Golden Tickets
Yesterday was the Hull Holiday Showcase and there was a BATTEN DISEASE TABLE thanks to Geri Calos, her kiddos and the extremely mature “Hull Theatre Arts” (aka Drama) kids. Many, many thanks to the kids that sat at the table all day and helped little kids glue, stick and tape ornaments together to raise money for the Batten Disease Support and Research Association!
The Hull High School Theatre Arts is putting on a play in 2 weeks and we can’t wait to go! Willy Wonka and the Chocolate Factory is currently being advertised on Rachel’s new shirt that she bought at the holiday showcase yesterday. She is very proud to be advertising with the new shirt. I tried to take a picture but Rachel couldn’t stand still long enough for me to snap a picture of it.
I’ve been spending some time trying to learn ways to naturally clear out Rachel’s cells via diet. Last night she had a ridiculously huge portion of haddock. Julie and London wouldn’t try it and Boston gave it a taste but thought it was “yucky.” I’m not a huge fan of fish but I’ll learn to like it if that means we extend Rachel’s “good life” longer. I’m not going to try and extend her life just to keep her alive. Quality of life is my NUMBER ONE priority for Rachel.
Today is Sunday and we are having our usual lazy day on Sunday. Laundry, dishes, play at the park and maybe build another shelf for toys. I’m also planning to take Holly on a couple of walks and bringing a different kiddo each time.
Thinking about christmas and trying to think about what to get the kiddos. Does anyone know if they make a half a bike that I can attach to my bike for Rachel. I’ve found lots of tandem bikes but her legs aren’t long enough for a tandem adult bike. I’d like a second seat, wheel and pedals that can attach to my bike so we can ride together. She needs more exercise than she is getting and I know she loved riding her bike that summer.
Life rules. Enjoy your Sunday!
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Kat –
Look for a trailer bike, or a tag a long. I got H3′s on Craig’s list for $25 (used) Rachel is big enough that you would want one that has a 20″ wheel. H1 can still ride on H3′s, so it still fits 9 year olds with no problem. I have also seen people take off the seats on the trailer bikes and put a recumbant bike seat with a back and a seatbelt for kids
I wish I would have stopped that lady that rode by our house one day on a strange looking bike with her child. It was kind of that way. It was an adult bike that like had a mini bike attached on the back of it. I don’t know where she went (I’ve never met her) and I probably won’t see it again until next summer.
Hope you have a great time at the play!
Finally, something I can help you with! I think this is exactly what you are talking about and should be perfect for Rachel. Happy Trail:)
http://www.target.com/WeeRide-Co-Pilot-Bike-Trailer/dp/B000I4255G/ref=br_1_2?ie=UTF8&frombrowse=1&searchView=grid5&searchNodeID=49941011&node=49941011&searchRank=pmrank&searchPage=1&searchSize=30&id=WeeRide%20Co-Pilot%20Bike%20Trailer
Most of the “trailer bikes” are made for younger kids. This one is designed specifically for those who are 7-10 years old:
http://www.trail-a-bike.com/product/trail-a-bikes/original-folder-24/
I have a good friend who is a cycling enthusiast. Let me see if he knows of something else….
Oh, and I love, love, love key lime pie. It is one of my faves.