Screening Visit Day Two

Action 4 Ashton > Clinical Trial > Screening Visit Day Two

Ashton was happy this morning about not having to arrive for his appointment fasting. All that was on his agenda today was the Physical Therapy portion of the screening process. It takes about 2-1/2 hours and parents are not allowed. Before settling in the waiting room I went to look for an iced coffee. Signage for the Rooftop Café caught my eye. So I make my way over to elevator F and go up to floor 8. No iced coffee but iced tea will do just fine. Not really much of a view today, the hazy sky seemed to form a dome over the area. Much too hot and humid for me to want to stay outside so I found my way back to the waiting room in the Clinical Research Unit. Soon after I got back Ashton came around the corner with the PT, he needed a bathroom break and wanted me to take him in case he needed help. Afterwards I walked him back to the room and then I went back to the waiting room.


When Ashton was all done and brought back to the waiting room I could tell from his red eyes that there have been some tears. He was complaining that his back was hurting. I was asked if this was usual for him or if this was new. This was a new complaint and we think it is from all the hard work he just got done doing. Chandra told me that he did a good job. Ashton said “It was very difficult.” He was all worn out but I assured him that he could sit for the rest of the day. After all there is not much else to do on the long ride home lol.

Ashton also worked up an appetite and was ready for lunch. It was lunch time and I told him the plan was to eat here before we head for home. Our Coordinator recommended the Fountain Dining Room. It was cafeteria style and of course Ashton wanted to see all the choices before making up his mind on what was for lunch. Ashton decided on a slice of the cheeseburger pizza. I had a brown rice California roll. While we were eating I told him about the area up on the roof and that I saw the helicopter parked on another roof out the window when I got off the elevator. I asked him if he wanted to go take a look before we left and he did. As we got close to the door to get on the roof it looked wet. We open the door and sure enough it was raining. I just happened to have two umbrellas hung on one of his wheelchair handles so we seized the moment, who knows, we may not be back here and get an other chance to do this.

I have heard it said that some people wait their whole life to meet their hero. While I did not know it at the time, I gave birth to my hero and that is a very unique and interesting perspective. Ashton is always amazing me with his inner strength, sense of humor during his daily difficult times and teaches me more than I ever imagined that a child could. I have seen him struggle with such simple and everyday tasks his entire life. I have watched him fight back and work hard to walk after being completely immobile 4 times during his short life of only 9 years. He has such a resilient spirit and an amazing tenacity. Ashton is my hero! I am so blessed to have him and thankful that he is my son!

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