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Stories
Happy New Year!!
Madison has been seizure free for over a year now!! She has had quite a few colds- but to be expected when attending school. Madison goes to our local school here. She has adjusted quite well to bus routine and class. She attends the developmentak education class with 7 other students with a one on one aid. She is also partially integrated into a junior kindergarten class. She has made quite a few friends and has been invited to birthday parties and play dates. Something I have dreamed about for her.
Madison has been making great strides in terms of her attention span, she will look when her name is called she understands when we tell her not to do something etc. Madison and her sister have started interacting quite nicely these days.
Madison is the strongest four year old we know, and has been nick named "Houdini" at school because she can get out of anything.
Madison has started walking with one hand assistance- We have been waiting for this day for a long time and we now know that walking will be a reality for Madison in a few short months.
All the best in the new year.
Hello, my name is Madison Grace Burleau. I will be 4 years old on July 2nd,2009. I was diagnosed with Angelman Syndrome when I was 18 months. My parents new early on that there was something very special about me. Angelman Syndrome is a relatively rare genetic disorder that causes a variety of neurological problems, including developmental delay, seizures, speech impairment, and problems with movement and balance. I am non verbal and I have had hundreds of seizures. Being an Angel isn't all that bad really; I take medication to control my seizures and sleep disorder, so for the most part I am my usual happy Angelic self. I am so happy, in fact, that I laugh ALL THE TIME. This has been noted as a characteristic of my syndrome. I am very hyper and I pretty much never sit still, unless I am eating! I haven't taken any independent steps as of yet. But look out world, when I start walking there will be no stopping me. I have been working closely with my physio therapist on learning how to walk. I can use my Walker pretty well now. You may even see me lapping CHEO- I'll be the blond girl with the BIG smile. I also have a speech language pathologist, we are working on finding a mode of communication that will work best for me. She shows me a lot of pictures and boy is she animated. I also have an occupational therapist we do a lot of play therapy together. There really is never a dull moment in my life.
I will be starting kinder garden in the fall. I will be attending a developmental education class with partial integration. I am so excited and looking forward to meeting new friends. I hear there is going to be another Angel in my class. Those teachers don't know what they are in for :)
I have a little sister named Cadence, she is my best friend. I also have a Boxer named Tyson he's pretty furry. My parents are pretty cool too - You know as far as parents go. My mom is always on the computer, she says she is researching new therapies and talking to other families around the world with Angels just like me. My mom is also my personal chauffeur, and aid. My dad is my wrestling partner, and my giggle buddy. My parents want nothing but the best for me. They want to educate others on what life is like with a child who has special needs. They want people to look past my difference and embrace my uniqueness. After all 'I may not speak but I have much to say'.
Thank you Kids Come 1st for your ongoing support.
Madison and the Burleau Family.
xoxoxo
May 2009
Sept 20th 2008,
Hi Everyone! Long time no write! Madison is doing very well these days. Some seizures here and there but all in all she is very healthy.
Madison started back to preschool on Sept 8
th, 2008. She is doing so well there. What a difference going to school this year from last. No crying fits at all. None from her or from me :) She is a senior this year or veteran as they say. She has been doing amazingly well in her walker. We barely used it all summer as we did the lite gait training and just took he summer off from most of her therapies. Well you wouldn't have known it. Her teacher put her in her walker and off she went like and old pro. It was great to see.
We are waiting on her wheel chair still, by the time we get it I am sure she will be walking!! A government process- '
nough said. ADP is extremely back logged. We are looking forward to her "
razzle berry" wheels.
Madie will also be receiving a toilet support. Her long frame is just
t
oo big for any regular potty so we are getting an adapted toilet just for her. She goes potty when put on the toilet. We are the ones who need to be more consistent. If you give
Madie some guidance she always seems to amaze us with her ability to succeed.
