Reality

Today my amazing friend Stacy got up very early and drove several hours with Caroline to my house. She called me up yesterday and asked how I was. I she saw through my "fine" and knew the realities of my week. Right now I am running to pee because Jilli is rather unsteady. She falls over a lot right now. She has spent most of her week sitting in a laundry basket. I had not showered in days. Today she came to hang out with my girls. I drank a cup of coffee. I got a shower. I got to lay down for a few minutes. They brought with a chair they are letting us borry for a little bit that has a high low base and supports to help Jilli sit. Jilli's mind is often faster then her body so she wants to play but right now does things like falling over and falling off the couch. I am so thankful for Stacy and Caroline coming down today! This is one of those things I know I will likely never be able to repay... they have cats so the girls can't go to their house and while I will happily help them with whatever they need I know I likely would not be able to do this same thing to repay this amazing gesture today and that is very humbling. Stacy is one of those friends who it doesn't matter that the house has fallen by the wayside this week, that just comes in and loves us for us.

And before anyone lectures me about how I need to take more me time in the midst of a Jilli crash, there is no tearing me away from one of my kids... it is best for me to take care of them because otherwise I have a lot of anxiety. It is taking care of me to take care of them, but then days like today when she starts to come out of it I can pause and let someone who is able to do medical things help me.  

A little while ago I stood in the kitchen counting neb viles. I keep track of lots of meds and how much we have left of each. We are at the pharmacy almost weekly. My phone has reminders for different meds to send in the refills.

But right now we are living in a tighter place for one of Jilli's meds. Since Monday morning at 1am she has been getting a nebulizer every 4 hours around the clock. Right now we adults are holding our breath because of this med. Right now we have 4 days left of it and we are headed into the weekend... the logical answer would be that we would order more, but I have been trying to do that since April but it has been an insurance mess. It was all resubmitted to insurance earlier in the week but they have 21 days to decide if they are going to approve it or not... my kid has 4 days left of the med and we only have that much left because our pharmacy and doctor each gave us an emergency supply otherwise we would already be out. This is a scary place to be. I stood holding back tears as I looked at those viles. My hope is that since she is doing better today that maybe she is turning the corner and then maybe tomorrow we might be able to space the nebs out to every 6 hours which would buy us more time any maybe by sometime next week we can drop her needing nebs and go back to her normal care but right now I am scared. I am anxious. I am trying not to be. I know somehow it will all work out... we have what we are using at the moment because people helped and I am so thankful. I'm not asking for the more expensive meds for the fun of it, it is out of real heart concerns that it is much safer for her to be on the more expensive med... the heart is a giant muscle and she has a muscle disorder, so far her heart has been fine but we all know we need to be careful with it. So here we go, into the weekend where approvals don't happen as we tick away at our supply. This will get figured out... I just wish it wasn't a fight!

Now back to watching Switchfoot music videos....

*on a political note, yes it was a celebration here today when McCain announced he doesn't support the new healthcare bill. I know it is not officially dead yet but it is a lot closer. We need things to work on healthcare in this country... just read what I wrote about above, but the bill at hand doesn't fix the issues it just throws more crazy at it. I already see how many things about Medicaid is different between different states (I am not joking when I say I see at least one discussion a week about what Medicaid is like in X state because every state does things differently for kids like mine... in some states we wouldn't qualify...) so I can see already how this plan would be really bad. And on the topic of money... I don't want to hear a dam thing about money and lack of funding from our health secretary... actually I don't want to hear it from anyone in the Whitehouse because I am all for many things that are fiscally conservative, I grew up in a house that way... but the trips, plane rides, ect are so far from fiscally conservative you can't say anything about the other side blowing money... this is insane! And the fact that republicans are not standing up and saying it is wrong because it is their guy shows a really integrity issue to me! I'm rooting for our country here. I'm rooting for working together... we can do this. This doesn't all have to be extremes. It doesn't all have to be about only thinking about yourself. Look around, not everyone is out to get you, but when people are making a poor choice we need to ask them to stop and think!