| Angelman Syndrome Awareness: Our Angel Madie | Last Updated: Jun 09, 2009 |
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Madison Grace Burleau July 2, 2005 7:47pm 4lbs15oz |
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Stories January 5th, 2007
Just wanted to let everyone know that we are doing well. Although we were shocked to find out the news that
Madison has AS...we have had a lot of questions answered. Why her hair was so blond, her skin so fair and her eyes so blue- because 60% or more of AS children have this in common. Why she sometimes sticks out her tongue, why she can laugh hysterically for no apparent reason, why she is almost a year behind developmentally, why she hasn't said a word, or tried to walk, why she gets so excited over the pool or bath, why she mouths everything- you get the point. Although this information has been quite unsettling- it has been a relief at the same time. No more wondering-you know?
Well my new mantra is "if we believe it - she can achieve it".
We bought Madison a new high chair that is portable- it has a straight back. No more easy way out- reclining the high chair when she has a bottle. We are going to have a lot of work a head of us- but we are going to fight this head on.
No more tears no more selfish thoughts about dreams that we had for her that may never come true. The time to look forward is now. Madison is still the same little girl that we fell in love with and she will be loved more now then ever before.
I bought a honey bear with a flex straw to start getting Madie weaned off the bottle and onto using a straw. This will work her mouth muscles much more and prevent her from drooling as much in the near future.
I have joined many
web forums thanks to the advice of my dear friend Jessica. We have taken a lot of comfort in knowing we are not alone- and you have all helped in this. And we thank you for that.
Your prayers, poems, visits, emails and calls have been over whelming and much needed. Thanks to Theresa and the Martinez family for their beautiful gift of flowers- Madison was enthralled with them:)
We have to have hope, hope that Madison will excel in everything she tries, hope that she will remain healthy and happy and hope that she will feel like the majority of young children. We want to approach Madison as having a DIFFability now a Disability and treat her like we would any other child we may know, paying special attention to her specific needs.
We will be visited by a social worker next Wednesday to advise us on all the services that OCTC (Ottawa Children's Treatment Centre) can provide us with. As well Madie will be going to OCTC to work with her OT (Occupational Therapist) with special focus on her fine motor skills.
I will try to keep you up to date on Madison's progress and please feel
free to stop by her website:http://www.babyhomepages.net/babymadie/index.php
All our love and appreciation
Sarah, Brad, Madison and our families
January 3rd, 2007 Well today we were fed our hearts on a plate. Madie's test results came back postive for Angelman's Syndrome. And as much as I do not want to draw attention to ourselves at this time, I want to educate those who love and support Madison in everything she does. Our dreams for our daughter to get married, graduate from University, call out our names etc. died today. Dr. Keene was gracious enough to not call with the test results before Christmas- as he had the results since December 13th. We are just trying to digest what we have heard and organize our lives the best we can. I will be going part time in August so that I can teach, support and be with Madie as she really starts to thrive. Madison will still be able to learn up into early adulthood. Today we are dreaming a new dream for our little girl. One day at a time. Our goals include her saying mom and dad, and learning how to communicate in a non verbal manner. As well as starting to walk. We know she is a happy little girl and somehow seeing her smile makes all this a lot less painful. We have so much hope for her!:) She is biting my big toe under the computer desk as I write this. We love you Madison you are one special girl. Not sure why were given this challenge- but our life sure will be interesting to say the least:) December19th/06 Madison has been noticing pictures of herself around the house and laughing hysterically. Madie enjoys when I whistle in the car:) Oct 20th 2006, We received good news this week. Madison's MRI came back normal. As happy as we were to find out the great news; its back to the drawing board in regards to more tests to rule out any other causes for her delay in motor development. Thanks to all those who called or emailed to lend support and to see how our little toot was doing. it has been an emotionally draining week. We are headed to Oshawa this weekend for some TLC with Daddy! Talk to you all soon! Oct 3rd/06- This past weekend Madison spent some much needed alone time with granny and grampa Vaughan, whilst mom and dad hit up Tremblant. Madie entertained and exhausted her gradparents for two days. She kept crawling down the hall in the basement and playing with the door stop. She also thought it would be fun to throw food on the walls! That is our Madison. Looking forward to Thanksgiving at Aunt Dana and Aunt Chantal's house. Daddy will be home again! One month down two to go! Sept 19th/06 This weekend we headed to Oshawa to meet Daddy at his brother Jeff's house- my BIL. We arrived at 8pm. We were greeted by Uncle Jeff and his friends. Madie made strange to the environment that she was in for a few minutes