Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.
Annie learned how to crawl on all fours when she was 18 months old in therapy. It took a lot of time, hard work, and a lot of screaming but she mastered it. We had worked so hard at learning how to crawl that we hadn't given much thought to walking. After all, you have to crawl before you can walk right? And at this point Annie wasn't even able to stand by herself... or so we thought. One night while we were working with Annie we got her up onto her feet, steadied her, and let go. Low and behold the child stood all by herself! It was a mere 2 or 3 seconds but it didn't matter to us, we thought she was so strong and made sure she knew how proud we were of her by going into a cheer fit and smothering her with hugs and kisses! We got her up a few more times and she continued to show off for us. As we watched her we realized that her ankles were very weak. We thought if we could just somehow get her stabilized a bit more maybe she could stand for longer. Our idea - purple winter moon boots (I know I'm dating myself a bit by saying moon boots right?). Well, we strapped those boots on her and brought her to her feet and what do you know, our plan worked! Annie was now able to stand for a good 10 to 12 seconds!! More crazy proud parent moments! Now that Annie had proved to us that she was able to stand all by herself the next logical step was to start taking steps. We grabbed a little tykes shopping cart that we had for the kids and placed her hands on the handle bar and started moving the cart - Annie's first steps!! What excitement we felt knowing that Annie was capable of taking steps. We worked so hard at this every single day, hours and hours and hours of getting her to her feet, helping her grip the shopping cart and slowly pulling the shopping cart until her feet would step forward. Annie continued to improve, she was able to stand for longer, her walking time increased and eventually she was able to push the cart all by herself and was essentially walking with assistance. [Sidebar: the boots and the little tykes shopping cart are still the best "AFO"'s and "gait trainer" that we have ever come across - and the most economical too!] Annie has always had trouble sleeping so while we were going through some really rough sleep patterns we tried to channel her energy into therapy. Typically trading off bringing Annie down to the basement at all hours of the night and getting her up to "walk". Back and forth from one side of the basement to the other, its a wonder she didn't wear a path on the carpet. Since the time of Annie's first steps we've had strong days and not so strong days. Weeks when we have spent hours on therapy and weeks where we hadn't had time to spend even a half hour, but the goal has always been the same - to get Annie to walk independantly. Through the years we have seen Annie get stronger, have more stamina, improve her gait, learn how to weight shift, and just recently we have gotten Annie to bend her knees when she takes a step (try taking a stepor two and be very concious of all that your body does just to put one foot in front of the other - now praise God that He has allowed you to walk). Walking would open up a whole new world for Annie. She would actually have a little bit of control in her life - walking where ever she would like, not to mention that it may be a bit easier on mom and dad not having to carry her everywhere. But walking is also weight bearing exercise which is so good for Annie's thinning bones, not to mention how much it would help with her scoliosis not having to be sitting all the time. We have made walking a priority for Annie and have tried to do everything we can to help her. We do most of Annie's home therapy in the basement (aka play room, work out room, craft room). We work with her a lot and still to this day use the little tykes shopping cart. Now that Annie is so used to be up and on her feet and is much more stable than her earlier years we are confident in her abilities and don't have to be directly behind her to catch her when she falls (although we'd never dream of turning our back on her). This has allowed us a little more freedom when we are doing therapy and me, being the busy mother of 3, I'm constantly looking for ways to multitask. Sooooo, we've decided to have our workouts together! I get Annie up on to her feet, help her grip her shopping cart and then I hop on the treadmill! It's wonderful! We both get in our workouts and I don't feel the motherly guilt of having my daughter just sit while I'm running. I set Annie up close to me so I can watch her the whole time and I'm able to hop off the mill if I see her start to fall. I also hop off from time to time because she's not able to turn yet so if she hits the end, I just turn her around! We have a lot of fun together, I shout out to her how much time she's been walking and she just giggles and smiles! We have been increasing her time slowly and just yesterday she stood/walked with her cart all by herself for 30 minutes!!! Annie is amazing!!
Annie with her "boots" on - getting a little kiss from her cousin!
Sorry I haven't posted in awhile. The kids have been keeping us very busy with their schedules lately. James has just recently started Karate and Gracie is doing gymnastics. Take a look!
