September 11, 2009
Trash day was friday this week because of the holiday. Forever and always the best day of the week.
Rachel has been battling an uncomfortable itchiness and was sent home from school twice this week and was out on Thursday. Our primary care doc called in a prescription for “difulcan” and I’m hoping we’ve seen the last of this. Not fun for her and it has been interrupting her sleep. We NEED her to sleep. She needs her sleep.
We leave for Disney in a week and the kids are starting to get excited, Julie more than anyone! I am trying to gear them up for the limo, airplane and trip without causing Rachel any unnecessary anxiety. Our new “Neuro-Pharm” Dr aka Psychiatrist has given me some attavan to try in the event that we need it. The first two test runs produced no results but I will try a third time prior to the airplane so I have a trick up my sleeve if she “flips out.”
Julie started Kindergarten and her meltdowns have become frequent again but I am sure things will slow down once she gets back into the swing of things. The bus is so noisy in the morning that she now absolutely refuses to ride it so we have been driving her. She does take the bus home (more seats because the half-day Kindergarten students have already gone home). I think she likes her new teachers and all of her friends.
London started preschool and is enjoying it! That was totally expected because he has the same teacher that Julie had for the last 2 years! Mrs Menice made me smile when she told me that she sees a lot of Julie in London… I guess I never realized that they are so similar. Totally wonderful kid, I am happy that he has the opportunity to go to school!
A professional photographer, aka Lisa Gilbert, had the daunting task of taking our family pictures this past Wednesday. Professional family photographs was a first for our family of 6. Lisa was very nice and energetic and has a great personality, I was really impressed with how well she meshed with our chaos. I would imagine that she can mesh well with every family and that is part of what makes her good at what she does. Once we have some proofs I will be sure to share them here. This is her website: www.lisagilbertphotography.com
1 week until Disney. I hope Mickey is prepared for us. 
Maybe I should send them our mug shot before we head down there? Ha Ha. Maybe I should just sent a picture of Boston. He wore the “devil ears” during our photo shoot with Lisa, definitely a fitting head piece for him (he rocks!).
This is where we are staying: Give Kids the World. It is this amazing place for children with life threatening illness and is a treasure as much as Disney World is: http://www.gktw.org/
I HATE that we, as a family, are eligible for something like Make A Wish but SO GRATEFUL that these organizations (both M.A.W and G.K.T.W) exist. So, so grateful.
There are many people that I am grateful for. Mrs Petrocelli and Mrs Donato, Mary, my Mom, Ceil at Sunshine Pet for Holly, Amy at BDSRA for the information and Batten Disease DVDs, Lauren at Make A Wish for expediting Rachel’s wish to “beat” the blindness, Pamela in MN for the postcards, Auntie Janelle for the stickers, Ed for the VEGGIES, Xina for organizing the dRaffle, for Lauren and Mommaville for hiring Lisa to photograph my family, Uncle Adrian for coming to stay and being great to our kiddos.
The University of Rochester is having Rachel (and me) come for a clinical rating in October. I had originally planned to drive until I realized that the trip takes about 7 hours so we’ll fly out there instead. U of Rochester pays for the travel and one night in a hotel. I have managed to get Rachel’s appointment on the same day as my new Batten Mom friend (Heather) is bringing in her (also newly diagnosed) son. It will be nice to meet her and observe another JNCL child who is about the same age as Rachel. It is such a rarity to meet another JNCL child and I am grateful for the opportunity to meet him and his Mom.
The week after Disney and the week before University of Rochester we are having a birthday party for the boys turning 3 and 4. I can’t believe the boys are turning 3 and 4! Every occasion is being treated like this is the last one that Rachel will see. Long-term memories will be important down the road so I want to make them as best as they can be.
One day the memories will be all I have left of her. Such an extreme and almost intangible concept to process.
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 grateful that I am on your list of people:) Love everyone one of your little kiddles.
I cannot wait to see the family pic!
I hope you guys have a fabulous time at Disney. Do you need anything? What can I do to help you make this as special as it could ever be? I hope the pictures are in soon, I can not wait to see them. I hope that your first photo experience will lead to many more.
Love and hugs. Miss you!!!! XOXOX