Butterflyaway

To all our local network:

Kathy Lesher, the social worker from Noah's Children, suggested we have an event for children before Charlotte's passing as a way for them to prepare for it and to say goodbye. There will probably be more than one and the first will be this Sunday, December 27th at 2pm. For want of a better title, I'm calling it, "Butterflyaway" and it will be short and simple. We'll read the Very Hungry Caterpillar, do some butterfly arts and crafts in the art room, and then the kids can play in the gym for a while.

Charlotte will not be there which means either Rachel or I will not be there but the other one of us will be.

Kathy will also be available to answer anyone's questions. She might also enlist the aid of an organization called Full Circle Grief Center.

This event is free and open to absolutely everyone. Please email me if you plan to attend. We will open the 4:00pm slot as well if there is signifigant interest. A third possible event could be Sat, Jan 2 at 5:00pm.

This is extremely short notice, I know, so I'm hoping I could talk everyone into spreading the word.

CJ is resting comfortably. There have been many, many wonderful readers through the house and she has been awake about half the time. We've moved her Dexamethosone back up to 3ml from 2ml to see if that will help her swallowing difficulties.

There is an accupressurist/accupuncturist coming over tomorrow who has been recommended by Dr. Anna. Her name is Elizabeth and she told me that she has worked with a patient with swallowing troubles before and has had significant but temporary success improving the patient's ability to get food down. Temporary is all we need.

As I type this, I realize this is the anniversary of my Grandpa Homer's death (Dec 23-This will probably post after midnight). This kind of stuff puts quite the surreal tint to the holidays, doesn't it Gramses?

One more radiation treatment to go!!!

One more radiation treatment to go!!!Thursday was a pretty easy day. Not much to report. We did go with Halle and her mom to the Children's Museum. It is FREE on Thursdays from 5-8 PM. Since school is back in session in Texas, the crowd wasn't TOO bad. The girls had a great time exploring all the exhibits.Today we had our penultimate radiation treatment. We are getting very excited. Charlotte also got to see our friend Talia ring the bell for the end of her treatment (YAY). After she finished and was waking up, I gave her the Chocolate Milk (Instant Breakfast) that has become her routine post-treatment. She started gulping it down. Then one of the nurses brought her some more food and she ate two small chocolate doughnuts a shortbread cookie, and a handful of grapes (why do i feel like I'm retelling The Very Hungry Caterpillar?) We got back to RMH just in time for lunch (well, I was hungry!). Now Charlotte is watching movies and I'm going to have my "rest time". We have tickets this evening for a Luma Light Show over at the outdoor theater in Hermann Park and we are going with some of our friends from RMH. Tomorrow will probably be some packing and hanging around. Roger arrives late Saturday night (after midnight) so "Daddy time" will officially begin on Sunday. Charlotte has been so funny. The nurses and technicians at the proton center keep asking her if they can go back to Virginia with her and she says, "No! You have to stay here and work!" Very funny. OH! Big news! Some of you may or may not know that lately Charlotte has been rather partial towards Daddy and while she is not outwardly mean to me (usually), she has said things like "I don't love you Mommy" or has definitely picked being with daddy over me. I know on a certain level that it is a very "normal" childhood behavior, but it's also been very difficult to hear her say "I don't love you" or get a nonresponse from her when I tell her I love her. Anyway, this morning, on the way to radiation, Charlotte snuggled up to me in the van and (unprompted) said, "I love you mommy. I love you SO much." That made my day. I may not hear it again for a while but it doesn't matter. That makes me happy.