Archive for December, 2009
Julia’s final culture results came in yesterday, and she is still testing positive for pseudomonas. That means we get to start another 28 day run of TOBI next week. They are also putting Julia on an oral antibiotic, ciprofloxacin, for two weeks in addition to the TOBI. It always concerns me when we do antibiotics because of Julia’s past issues with c. diff. We’ll just to have to see how it goes. I feel really discouraged. We worked so hard with her first TOBI run. It feels like it was all for nothing.
I was trying to get her TOBI filled before the first of the year because we are already maxed out on our out-of-pocket for prescription medications. Our insurance won’t let us fill it until January 5th, the exact day we need to start her on it. That means that we will be responsible for 20 percent of the cost, which is right around $900. The Patient Access Network has been helping us out with the co-pay for Pulmozyme this year, so I had to put a call into them to see if they could help out with TOBI. It was very good news to hear that they could help us cover the costs, all they needed was a doctor’s order for the medicine.
We are very thankful for such wonderful programs out there to help people like us with this expensive burden. For instance, in January, our family would be paying a minimum of $1300 for Julia’s medicine, and that’s in addition to the $700 we have to pay for the monthly premium. That’s a minimum of $2000 in one month for medical. That’s more than some people make in one month. Cystic Fibrosis is a very expensive disease. I worry about Julia when she becomes an adult. She won’t ever be able to go without insurance.
Wish us luck for the next month. Hopefully, this time, we’ll be able to beat this one!
Well, the clean-up started yesterday afternoon. The tree is now away and the house is just about back to order. We had a quiet day at home with my sisters. My kids really love my sisters. The adults were very tired as we all stayed up wrapping last minute gifts, re wrapping the gifts that Julia had opened early on, and playing Wii.
Austin was the first one up, very excited to open presents. He got Julia up and Olivia was soon to follow. This year, the gift that brought a big smile to Austin’s face was a nurf set to connect to his Wii controller. It included a baseball bat, golf club, and tennis racket. Olivia’s favorite things were make-up, a dance costume, and things to draw with. Julia, I think has forgotten all about what she got for Christmas, but has been enjoying playing with a Fisher Price nativity set that Grandma got for her. We had a big breakfast and I had a nap when Julia napped later in the afternoon. The day was very relaxing.
Christmas Eve was interesting. Julia woke up from her nap and was very cranky. She was acting like she was sick. I made dinner, holding her most of the time. After we ate dinner, Julia started throwing up. She slept on me for about 20 minutes after she threw up, then she woke up when we were opening our pajamas. She was interested in the toy nativity set that the other two were playing with and she joined them. The rest of the evening, she was just fine. She was her normal self, jumping on the bed before going to sleep. Very strange…but glad that she was able to enjoy Christmas.
I can’t help but reflect on my many blessings this Christmas season. I am so blessed to have such a wonderful husband. I am so blessed to have three children that enrich my life in such different ways. I am so blessed to have such great extended family, some who are so willing to be involved with my children. I am looking forward to the new year and all that 2010 has to offer!
Christmas is just two days away and I am really struggling…not feeling the Christmas spirit at all. It’s no surprise that this year, Christmas is a bit different. Our life is so different than it was just one year ago…not necessarily in a bad way, just different than what we’ve been used to. If I had my ideal Christmas, I would “poof” my entire family to southern California and we would just relax, in warm temperatures with family that just adores my kids and could entertain them for hours. But, this year, we are here, in the cold, smog filled air, and I’m just not feeling it. It really is my own fault…I need to do something that brings the Christmas spirit, and maybe I will…I still have two more days. I am looking forward to the next two days to just sit around together and enjoy the kids, my sisters, Christmas breakfast, hot chocolate, new, warm pajamas, juicy oranges and all the other wonderful things that the season brings. I know that once we sit down together as a family and talk about the birth of Christ my mood will change. Braving Target today, well, not a way to get into the spirit of things, however, everyone was friendly and patient considering the craziness.
I talked to my parents today and my mom told me of an activity she planned for a group of women and it sounded just wonderful. Making Christmas pillow cases, tasting quick breads, talking about Christmas traditions, learning how to make bows…the simple things. I think that I have a tendency to make Christmas too complicated, to commercial, and I really need to stick to cookies and homemade crafts…simple things that my kids would enjoy and remember, long after their toy is broken, lost, and forgotten.
Today is a hard day for me and that’s why I feel the need to write. Julia has tested positive again for pseudomonas. It’s strange, but for some reason, I knew that was the way it would be. I just felt that it never left her. We were very digilent with her TOBI regiment. Never missed a treatment in the 28 day run and she breathed it down to the very last drop. I didn’t want her to test positive knowing that it was because we didn’t do our part. We did our part and now we’ll have to do it again. And we will.
When Julia was first diagnosed, I longed for the day when I would get used to cystic fibrosis, when I could go a day without thinking about it, worrying about it. I am now coming to the conclusion, that for me, that day will never come. And that is OK. If there is any person who encompasses the spirit of Christmas it is Julia…perfect, innocent, full of life, joy, love.