Madison has gained a lot of confidence in the pool. I took her to her great grandmothers a few weeks back and she was standing on the stairs herself and trying to mimic me by putting her face in the water and holding her breath. VERY EXCITING.
Madie and her sister are wonderful together. They play so well together. The share toys and giggle a lot. they also follow each other around in circles when crawling. They are an absolute joy.
I have strong hopes that Madison will be walking by the end of this year, before she turns 4. All the signs are there and she seems to get stronger with each passing week.
Communication still seems to be a stuggle but we will never stop trying.
Madie has been taking some steps to self feeding with a spoon. She prompts us to feed her by grabbing at our hand- in time we are certain she will be feeding herself.
Since we have moved to our new home. Things have become a lot easier on Brad and I. We don't have to lift Madison as much. She has her own washroom with a therapeutic tub. She has her own thermostat, lift track, and ramp into the house. We are really glad we moved and can see ourselves living here for a long time to come.
We have our up and down days and lately the only thing that brings me down is having to turn down going away to destination weddings etc. Because Madison is a lot to take care of when you are not used to doing it everyday, so it is very hard to leave her in the care of others for extended periods of time. When she is older this won't be such a concern as she can either come with us or she will be walking and won't be as hard to take care of. But I guess most parents feel this way even with typical children at times. We can't do it all- even though we want to. So for now Brad and I will stick to the occasional weekend getaway to reconnect and get some alone time:)
Hoping everyone is well! Thanks for your support and concern as always!
Cadence will be turning 1 on Oct 4th and we are having a great big party for her! She is an amazingly, brilliant little person!
Not sure if I updated everyone but Madie's tournament, and the Children Come First tournament donation, and private donations have been amazing- Madie's fund grew by $9,500.00 this year! WOW!!!
Love
Sarah Burleau :)
Madie started lite gait therapy today and will be doing intense therapy over the next three weeks. We are hoping this will teach her to use her legs and weightbear. Along with being able to put two and two together on how to take a step.
Thanks to all those who attended Madie's tournament this year! We are so honoured you came out in support of her:)
Madison Grace Angelman Syndrome Open: Saturday, June 21
st, 2008
Where:
Metcalfe Golf and Country Club, 1956 8
th Line Road, Metcalfe, ON K0A 2P0
When:
Saturday, June 21
st, 2008. Shot Gun Start at 1:00pm
Cost:
The charge per player will be $110.00 for 18 holes of golf on the full course, electric golf cart, Roast Beef Buffet Dinner and a donation to Madison Grace Burleau.
For any non golfers dinner will be $40.00 but space is limited for the dinner as golfers will take priority.
Instructions:
Please submit your foursome and all monies prior to June 1
st, 2008. Checks are payable to Kim Miller. N.B Last year's tournament was our first and we were overbooked. If you are interested in playing this year please contact Kim Miller ASAP.
If you would like to donate a prize(s) please be in touch with Kim Miller the events Organizer.
Kim Miller's email address:
Kimberdip@hotmail.com
Kim Miller's mail address:
10094 French Settlement Rd. Kemptville, ON K0G 1J0
FYI:
There will be prizes, a silent auction, and fun contests on the course.
Not to worry there will be a cash bar with dinner and a drink cart on the course
J
February 23rd, 2008.
Hello everyone! Madison has received her walker, but we had to send it back for a bigger frame as she is growing so fast- the small frame would not have lasted long enough. She is using the walker at her preschool Wed- Fri. And we are anxiously awaiting her new one to come back. Madie, as you know had a bout of seizures. We recently switched her from Topamax to Lamictal- WHAT a great difference. She was a zombie on Topamax. She kept falling asleep at least 5 times a day. The change was hard on her and triggered some seizure activity but she seems to be back to her old self, and we have not seen any seizures for at least a week now.
BIG NEWS!!! Madie started using the potty! She goes at lunch and at dinner. And we are going to start time training her. I really didn't think she would go on the potty- but she did and so we are running with it!
