Saturday, November 21, 2009

Another Busy Day & CJSTUF Kickoff Meeting!

Well, first I must update you on Thursday.  Roger and Charlotte went to the library and spent some quality time reading books.  We also had Thanksgiving dinner at RMC with the Field Hockey team.  What a wonderful, generous bunch of girls (young ladies!).  The RMC Thanksgiving meal was fabulous and Charlotte enjoyed seeing the girls, especially her buddy Walker.  We came home and watched the Wizard of Oz before Charlotte headed up to bed.

On Friday, Roger took Charlotte to MCV to get her stitches out.  In true hospital form (I think this happens every 2nd or 3rd time we have an appointment) nobody seemed to know we were coming.  I guess there was a communication mixup but her appointment was at 9:30 and Dr. Tye doesn't even get there on Fridays till 10. Anyway, Roger was a bit miffed but used the opportunity to take Charlotte to Nurse April and get her dressing changed.  She always does a wonderful job.  They got home a little after noon.  Stitches in her head are out and everything looks great.

Meanwhile, we have our flights booked to Florida.  We will leave here on December 1st (pretty early in the AM) and return home late on the 14th.  We get to fly through Charlotte (Joy!) but it shouldn't be too bad.  They are working on getting us in to a princess breakfast/lunch at Disney.  Those book pretty quickly and since we are making our trip kind of last minute, that has presented a challenge.  I know they will do what they can.  We know from others who have had the MAW experience (including Reese who is there right now) that it is just AMAZING.  Disney itself is pretty cool but the MAW folks definitely go all out for their families and word on the street is that the Disney employees keep an eye out for the MAW families and make sure to treat them with extra TLC.  I'm not opposed to that at all!!!  This is one of the few times in my life when I will take advantage of any and all special treatment Disney wants to give to our family. 

Noah's Children came to visit yesterday.  They are a palliative care and hospice program for children exclusive to the Richmond area.  We met with "the Cathys" (both named Cathy, one a social worker and the other a nurse) and they shared some information about the organization, met Charlotte, and got some info from us.  They have their own doctor (Dr. Archuleta), a pediatrician specializing in palliative care, who will now coordinate with Dr. Khan from this point forward regarding Charlotte's care.  We talked about our desire to stay at home as much as possible at this point as well as other things that may come up in the weeks to come.  Their staff (consisting of a chaplain, social worker, and a team of nurses) will be available to us 24/7 for anything we might need including emotional support, medical care, respite, etc.  They will visit weekly (at least for a while) and continually update our plan based on our needs.  They will also help, when the time comes, in planning Charlotte's final days and what will happen upon her death. 

That seems incredibly bizarre to type that last sentence.

I have said before that this whole experience is very surreal to me.  It really is.  I've never had a family member (grandparent, parent, etc.) experience dying in this way (at least not that I was old enough to remember) so this whole concept of knowing that the end is coming but not quite knowing when is very strange to me.  It is so odd to talk about the end of her life in such a matter-of-fact way.  SIGH.

We also had a visit from Katie Reynolds, one of Charlotte's old babysitters.  Her mom came along as well.  They shared some books and had some quiet visiting time. 

Yesterday evening, the Advisory Council for CJ's Thumbs Up Foundation met for the first time.  I just want to recognize the folks that were there and are now a founding part of the group.  They are:

Meredith Hayes
John Toscano
Dr. Anna Madland
Jay Campbell
Emily Starrett
Kim Thies
Lauren Coe
Pam Myers
(not able to attend yesterday but she's part of the group!)

We had a great meeting and discussed moving forward on a number of initiatives, capitalizing on the positive buzz that this has generated on Facebook, Caring Bridge, and within our community.

Long story short, the website is in process and should be "live" very soon.  We are working on getting an official blog (you're reading it now!) that will eventually navigate us away from Caring Bridge and directly on to the CJSTUF website.  This is mainly because we will have a lot more functionality for social media, etc. with our own blog.  We LOVE Caring Bridge but we are moving on to bigger and better things...

The Advisory Council members are working on a business plan, bylaws, and incorporation.  They are going to meet on their own and report back to us, probably after the Disney trip.  I am so excited!

I think that is the main stuff to report for now.  I must get ready as we have another busy day today.  We are going to the Coliseum with one of Charlotte's boyfriends (Wyatt).  She has a date to see Disney Live!  Then we will be off to Fredericksburg for the prayer service at Trinity Episcopal Church.  This will be a very informal prayer service (Compline) in Charlotte's honor at 5 PM with a small, informal reception to follow in the fellowship hall.  All in the Fredericksburg area are welcome to attend.  The church is on College Avenue, across from Mary Washington. 

Hope everyone has a wonderful weekend. 


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