Thank you
Thank you to those that emailed and commented on my blog. It does make me feel better to be heard and not “suffer in silence.” Really I am not the one who is suffering but it is very painful to have a front row seat.
And thank you to Veronica at ATT Wireless who kindly cancelled Rachel’s cell phone and waived the early termination fee.
Better day today. “Better” is a relative term I should clarify. I still had to lay her on the floor with a rolled up towel under her head for a pillow and pin her body and arms down so I could brush her teeth and she tried to spit in my face in the process but the bottom line is that I got the job done. I hope she is having a good day with the Melissa & Doug music set I got for her this week. She was unhappy with music class this week because she couldn’t sing YMCA (she can’t mentally keep up with the song and can’t see the arm movements) and she actually was able to tell me “I can’t keep up.” I can’t imagine. Hopefully her person (Mrs P) isn’t suffering from a headache right now. 
Julie is at home with me today with a hacking cough. She isn’t sick, just sick of coughing. (And she is eating oreos next to me right now).
If anyone has any grocery coupons they no longer want / need I would be very appreciative to have them. I am trying to cut down our food bill as much as possible.
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 just read your last post and burst into tears. You ARE suffering, right along with Rachel. And you deserve support, and to feel pain, and injustice, and grief, and anger, and anything else. You, my friend, are living a worst-case-scenario situation that no parent should ever have to go through. You have my support, as always, and my love, as always. You, Rachel, John and everyone else in your incredible family.
Wishing you the best *hugs*
I love you and hope you still feel comfortable calling me when you need to talk. (((HUGS)))
I am always here for you!
Looking forward to Rachel sleeping over tonight. Hope Julie is feeling better.