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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  1. Since you asked...Please do not be discouraged if he cannot complete grade K right now. I don't know where he is with letter sounds and recognition, but by grade K, aren't they reading 3 letter words pretty quickly? I don't want to discourage you since I don't know your son's situation. I think it's important to aim high, if he gets it, that's a huge blessing, but if you see him struggling, take more time to review the basics. My son was sick for the most important 5 years of a child's development. He's finally catching up! Yeah! I'm so glad that your son is well enough to learn - that's a huge blessing!

    I was never shy about letting teachers, parents, and other children know about my son's immune problems. Usually the community is supportive, once they understand that you cannot be around anyone with a cough or a runny nose. Given that, I am still responsible for my son so I would need to remind parents of my child's need. With Karate, I would be very careful. The mats may look clean but kids wipe their snot on them, the sweat on them, etc. If the class is very small, I would go for it, but you need to understand that martial art classes progress quickly and parents will bring sick children into the studio so that they do not miss any training. Martial arts can be rigorous, but it's very good for your bones, lungs, and mind. When my son was on steroids, he did not have any stamina and he did not sweat, so he would overheat very quickly. He would not have been able to do martial arts. Just be cautious. We tried gymnastics when he was on steroids. It was good but he often felt dizzy tumbling and jumping on the trampoline. We did art class and that was WONDERFUL! Also, playgrounds and kicking ball on the grass. We rode bikes and scooters. They have to stay active. Steroids are hard on the bone growth, so the more active a person is the better to build strong bones. Cooking class sounds like a lot of fun too! I might look into that for David and Jonathan.

    All the best,


    1. Thanks Aimee for all the great suggestions!