Madie is doing very well at preschool and loves the ball pit, and weighted blanket they have there. Madie is learning PECS (Picture exchange communication system)...she can make up to 30 exchanges a day in preschool.
Madie is really getting the hang of being a big sister and has been teaching Cadence the proper way to play with all her toys:)
Madie is a pleasure as always. And is bringing so much joy to our lives. We feel truly blessed she is ours.
Madie is eagerly awaiting warmer weather. So she can swim at Aunt Dana's cottage, and in the back yard!
December 17th/07
Ok I am guilty, I haven't sat down to update this website in quite some time. I do have some excuses though. Cadence Hope Burleau was born on Oct 4th, 2007 at 9:26pm. 7lbs 2oz. She is healthy and happy and a very good baby- she does not have Angelman Syndrome. Madie is not 100% sure about her. She does like to look at her and laugh at her when she makes a sound or cries. I am certain they will be great friends when Cadence can hold her own up against wrestler Madie.
Madie started having seizures at the end of October. We truly thought we were going to be one of the lucky few who wouldn't have to live this part of the syndrome. But here we are. Madie had 4 large seizures in the span of 48 hours. She had an EEG and it clearly showed an abnormal read. She is on Topamax, she started taking 15mg, and we will have to increase it to 45mg by next week. As she just recently had a second EEG and it came back abnormal as well. We are becoming quite the experts on seeing the signs of a seizure before it happens. Her pupils dialate, she gets shaky and she is unresponsive. Her seizures last no more than 30 seconds but feel like a lifetime to anyone who is watching her little body go through them. The staff at CHEO, specifically Dr. Keene have been wonderful and have not taken our concerns lightly. He has called me at home and reassured me numerous times that we will find something that will work for Madie and the right dose at that. The technicien who was doing the EEG is delightful she has worked at CHEO for over 30 years and has spoken about Angelman Syndrome in the past. We sure lucked out with her!
I can not believe it has been nearly 1 year since the diagnosis. So much has gone on in the past year. After getting the diagnosis we felt lost and heart broken. Now we are so involved in the community...I feel it has been a blessing in disguise. It has given me purpose. I take Madie to OCTC preschool three times a week, where she receives all her treatments: physio, speech, occupational therapy, PECS, and best of all social time with other children just as special as she is. We had a fundraiser golf tournament for Madie and with the money raised we were able to Bank Cadence's Cord Blood in hopes that her stem cells may one day help Madie. Research has already started with this syndrome. We were able to get braces for Madie, special needs toys, and sensory toys, and therapies that were not covered. Madie should be receiving her walker in the new year and funds will go to that as well. We are looking forward to next years tournament June 21st/07. Without this fundraiser I don't know what we would have done this year! Thanks to the Miller Family:)
We have found out who our true friends are; the ones that have really stood by us through all of the ups and downs. Family has overwhelmed us with their support. We have met a lot of new friends through Brad's work, and the Angelman List serve. We feel we educate people wherever we go about this Syndrome. Because afterall knowledge is power right?
August 9th/07,
Madie is no longer under weight she now weighs a whopping 26lbs.1oz. 36 inches long- thats right my blond beauty is 3 ft tall. She is sporting her new AFO's and doing quite well with them. She loves swimming on these hot summer days and goes into the pool with her life jacket with some assistance of course. Madie will be starting preschool on Sept 19th she will be attending OCTC from Wed-Fri from 9-11:30am- where she will receive all her therapies including ABA, PECS, ST, OT, PT circle time and play time too- of course:) Madie is very excited for her new baby sister, Cadence, to arrive and enjoys playing in her crib and rubbing mommy's tummy. She is in for a big surprise that is for certain:) Madie is still military crawling, pulls to stand where ever she can and climbs the furniture as though it is in her way lol!- She cruises around her crib in a standing position. She uses various walkers including the Grifton and the Pony at OCTC- and the Pony at home. Madie has become quite vocal these days- and makes it clear when she wants something- especially yogurt! Madison giggles in delight when she sees Tyson especially when he rolls around on the grass. Madie has started taking Melatonin to regulate her sleep patterns as she consistently wakes at 3am and is up for an hour and then she goes back down. Madie has not developed seizures to this point and we count our blessings everyday for that fact. All in all Madie is a pleasure to have as our first daughter and makes us smile and look at the world with the excitment she does everyday.
