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Continued from July 5, 2012:

Great news - we were able to bring Jill home today. Naturally it took much longer than we thought it was going to for her discharge paperwork to be signed. The visiting nurse called to let us know that she needed to be called when we left. She drove an hour and a half to come see us on a Saturday and I am thoroughly exhausted from her training, questions, and the general craziness of these past few days. Jill has not lost much weight but she is already underweight so that is a concern of ours and theirs. Weekly labs will need to be drawn but no one is sure exactly when the next one is scheduled for so we have to call and get that straightened out. Jill's medication arrived at the hospital on ice. Another bag of supplies arrived with it and I suppose this is incredibly funny to some but it was pretty sad to learn that what I thought was maybe enough to get us through a couple weeks was actually only two or three days worth of meds and saline.

The biopsy site, while small, needs to be wrapped. Jill has a very sweaty foot and this is ridiculous but nothing will stick to the site other than these expensive tegaderm patches which is another thing we will need to be ordering. Meds are taking up space in our fridge, one of the antibiotics comes in this good sized syringe, the other is a grenade style pouch that takes much longer but has its own administering system. These need to be delivered every eight and twelve hours respectively, the nurse drew out a sample schedule for us but already I can see hitches in the system because Jill had been planning on taking a summer theater class in downtown Milwaukee and I don't think we can make the medication last for the entire time she will be down there. Previously bone infections were thought to be incurable. When we were speaking with a pediatrician she said that eventually someone would have taken Jill in had I not. The bone can liquify if left untreated, that was said casually but was a good reminder that despite her otherwise good health this is a fairly serious medical condition we're dealing with.

While part of me realizes that we're going to get through this, right now I am completely overwhelmed, tired beyond belief, and wondering how I am going to cope with these extra demands when I had trouble getting through a normal day otherwise. Laundry is piled up in the basement, we picked up a few groceries on our way through town but we'll have to go grocery shopping and I really need to get rid of the food that we thought we were going to eat but didn't since we have been practically living at the hospital with Jill. Apart from the medical expenses, we spent a lot of money at the small cafe downstairs, gas to get to and from the hospital adds up and I'm dreading trying to figure out the financial ramifications of this past five days. Some time ago I signed up for an adult swim class. I'm going to stay in the class despite the cost and time away from home because I need a break and think this will be good for me. My sister wants the girls to do a fun run, I don't have the money but it sounds like fun and I guess I'm slightly bitter about not being able to go on that with her.

I haven't been writing as much as I used to, for several reasons: I spend too much time online and am not disciplined about getting off when I should. I've been researching a character and that has taken me down different rabbit holes, and I've been thinking about ways to balance family life and my personal well being. Whether I get divorced or not I am going to have to deal with Jill and Jane's father. I need some coping mechanisms to manage and in the past I've turned to online sources which are not a replacement for a healthy relationship. I've been more into biking lately, I would like to keep that up and I think that staying with yoga, I haven't been doing that as much lately for some obvious reasons but I want to be outside despite the heat which really doesn't affect me much. I love the heat, the other day I took a bike ride, one thermometer said 99 and the other said 103 but when I got home, I felt amazing. Warmth helps minimize the pain in my joints and I like the idea of getting a natural source of Vitamin D as long as I can keep up with my fluids which is always a challenge for me.

The other day I wrote a one paragraph daylog. I want to do more of that, recap my day so I remember what happened and when. So many things that I have wanted to remember are no longer memories of mine so this is my attempt to preserve whatever childhood days my children have left. I also want to go back and see progress or regresssion. I haven't lost or gained weight so far despite eating some sketchy things recently. I've had my first green juice since I got back and going forward I want my children to be eating at least one green salad a day. I want to set minimum fluid requirements for them, dehydration is an issue for my girls, and I want people to be aware of how damaging certain acceptable items like candy and soda are for growing bodies. As rough as this experience has been, it could have been so much worse. I am so thankful that this was caught early and treatment is available even though the thought of powerful antibiotics for this period of time is scaring me, especially after hearing some of the side effects which are not pleasant.

Many people have sent messages and I appreciate hearing from others, even if it is a simple - hope she gets better soon. My daughter is a fighter, she's been that way since the day she arrived ahead of schedule and small for her age. She could hold her head up the day she was born and I am really proud of the way she's been handling the pain and what seems like constant meds. Right now her temp is 99.3 degrees. That is high for her since she runs about a degree lower than the standard 98.6. She ate a few bites of a burger for lunch and I'm concerned about her lack of appetite. Bacon is off of her menu since that was one of the foods she couldn't keep down and no one needs bacon in their lives but it was a high calorie food that pairs well with a lot of other things. I've done a lot of thinking lately, I've prayed for her and other have too. I don't know what the next step is, right now I think we all need time to settle down and get into a new routine. Hopefully I will be more emotionally stable soon, and please don't laugh too hard, because while not probable, it could theoretically happen.

Continued on July 8, 2012

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