Taking it Day by Day

A few housekeeping notes:
If your comment doesn’t go through the first time, give it a little time. We have the filters set pretty tight and we have been pretty good about checking it several times a day.

I know there are duplicate comments. I will be cleaning that up at some point but right now don’t worry about it, just go onto the next comment.

I ask that you remember that the girls and Peter are reading this site every day.

Thank you

THE PETER UPDATE:
Progress is slow and Peter is frustrated which is perfectly normal for him to be so. He is working well with the PT and OT staff. They are still working on the white cell count but it is becoming closer and closer to be declared an aberration and let’s move on.

If you think of it, we don’t know our white cell count day to day. We are having our blood drawn one or twice a day and put through a battery of tests (OK may be a few of you are but you are in the minority). So a change in the white cell count could just be how his body can react to stress and believe me, his body has been stressed recently.

So cross your fingers that we get the GO on Monday to move Peter to the next step and get him working back to his old self.

He is spending more time sitting before it gets uncomfortable. The more he is up, the better it is for his body.

Yesterday was an interesting day. We made plans to get together with our friends at Disney Hollywood Studio since Magic Kingdom is still blacked out for cast members. Caroline was meeting up with her friend EM. Ariel and I were looking forward to meeting up with G, her dad and ER, his fiancé. Yes, I am being a little squirrely about the names but G and ER both work for Disney and are cast members in the parks so I am respecting their privacy. We met G for the first time by name the night we got engaged.

Peter encouraged us to go. I left him his cell phone so he could follow along with pictures and texts and if he wanted to call us which he did a couple of time to check in.

We went to the park and tried to get fast passes to Toy Story Mania but those were gone probably within an hour of the park opening to the general public. So we went over to Star Tours and got fast passes for that. Ariel and I decided to take Caroline on the Great Movie Ride which she doesn’t remember being on. She declared that she both loved and hated it. Hated the Alien which of course dropped RIGHT over our heads but loved other parts a lot. We caught up with GEE after that.

Disney Hollywood was pretty crowded. But we managed to walk around and get some lunch at one of the fast food joint. Our fast passes were good at that point. Ariel gave her ticket up to EM so she could ride with Caroline. I took the girls on and we had a good time (For those keeping Star Tours score: Imperial Droid, Pod Race, Princess Leia, Gunga city). After that we rejoined the rest of the adults in our party.

Now I knew intellectually about “triggers” and try to be a good net citizen by warning people when I am talking about subjects that might cause them some distress. I haven’t put any here because we are talking about stroke and the effects on the patient and the family and that’s the current topic here.

I was walking with G, EM, and the girls when I noticed Ariel had that expression on her face that I remember from when she was child. Something was bothering her. So I asked G to take care of Caroline while I talk to Ariel.

It was the park and seeing Star Tours that caused her to just let loose the flood of tears I have been waiting for since this whole thing happened. I have been joking with her about her brave little toaster face but I knew that she was hurting and sad and angry all at the same time. I let her just talk and tell me her fears and frustrations with all of this. She was playing the blame game with herself with all those lovely woulda, shoulda and couldas that have become part of my regular thinking along with Peter’s. We had a long talk about that it wasn’t her fault and all the good things she had done for her father and the rest of her family since this all started. She felt better I think for letting it all out.

Caroline’s trigger was the Christmas light show they are doing on the back lot of Disney Hollywood Studios. She was watching with wonder at all the lights and the music and looking for the hidden Mickey’s in the lights. It is very impressive. She turned to me with tears in her eyes and said, “I miss Daddy. He would love this.” I held her among the holiday revelers all around us as she cried it out. Ariel got the idea to tape the whole scene so we could show it to her Dad, which made Caroline feel a little better.

We rode Star Tours a couple of more times thanks to Fast Passes. Ariel thinks she is doomed to Hoth since she has seen it EVERY TIME she has been on the ride. But she did get some different secondary pieces.

I dropped the girls off where we are staying and went back to the hospital. Peter called me to check in when I had just turned off the car in the hospital parking lot. We spent some time together and watched the repeat of SNL. I told him about what had happened at the parks and that the girls were doing better. He told me about his day and I talked to the night nurse who is a real pip. She and Peter get along really well.

I came back and poured myself into bed and had one of the better night sleeps than I had been having.

Today we go back and see how Peter is doing and take it from there. One day at a time and one foot in front of the other.

I am grateful for all the support systems we have around us that are helping us with this crisis. And I am so VERY grateful to all of you for spreading the word about how to help Peter. It is working. I ask for your continued help in all this.