Busy, Busy

It is crazy how busy I am. I realized around 2pm today that I had not eaten anything yet. Its all going really well though. Avarie is doing great, she is seeming more and more like herself. Its just really busy. Luckily I had some wonderful help from my amazing neighbors and a friend from church today that helped me through the day. My neighbors just showed up this morning and never left. They shared dinner with us and put my house back together, because it was falling apart. Which sometimes makes me feel like I am falling apart. Its amazing how having a clean house just makes you feel like you are functioning again.
Avarie even had a little play date with her friend that she calls "little" Brooklyn. She calls her "little" because she also has a cousin named Brooklyn who is older then her friend Brooklyn. I took a picture of them sitting on the couch watching a movie together, but I am just feeling too lazy to go and find my camera right now and put the picture up, so I will try to get it up tomorrow. Sorry.
We are a little concerned about a few of the wounds on Avarie. The main one on her back is an open wound that was surgically opened up and left open to heal from the inside, it looks like large bullet hole in her back. It had been healing nicely, but over the last few days is not looking right. The Dr took a look at it on Friday and agreed it was looking a little off, but she is not running any temperatures and we are already packing it with an antibacterial dressing and cleaning it, there is not much else they could do unless it gets a lot worse. So we are just trying to keep a close eye on it. Its still not looking good to me tonight, I am concerned about it. I am all concerned about the g-tube or button in her stomach. That is the tube that we use to feed her through and give her her meds. It takes a while for them to completely heal and hers is not healed yet. I think they said it could take a couple of months to completely heal, but honestly I'm tired right now and not sure if my brain is working correctly on that detail. Anyway, it has started to look a little redder around the skin. So we are also watching that one and trying to stay on top of the cleaning of it. So we are in a watchful phase of all of this. Her counts are dropping and if I could take her blood today I would probably see some pretty low white blood cell numbers also probably her platelets and red blood cells too. The Dr already made the comment to plan on her probably needing both kinds of transfusions on Tuesday at her appointment. And in the meantime, keep her away from germs if possible and especially any type of crowded places, so basicly don't go anywhere.
I missed my fathers birthday party tonight. All of my siblings that were in town went out to dinner with my parents to celebrate his 60th birthday. I really wanted to be there but with everything going on with Avarie I just couldn't leave her. I know my dad understands, but it is hard to balance her care with the rest of my life. Hopefully just as her care has gotten easier for me handle so to will finding that balance in my life. I am living in survival mode, I know, but it sure would be nice to get to a point where life doesn't have to just be survived anymore, but enjoyed. But I am so grateful that I have the ability to be in survival mode. I have seen some of the other families at the hospital and I can see how blessed I have been to have been given this ability to survive this and be as strong as I have been able to be. It is truly a blessing and a gift from God, because there is no way anyone could survive watching their child suffer this way and still be strong if it wasn't his hand guiding you. I am so grateful that I have that help. I just hope that I can continue to receive that help as life continues to throw curve balls at us.