Today was Madison’s first MRI. Her doctors and neurologist asked us to get one done to have a baseline image of her brain and spine and to also rule out any other possible reasons both physically and chemically to explain the challenges she has, and to confirm a cp diagnosis. The wait list at Sick Kids for an MRI through anesthesia was 6-8 months so we opted to try a different route. We wanted to try an MRI through sleep deprivation and melatonin. The wait list for that option was 6 weeks so we thought we would give it a try.
This morning we had to wake Madison up at 6 am and she was not allowed to sleep until her MRI at 9:45 pm. We knew this would take a team of people to help us keep her awake all day so we scheduled shifts. The first to help was Grandma Ambos and then Nadia and Nate brought over lunch and stayed for a play followed by a dinner visit at Nana and Papa Gregoire’s and then finally a play at Aunt Emily’s. We tried to break up the day with her seeing different people and doing different things to stay awake and it worked! She managed to stay awake for 16.5 hours.
Here is a video of a very sleep deprived 2 year old who is so tired she is hyper and a little bit crazy.
When we got to the hospital they informed us that they were behind and we would have to keep her awake for an additional 1.5 hours. Nana and Papa Gregoire and Aunt Emily were with us so they helped keep Madison entertained and awake. She also was entertained by new books from Nana and stickers from Pam. All of our secret weapons worked great!
When they were 30 minutes away from being ready to start they gave Madison a pure dose of melatonin and we started our bedtime routine with her in a quiet room. We read books, sang songs and gave her a bottle of milk all in the dark. She eventually fell asleep and we walked her into the MRI room. She was sound asleep until the technician tried to place ear buds and headphones on her. She woke up screaming right away because of the feeling of something in her ears. We then did her bedtime routine again and after another 20 minutes tried again…same thing- wide awake screaming. The technician said we could try another ear protector made of sponges and that we would only have another 15 minutes to try one more time as there were kids needing to be seen from the OR. We did her whole bedtime routine one final time, placed her on the MRI bed with sponges around her head and she stayed asleep! The technician quickly put a heavy blanket on her with weights on either side, strapped her to the bed, put a strap and cage over her head and away she went into the MRI tube. Daddy was able to stay in the room with her and stayed close by incase she woke up. Seeing her in the MRI tube and strapped down with equipment all over her was one of the hardest and most stressful moments of being a parent thus far. Knowing that she could wake up at any moment and be terrified with everythung happenning was very stressful. Mommy couldn’t stay in the room to protect baby #2. Madison slept for an entire hour- the exact amount of time needed to image her brain and spine…and then she woke up screaming. Before pulling her out of the tube the technician confirmed with the doctor over the phone that all images were suitable to their needs and they were! They were able to get everything!
We are so proud of our little peanut! We can’t believe it worked without having to put her under. After the few times of waking up and screaming we really thought we would have to go home and try back in 6 months. But they have everything they need and we should have all the results before Christmas! Thank you so so so much to everyone who helped us today to make this a successful experience for Madison and to everyone who was thinking of her today we thank you too!
This afternoon Madison visited her first daycare to deliver a different is beautiful calendar. She recognized it as soon as we pulled up and waved to everyone she knew on the playground. When she went into the infant room to visit her past teachers she was a little bit shy and a bit confused but waved hi, blew kisses and had a nice play and visit. It was nice to go back and see everyone.
Madison had a swim class with Ryan tonight. One of the things they worked on was transitioning from sitting on the side of the pool to putting her feet flat against the wall to pushing off as a way to enter the water. Ryan told her the different steps of what she needed to do and she listened well and did a great job following through. They also worked on walking in the water up the ramp and floating on her back.
Madison trying to push off the wall with her feet to enter the water.
World Prematurity Day is observed on November 17th each year to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. Approximately 15 million babies are born preterm each year, accounting for about one in 10 of all babies born worldwide.
1 in 12 babies are born prematurely in Canada and these numbers are on the rise. By lighting buildings and monuments purple, The Canadian Premature Babies Foundation hopes to raise the profile and increase awareness of Prematurity in the hope of decreasing these numbers greatly
Here are some more stats specific to Canada:
The proportion of infants born preterm in Canada is increasing.
The Canadian rate of preterm birth in 2011/12 was 7.8% (29,000 infants/year)
Children born preterm are at increased risk of lifelong neurodevelopmental disabilities, such as cerebral palsy, intellectual disabilities, vision impairments and hearing loss.
There are 32 neonatal intensive care units (NICUs) across Canada and approximately 100 neonatologists who provide care for preterm and sick babies. There are 135 hospitals across the country with either a special care nursery or NICU
“Internationally-acclaimed baby photographer Anne Geddes today unveiled an image of a baby born too soon that will be shared worldwide to raise awareness of the global problem of preterm birth.
Mrs. Geddes donated the image of Alfred, who was born 8 weeks too soon, weighing just two pounds, six ounces, to the March of Dimes, which made the photo the center of its 2014 World Prematurity Day campaign.” M.O.D.
