Ocean's Foot and Hand Print

I was born on February the 12th 1998. I had been a planned home birth who didn’t want to be born at home. Luckily Mum and Dad had a wonderful midwife called June guiding them through the process. She decided after lots of time in back labor it was time to take my birth into the hospital, it was getting to hard for my Mum.

So we drove to the Royal University Hospital in Saskatoon. After Mum and I had some rest in the hospital, I came into this world at 8:16 PM, on a crisp winters evening. I weighed a healthy 8lbs 6 oz.  Dad was even brave enough to cut my cord! The first people I met were June, my mid-wife, Dr. DeBruyn my wonderful doctor, my Dad, my Mum, my Grandma Joy, my great Aunt April and Mum’s friend Yvonne.  Needless to say I had quite the welcoming party!!

Soon after coming out I started to feed from my Mum, she was so nice to be with. We left the hospital the next morning and went back to our little home.

So thanks to my Mums wonderful breast milk I thrived in the first few months. I even went over to Scotland to visit my Dad’s parents and sister, and to England to meet my other Great-grandparents. That was lots of fun. I enjoyed the flight so much that I just slept and fed most of the time!

At the start of that summer we popped in to see our mid-wife June. While playing on her front lawn she noticed that I wasn’t weight bearing in my legs yet. She suggested that we go to see our family doctor just to be sure everything was all right. So off we went. The doctor referred us to a pediatric neurologist called Dr. Lowry, and luckily for me that I met him, he is a wonderful man. Well he diagnosed my symptoms pretty quickly, he told us all that I had SMA. Just to be sure, we all had blood samples taken for DNA analysis. That would take a couple of months to come through.

What a bombshell that was for my parents. I was only four months at the time and I was very healthy and I didn’t know any different. That summer I had lots of visitors. We had such a fun time. In September the DNA results came through, Mum and Dad were both carriers of the SMA gene deletion, and I was fully affected. Dr. Lowry said that due to my symptoms that I was closer to a Type 2 patient. Not to worry was my attitude. I continued to be happy and smiling, and Mum and Dad loved me just as much. At this time I started my therapy. I went to a special clinic were I got to play and get lots of attention from people, they were making sure I was still doing Ok developmentally, they thought I was just fine.

Ocean sucking her finger.

Dan, Ocean, Tom the cat & Sophie the dog

I also started talking and I said Da and Momma at least once but my favorite word was “Cat!” and a little later I started saying “Dug” for our puppies. My cat’s Hickory and Thomasina used to cuddle up with me lots and I loved them, they were warm and soft, they always made me smile.

So I had my first Christmas, which I got lots of little gifts, and I had my first New Years. I was cutting my first couple of teeth at this time so I was a little grumpy.

Ocean and rubber ducky

Ocean in her green tub.

Ocean smiling with her tongue out!

At the start of January in 1999 Mum and Dad took me to see our family doctor for a quick check up. He notice that my skin was tenting. What that means is that my body was dehydrated. He suggested that we go straight to the emergency department at the hospital. So I got to see all my friends at the hospital again, they all remembered me!

The first thing they had to do was get me rehydrated. That was pretty hard due to the fact that I had very small veins and dehydration made them even smaller. After many tries I was finally hooked up, I was brave throughout it all! I was admitted to the isolation ward on the pediatric floor. After a few days just getting my fluids up they decided that we better figure out how I got so sick, I was over 10% dehydrated! Mum and Dad were feeding me and giving me plenty of fluids and food so they weren’t to blame. The doctors decided to do something called a barium swallowing study. They gave me some food mixed with barium to swallow, blaaaghhhhhh! I didn’t enjoy it. What it did show though was that I couldn’t really swallow safely anymore. I had lost the strength in my tongue and I was at great risk of aspirating something. So even though I was still sucking at the breast I wasn’t getting much from it, I lacked the strength to stimulate the milk. So they told Mum to stop feeding me the breast just to be safe, and I had to be fed via a naso-gastric tube till they figured out what to do. I had to be fed formula with some breastmilk (which Mum was still expressing for me). I started to feel better straight away, my tummy was full again!