I'll be sure to get more karate pics, these aren't the best, Annie wasn't thrilled about being there so I had to sneak some pics through the door! This girl was built to be a gymnast - too cute!
On top of Annies typical Pysical therapy and Occupational therapy she will be starting an intensive therapy program called the Lokomat next week (God willing all goes well with the insurance approval!). We're thrilled to have the opportunity to utilize this therapy. This is one of only 6 pediatric lokomat suits in the country and it's only about an hour away! I'll be sure to post video.
Angela Martin is a mother to a rett angel and has once again made it to Hollywood on American Idol. Angela is such a fighter she is a single mother, her daughter has Rett Syndrome, her father was killed 2 years ago and her mother was missing just last month. With all that heartache this woman is still going, still giving it her all and still reaching for her dreams all with a smile on her face - what an inspiration!!
So the girls and I decided to make some guacamole (all 3 of us just LOVE guacamole!). I hooked up Annie's powerlink to her switch so when she hit her switch the little chopper got power but then Gracie needed to push the button on the chopper in order for it to chop and blend. In a nut shell they needed to work together to make the guac. This video is just too cute!!
Let me introduce you to Ingrid Harding. Ingrid is the founder of Girl Power 2 Cure (the organization that I am a part of as the mothers advisory board) a 501c3 non-profit organization that raises funds and awareness for rett research. Ingrid is the mother of an angel. When given the diagnosis of rett syndrome for her daughter Ingrid decided to do something about it. That thought has grown into an amazingly succesful organization. Ingrid fights tirelessly daily for all of our girls. She was recently on Parents TV sharing the story of Sarah, her beautiful daughter. Thank you Ingrid for all that you do!
Click HERE or on the image above for details!My hope is that this movie so so inspirational and motivating that we can get LOTS and LOTS of people psyched up to join us in April for our Dress Up 2 Cure event! After all.....we want to "Make our Miracle Happen" and CURE Rett Syndrome!!
Annie's 5th Birthday was Wednesday and her Chuck E. Cheese party was last night. What a blast! Annie had such a great 2 day's - tons of smiles! It was so great to see all of Annie's friends last night. Obviously Annie is unable to tell me about her friends at school and who she plays with (although her teacher does an amazing job filling me in!) so it was great to see the happy faces, the interaction and the friendships (and crushes!) that she has made throughout this school year. Each and every one of Annie's friends has a special place in my heart, what wonderful kids!
Miss Colleen (our respite care) got Annie this great parachute!
James wrote Annie a card and the then the little inventor made a balloon carrier to deliver his card to her.
Look how happy!
Just look at this party outfit - compliments of Aunt Jen of course!
Annie with Grammy and Grampy!
Look at that smile!
Too much party - Annie cashed out before she even opened her gifts!
Yes, I know, no pics of friends - I forgot to ask the parents permission to post pics but trust me when I say they are adorable!! Thanks everyone for making Annies day so special!
Extraordinary Measures is a movie about a father who recieves news of his newborn son and toddler daughter being afflicted with Pompe - a fatal neuromuscular disease. John and his wife decide to make it their lives work to save their children. It stars Bendan Fraser and Harrison Ford and is based on the real life of John Crowley.
Please also visit the Rett Syndrome Research Trust Blog to read an interview between Monica Coenraads and John Crowley. Both of these tremendous people work tirelessly for their children and the families who are afflicted with their respective diseases. They give hope and inspire all of us special needs families to reach higher, dig deeper and to keep going even when it seems impossible. Many thanks to Monica for all of the amazing work she has done for our girls and all that she continues to do!
With the kids back to school I have a moment to post some of the things we all did over the Christmas break. Here's Annie with her new Girl Power to Cure pin on her hat! Too cute! Thanks Ingrid! We went bowling with the kids - It was Annie and Gracie's first time bowling, what a blast! We also made cookies which isn't typically a big deal except this time Annie got to help!! Her school let us borrow a powerlink so we could hook up the mixer to her button and she could control the mixing! Here's a video of Annie's first time baking cookies!! For some reason the video isn't uploading, I'll try again later - its really cute!