We completed the first infusion just about an hour ago. If the PEX hadn’t failed us so badly I would almost be able to say that I have seen a few signs of success. But since we had such a let down from PEX, I am super hesitant to get excited about anything.
However, there have been a few things that we have seen that can’t be discounted. The entire time we were in Georgetown, A never spoke to any of her nurses. The most she could do would be to look at me and ask me with her eyes to answer for her. There was a life specialist there that she liked very much and at some point each day she would talk to her. But it was almost always in a whisper and she would never look her in the eye.
After A woke up from her nap, she spoke to our nurse without much prompting. Now, she recognizes this nurse from last time and the nurse is very kind and nurturing. But I still think there is a difference in how she acted towards her and towards the special life specialist. We just had shift change and a brand new nurse that we have never seen before came in. She is also very good, but she is not a mom age and has short hair. A really doesn’t like short hair for some reason and is very vocal about it. She tends not to like people with short hair. But after I spoke for A and introduced A to the new nurse, A started speaking to her! I think this is huge! A also kept on talking with the nurse for a bit. C was still here for a bit when the introduction was made, but I don’t think that made too much of a difference.
The other one is that A somewhat adamantly demanded markers from nurse Carrie. Carrie went to look for some markers and came back to tell us she didn’t have any but had some fun crayons. A looked at them and told her she didn’t want to use them. Carrie pointed out why they were fun and A took a minute to think about it. Then she said “It’s ok, we can deal with that”. John and I haven’t heard A be able to “deal with” anything since pretty much the last IVIG.
This is all great and well, but our biggest challenge is behavior. I would rather have her never speak to anyone and be able to act somewhat appropriately. C touched one of A’s puppies and when A noticed she went into a rage. It was a bit scary because she was hooked up to everything while this was happening and she was flomping all over the place. I was terrified that the poke would come out and we would have to do it all over again. I don’t think we could get her to do it again at this point without total sedation.
I have to be patient. We are only halfway through and I can’t expect a miracle. My expectations are both extremely high and extremely low at the same time.