Happy New Year everyone! Our family comes up with a slogan every year but somehow this escaped us this year. It wasn’t until November that I realized we hadn’t made one yet! We decided on “The T’s lost a lot of time in 2009” and “The T’s get happy again in 2010.” We are going to work very hard towards this slogan this year. My personal resolution is just to smile more no matter what.
Things have been all over the board here. We did the last infusion exactly 2 weeks ago. We had pretty great results from that infusion. So much so that we were able to have a great Christmas! The girls did very well on the day of Christmas itself. We had another family over for Christmas dinner and the whole event was delightful. This family has a situation very similar to ours and we weren’t sure what was going to happen by dinner time on Christmas day. But all 4 children did great and we were able to visit even longer than we anticipated.
However, 2 days prior to Christmas I started to notice some things were a bit off on A. And by Christmas afternoon John and I could tell that her personality was showing signs of change. By the 26th it was clear that A was declining. On the 26th John also realized that he was sick with a sore throat. It was most likely a cold, but he was definitely not well. We correlated A’s decline with John’s illness. She continued to get worse each day by showing some OCD signs and several sensory issues. It was pretty sad to John and I because we thought things were going so well. I know that I was expecting A to continue to get better with each IVIG. I thought our progress would only improve and not take steps backward. It has been a pretty big let down to see this happen.
Since A has shown signs of symptoms in every area: anxiety, OCD, sensory and personality changes. We have considered giving her steroids to see if this will help with the inflammation. But we are too nervous that this will cause more harm than good due to side effects. So for now, we are going to stay as is and hope that the next IVIG in 2 weeks will help bring her back to a baseline.
This year has been by far the most difficult of my life. But it seems that the harder your own problems get the more you are exposed to other people’s enormous problems as well. I hadn’t thought that we would be the people who had an ongoing, giant challenge. But that is where we are. For now, I am going to try and do more smiling while managing the situation. Smiling really does feel good. Happy New Year everyone. Our family wishes health and happiness to you.