We are flying cross country today to attend a funeral. Our beloved Poppie passed away this morning. Poppie was the most wonderful man, father, grandfather, husband and more and we are lost without him. The loss is so new that we have not yet accepted it.
We have only traveled one time since A got sick 14 months ago. That trip was very difficult and we knew then that we wouldn’t travel again until we resolved this. Of course, our last trip was at least 8 months ago and at that time we still believed there would be a resolution to this situation. We now know that there is no resolution but instead we need to cope and create the most successful life we can. Embarking on a cross country trip during the last 9 days of A’s IVIG cycle fills me with fear. The only benefit to this is that A has been wanting to go to Poppie’s house for the last 14 months but has been unable to do so. I’m hopeful that the change in her regular routine will get us through.
A also has a cold which increases her symptoms quite a bit. Today we are seeing:
- Signs of OCD: unable to walk on any cracks at the airport
- Moderate rigidity
- Eye rolling
- Inability to use words to convey frustration
All of these symptoms are still on a moderate level. They can get significantly worse, so we are still ok. If we can stay at this level, we will be ok.