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.

Friday, September 18, 2009

Annie's intensive therapy video!

This is the video of Annie's therasuit intensive therapy program that she did this past July. Pause the music at the bottom of the screen and enjoy! Annie is AMAZING!!!

video

Monday, September 14, 2009

Exciting Day!

It was a very exciting day in the MacDonald household. It was Annie's first day of school today. She's still at the same school as last year but has a new teacher - we absolutly adore her!!! Annie just LOVES school, she missed her friends over the summer and is so excited to meet a whole new group of friends this year! Here she is with all her stuff for the classroom.
James took the bus home from school for the first time today. (I can't believe I have a child who's old enough to take the bus!!) He did great, he looks a little worried here because he wasn't sure which stop to get off at but I asked him how it was and he said "It was AWESOME mom, you've got to try a ride sometime"!
Little Gracie will be 3 in a few weeks so she's old enough to start preschool but I can't believe that 3 years have slipped away already. I remember the day she was born like yesterday and now she's a preschooler. In my quest to hang on to my baby I have decided to keep Gracie home 1 more year and spend some quality time hanging out together. She's a little disappointed that she's not going to school like her brother and sister so I've decided that we will have a little "school" at home. Today we were practicing our shapes. Gracie did a shapes puzzle, a shapes coloring project and then a shapes computer game. We had so much fun just the 2 of us!

Couldn't love these little guys more!!

Sunday, September 13, 2009

Wonderful Daddy!

Scott has always been the most wonderful Dad anyone could ever hope for, but the past few weeks mom has been very busy and Daddy has had to be a bit more available to hang out with the kids. Scott loves his children and has completely jumped at the chance to spend more time with them, as these photos definatly show! Thank you to my Best Friend for being a terrific father and helping me so much durring this crazy time! All my love!
working on the Chevelle!

This is what Scott has hooked up to take all the kids for a bike ride. It's his bike, attached to James's "tandom hookup" attached to the girls trailer. I've never witnessed this in action because Scott takes them when I'm doing my runs but I'm told their the talk of the neighborhood! :)

Friday, September 11, 2009

RettGirl.org


Girl Power 2 Cure has just launched a new website resource for Rett Families called RettGirl! at http://www.rettgirl.org/. I hope you check it out and tell everyone about it! You can view and share everything about Rett Syndrome! Products, recipes, doctors, therapies, tips, ideas, videos, resources, fund raisers....it's ALL there! Just click the submit button to add your stuff!!! If you know about ANY kind of fund raiser, let us know so we can get it listed. If you want to sell something, donate to another family, need something... there's a spot for it all. I'm so excited about this site and have already picked up some ideas! Check out the media section and click on websites for great online games using switches!! Just think of how reassuring this site will be for our newly diagnosed families. Oh, and make sure to spread the word! For everyone who signs up for the newsletter, there will be a drawing for some great prizes!!!


Wednesday, September 9, 2009

Turning 6 and Starting Kindergarten!

James had a BIG week. This past Saturday he had a 6 year old birthday party (his actually birthday was Tues.) and then he started kindergarten today!! OK, first the party. My little scientist wanted a space themed birthday party so we did a little investigating on line and came up with a cool rocket ship craft. We spray painted pringles cans and used foam sheets to create a point that we hot glued to the top of the pringles can. We than got silver markers, space and star stickers and let the kids decorate their rockets. When they were done we had a rocket ship pinata and the kids got to fill their homemade rocket ships with the goodies from the pinata. We set up the bouncy, had Jay's favorite meal - hot dogs - (6 year olds are so easy to please) and got a great cake decorated courtesy of Meijer! James had just a couple of buddies from the neighborhood over and of course all his cousins so it wasn't too overwhelming. The kids seemed to have a great time and the birthday boy was overjoyed with all of his gifts - tons of Chemistry sets, inventions and space books! That was just Saturday. On Tues., Jay's actual Birthday, we went to Chuckie Cheese and then out for Pizza at Sheilds. By coincidence Tues. was famiy night and there was a magician. Needless to say the big 6 year old got more than enough attention for 1 year! He deserves it, he's a great kid!
Everyone got a turn wacking the pinata!
Making Rocket ships!


