Poor Mr. Max

My little Max is having a bad day. He woke up this morning with a mild breakout on his face and while we were concerned we weren't really worried since he wakes up sometimes looking kinda rough. He was a little fussy but not bad and we went on about our day. He went down for his nap and woke up even worse. We chalked it up to the change in weather we had today and gave him his medicine and decided to go swimming. Normally the chlorine in the water will help dry up his skin. Not today. After the pool his skin still looked bad. We went to my in laws to eat dinner and after dinner we (Chas, Max, Catie, and myself) all started rolling around in the carpet and rough housing a little. I noticed that he was looking even worse and by 10:00 tonight he looked horrible. He had hives on his arms and legs and his little face was so broken out and hot to the touch. He cried all the way home and totally fell apart during his feed. We got him upstairs to get him in his jammies and to put his special medicine on him for times like this and he was so miserable.

It is times like tonight that I am not sure what to do anymore. This disease is so baffling and there are times that I wish he had cancer or something that had a treatment or even a department at the Children's Hospital. I know that sounds bad but his disease can go to his organs and bone marrow and could cause death. We don't think about that but at some level we have come to accept this as being one of the effects of this disease. Everyday is such a battle and on some days we win a battle and have a small victory but then we wake up to days like this and we realize that there is still a war to fight. He itches all the time and is miserable. The doctors are baffled and don't really know what to do anymore. It is so hard to see your child in so much pain on a daily basis. It is also very hard on Catie who is learning to walk on egg shells when Max gets a flare up since everyone tends to be stressed and grouchy. She is so sweet with Max when he is like this and asked us tonight what would we do if he stopped breathing. We told her we would have to call an ambulance and give him his special shot. It sucks that this is a reality for us and that our 7 year old knows that this could happen.

Well I am off to bed. Saturday is a BIG day for us! Catie and I are doing some volunteer work with mom and after that Catie and I get to go to Aunt Em's fancy salon and get our hair cut to start school. I am thinking something very short and very blond. I will post before and after pictures tomorrow. I am terribly excited and I need that after a day like today!