The doctors suggest the best course for me would be the placement of a permanent feeding button to my tummy. At least it would get that silly tube out of nose! So I had my first and only operation. Everybody was super nice to me. I was really tough and the operation went very well. I could feed via the button that evening!! It made my life so much better. I started to thrive again! After a few more days in hospital getting used to the button they decided to let us go!!!! Mum and Dad never left my side for that whole month I was in hospital! My grandma Joy came and kept me company too and I met my Grandpa Bill for the first time! He cuddled me and walked with me and I liked him lots right from the start.

Ever since I was really little Mum and Dad would play a CD as they held me to help me go to sleep. It was called “On a starry night”, it always sent me off. I liked it lots. I was glad to be back home listening to it. While I was in hospital some wonderful people fitted a big two person whirlpool tub. I loved it so much. Mum and Dad could be with me and I could swim and move very easily. I spent so much time in there. I also started getting special visitors to my house to help me, Mum and Dad. My favorite was Erin, she would give me fun things to play with.

I had my first birthday on a snowy Friday. I got lots of gifts from everybody. Mum and Dad took me out to the local forestry farm to meet some animals. A lovely lady called Katherine let me touch some bunnies, a snake and other animals. I had such a fun time! The bunnies made me smile they were so soft but I didn’t like that old snake! A few days after my birthday I had to go back into the hospital. One of my lungs had 3/4th collapsed with pneumonia. The doctors couldn’t even tell I had only one lung working by listening to it, they needed an X-ray to show it. Even my SAT’s were 99%!! I was a strong girl. Dr Lowry had a talk with my Mum and Dad. He told them that my symptoms were more a Type 1 child now. He is such a nice man, he helped Mum and Dad lots. After another couple of weeks they said I could go home again! I still was only breathing on one lung as I didn’t have the strength to open it up myself, but I was doing wonderful.  

It was now the start of March 1999. I was doing great with my feedings, Mum, Dad and I were having lots of fun. We would go for walks with my dog’s Sophie and Bertie. We enjoyed being together so much. On Thursday March the 25th it was Daddies birthday. Mum and I had a great surprise for him that day, we had bought him a lesson at a flight school, he enjoyed it so much. I liked Daddy being happy.

Ocean lying with Kriss

Ocean in her stroller w/ the black toque

Kriss and Ocean

That weekend Daddy and I got to spend lots of time together. Mummy went on an ambulance ride-along over Saturday night. So Daddy and I got the whole bed together by ourselves that night. That morning Mummy came in at 8am. She had had a fun night, learned lots. When she came into the bedroom I gave her the biggest smile. Mummy decided that she would stay up for a while to be with Daddy and I. They fed and dressed me, and we decided to go for a walk together.

It was such a beautiful day. The sun was shining brightly, the air was fresh with a gentle breeze. Everything was good in my life, Mum and Dad were doing well. We were all happy. I was all wrapped up in my blanket all nice and warm. We went and visited a few people for a while then we continued our walk.  I decided to leave them there.  They were so happy, I love them dearly.

They thought I was asleep, so they left me in the porch to get some rest. Mummy noticed that my lips were the wrong color a few minutes later. Mum and Dad did CPR till the ambulance came, but I was already watching them from another place. They love me so much. They miss me lots, but they know that I’m doing well now, and I’ll always be there for them. 

That’s my little story. I lived such a joy filled life. It may have been short but it was filled with such love. I got to meet so many wonderful people that took care of me and wished me the best of the world. My body is gone that’s all! Enjoy my site and all my friend’s sites! SMA is a terrible disease, but I think we’re wonderful children. Enjoy every moment you have with your children! I taught my Mummy and Daddy to live every day to the fullest. None of us have any regrets because we love each other very much; my parents miss me lots but they know where I am and that now I can run and play so they are happy for my sake. I’m going to give them a big hug when we’re together again!

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Ocean and Hickory