Ocean's Foot and Hand Print
was born on February the 12th 1998. I had been a planned home birth who
didnt 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.
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 Mums 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.
thanks to my Mums wonderful breast milk I thrived in the first few
months. I even went over to Scotland to visit my Dads 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!
the start of that summer we popped in to see our mid-wife June. While
playing on her front lawn she noticed that I wasnt 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 didnt 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 cats Hickory and Thomasina used to cuddle up with me lots and I loved them, they were warm and soft, they always made me smile.
wasnt until the start of December that the disease started to affect
me, I was 10 months old. I had a choking episode at home. Mum and Dad
had just started giving me little meals to supplement my still yummy
breastmilk. I choked a little on something, the worst thing was I
produced lots of clear mucus which helped clear the obstruction, but
then I had a hard time clearing the mucus! Luckily Mum and Dad took care
of me and we went to the hospital just to make sure. The doctors were
pretty impressed with me, they thought I was pretty cute! We were in and
out in a few hours, everything was fine, except for my parents nerves!
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!
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!
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
werent 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 didnt enjoy it. What it did show though was that I
couldnt 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 wasnt 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.
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 didnt 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 couldnt even tell I had only one lung working by listening to it, they needed an X-ray to show it. Even my SATs 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 didnt 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 dogs 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
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.
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 Im doing well now, and Ill always be there for them.
Thats 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 thats all! Enjoy my site and all my friends sites! SMA is a terrible disease, but I think were 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. Im going to give them a big hug when were together again!
Ocean and Hickory