Today is day 28 and we are headed back to the hospital. A definitely continued to show improvements once this last IVIG kicked in. However, starting on Tuesday, I could see small signs that she was starting to deteriorate. The signs were very small and would only be noticed by John and I.
- getting tired much quicker than earlier in the month
- less able to deal with frustrations
- increase in chorea
Those are the only signs and that isn’t too big of a deal. But it is interesting that I did notice things once I started looking for them.
Lat month’s IV insertion was beyond traumatic for A. She was a complete wreck and it was because it came so quickly after all the procedures we had done in DC. We spent the last 3 weeks with a therapist working on the trauma of all the medical interventions we have been through – namely the pokes. The therapist advised us to tell A about today’s IVIG ahead of time. I was scared to pieces to tell her but since we were advised to do it, I told her with the therapist’s help. Poor A was so mature about it. She just listened and got very quiet. But as the news and the reality sank in, she literally crumpled in half. It is so sad to watch. She did this last month when we told her we were doing it as well.
I tried to make yesterday as special as possible for her. After the therapist’s office we went to the craft store and got some more special supplies. We have also hired a babysitter for Wednesdays and she was here yesterday. The babysitter is aware of the situation and knows that her job is to make both girls feel very happy and special. After the babysitter left we made smiley face cookies with daddy. I told A that you really can’t be sad if you are eating a smiley face cookie. She agreed with me. We will see how this holds up today though.