Thanks for visiting our site- your love and support have been amazing! To date we have used some of the funds that were raised at the first annual Madison Grace Open- for her braces which were over 2000.00 the portion that was not covered through ADP was covered through the fund we started for her after the Open. Thanks to those of you who were so generous, we have also purchased some special needs toys and sensory toys- some of her meds that are not covered have been covered by this fund as well!! THANK YOU
June 28th/ 07,
Hello all I know it has been a while so I thought I would give you some updates. Madison was taken to CHEO last night for a fever. Her very first real Emergency experience. Her fever has broken a few times but she still doesn't seem herself. She was quite shaky and her eyes were rolling back in her head for few seconds. The Dr's think it was just a virus as all tests came back negative- may have been a little heat stroke as Angels are very heat sensitive. We are looking into having a special big girl bed made for Madison so if anyone knows any great carpenters please drop us a line. This is what we intend to purchase with some of the funds raised at the tournament.
Madie has been quite the trooper with her casts. She will be finished her 8 week run on July 13th/07- we can't wait to get her in a pool or lake- as water activities are her favourite. Her heels are stretched beyond 90 degrees at this point so thus far this procedure has been quite successful. She will be getting walking braces shortly after the casts are removed and has a consult with her Ortho on July 13th as well.
Madie has become a lot more aware of her surroundings and makes strange a lot more now. Its nice to here her cry once in a while. Madie got a fish aquarium and loves to watch her fish swim. Madison is going to be 2 years old on Monday and is going to be spoiled wrotten. Her first trike which seems to be angel proof, water toys, clothes, and OT approved toys. We are keeping it small this year...just close family. As Brad is working Canada Day, and I am exhausted.
I am now 6 months pregnant with Cadence Hope. She is a mover and a shaker and we can't wait for her to arrive. The dynamics between Cadence and Madison will be quite the treat to observe. I plan to go off work around labour day- no pun intended...as we all know I went very early with Madie and do not want to risk going early this time...so I will be taking it very easy near the end.
Madison's Second Annual Golf Tournament will be tentatively held on June 21st next year and will be played on the full 18- therefore opening up a lot more space for people to join in the event. We are looking for 144 golfers, sponsors, and volunteers to help make the day an even bigger success then it was this year. The feedback was positive for the most part this year and we have taken some constructive feedback into improving next years event. Kim Miller will be heading and organizing the event again- without her we couldn't possibly do this.
Thanks as always for your love, support, encouragement and friendship.
Love
Sarah, Brad and Madie:)
June 17th/07
Well the tournament was a huge success thanks to the over 90 folks who showed, we raised over $4500.00 for Madison's fund:)) We are thrilled. Look forward to seeing you all again next year! THANK YOU
May 10th/07
Hello All, Madie got casts on both her legs on Monday May 7th. She was quite the trooper. She will have the first pair on for two weeks, and then she will go for an adjustment. In total she will wear casts for 6-8 weeks. Bath time has been a challenge:) We wanted her to get braces to help her walk but we were told that she needed to have her heel ligaments stretched prior to her being able to benefit from the braces. Madie has learned how to stand in her casts. They are light blue to match her eyes! lol! Pictures to come!
We are thrilled that the tournament is sold out and some. Looking forward to seeing you all June 9th!
We are headed to Montreal on May 19th for the Angelman Syndrome Walk, sponsored by Air Canada this year.
Madison will be 2 on July 2nd/07...can't believe she is going to be a toddler where did he time go? It has definitely been and exciting journey filled with laughter and love!
