Today is a great day!
Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol). I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her. Thank you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years. :)
I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months. I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks. I guess my Mom had mental telepathy and for that I am so grateful. We have one official walker!!!!
This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf. Plus the prizes and raffle items. I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday. They raised about $30,000!!!! My goal is to raise $10,000 this year for our walk/run/raffle.
Have a great day today if you read this entry!!!
Photo: Rachel (6), Kat (?) and Julie (2.5). Not really easily seen is London who was 8 days past his due date and born the next day. We were at a pumpkin patch in Colorado.
Read MoreGrand Mal (Seizure #3)
At around 8am today Rachel had another seizure. She was taking her pills with John (had swallowed 2 of 3) and she went into a trance and started turning her head almost in rhythm with the gears of a clock’s “seconds” hand. Couldn’t get her to reply and we laid her on the couch on her side. Convulsions lasted for minutes and I administered the diastat rectally.
I’m sure some people read this blog and think that sucks and on some level think that this is normal and expected. Not a big deal. But this is my healthy kid and this is only the second seizure we’ve seen at home.
This is scary. It makes my stomach hurt. She might be terminally ill but she is healthy on the outside and seizures are harder for me to witness than the night I got her official diagnosis.
She is passed out on the couch missing a fun day of green. So unfair.
Read MoreRare Disease Day!
Today is the official “Rare Disease Day” of the year – 2/28/2011.
As you already (probably know) Rachel has a very rare and fatal disease. The Batten Disease Disease Support and Research Organization funds thousands of dollars for research work into this disease.
Please consider donating to the BDSRA in Rachel’s honor. Thank you!
http://www.bdsra.org/donate.html
Read MoreFirst Grand Mal Seizure
Forgot to mention this on the blog (for the record) that Rachel suffered her first Grand Mal seizure on Sunday, February 6th 2011. It started off with her spinning our container of flour repeatedly after being asked to put it down (or it will spill) and she could not snap out of it. She slowly leaned back towards the kitchen counter and I grabbed her and laid her on the ground. She then started convulsing for about 2 minutes.
No diastat was used. No 911.
She woke up later on with a screaming headache and was irritable beyond belief. By the end of the day she was better (she slept most of the day away).
Read MoreBusy week
Lots of good stuff going on with work, Rachel changed to a new medicine and London was covered in spots (the chicken pox). Rachel has lost about 6lbs (I’ve found at least that much) and we ended this week with a ham dinner with my parents and brother.
Rachel watched “Ice Princess” tonight which is a movie that she used to watch A LOT but hasn’t seen it since going blind. She kept on saying things and asking questions that only a sighted person would be able to ask / say but it was obvious that she was recalling the visual memories of watching the movie years ago while listening as a newly minted blind person. I can’t describe the complexity of how that broke my heart in at least 3 different ways.
You may not know that I often refer to myself as “The Iron Maiden” because I “never” cry (it is a rare event) but thinking about what it must be like for her to not be able to see, how confusing things are for her. It sends me over the EDGE and my iron clad tear ducts fly open.
Tomorrow I am taking the girls for haircuts. Julie says she doesn’t want hers cut but will come along for the ride. Rachel needs her bangs trimmed. I believe Julie is declining the hair cut because she is obsessed with becoming a princess and I am guessing that she thinks all princesses have long hair. I should show her pictures of Lady Di and cross my fingers that she agrees to getting the wedge cut again (she looked so cute in that!).
Read More
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.
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