Monday Update
Rachel started on her first day of the last two weeks of school today. She was not feeling very well yesterday and ended up waking up about 8 minutes before the bus comes to pick her up. She was very excited about going with Mrs Cross and she got ready fairly easily. Still had trouble with hair, teeth and shoes but I never expect that to go very well. I’m concerned about next years placement but I am going to try it out and see how she does. I think she might have had a seizure a few days ago because I found vomit in the upstairs bathroom sink and none of the children will own up to it. If the three little ones had puked they would have come into bed in the middle of the night. If Rachel vomited and doesn’t remember it very well might be seizure related. Its hard to pick out what is Batten related and what is regular stuff.
Julie started Park and Rec today, it is the town run summer camp that goes for another three weeks. I was terrified to send her but she really wanted to try it out and it is directly across the street from our house on the L Street field. I’m sure she is going to be fine because she is really independent but I still worry. A lot. It will be good for her to break out from the house for a few weeks before starting Kindergarten and get a good tan.
London and Boston are with Linda today until 3. London was very upset that he isn’t old enough to go to camp with Julie but he is excited that he is old enough to start preschool in the fall. He wears his backpack around every chance he gets. Boston just wants to be fed and watch “Tokyo Mater” over and over again.
John and I are hanging in there. I walk around feeling really sick to my stomach and he walks around with a splitting headache. Either of us can cry at the drop of a hat. We took the kids to see Gforce on Saturday and there was a scene that set me off but no one saw. It is nice to get out and do “normal people” stuff while we can with her. Taking her out with the other 3 can be totally overwhelming for her and she can’t enjoy herself so I am trying to take her out more by herself or just with Julie. People ask me a lot how they can help and the only thing I can think of, especially those who are far away, would be to send the kids mail. If you only send mail to Rachel the other three will feel left out and I’d rather them not know for as long as possible. There will be plenty of time where the other three kids will know something is terribly wrong but I’d like to prolong that time as much as possible. Here is our shop address , I’d rather not post our home address publicly:
The Good Geeks
667 Nantasket Avenue
Hull, MA 02045
Attn: vT Kids
The kids love mail in general, stickers, postcards, etc. This isn’t a request for mail so don’t feel obligated, I just wanted to share a way that you could do something since several have asked.
I took some pictures of the three little ones yesterday playing in our teeny pool. Might try and post them soon. I’m not feeling very motivated today, it is taking a lot of effort to put on a good show for the children (although I am doing it). Takes a lot out of you to look normal but still plan for Rachel’s future.
I’m trying to decide whether or not I want to get involved with the fundraising that this disease needs to get more information and eventually a treatment/cure. I need to think about it some more. I’m most focused on keeping life normal, making money and deciding what to do for Rachel and her education as things progress. I feel strongly that we need to live close to a school for the blind and have been putting some time into researching those options.
I’ve also put a call into “Make a Wish” to see if they can do something for Rach before she loses more vision and cognition.
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.
I am here for you, you know that right? Call anytime!! I will have the kids send mail to your kids, they will get a kick out of it, especiall, Collin, Courtney and Julia. They love stuff like this.
Let me know on the fundraising, you know I am ready to help out where needed! Love you!
You know I’m here for you. We need to talk. Call me.
Love you guys.
Hey you! Expect some mail from Canada.
Could you email me the kids’ favourite cartoon characters? mavenmayhem AT gmail DOT com.
Thanks, hun. Love you lots *hugs*
Kate, I was thinking about fund-raising and all of the effort and stuff that goes along with it. I was reading Taylor’s Tale and the thought popped into my head. But where to start and begin?
Rachel was so tired last night. I was in a dark mood and really enjoyed an opportunity to hang on the couch with her. Her head seems to be hurting recently. She is a great snuggler.
She slept well and magically appeared in bed with Momma.
Not sure if this is helpful but Tucson has a good deaf and blind school. Not sure if it’s as good as the one near you.
http://www.asdb.az.gov/southern/tucson/asb/asb.html