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 MoreUp late tonight
No school today and I’m going to have to keep Rachel out tomorrow. LOTS of work to do for work which is awesome and I look forward to the quiet late nights. Working on getting my “ole faithful” mini christmas tree working again (fuse?) because I find the lights so relaxing late at night.
The girls and I carved our pumpkins tonight (yes, we know it was late but we ran out of time on Halloween). Better late than never is my motto on Halloween because we run out of time every single year. The girls were so thrilled to stab and gut the beautiful squash which are now glowing the night away on my doorstep.
Pumpkins 2010
Still waiting
Rachel’s rash from (presumably) Risperdal has been developing over the last few months and covers a good portion of her body. Its not an angry rash, I would say it looks more like goosebumps that are red in a few places. This medication has been good to get the ADD symptoms of Batten Disease under control and help make for a happier day for her and everyone… BUT… she has put on nearly 50 pounds since starting it. At her age she was expected to gain some weight as puberty is around the corner but 50 pounds is crazy.
I’ve been working on coming up with the next step for her medication (she, thankfully only takes Risperdal and Prozac) because this weight makes her uncomfortable. I brought a list of possibilities to the Doctor 10 days ago and we agreed to start her on Lamictal which is an anti-convulsant medication that is the only medication certified by the FDA to treat Bipolar disorder (other than Lithium). Apparently the “starter pack” of the medication is quite expensive and insurance is still taking its time…
I find this endlessly frustrating and time consuming. Making multiple phone calls to get a medication that she NEEDS for an organic, degenerative brain disease seems terrible. I’m absolutely positive that I’m not the first person with a sick kid who had to climb through hurdles and I’m quite positive that I’ll look back at this entry in a few years and laugh with all that is to come.
Read MoreLove this time of year
I love the anticipation, the weather, the thrill my kids get when someone asks “So, what are you being for Halloween?” So much excitement and easy happiness that I simply cannot get enough of this time of year.
John is making a cheesecake with Rachel right now (its 8am) and I have plans to make candy apples with them later on. My brother and nephews are coming up and we’re having a small, family Halloween thing on Sunday nigh and a friend is having a birthday party for their freshly minted 8yo daughter. 
Life would simply be perfect if it weren’t for… Can’t let myself think like that today because there is nothing I can do. We, as a family, must force ourselves to ignore the disease and enjoy this weekend in spite of the challenges brought to Rachel through her diagnosis.
Happy Halloween, everyone. Do me a favor and tell me what your kids are going to be for Halloween and/or what you’re going to do this weekend to make it amazing.
(Note: If your “amazing” is going to involve baking a cake, I’ll be happy to hand over my address. LOL)
Read MoreHad a complaint
From a dear friend who, if possible, Rachel would steal this friend’s husband and marry him one day.
The complaint is that the website background is (well, was) too grown-up and “isn’t this a website to represent a child?”. This friend is right… so I’ve decided to keep the website theme in tune with upcoming Holidays and Seasons. So if you hate the new Halloween theme you’ll only have to stick with it for a week and then we’ll be onto Thanksgiving.
The picture in this entry was taken of Rachel with her brothers about a year ago.
To everyone offering to help with the 5k, thank you so much! I will definitely be calling on all of you to help and I really appreciate the offers!!!!!!
Thinking of dropping the candle prices to $10 as a few people gasped at the price. I’d rather sell more and raise more research money than hold my head high and refuse to bend. What do you think? Is $10 a better price?
Read MoreBatten Disease Fundraiser
We didn’t get too many good pictures from the “Our Promise to Nicholas” Fundraiser last weekend because it was at night and I was chasing kids but I did get three pictures.
Saylor and Julie decorating pumpkins at the Batten Disease Fundraiser
Rachel decorating pumpkins at the Batten Disease Fundraiser
Boston (Buzz) and London) decorating pumpkins at the Batten Disease Fundraiser
It was freezing!!!!!!
Read MoreWe’re home!
We went on our Make A Wish trip to Give Kids the World, Disney, Universal and Seaworld (all down in Florida). I still can’t get over how hot it is down there in the fall! It was stressful because the kids are young and Rachel is clearly not on the correct medication but we definitely had a lot of good moments and took some great pictures! I’m glad that Rachel was able to experience the things that she did while we have usable vision. Who knows how long she will have that for. We have seen another decline in her vision in the past couple of weeks and she is starting to feel things much more rather than look for / at them.
I posted some WONDERFUL pictures of our awesome Make A Wish trip on Rachel’s facebook page, feel free to look! We met Mickey, Minnie, held an alligator, took Rachel on lots of rollercoasters and met some wonderful volunteers and people at Give Kids the World!
Julie has been having lots of meltdowns that I would expect to see a few years ago. I think part of that is she is tired but certainly another part of it has to do with Rachel and how she flips out and is so demanding to manage and refocus. Julie is definitely attention seeking and it truthfully is not surprising.
Boys are pretty much the same wonderful / obnoxious little guys that they are. London is back to preschool tomorrow and Boston starts back at his 2 mornings a week preschool that he is so excited for! I’m happy for them. Boston was so excited to go to preschool the Thursday before we left for Florida so hopefully he will transition well on Tuesday.
This coming sunday is our double birthday party for the boys turning 3 and 4. Halloween theme! I want to make it really special for all 4 of the kiddos but not make it too huge. I think either way Rachel will be overwhelmed and I might have to have my Mom take her away early depending on how she does. Who knows, she could surprise us all, right?
I was really happy to see that the University of Iowa just published a report on 9/21/09 that they have found a way to get through the blood brain barrier and treat 2 kinds of lysosomal storage diseases (Batten Disease falls under this group). Here is a link to the article on the BDSRA website:
http://www.bdsra.org/docs/research/nm.2025.pdf
I am starting to plan a handful of fundraisers, some of which will take place this year and a few in the spring. I would so love to see some kind of treatment before it is too late for Rachel. We go to the University of Rochester next week.
http://dbb.urmc.rochester.edu/labs/pearce/bddcrc/clinical_eval.htm
This just doesn’t feel like it can possibly be happening.
Read MoreOctober 2008
Here are some great pictures of my beautiful family from October.
http://picasaweb.google.com/thegoodgeeks/Halloween2008#
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Halloween Costumes
We have gone back and forth as to what the kiddos are going to be for Halloween. After a meeting of the minds (me, Rachel and Julie at bedtime on Julie’s bed) we have decided that all 6 of us are going to dress up as pirates. I’m excited and found some really cheap pirate stuff on ebay. I think we’ll hire our photographer again (my Dad with a truly “sick” camera) and make a picture of us in pirate gear as our Halloween picture.
Watch this space for updates. I think this is going to be really cool.
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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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