Happy Mothers Day!
Mom
Happy Easter April 7th/07
Well it has been an exhausting month, I was off work
due to really harsh morning sickness. But have since
returned to the exciting world of comminications, as I
am able to get my butt out of the house now.
Madie has been very aware of her surroundings latey,
and made strange to prove my theory when we were
visiting family and friends in Toronto. She cried at
least three times. It was so rewarding to be able to
comfort and sooth her. I know that must sound a little
crazy. Madie will be getting some AFO's very soon. She
was also made a desk and chair that can accomodate her
for her PECS learnings etc. A volunteer at The Ottawa
Children's Treatment Centre (OCTC) made it for
her. I will post pics soon. Madie will be learning to
use a walker in the next month in her PT sessions.
Great news this week Madison was accepted into the
OCTC pre school and will be going 3 days a week
from 9-11:30. She starts the second week in September.
Great timing as I will be going a Mat leave then.
Madie loved the school, the teachers were so warm
and inviting. Madie will do her OT, PT, and Speech
there during those hours along with circle time, art
and plain fun. Madie crawled all over the room and
right into a pool filled with tin like paper...she
couldn't get enough. She then went to a scensory
room...$45,000 worth of lights, lava like lamps, a glow in the
dark ball pit, fibre optic carpet and walls etc...it
is a dark room that glows entirely. It was
wonderful...Madison was really at home there.
Madie has been feeding Tyson our boxer regularly and
loves being around animals so to all those who are
trying service dogs etc, it is obvious that our children react well to dogs.
Hope you are all well.
We are three months now and going for our first ultra
sound on Friday the 13th- got to love that date.
We are expecting number 2. We are very excited. I am due October 20th/07. Madie will love having a playmate. I am 12 weeks now:) I am really tired this time around- I think we may have a boy in here!:)
Tuesday April 24th/07,
Today Madie got her new desk and chair set built by a volunteer at OCTC. We also were loaned a "pony" walker...Madie is getting her legs about her and loving her new found freedom. You can see this walker in her photo's.
My pregnancy is going very well and I will be 15 weeks on Sunday the 29th/07.
Brad is thriving at his new job and on his own in a few short days! Way to go Brad:)
Hope you are all enjoying the warm weather looking forward to seeing you at the Golf Tournament.
We are going to Montreal on May 19th for the Angelman Syndrome Walk which is being sponsored by Air Canada...we can't wait to meet all the other angel families:)
All our Love!
The Burleau's
The results finally came back today- two months later! Madie is positive deletion. This is news to celebrate. It is the most common form of Angelman Syndrome...and this means chance for reoccurence is less than 1%:) Keep your fingers crossed:)
We are awaiting Madie's FISH ANALYSIS which will determine the specific type of Angelman Syndrome she has. The geneticist assures me we have less than a 1% chance of this reoccuring in our second baby! One angel in the family is enough right Madie? Not that two wouldn't be loved just the same:)
The Ottawa Police Service wore jeans to work a few Friday's ago...Brad included -there were about 30 members who participated as they were on course. They raised over $240.00 for Madison's fund. Brad and I were quite taken back. The support from the Ottawa Police Service has been overwhelming! THANK YOU
March 7th/07
Spring couldn't come soon enough! I think Madison is fed up with being dressed and undressed in her pink snowsuit time and time again (ok and maybe mom is exhausted too). It will be so much more convenient when the warm weather hits and we can just put her in the car without the tackle to get her dressed.
