Aaron's Hyper IgM Journey

Thursday, March 20, 2014

Looking good, feeling hopeful

Aaron's steroid was decreased over a month ago. He hasn't been able to stay at this dose before without flaring up. Over the past two weeks Aaron's skin has been getting better and better, his diarrhea has gotten better, and he has lost three pounds (a good thing).

I hope this is the turn for the better we have been waiting for. I am cautious with my optimism since things can change quickly.

I have been working hard to get Aaron's classroom and curriculum ready for next year. He turns five in October. Technically he would fall into pre-K, but I plan to begin him with kindergarten.

Michael and I came to the realization that he won't be going to school anytime soon. The earliest he would have a decent immune system would be another year. Even then, he will not be able to have vaccines for awhile. This trend of not vaccinating children and letting them into school systems is horrifying. We have come so far with medicine to eradicate diseases and now they are popping up again. Also, Serena is a healthy ten year old and is still sick almost once a month during the school year.

I do not plan on having a life of isolation for Aaron, but unfortunately we will have to be careful for awhile. I hope to put Aaron in group activities that I can monitor more easily for sick children. Maybe art classes, cooking classes, karate, etc. I would love some other ideas anyone might have.

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Friday, March 7, 2014

Death of the sucker fish

We made another trip to Cincinnati. The drive was one of the easiest so far and NO SNOW!!! The weather is still cold but the sun is shining.

The first thing Aaron does when we arrive at the Ronald McDonald House is go to the fish tank and look for the sucker fish. We looked and looked and could not find it. Sometimes he hides behind the seaweed, but we asked Barbara anyway. Barbara said the sucker fish went to heaven. Every time we went by the fish tank Aaron would ask if the sucker fish came back yet. I tried explaining that the fish died, but I don't think Aaron understood. Barbara gave us a book to help.

This is the book given to families who lose a child while staying at RMH.

Our visit went well at the hospital. Aaron's electrolytes are better, but not normal. His liver numbers have increased to horrible levels. We will hold his antifungal medicine to see if that helps. His skin has improved with his photophoresis treatment. We are hoping he can stay stable and that we do not have to increase the steroid again.

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