Madison was also born too soon. On September 14th 2013 she was born 8 weeks early only weighing 4 pounds. She spent 24 days in the NICU at Ajax/Pickering Hospital. We are grateful to all the doctors, specialists and special care nurses who helped her take her first breath, helped keep her warm, fed, loved and who taught her to be a fighter. They will always hold a special place in our hearts and we are eternally grateful for their special gifts of working with our little preemie.
Today we wore purple to not only raise awareness but to celebrate all of the people and organizations who are trying to make a difference through research and new medical advances and to celebrate our little fighter who continues to amaze us each and everyday.
After a fun afternoon with Nana, Madison headed home for a quick dinner and then got ready to meet her new friend Emily. She was very excited knowing that they would be hanging out in the basement as its been her favourite place to be lately. Emily is a family friend who is a recent kinesiology graduate who works at a physio clinic in Pickering. She hopes to attend physiotherapy school in the near future and is interested in learning about the different things Madison does for therapy. She will be coming to our house every Monday night for a few hours to play with Madison and work with her on her different goals such as sitting to standing, walking, stretching, using her walker etc. All good stuff to help Madison do while they play together! It is also super helpful for Mommy and Daddy to have some time to get things done and for Mommy to rest and keep cooking baby #2. Madison was so happy to tell us all about her play with Emily at bedtime and can’t wait for her to come back.
Today Madison spent her day with Nana, Papa, Uncle Mark & Nate and went to the Santa Claus Parade for the first time! It was a beautiful day! The day started with a visit at Nana & Papa’s house and gifts! Madison and Nate were given an advent calendar, reindeer antlers, a Christmas ornament and a Santa stuffy to snuggle with during the parade. They then made their way down to the parade and watched out front of Sick Kids Hospital. They had great seats! They watched all the floats go by, waved hi and had lots of yummy snacks and lunch – Madison loved her frosty cookies. The music from all the bands was great – Mark and Nate danced to the Western University marching band. Madison’s favourite floats were Mother Goose, The Blue Jays, Treehouse and of course Santa! Madison gave her Santa letter to one of his elves who was collecting and then they saw Santa! They waved hi and said ho ho ho! It was a fun day and a great way to kick off the holiday season. As soon as the parade was ended Madison fell asleep in her stroller and made her way back to Pickering. Thanks Nana & Papa for a great Sunday! She loved telling Mommy and Daddy about all the things she saw and watched the parade again on tv before dinner. Madison is ready for the holidays to start!
Madison had a great visit with Dylan and Emily today downtown at Emily’s house. Dylan read lots of books to Madison and they had a great play together. They also did a polar bear painting together that was lots of fun. After crafts they had a yummy lunch out. They had a competition of who could make the silliest lemon face and ate lots of yummy food. On the way home they stopped at the park for some fun on the swings. Madison loved her visit with Emily and Dylan and can’t wait to see them again!
When Madison got home she went to see Pam and Medford for a nice visit. She played with stickers, her favourite ball toys and didn’t want to leave when we picked her up. She is now writing her Santa letter with Daddy for the Santa Clause Parade tonorrow.
Madison had a great workout at VV today. She did lots of walking! She practiced walking holding a dolls hands, using the Kaye walker, holding and bouncing a basketball and more walking on the treadmill. She worked so hard that she passed out in the car on the way home.
When Madison got home she found some big boxes by the front door. Her calendars had arrived! She was so excited to open them and see what the calendars looked like. She pointed to her picture right away and wanted to see all the other pictures of the other kids. The calendar is beautiful and does a great job of spreading awareness with the images highlighting different as beautiful. Once all the calendars are organized she will start her deliveries. Thank you to everyone who ordered! Each month turned out great…but Madison’s favourite month is April! Here’s a peak:
After school Madison spent her day with her Daddy. They started their afternoon with a trip to the doctors for her flu shot. She was super brave and was in and out with no tears. They then headed to Home Depot to look at the Christmas inflatables and rode around in the cart looking for odds and ends for the house. When they got home Daddy made Madi her favourite dinner and they played with her new walker toy. She missed swimming tonight due to her stuffy nose. When Mommy got home from her appointment Madi was exhausted and had a long snuggle with Mommy’s tummy.
Mommy and Daddy also realized how much Madison understands about Christmas. After dinner we told her she is going to see Santa at the parade on Sunday and she will give him a letter of what she is asking from him for Christmas. She was then asked what she wants and she answered: Bubble Book, Elmo Colouring Book, milk, stickers, a cookie and a sleeping baby doll. She put alot of thought and time into each answer. It was really cute and pretty funny.
Madison continued to work hard at March of Dimes this afternoon. Janine and Suzanne reported that she is getting much stronger with her climbing and did a great job with her wall standing. She also did some fine motor practice by trying to pinch open clothes pins to take clothing off a line. In honor of Rememberance Day she also painted a Canadian Flag.