Wednesday, March 28, 2012
Thursday, March 22, 2012
Spring!
Time goes way too quickly.
Here we are it's already March. Ellie's been in school since fall and learning and growing in a lot of ways. I love her teachers and seeing her classmates accept and support her. It gives me hope that in spite of all the evil in this world, there is still good. Eva and I spend our days volunteering with The Bridge. We teach Adult English twice a week and coordinate the HopeRISE Program. We're working to connect, support and empower people in the name of Jesus. It's an amazing ministry that involves a lot of amazing people.
Ellie's speech device, a Echo2 with a Tobii Eye Gaze, arrived about 8 weeks ago now, it's already in for the repair of a broken screen. Ooops! We're blessed to have a loaner while hers is in the shop. Ellie has her device figured out and uses a combination of touch and eye gaze to communicate. More and more, we see her using it in a very purposeful way. She's always saying something, which IS pretty age-appropriate I guess! I feel like I'm telling her "no" more than I ever have had to before. (Simply because she couldn't ASK before!) Mostly she likes talking about food... who can blame her really?!
With the warm weather lately, we're in full swing moving towards spring. Trampolines are set up, the tractor's tried the garden once and soon we'll be putting in potatoes and carrots. The strawberry plants are popping up all over the place and we're vowing to keep the weeds out of them this year! I'm planning to share some of my garden space with friends this summer. Too many people are cramped up in apartments and just don't have the chance to grow their own food. We're all excited for what this summer holds. We'll have more crop ground than last year after all the tornado cleanup. While it's nice to have a lot of mess gone, we miss having places to park stuff and homes for our animals. A possible barn-moving and some construction of outbuildings is on this summer's agenda.
I have a stockpile of lumber for projects and I'm hoping to be able to share some of that experience with friends. A 4th of July craft booth may even be in my future.
I've been working towards a goal of running a 1/2 marathon this summer. My goal is to raise $100 for every race mile I run towards the research of a cure for Rett Syndrome. I'm up to about 9 miles in distance but I think I'll be ready for the first one this summer. I did a 10k while we were on vacation in San Diego in February and it went really well AND we raised about $400 for IRSF (International Rett Syndrome Research.) I plan to do all the local 5k's this summer as part of my training plan for the 1/2. We have a fundraising page at www.firstgiving.org. (Cure Rett 4 Ellie) If you're able, we would very much appreciate the donation towards a cure.
Speaking of a cure!~ The research continues to speed ahead. I praise God every time I read a new research article. The biggest news recently was the publication of an article in Nature (a science journal) about bone marrow transplants and some very amazing things they learned about the brains of Rett girls. While it's still only being tried in mouse-models, we're thrilled to know there are such intelligent people working towards a cure for Ellie and all the little girls like her. We're so hopeful that a cure will come soon.
Here we are it's already March. Ellie's been in school since fall and learning and growing in a lot of ways. I love her teachers and seeing her classmates accept and support her. It gives me hope that in spite of all the evil in this world, there is still good. Eva and I spend our days volunteering with The Bridge. We teach Adult English twice a week and coordinate the HopeRISE Program. We're working to connect, support and empower people in the name of Jesus. It's an amazing ministry that involves a lot of amazing people.
Ellie's speech device, a Echo2 with a Tobii Eye Gaze, arrived about 8 weeks ago now, it's already in for the repair of a broken screen. Ooops! We're blessed to have a loaner while hers is in the shop. Ellie has her device figured out and uses a combination of touch and eye gaze to communicate. More and more, we see her using it in a very purposeful way. She's always saying something, which IS pretty age-appropriate I guess! I feel like I'm telling her "no" more than I ever have had to before. (Simply because she couldn't ASK before!) Mostly she likes talking about food... who can blame her really?!
With the warm weather lately, we're in full swing moving towards spring. Trampolines are set up, the tractor's tried the garden once and soon we'll be putting in potatoes and carrots. The strawberry plants are popping up all over the place and we're vowing to keep the weeds out of them this year! I'm planning to share some of my garden space with friends this summer. Too many people are cramped up in apartments and just don't have the chance to grow their own food. We're all excited for what this summer holds. We'll have more crop ground than last year after all the tornado cleanup. While it's nice to have a lot of mess gone, we miss having places to park stuff and homes for our animals. A possible barn-moving and some construction of outbuildings is on this summer's agenda.
I have a stockpile of lumber for projects and I'm hoping to be able to share some of that experience with friends. A 4th of July craft booth may even be in my future.
I've been working towards a goal of running a 1/2 marathon this summer. My goal is to raise $100 for every race mile I run towards the research of a cure for Rett Syndrome. I'm up to about 9 miles in distance but I think I'll be ready for the first one this summer. I did a 10k while we were on vacation in San Diego in February and it went really well AND we raised about $400 for IRSF (International Rett Syndrome Research.) I plan to do all the local 5k's this summer as part of my training plan for the 1/2. We have a fundraising page at www.firstgiving.org. (Cure Rett 4 Ellie) If you're able, we would very much appreciate the donation towards a cure.
Speaking of a cure!~ The research continues to speed ahead. I praise God every time I read a new research article. The biggest news recently was the publication of an article in Nature (a science journal) about bone marrow transplants and some very amazing things they learned about the brains of Rett girls. While it's still only being tried in mouse-models, we're thrilled to know there are such intelligent people working towards a cure for Ellie and all the little girls like her. We're so hopeful that a cure will come soon.
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