Author: katherineambos

Today was a marvelous Monday and Madison had alot to celebrate and be thankful for today.

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Madison’s day started bright and early with a DNA swab test. As mentioned in a previous post – Madison is taking part in a research study with Sick Kids, Bloorview and Grandview. Part of the study is collecting saliva from her and her parents to look at family DNA in connection with CP. We had to collect the samples prior to eating or drinking anything, so the swabs were taken at 7am this morning. We are hoping from the study they will be able to know more about possible causes for CP, risk factors and other treatment options to help other families that are on a similar path as us.

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Madison then ate a big breakfast and was off to school for the morning. Funny enough, the theme at school this week is Doctors! When she got home we headed to Grandview for a visit with Dr.Hunt who is a Developmental Pediatrician on the research team with CP-NET and the research study. We handed over the saliva kits, our many pages and packages of surveys and forms and got ready for Madison’s assessment. Dr. Hunt did a variety of physical tests with Madison including vision, hearing and joint reflex ‘ s. She asked a bunch of questions of Madison’s journey dating back to birth and watched her play and move. She said she was able to submit many notes from her observations and after 40 minutes Madison was done. We now have a few more forms to fill out and to transfer her MRi results once those become available and then we will be back in front of the research team when Madison turns 7.

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After Grandview was a quick dinner and then Madison’s new friend Emily popped by the house for some physio fun in the basement. They practiced sitting to standing and throwing balls at Stitch, walking with the push popping toy, stepping up and down off a stool while playing with the play kitchen and lots of other fun activities including practicing with her walker. Madison loves her time with Emily and we are very happy and appreciative to have the help and more time put towards her different physio goals.

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While Madison and Emily played together, Mommy attended the final meeting for the Mike Gregoire Memorial Golf Tournament. Tonight was the presentation of the cheque for Madison’s Rehabilitation Fund. Mommy was so overwealmed with the generosity of the cheque she balled her eyes out and was in shock. Madison is very lucky to have so many family and friends who care so much about her and her well being and we are extremly grateful for the oppertunities that the golf tournament will provide for Madison.Thank you again to Lisa, Jessica, Pat and the entire organizing committee for thinking of Madison and helping us give her whatever she will continue to need to be successful and continue making progress. In the short term- the generous donation will help Madison receive her botox next week, allow her to expand the amount of physiotherapy following the botox and to look at accessing a new walker and continuing with all her other therapies this year. Thank you again to everyone who participated and attended the event and to everyone who made donations to the event, silent auction and door prizes. We are very blessed to have so many amazing people who continue to cheer on our little peanut.

Madison had lots of fun at Nana and Papa’s at her sleepover. When she woke up this morning she played and pretended to phone Mommy and Daddy. She then went to brunch in the beach. Madison loved reading stories while waiting for her food. She ate lots of bacon, eggs and everything on her plate.

After brunch Madison, Nana and Papa went downtown to check out the Christmas windows at The Bay. Madison told us she saw Santa, a mouse, a horse and toys. It was a bit chilly but everyone bundled up in the snow.  They also went to look at the giant tree at the Sheraton Centre and the big Toronto sign at City Hall. It was a fun downtown adventure to get excited for Christmas! Mommy and Daddy want to say a big thank you to Nana and Papa for the much needed break.

Madison went to bed very late lastnight but got up around 9am, so she spent the morning in her PJ’S.  We didn’t disturb her – we just let her do whatever she wanted to relax and take it easy. Mommy’s friend Lisa came over for a visit and to deliver food and snacks from all of Mommy’s friends at Branksome.  It was a lovely treat – thank you everyone!  After a nice visit with Lisa, Madison had a good nap and so did Mommy. Madison then visited with Pam and Medford and all of their family at their open house. She loves going over and did not want to leave. Mommy and Daddy needed a much needed rest after yesterday so Madison went over to Nana and Papa Gregoire’s for a sleepover. She played, had spegetti for dinner, played in the bath and then was off to bed after watching the leafs loose. It was a very laid back day which was much needed by everyone.

Photos of Madison visiting with Pam and Medford

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Madison’s teacher sent us a picture of her in a new walker she is trying at school

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.

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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.

Madison has been working hard these last 2 days. Her botox is scheduled to happen in 2 weeks so she is working to develop balance and muscle strength to help for after the injections.

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.

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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

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“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.