Dinner on Tues.
Jay's first day of school today was wonderful. Thankfully his teacher had asked for all the parents to come and stay the first hour. I was able to walk James into his school and play for a little bit, we also did a scavenger hunt to see where all the things were in the classroom and then it was time to go. James of course didn't have a problem - "Ok, Bye mom"! And to be quite honest, I didn't have a problem either. James isn't a stranger to school, he's been going since he was 3 so I was OK with leaving him. When I picked him up from school he said his day was "Awesome"! He loved school and is excited to have 21 new friends (his class has 22 kids including him!). One thing he did think was strange was that no one said a blessing before snack - public school will take some getting used to but I know he's going to do great!

Tuesday, September 1, 2009

Getting Ready for School

Annie has worked so hard this summer. Not only on her walking and strengthening but also on her communication. Annie has completely blown us away in her knowledge and ability to communicate many of her wants and needs. So much so that we recently had a neurology appointment (check up) and her doctor wants to see her back in just 3 months (rather than 6) to track her progress with communication and education. Ok, I'm bragging a bit here but I really think she deserves the credit. Our doctor asked us what we think the recent increase is due to and I simply said that we have discovered how to hear her. It's true, Annie's been "talking" to us all along, subtly, and inconsitently at first and now that we have opened our ears and discovered how to hear her her confidence has soared and she's realized that she DOES have some say in what she does, eats, plays with, watches, etc. With the increased confidence comes increased communication.

We had a tough time in school last year trying to convince her teachers and therapists of her abilities. Much of the problem is miss Annie - she is a social butterfly and would much rather people watch and be silly with friends than concentrate on her work. We have worked on Annie's ability to concentrate in OT this summer - using light boards and trying out different glasses and goggles that might help Annie focus her attention (note to self, Annie does NOT like glasses and goggles :). We were determined this summer to really work on communication and learning, not only for school but also to get her ready for the MyTobii P10 eyegaze computer. Our goal for the summer was to learn our numbers, colors, shapes and letters. Yes, ambitious, but what I discovered was that she already knew some of these things (like shapes) when I first took out the flash cards and quizzed her she got almost all of them right! And why shouldn't she have, she's been listening these past 4 years and taking in information, again, we just needed to find a way to be able to listen to her. We ended up becoming very good at our colors, shapes and letters but unfortunatly didnt' get to our numbers this summer.
I think the most frustrating part of all of this is convincing others of her ability. When someone is unable to speak many people assume they aren't smart or they can't hear or that they have nothing to say. Nothing could be further from the truth - I've often said that once Annie is able to talk she's going to rack up our phone bills talking to all of her friends! And I am constantly trying to get people to "assume inteligence". I truely believe that the problem lies with us "able" people, WE need to figure out how to listen differently rather than trying to get "differently abled" people to "talk" our way.

I pray that Annie continues to be able to communicate and learn throughout this school year. We are trying to come up with ways to help Annie concentrate and give her every opportunity to "talk" throughout her school day to her teachers, aids and of course her classmates. I've stolen lots of ideas from other rett moms (thanks Kelly!) and I'm really excited to start fresh this year. School starts on Sept. 14 with a brand new teacher and classroom - we're so excited!!
This is Annie's eye gaze communication board - Scott made it out of PVC pipe then we put velcro pieces all around the perimiter. Right now Annie uses it to decide between 4 choices but we can add ass many choices as we think she can handle. It's nice and light weight to.
This is my view when we are communicating. I hold up her communication board and look through the middle of it so I can easily see what card she's looking at. When we are learning I ask "Annie, tell me where the letter G is" and then she looks at the card with the letter G - then I throw a wild party and smother her with hugs and kisses!! ;0) Smarty Pants!

These are some of our flashcards for learning. Just your typical, dollar store flashcards, we just hot glue some velcro on the back so we can attach them to her communication board.

Annie also uses yes/no cards all day long! These are invaluable, especially when we're out and about, it's so easy to just ask yes/no questions and bring these two cards along. We also have more/all done cards. Lots of copies so we can put them around the house, in the car and at Grammys!

you can't see her eyes here but I just asked her if she wanted to take a bath, see what she's looking at? Her "Yes" card - she loves the bath!

There's so much more. We have an entire binder full of pictures of outdoor things, books, toys, places, people, etc. so Annie can choose what she wants to do and play with. We also have "menus" so Annie can choose what she would like for breakfast, and to drink (lunch has too many options and dinner she's limited to what mom cooks ;0). We try to give Annie every opportunity to communicate. I love watching her face light up when she gets the right answer and how happy she is when she is able to do what she wants to do. We are planning on making an "Annie book" hopefully before the first day of school that tells all of Annie's favorite things - not the things I think she likes but actually the things she tells me are her favorites! I love learning more and more about her, she is such an amazing little angel!