Madie has been making great strides. She can eat a lot of foods with her hands and is self feeding quite nicely, she is still very good at using her straw sippy cup as well. She is a lot more stable now. She tries to climb up everything. She can pull herself up to her knees at the couch, and has attempted to climb up stairs on her own too. She still loves the water. Took her swimming at Great Granny Mailhot's place and she had a ball. We immersed her right under the water, she loved it...can't wait to use her new swim suit with floats this summer. Madie is getting her very own table and chair set- custom made by volunteers at OCTC. She will be able to sit with ease and be safe when we are trying to do OT at home. There is a little belt and a cut out to bring the table right up to her belly. We should be getting it soon- stay tuned for pics. Madison has also been trying a "stander" at PT and has tried to escape it she is very strong on her legs, we are certain that once her referral for leg braces goes through she will be all over the place. Madie is still very concerned with Tyson and feeds him on a daily basis. She likes to throw her food to him or just get him close enough to her so that she can try to touch him. She has even attempted to crawl over him- he ran away- fraidy cat! ha! Madie can stay in a four point crawl position in once place but still feels the need to miliary crawl everywhere- the girl has abs of steel I tell you. Madie has also been gaining weight quite nicely.
Madison is on a wait list to attend pre school at OCTC in the fall. We are very excited about this as it will encompass all her therapies as well.
We are in the porcess of getting Madie enrolled in the Therapeautic Riding association in Greely. It is call TROTT. Hippotherapy is great for Angelman children so we will give it a shot.
Benefits of Therapeutic Riding
Development of mobility, balance and co-ordination
Improvement of muscle tone and strength
Increased concentration and improved learning skills
A challenging recreational activity
Independance, integration and a sense of achievement
Development of self confidence and motivation
Opportunity to become an elite athlete
Needless to say we have been quite busy trying to research different programs for Madie. Madison will be getting tubes in the next few month for her ears. The Dr. was a bit of a twitt...he kept saying that it would improve her speech. I was like what speech?We also had a banker who shall remain nameless repeatedly say that we could give Madie her own access card at 18 yrs old. I was like hello!!! Granted we want to dream big but people just don't get this syndrome it is a constant educating of others.We will be doing a walk in Montreal for AS it is May 19th. We are still waiting for the details and then we will post information for those of you who will be joining us.The Golf Tournament appears to be a success already Kim confirmed with me that we already had confirmation from about 30 golfers! Thanks for the support and swift action much appreciated.
February 6th/07, Well its official we are fighting for Madison's future. After meeting with a few therapists in regards to teaching Madie how to learn, communicate and play etc....it was brought to my attention that these services don't come cheap. I exhausted every avenue I could think of...haven't heard much back from Easter Seals, President Choice Charity, radio stations etc- but lets not dwell on the negative. I did hear back from CTV- they did a piece on Angelman's 10 years ago and the editor who emailed me has a friend with a child who has this syndrome. So fingers crossed on that one. My work and Brad's work are looking into fundraisers. Some family has thrown around the idea of an annual golf tournament- which would be great! We are going to get some government support no more than $7000- but we will run with it! There is a walk in Montreal in May- those of you who would like to pledge or walk with us let us know all funds go straight to Angelman Syndrome. I did order some bracelets as well about 10. If anyone would like some let me know and I will order them for you. After tax and shipping about $3.00 once I have enough orders I will order in bulk. We are going to exhaust our OCTC resources in regards to OT, PT, and ST. Well there you have it folks an update which is a little overdue.
http://home.wi.rr.com/kaja/bandofangels.html
Love Mom
January 29th/07
Hello all, we went to see a clinical geneticist her name is Dr. Graham she was a great docotor! She was a baby and people person by far! Any who she gave us great hope in having more children only a 1% chance in her opinion however we are still having a FISH analysis on chromosome 15 to ensure that Madie's AS is from deletion. We need to be sure you know!~Afterall I am a planner.
Madison has been "talking" more than usual- I can't seem to get a conversation in on the phone without her interrupting me haha! I love this of course. She has also become a lot more affectionate. Madison has also been eating a lot of bananas, cookies and wanting for whatever I am eating- so she has been sampling a lot of new foods.
Tomorrow is physio and Wednesday is OT.
Have a great week!
Mom-Sarah
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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