Christmas

I wanted to post some pictures from Christmas. Avarie had such a great time. I don't think she really whined once, at least not the way she does at the hospital. She enjoyed her brothers and sister so much. It was such a blessing for her to be able to come home, we could all tell how happy it made her. I know this is going to sound corny but honestly that was the best present ever. I loved having my whole family together for that day, minus a very important member, Zakk. We have not gotten to see him yet this Christmas. Zakk is Avarie's half brother he is 16 and she adores him. We are hopeful we will see him this next week sometime, but 16 year olds tend to be busy.
Avarie loved Christmas morning. Carrying her downstairs and seeing her face as she saw the presents. She was so excited and she loved everything. It didn't matter if it was a book or a pack of all of the Princess Barbie Dolls, she loved everything she opened. It was so fun to watch her. She was in such a good mood all day. She sat at the table and played with Addisen and Carter. She sat there for a long time playing pretend. She even ate a little bit of food at dinner time. Of course she claims that nothing taste good any more, but I try not to let that bother me, the Dr's say it is a side effect of the chemo it has altered her taste buds, at least I keep telling myself that every time I try to make her something.
Having Avarie home was wonderful but honestly it took a lot more out of me then I had expected. She is on so many meds and has 4 wounds that need dressings changed twice daily, one of them is an open wound that needs to be unpacked, cleaned and then repacked. The meds start at 8 am and then 3 meds at 9am and then there is another med about every 1-2 hours including IV meds and her tube feedings. There are also her diapers which is quite a chore because she continues to be incredibly soar to even the slightest touch. She can not help with the lower part of her body at all and even taking her socks off of her causes a great deal of pain. We also have to keep a close eye on her temperature, luckily she never went over 100 while she was home. I loved having her here and having my family back together but it was so hard. I hate admitting that, I want to write that it was wonderful and everything went smoothly and it was the best Christmas ever. It was a great Christmas and we did get through everything. If it was just Avarie's care I think I could do it, I would be busy, but I would get through it unfortunately I have three other kids that desperately want my attention and need my assistance too. Then there are meals to try to make and clean up, forget about the rest of the house it just wasn't going to happen. Craig tried to help, but I don't think he realized half of what was going on because, and this was my fault, I didn't teach any of it to him. There really wasn't time, I only learned it right before leaving the hospital and then we were home and in the midst of it. I think he just felt helpless and overwhelmed and the kids wanted Mom to see how all of their new toys worked and all of the cool tricks they can do with those toys. They also like to tattle about every little thing that happened while I was gone, we've had to make a rule that they are not allowed to tell me any of the bad stuff that happened while I was gone unless it involved someone getting hurt. The rule is a work in progress and sometimes Addisen just can't help herself she has to let me know exactly what happened every second I was gone. I honestly would love to be able to just sit down and talk with her and let her tell me all of the good and bad things that happened, but there just isn't time. I have started doing a date night where I let one of the kids stay up late with me, but sometimes that is hard because the evening is the only time I have for myself to try to unwind. I give that up sometimes, but other times I just need that or I am never going to make it through this. I'm trying to reach a good medium.
So to make a long story shorter, I am terrified to bring Avarie home permanently. I don't know how I am going to do it all. I know I have a ton of support around me and I think I am finally over some of my pride issues, at least enough to recognize that I can not do this on my own, I am going to need all of the help anyone is willing to give once Avarie comes home. I know we will get through this, but oh my it is going to be a bumpy road.
One last note, that infection that Avarie has been battling they now think it is not yeast or mold, but something called Sweet Syndrome. It is very rare, the infectious disease control Dr's say they only see maybe 2 cases a year, but that is the latest opinion. The reason is that they have never been able to get any of her blood cultures to grow anything. They are always completely clean with no bacteria or fungus in them. They once got one biopsy that showed yeast, but yeast occurs naturally in the body and since none of the other biopsies have ever grown anything and they do blood cultures daily on her and they have always come back clean too. Yet she obviously has these nodules on her body and kidneys and she runs high fevers almost constantly there has to be something going on. Sweet Syndrome is where the body, for some reason of course they do not know why, collects white blood cells and deposits them around the body. It causes high fevers and rashes and or nodules, it also can cause a lot of joint and muscle pain and weakness. They are attempting to diagnose this right now, but its not a simple grow a culture get an answer kind of test. So I will keep you all updated on that. Honestly I don't know any more about the Sweet Syndrome yet, I haven't had a chance to research it yet. But it seems to fit the little bit that I know.