it is somethings that we struggle with as a lot of the exercises involve jumping. She has a trampoline at home and she recently has began to jump on her trampoline while she is holding on to the bar. To see if we can help her with jumping independently we are using Ramon's philosophy 'train the brain' and using his CME Medek jumping exercise to teach her how to jump. The exercise mimics what her body would do if she is to jump and with enough repetitions she should have the skill mastered (I think it is 1500). The biggest obstacle for her being able to jump is her uncoordination which sends her limbs flying in all directions when she tries to jump, the CME exercises puts her body through the motions of jumping. She has been working hard with Dad at her jumping and today at gymnastics she jumped a couple of times and actually got her feet off the floor for a brief second. Her gymnastics coach and I were ecstatic and Elizabeth was so proud of herself.

Big Fish and Big Test

Elizabeth had a busy Saturday. She had her 3rd MRI done and hopefully this will be the last. I really did not want her to have another one and did not feel comfortable having her under General Anesthesia again but after talking with her Developmental Pediatrician it was decided that we should have another one done. To recap; her first MRI was pretty normal which obviously did not make sense so her Neurologist sent us to Sick Kids to have one done and that one came back with changes. Her Neurologist despite Elizabeth always improving is concerned that the results from her 2nd MRI were indicative of a degenerative disorder therefore ordered another MRI. As there is still not a complete diagnosis for Elizabeth and a recent illness had her with extreme weakness an MRS was added to this MRI to rule out Metabolic conditions.
Elizabeth was so good during the whole procedure before she was sedated she told the Anesthetist knock knock jokes and was so cooperative with the Nurses. Elizabeth had me in tears when she asked if I would stay by her to protect her while she slept, I stayed until she was asleep and the Nurse got me as soon as she woke. Sick Kids were so good with her, they sedated her with a mask before inserting an IV and were able to do some needed bloodwork for me once she was asleep.
Next month we will see her Neurologist and the Metabolic team to discuss the results and I hope everything will be unchanged.
Elizabeth was pretty groggy and was not up to walking until later in the day so Gram's and I treated her to a free ride in her new wheels (shiny pink Ti-Lite wheelchair) and took her to her favorite mall for a quick treat. Elizabeth really wanted me to buy her the large mouth bass pillow but we settled for a Mickey Mouse snow globe instead, she also suckered me into buying a new dress for as well. Days like this she can get a lot out of me and as she gets older she may start to take advantage of this.