Circles

First of all, I haven't been blogging as much as I was in the past. I found out that people who I never expected would know about my blog not only know of it, but are reading it. This makes me feel vulnerable. Too vulnerable, perhaps. It is much easier journaling when I don't know who is reading this; when I can write assuming no one is reading it. I am sensitive to judgement and feeling exposed.
Some are asking for an update on Liz. She is home and doing better. She is still not well, as she is fighting the infection. She is very tired, which she admits- she NEVER admits being tired. Or, I should say, she never used to be tired. Fighting such a nasty infection can make anyone tired. Add in her trying to get back to her normal activity level quickly after 8 days of virtually zero activity, and also being on a medication that can cause drowsiness, you can get a picture of how tired she is.
She was out of a diaper for the first time today. She had to use them because she wasn't making it to the bathroom in time - part of CDiff. She wouldn't appreciate me sharing this with anyone. Having said that, she at least has had to wear them before after surgeries or previous bouts of CDiff, so it wasn't a bother to her to be in them this week. Her little bum can still fit into size 4/5 Pull-ups, so there was no trip to the store needed. I just got out the unused stash I had leftover from Jackson and pretended like it wasn't a huge deal. Sweet girl.
She had two nights of fevers this week, which had been gone for about 6 days, so yesterday the doctor asked to see her. She had labs done and the GREAT news is that her platelets and hemoglobin have gone up! A big deal, as they were still low on the day of discharge from the hospital and since she'd been having bleeding and both counts have to do with bleeding, it was important we saw the counts going up rather than down. She is excited because her platelets are in normal range and this means she can ride her bike and scooter again (they had been low enough that the doctors told us she had to keep both feet on the ground until they went up).
She has 9 days left on the antibiotic. Today I tried taking her off of her Zofran - the anti-nausea med. she has also been taking-, but that proved to not be a good idea, so she's back on it.
So the plan is to stay on the meds, let the antibiotics do their work and have her rest. Hopefully she'll be well enough for at least a half day on Monday of school. She will see her GI doc on Thursday and at that point he'll talk to us about a plan to try and keep her gut healthy so she doesn't get yet another case of CDiff.

I am exhausted! Physically and emotionally. As I expressed to some, Walter and I have had so much stress as the medical bills seem to be drowning us. I had the nerve to ask Walter how much we owe in medical bills for Elizabeth (bills that have accumulated) and I was shocked at the amount. He estimates - without sitting down and adding up the bills we know of and the ones that are sitting in Collections- that the number is around $20,000. We make enough to pay for our insurance and for a horrible illness or hospitalization to occur and us be able to pay for. But, 10 years into Elizabeth's health issues, it is just too much. I know the medical bills upset him the most as he is the provider for our family. Also, those who know him know how frugal he is. To be in debt over something we cannot control drives him crazy. It is just so hard to get ahead of it because it doesn't stop. Co pays alone are $45 for office visits. Her labs and procedures mount in cost. Even with insurance the bills add up. Sigh. For years it has been a burden that Walt and I don't talk about with others because it is just too overwhelming. This week, though, a dear friend talked openly with me about it and so I was forced to have another of the conversations with Walt that we both dread. On Monday I will try, once again, to find a loophole that will allow Elizabeth to qualify for CCS, a medical coverage option for children who qualify either by income (we won't qualify based on the fact we make too much) or diagnosis. It just feels like going in circles.

On a happier note, after Liz's appointment yesterday I took her to Luan's Dress Shop to choose a dress for her Most Inspiring Student dinner/reception. Of course she was beautiful in the dresses she tried on and I started to cry as I watched her twirl, smiling, in the dress she chose. She's been going in her own cirlces of feeling well and then being sick and rounds of tests and appointments for so long...and still, she twirls.
How can I not do the same, or at least try to.