as she was feeling tired and a little disoriented by the drive. Uncle Jeff spent some alone time with Madie on Sunday they had a great time. Madison was thrilled to see her Daddy as it had been a long two weeks without him. She wasn't sure who he was at first but as soon as he started talking she was reaching for him and giggle in no time. Brad left for London on Sunday afternoon it was another emotional goodbye. The weekend flew by. We look forward to seeing daddy in another two weeks in Tremblant. Madison had her pre op today for her MRI at CHEO. She had blood taken- she didn't cry at all. Her MRI is next Friday the 29th...she will be put to sleep for 40 minutes. Madison had an apt with an occupation therapist on Monday who observed how Madie was eating- she did very well. Tomorrow we have a physio apt. I swear they should just give me a parking permit there. Madie is at Granny and Granpa Burleau's most days and is enjoying the time she has with them. She realizes we are on their street now and laughs with glee. Today Madie started tummy crawling...ok not sure if that is a real term or not...but she is finally moving forward on the floor. I was sooo excited. I told Brad when we spoke on the phone tonight...we both missed it as he is away and I was at work. Granny and Grampa Burleau got a real glimpse of her first crawl. Madie has an 8 minute digital video to watch of Brad playing with her everynight. I taped it before he left. Of course I just cry when I see it, but she loves it:) Melissa Vroom came to hang with us tonight, it was a lovely visit. Hello all! Madie is 14 months on Sept 2nd. And boy has she grown she is 30" now and 20lbs. She has grown a little more hair...but it is still slow to come in. It is so blond! I was finally able to put baretts in her hair yesterday when I took her to get her pictures taken. She has grown some teeth, one bottom left and her two front teeth. Her smile is more adorable now then ever- but I guess I am bias. Madie gets around by rolling from one end of the room to the other. She is trying to get up on her knees but it still working on that and physio is definitely helping. Madie is definitely delayed in her motorskills and will be undergoing a numerous amount of testing in the upcoming months, including an MRI to rule out any neurological disorders. Our hearts sank a little when we heard that but we are confident CHEO knows what they are doing. Madie got a BUMBO and it is working really well to help her sit straight up. She also got a Little Tikes walker and we will be introducing that over the weekend. Madie has figured out how to stand up at the couch. She is a delight in everyway. Your prayers and support are welcome at this time of uncertainty. Brad leaves for OPC Tuesday so it is single parenthood duty for me:)Thanks Happy Birthday Madison! Today Madie Celebrated with close friends and family. She had a great time. She received wonderful and generous gifts. Thanks to all those who were able to attend. She had a great day. Hello all! Madie is doing just great, hard to believe she will be celebrating her 1yr in a few short weeks. This week Madie has been sucking on her toes, and grabing for the remote control to the tv. Grandpa Vaughan has taught her how to change the channels and the volume- how wonderful haha! Madie has become fascinated with what everyone else is drinking and grabs at their glass- when offered a sip she always makes a mess. Madison has been doing exercises everyday for physio, she is coming along great!
Her first visitors: Besides our immediate families, Katie Mailhot my first cousin showed up at the hospital and was lucky enough to be the first family member besides Brad and I to meet Madison. Katie's thoughfulness touched our hearts as we were in an exhausted and frustrated state. When we arrived home Mel and Glenn Adams were the first to come and see her, they couldn't get over how small she was. She must have made some impact as Mel and Glenn are now expecting their first! We can't wait for Madie to have a female friend, Chloe will be a welcomed change from all the boys in Madie's circle of friends. Madie remained in the NICU for just over a week. Which seemed like an eternity. Madison was taken by ambulance to the Civic as another baby at the Ottawa General needed her bed more. Her first ride in this world was a scary one for us as we didn't even get the opportunity to accompany her. But thankfully she made it! The civic was a welcome change the staff in the NICU were most knowledgeable, caring and understanding. We came and went from home to the Civic everyday until she came home with us on the 10th of July. Born on the 2nd of July 2005, Madison "graced" us with her presence 6 weeks early. We delivered at the Ottawa General. My water broke at 6:30am and we were at the hospital about 7am...good driving Brad! We proceeded to the delivery room, where surprisingly I had a relaxing labour. We watched movies, ate and called all our friends and family. We watched "old" movies, Jerry McGuire and Little Giants. Grandpa Vaughan was first on the scene after convincing him to go play a round of golf he finally aririved ha! Granny and Grandpa Burleau arrived shortly after the delivery as well. Aunt Dana and Granny Vaughan, were in the air as Madie was born. They were supposed to be in the delivery room with us but were on their way back from Arizona at the time. I will always remember the time of day Madie came into the world at 7:47pm- coincidental as half my family was in the air when she was being born!
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