Merry Christmas

Another whirlwind Christmas day, all the festivities leading up to Christmas and then getting ready for the day are so busy. Hopefully the next few days we will be able to slow down and take in all that we have done and what we have received. We as usual we spent the day with my parents, my brave grandparents who are both 91 years old and my brother and his family. We took Elizabeth to Christmas Eve mass; she looked so grown up holding the hymn book pretending to sing with the rest of us. When we got to the church Elizabeth told me she could see Jesus' name and when I looked at what she was looking at it said Christ Elizabeth is into spelling these days and she thought Jesus was spelled Chesus as that is how she pronounces it.
Surprisingly Elizabeth did not wake up until almost 8:00 on Christmas day and as soon as her eyes were open the squealing began. Elizabeth's most coveted gift from Santa was 'Rocky the Robot Dump Truck', she has spent all day loading him up and talking to him. Elizabeth also got another typical girl gift; a lava spewing volcano for her dinosaurs. I characterize Elizabeth's taste as eclectic as she gets equally excited about lip gloss and nail polish.
We hope everyone had a Merry Christmas and were able to enjoy some time with their families.

Happy Birthday

We really cannot believe that Elizabeth is now 5 years old, 5 seems so old. The past couple of days prior to her birthday have been pretty emotional for me as I am reminded what hell we were going through 5 years ago. The past couple days I have been having these unexpected teary moments when I see a pregnant woman or when I look at Elizabeth and remember how far she has come. It was a pretty scary time going in to labour so early; we really did not know if we would ever be able to bring her home and what she would be like if she survived. I also became very sick while in labour as the medication used to stop labour caused heart damage. I quickly began having chest pain and difficulties breathing and for awhile I was pretty scared for my health. Poor Daddy did not know what to do he would run to see Elizabeth and then accompany me to all the testing I was going through.

Fast forward to today and we can say we are beyond blessed to have such a wonderful little girl who has overcome so many obstacles. The most amazing thing about Elizabeth is her personality; she is loving, caring, empathic, she never complains or tantrums and always thinks about others. She is so patient, through all the long appointments and therapy she never complains or resists, she works hard and does what is asked of her. She definitely is tenacious and can be quite mischievous when we see that twinkle in her eye we know she is is up to trouble. Elizabeth is so resilient, the numerous times she falls and crashes in day she always gets up, brushes herself off and keeps going.

Elizabeth has a love for all creatures, when she sees a spider she declares how cute he is and wants to keep him. She continues to love playing with her dinosaurs and loves learning more about them. She also has a girly side; she loves dresses and tights, loves playing My Little Pony, Little Pet Shop and is becoming fond of her dolls.

Elizabeth has celebrated many achievements this year; she is drawing some pretty recognizable things, she is printing most letters of the alphabet, her cutting is amazing, she is reading small words, counting to 30, counting objects to 10, she is getting herself dressed with minimal assistance, she is walking further, riding her adaptive bike, eating more foods, eating with utensils, she can walk distances, she is stepping up small curbs, she is initiating play with others and is playing more appropriately. I am sure I have missed many other accomplishments but this list is pretty impressive for us.

Elizabeth continues to have a very busy agenda but we attribute all that she does with her successes. Her typical agenda includes horseback riding, swimming, gymnastics, speech therapy, physiotherapy, yoga and all her homework that we work on at home. We also attribute her new physical gains with the CME Medek that she has done in the past, we are taking a break presently and will think about another block.

Elizabeth did not want a birthday party this year and instead chose to go to Great Wolf Lodge for a pre-birthday weekend. Her best friend Owen and his family came and the two of them did not separate for a moment while away. We did have a small family gathering tonight and Elizabeth helped decorate her pink polka dotted My Little Pony cake as that is how she wanted her birthday cake. Of course it would not be a birthday without Elizabeth getting sick so we spent the morning at the clinic getting her back on her puffers for her crappy chest and will continue with her puffers in hopes to keep the P-word away.

Happy Birthday Elizabeth, we love you very much, we are the luckiest parents.

Saturdays

To earn some extra money for Christmas shopping I have been working Saturdays giving the H1N1 vaccination (I apologize to all who had the achy arm it is not me but the vaccine that did it). While I have been at work Elizabeth has been spending Saturdays with Daddy, Daddy is a pretty busy guy from renovating our aging home to commuting 2-4hrs a day he does not have too much time to have fun with Elizabeth. Elizabeth and Daddy have been hard at work making the above creation out of paper mache and a coat hanger. Each Saturday they completed the next step until the finishing touches of Elizabeth's red finger prints. Her new pterodactyl hangs proudly in her room. Along with their masterpiece they have gotten even closer and have had a great time hanging out together.

Christmas Spirit

There are no worries about Elizabeth not getting into the Christmas spirit, she is ready for the big day. Decorating the Christmas tree started her off and now she is is super excited. Elizabeth was so cute when she helped me decorate the tree, we had Christmas carols on the radio and she sang along to most of the music while placing ornaments on the tree. I love getting out our ornaments as so many of them mean so much to us. Elizabeth's first Christmas was in the NICU and she received some very special keepsakes from family and friends and each year we bring them out to put on the tree. After constant nagging and greeting Daddy at the door with the the outdoor lights she then supervised him as he hung them outside. Her baby bassinet has turned into Santa's sleigh and while donning her antlers she pulls/pushes her toys around singing Rudolph the Red Nosed Reindeer. She has also completed her Christmas list and of utmost importance is Rocky the Robot dump truck (it's a singing/dancing and joke telling dump truck). The first day of December we awoke to screams at 6:30 am telling us it is December and time to open her advent calender and eat chocolate. I love how excited she is about Christmas, I can't wait to see her Christmas morning.

Little Things

Raising a child with a disability makes one very aware of the little achievements in life. Small things that a parent of a 'normal' child would not even notice for us is worthy of a party. One of the recent things Elizabeth is doing is eating banana's, before we knew of Elizabeth's oral aversions and what to avoid bananas were a food that Elizabeth could not handle. A pureed banana was fine but one lump and the vomiting would begin. When Elizabeth was little just having her watch me mash a banana was worthy of gagging and running eyes. Even last year her father got her to have bite of his banana peanut butter sandwich and the hidden banana caused a stream of barf. Now Elizabeth is asking to eat a banana (only on her terms) and can eat it without even gagging. Elizabeth is also having an occasional bite of a potato which is also great. We love these little things as for us it is progress and a sign that some of her preemie issues can go away over time.

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.