Even though I want to paint a rosy picture and keep this as upbeat as possible, the reality is that we are at an all time low. We did the plasmapharesis and saw a few benefits from the treatment even when we were in the hospital. It was invigorating and allowed both John and I to believe that we would come home to a bit of an improved home life. However, our one day of recovery on Sunday showed us that in no way had things changed. In fact, if it is possible, it seems that things have even gotten worse.
By mid afternoon on Sunday John and I were very distraught. We also knew that caring for our family was way more than a 1 person job. In reality it is more than a 2 person job. But we realized that we needed a plan for this coming week or we might not make it. John’s work provides hardship care where they will help find a caregiver in times of hardship. This is probably to be used for when your nanny gets sick or there is no school. But we signed up for it and we got a caregiver today. We are going to use this benefit until it runs out. John’s employer will do the work of finding us a reputable and qualified person to come to our house and help me with the girls. We have 100 hours to use each calendar year. Thankfully it is November and hopefully we can stretch this out till the end of the year and then start up again in January with the next 100 hours.
I also met with the ped today. A needed to be seen to make sure that the catheter site was healing ok. A’s rages are so extreme that I feel like we are worse than before. However, while the ped and I were talking about all the difficulties of this week, A took a pen and simply drew a pumpkin with a scary face. No one was paying any attention to her and no one has ever shown her how to do this. The ped and I were shocked. Drawing and handwriting skills are severely impacted by PANDAS. They also have been the first skill to return when A gets healthy. After the ped saw A draw the pumpkin she said she thought perhaps A actually is healing from the PEX. And because she is healing she is able to show her emotions to us. It just so happens that her emotion right now is that she is severely pissed off. I can see the logic behind this and it is also something that John and I were saying on Sunday. The ped thinks it will take a full 2 weeks before she recovers from the trauma of the hospital.
For now we are going to utilize the hardship care and do the best we can while we pray for improvement.