This is us

Well, our school year is off to good start. Tacy is really excited to take a spanish class this year. She also loves acting and reading. Alessandra rides a bus and goes to preschool, she really loves it. She pushes her little walker out to the curb and giggles all the way. Wesley likes math, history, and especially the Young Actor's Guild. Emerson likes reading, Young actors Guild, music, art, and math. They are all starting to play the recorder and the Dulcimer. Donavon is quite bouncy still, but he reads to me and we enjoy hanging out and learning about ancient Egypt. AndiLynn pretends she's doing school work and colors on every surface imaginable. This is supposed to be our last year of homeschool, but I'm not sure I can go without them for 6 whole hours! They are so much fun to be with.

ALLY WALKED

Can I put that any bigger? ALLY WALKED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She took about 10 steps on her own, with me behind her to catch her when she tipped. It was on grass, too!!!!!!!!!!!!!!!!!!!!!!! Major uneven terrain- but she wanted to get on a trampoline!!!!!!!!!!!!!!!! (This is not her walking, I couldn't get a camera, I was the only adult there)

PS (read "We're Home" first)

PS we did find the Baby and the credit card :) we just can't have enough fun. Just so you can all laugh too, It was Jesse who lost the baby when he tried to go shopping with the kids while I was in the conference- he wouldn't go anywhere without me after that

:)

We're Home

We had the amazing opportunity to go to Florida to the Angelman Syndrome Conference. It was amazing and a little overwhelming. We learned a lot and met a lot of truly amazing people.

Funny stuff- we lost the credit card, wrecked the rental car, lost the baby at downtown Disney, and we all came home with the flu

Also amusing was taking six kids through security with all of Alessandra's medicines and breathing machine, etc. (TSA LOVED us, I could tell)

We did take the time to visit DisneyWorld, and go on a Air boat ride to see Alligators-cool stuff.

We also got to visit my cousin who lives in Orlando- Thank You Aaron and Krystal- they were awesome, too.

Tacy's Art Project

I made a art project from an art lesson about indians. It's a basket made from paper I painted it green. I drew a story that starts with it raining. Next, it shows a flower growing. Then, it shows a horse shaking its mane. Finally the horse dissapears and two people holding hands appear. I want to show a picture of it.

By Tacy

Angelman Syndrome Foundation Walk A Thon

Okay Everyone- this May 16 we are involved in a Walk A Thon for the Angelman Syndrome Foundation!!! For those who don't know what that is let me share...

Angelman Syndrome is a neuro-developmental genetic disorder that affects every part of a child’s life. There are many symptoms, such as seizures and severe developmental delay. One of the best things about the disorder is that she is happy most of the time. One of the hardest things about the syndrome is the difficulty communicating. It is expected for our angel to only be able to communicate with 2-3 signs or gestures throughout her lifetime. We've heard more promising numbers recently, but communication is still a major hurdle. Angelman Syndrome also gives her severe ataxia and hypotonia which means she has about a 50% chance of walking independently.
Our little girl, Alessandra was diagnosed shortly after her first birthday. She was not able to crawl or sit up unassisted at the time. We have worked very hard with various therapists to encourage her in functional skills such as crawling, sitting, walking, and eating. She is now 3 and we have been overjoyed to receive her first walker, allowing her some freedom and practice with walking skills. We hope that she will be one of the angels who earn their feet, so to say, and be one of those that is able to walk independently someday.
Angelman Syndrome Foundation was established to raise money for research and awareness. They were our first and best source of information when we received Alessandra’s diagnosis. They help families, caregivers, and even the doctors to know more about this rare and relatively unknown disorder. We want to help them do the work they do, which in turn helps us and thousands of other families as well. The research that ASF (Angelman Syndrome Foundation) has funded includes; studies on the best educational avenues, therapy options, and alternative communication strategies for our angels. They are also funding genetic research with hopes to cure or greatly improve the difficulties of the syndrome. They have earned a 4 star rating from CharityNavigator, an honor that only .08% of non-profit organizations have received. This shows how very committed they are to fulfilling their goals of research and awareness.

Also- Alessandra is going to walk-in her walker the entire mile of the walk, So please if you can- register to be a walker at http://www.angelman.org/ , or sponsor her at http://www.angelman.org/ForAlessandra

Family Resemblance

As AndiLynn's first birthday approaches, I can't help but look around at my little family and marvel at how they have grown. I found a picture of all the kids when they were about 1 year old. It was a lot of fun. Though now, I have begun to wonder if I'll know who's who in a few more years!

This is my four big kids making a gingerbread house. You've got to love all the frosting around their mouths :)
Merry Christmas!

Crazy Life

We have had so much fun it's hard to take the time to type anything in. Our most wonderful moment of the last several months was the arrival of Alessandra's walker. She walked and giggled and walked some more. We had not had any luck convincing Alessandra to hold on to any of the walkers at the therapist's office. We had tried tying her hands on and taping them on with the special tape they use in hospitals. We didn't know for sure if Alessandra would even be able to use her walker, but the minute it arrived she grabbed on and walked!!!

You can see her in this picture with the belt holding her in, she no longer uses the belt. She realized that she could roll by relaxing into the seat and scooting, so we had to take it away. She can walk about 1/3 of a mile right now, This is one of our miracles