Momma Elizabeth

Now that Elizabeth is completely medication free we have noticed an amazing improvement in her play skills. I love hearing her play now, she is so interactive and imaginative. I hide in the other room with my cup of tea and just listen to her talking to her toys, it makes me so happy. Previously she would need me to script and set up her play but now she is happy playing on her own and playing appropriately.

The other shocker for us is her new desire to play with dolls, Elizabeth normally plays with her dinosaurs, animals or My Little Pony. I brought up Elizabeth's old baby bath and basinette and Elizabeth daily bathes her dolls, changes them, feeds them and tucks them into their bed after a story. Last year Elizabeth would not even be in the room if a doll was looking in her direction, I would have to turn the dolls head so it was not looking at her. Now Elizabeth makes sure her babies are sleeping in her room with her and she loves pushing them in the baby stroller.

I was so amazed at her new interest that I took picture after picture of her and called everyone we know to tell them about her becoming a 'little Mommy'.

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.