For one, today is Connor's Infusion Day and so far he had his Port accessed, his blood drawn and the Solumedrol Infusion behind him. We started on the IVIG about 30 minutes ago and with any luck we hope to be done in about 5 hours. This is when instead of me driving home two very tired boys we will be heading to the Airport to try and catch a flight to Dallas/Ft. Worth. This by itself will be interesting but to attempt this during one of the most busy travel season of the year will be the reason it might be an adventure :) So far all the flights are slowly turning red, which means oversold plus Standbys, but the boys and I are used to this so we will get to the Airport, sit back and watch what happens.
When I wrote the title for this blog entry today I thought how it sounds as if Connor just had 11 Infusions when in all honesty I never counted all the Solumedrol and Methrotrexate Infusions he has received. For almost 8 weeks he had them daily, then for a while three times a week, down to two, once a week, every two weeks, every three weeks and now every four weeks. Now this might change again but I will know more once I talk to Dr. Soep.
One of the many things we were told at NIH was the fact that Connor in the Research Teams eyes was a severe case initially but that he has made the most progress of any child they met that started out in the same spectrum as he did with JDM. This of course gave us huge hope that Connor will be the one sailing into remission but we were warned that we are entering the most critical time right now and this is to balance his treatments with slowly trying to reduce some medication. Dr. Rider told us that our focus as parents needs to be being very patient and to not rush it but to move cautiously and slow.
So wishing all of you a very Happy Thanksgiving week and Holiday and I will do my best to honor it as well and not call Thanksgiving a 'speed bump' on my way to Christmas anymore - haha.
Hugs,
R A C A
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