CJ's Thumbs Up Foundation

There is much work to do but I must complete an update before the "fans" get restless.
Easter day was good. I think it may have been the first Easter ever that I didn't attend service somewhere (either Vigil or Easter day). Kinda weird but to be expected given everything. We didn't really want to take Charlotte out too much and I was just T-I-R-E-D!!
Charlotte got to hunt for eggs in the front and back yard (a little PT/OT action with the bending, lifting, etc.). Later, she went for a walk up and down the cul de sac delivering some of her eggs to the neighbors. Kind of a reverse trick-or-treat. She did get all dressed up for the day and we will have to post pics later. I have yet to download them. A purple dress, pink sweater, white tights, and yellow floppy hat. She looked like a spring flower!
Later in the day, we had a yummy family dinner and then mom and I got a walk while Kolbey and John went exploring.
Back to the grind today. She had a small poop earlier in the day. She also got to see our chiropractor (Dr. Anna Madland) and Daddy got an adjustment too. I ran errands and did some work at Romp n' Roll. I needed to get a LOT of paperwork done but got distracted/waylaid by the day's events so it will probably be a late night. Roger was busy with his usual activities as well. Yes, spring break is over and the crunch is back.
As Roger posted, we have a lot of events coming up. Some are fun-raisers for Charlotte and some are just times when we need your help and/or support. I will try by the end of this week to get things posted on Caring Bridge, the Care Calendar, etc. I wish Caring Bridge had a calendar feature. It sure would make things easier.
Anyway, my parents leave Wednesday and Kolbey will be going with them for a few days (flying home on Monday) so it will be quiet around here for a little while. Hopefully we won't experience any more bumps before we go back into the hospital for chemo. My mom is planning to return for round 3 (which should be on or around May 2nd).
An update on the insurance front: We got a denial letter in response to the FIRST contact the insurance ombudsman made with Humana. We have since submitted a formal letter from us, a letter from Dr. Tye, and a letter from Dr. Khan advocating for our stay at MCV to be considered "in-network". This is on the basis that Charlotte needs intensive, consistent care for a severely life-threatening and complex condition, MCV has already agreed to match whatever Duke would charge for care, AND we are actually saving Humana money by staying close to home because then we will not need to take advantage of reimbursement for travel (which we would get with in-network care). We are also already drafting the response to the denial letter, again with the ombudsman's help. He has been oh-so-helpful throughout this process and i think he wants us to succeed as much as we do.
I also spoke with a representative from Senator Warner's office. She is based in Midlothian, I guess. We talked at length about the situation and I brought her up to speed on the current events. She maintains that because insurance is a state- regulated issue, Senator Warner really can't "intervene" on our behalf. I told her that I understood the legalities and logistics of all that entails and while I do not expect Senator Warner to necessarily intervene on our behalf, I DO want him to recognize that this is a situation that is indicative of why we need a Universal Single Payer system in this country. This is not necessarily about fixing Charlotte's situation but about fixing the system so that NO family has to endure this problem. We are struggling because insurance companies have been allowed to lobby and legislate medical care in this country. There should be no "in-network" or "out of network" designations...only equal coverage and equal care for all citizens. Well, my soap box seemed to fall on half-deaf and not-so-understanding ears. I think she was sympathetic enough but she just didn't see it as a "national issue". She also told me that I should write a letter "by hand" and have it delivered in the mail. I told her that had already been done and that a letter had been HAND DELIVERED to Senator Warner's office in DC. Obviously, the man either gets way too much mail or the right hand doesn't know what the left is doing. Maybe a little of both. Needless to say, I doubt our overtures for social change have done very much but we can't say we didn't try. And there is no way that I will STOP trying.
I must close this post as I have much work to do (miles to go before I sleep, as they say). More to report tomorrow...
Rachel