Sunday morning
Had a pretty good day with the on kids on saturday. I nearly cried once but held it together. Rachel got to spend 3 hours with Mary’s dog today and was in LOVE. I was so impressed how she handled him and loved him. I can see how she will benefit from her own canine companion down the road. I’m able to better understand her now that I understand the WHY now. She is definitely responding positively to my new lease on our relationship.
Today we have a birthday party to go to for one of the little boys in daycare with London and Boston. I am going to walmart to stock up on the things we eat a lot (and buy a present for the birthday party). I’ve been a little behind keeping things stocked but, again, I am thinking/hoping things will slow down.
Tomorrow I am meeting with Developmental Medicine to talk medication.
Lots of pictures tonight. Lots. I also wanted to share that:
Rachel’s favorite songs are “Sun Goes Down” by Kenny Chesney and “Honkytonk Badonkadonk” by Trace Adkins.
Julie’s favorite song is “Fidelity” by Regina Spektor
London and Boston’s favorite song is “Old Mcdaonald had a Farm” LOL
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.
Rachel was very happy with Mary’s dog, Trevor…she had something real and alive to focus on. Trevor was helping her and she was helping Trevor.
Thinking of you all. A couple of thoughts …
* Songs of Love could write and record a song for Rachel. Morgan got one and she just loves it. They tailor it to the child (age, likes, dislikes, etc.).
* Make-a-Wish, you can refer her yourself. It would be nicer for all of you to take a trip (or whatever) while she is more functional than not.
Each hospital is different, but I can give you hobby ideas to pass the time for yourself if you’re going to be stuck in one at some point.
Enjoy today, as much as you can. {{{HUGS}}}
I saw Rachel, Mary & Trevor walking yesterday.. she looked so natural with him! I have to tell you, when Rachel walked by the baseball field, there had to have been 6 kids that ran up to her & said hello.. she is truly loved by all Kate.. she is and will continue to be an inspiration to all of us. Stay strong Momma!! xo