Gary is doing pretty good. He is changing quite a bit rapidly as far as his appearance. The good news is that no matter what he looks like, it still really cute. He is starting to say more and more words. Yesterday we went outside for bit all covered up. He had very little reaction. Tomorrow we have a eye doctor appointment. Apparently the steriods can mess with the pressure in your eyes. I will let everyone know how that goes. We also have another blood pressure check. The kids have half day so I will be able to bring Lexi along.
I have been shopping for a large umbrella to cover the back patio so he can play outside. The one I found is on ebay and it look awesome! It comes with mesh netting to create a gazebo type room. And its off set so you can move it around. Then I could run fans in it to keep him cool.
When it rains, it pours.......yes. Nothing I can't handle but I want to keep my emotions under control. I am trying to adjust to the fact my child has a life altering disease. Everyone is so encouraging about how they have made advances. I appreciate that so much. I also recognize however, that the disease hurts his body and the drugs are helpful but harmful as well. I am finding out that it has been just recently they introduced IVIG (antibodies from other people) and it is still experimental. As long as it works? I have no questions, I don't question it. I just have to........watch it go in.
McGuire has the stomach flu. He has been up since 4am throwing up all over the place. He is so sick. Of course Gary gets up early and doesn't want his Dad with in 5 feet of him. (Gary does that everyone once in awhile, even with me, he doesn't like you for a few minutes. Mood swings). So I am trying to help my ten year old who is laying in his own sickness and tell Gary I will be right there. I just pray Gary doesn't pick it up. It could mean a stay in the hospital again. Not to mention trying to keep his medicines down. He won't get it though. I speak it in the name of Jesus! LOL.
Then there is school. Problems at school. I suppose I have to get it in my head that people are not going care that my family is on the tilter whirl right now. I thought I was doing the right thing by getting in contact with who I needed to- to make sure everything was alright and to say hey this has happen three times, lets work it out and get to the bottom of it so all can be well. I was expecting that sounds great, lets meet when you have a chance or sorry it happen but here's why. I just felt attacked though. Email is never a good way to go in situations like this. (lesson one) There are no "I pass" tickets. You just have to do your best and deal. (lesson two). Keep on keeping on. All will be well. This to shall pass.
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