Again, fromHeather's blog:
The most important thing - Jackson is a new kid! I was looking at him today at lunch and noticed a brightness in his eyes. It is the only way I know to describe it. It sounds weird, but his eyes sparkled and I couldn't get over how much better he looked in his face. The rest of his body looks great too. He still has some redness and eczema on his legs, feet and hands, but he has cleared up everywhere else. The other change - he doesn't itch constantly. We sat through dinner last night for almost 45 minutes and he never scratched once. It has been a long time since that has been a reality for him.
The doctors decreased his soak/seal to twice a day this morning and eliminated one of the steriod creams. We met with the social worker again this morning and he taught Jackson some breathing techiques to use when he is itching and feeling bad. He taught Jackson one technique yesterday that Jackson is already putting into practice. He taught Jackson to put something (stress ball, stuffed animal, etc.) in each hand when he felt the urge to scratch. Wednesday a.m. we were working on his homework and he said, "Mom, I need my baby alligator (beanie baby)." I told him that we weren't playing, we were doing homework. He replied, "But, I need it. I am going to itch." So, he did homework with his pencil in one hand and baby alligator in the other. He never scratched. Way to go, Buddy!
The social worker also talked to me about working with the school district on a 504 Plan for Jackson. It is essentially a plan that acknowledges Jackson's health issues as a disability and requires the school district to accommodate Jackson when he needs support during times of illness. That support might be - allowing him to hold his two stress balls/stuffed animals to prevent scratching, giving him time out to do his breathing exercises, or giving him more time to complete work when he is having an episode of allergies/asthma/eczema. We will be working with the school counselor, his teacher and the social worker on that when we get home.
In some ways, today, I feel like we have let Jackson down in the last year. The solution to his major problem - eczema - is discipline to keep the skin hydrated, sealed and medicated when necessary. We haven't done his lotion after every bath. We tended to wait until he was in a flare to treat it. This trip, I have learned, the key is to keep up the routine, even when his skin looks good.
We finished all of our daily appts. at the hospital today at noon and had the afternoon off. We headed for the Denver National History Museum. Jackson loved it, especially the Space Odyssey exhibit. He wants to go back tomorrow. Tonight, we hit the pool, worked on more homework and we have now rented Meet the Robinsons. We have had a little relaxation time and that has helped our moods, immensely.
We are planning to come home Sunday. I expect the allergy/skin docs to release us Friday. The social worker wants to meet with us Monday and Tuesday, for one hour each day. But, the cost to change our flight and extend our stay is more than we are willing to pay in exchange for two hours of treatment. We will followup with a behavioral specialist when we get home. Plus, we are ready to get home and Damon and Reid are ready for us to come home. (BTW, yes we are)