Archive for November, 2008

Mmmmmm!

Friday, November 28th, 2008

Kaley and I had a wonderful Thanksgiving. We went to my parent’s house for dinner. We rolled Kaley’s chair right up to the table, and we dined on turkey, mashed potatoes and gravy, and stuffing. Kaley enjoyed eating some of each of these (about 3 table spoons in all) and was able to swallow and digest all of it! Through out the entire meal she kept on saying “Mmmmm…mmmm!” This is one of Kaley’s favorite meals and I am so glad that she was doing well enough yesterday to enjoy it. After the rest of us had finished eating, I asked Kaley if she was done, and she said “I’m not finished eating yet. I want a couple more bites.” I gave these to her and she, like the rest of us, was ready for a Thanksgiving afternoon nap.

The Struggle Continues

Sunday, November 23rd, 2008

The last few months have been tough. Between several really bad UTIs, a fresh bout with c-diff (possibly two), and insurance refusing to cover an apparently crucial wake up med (Provigil), we’ve had a rough month. Luckily we seem to be starting an up swing.

After the insurance refused to pay for provigil, we decided to try life without it. Since Kaley’s improvement during the summer, maybe she didn’t need it anymore. We were wrong. That drug was having a profound affect on Kaley. These drugs are about $10 a day (not super expensive as far as non-generic drugs are concerned) so paying for these out of pocket for a long period of time is out of the question. We’ve got about a 2 month supply at this point. Provigil’s manufacturer has a reimbursement assistance program that we’ve applied with. Basically the manufacturer volunteers to try to help with the appeals process for patients who have been denied their prior authorization (i.e. exception) with their insurance company. They claim to have about a 60% success rate, so that’s pretty good. I have no idea how long that will take.

In any case, Kaley’s been responding more like the Kaley from early summer (pre-break through) lately. This is an improvement over the past couple of months. Hopefully this trend continues. Kaley will be spending Thanksgiving at my parents’ house. Then sometime after that (possibly the next day) we’re going to go back there to bake Christmas cookies (always one of Kaley’s favorite things to do over the holidays). At some point, we’ll be bringing her back home to help put up the Christmas tree at our condo. I didn’t bother decorating last year, as I just didn’t have the motivation to do so. Having Kaley help decorate will certainly help that this year.