Joseph’s Friedreich’s Ataxia Blog

Monday night…

March 2nd, 2009

3-2-09

Joey and I had an interesting day.

We got up and got him ready for PT. Everything was going great. Mark commented that Joey was sitting up by himself much better and he stood on the standing table for a long time as well. We then came back to our room to have a late breakfast, order lunch, sort laundry, etc…. At 1:00 P.M. I wheeled him to OT with Cindy. I asked her if the doctor had mentioned Joey’s tail bone problem to her and she said “no”, so I told her why Joey had been in so much pain last week and asked her to please go easy on the back exercises. Well, there must have been a miscommunication because I was called back to OT before 2:00 p.m. He was in pain again. Cindy had him doing too much too fast I guess. He wanted to lay down so he decided to skip his massage. When we got to the room, the doctor came in and I explained what happened. She called Cindy and asked her to modify Joey’s back exercises because of the malformation to his tailbone. I do believe everyone is finally on the same page now, thank goodness. At 3:00 p.m. another coordinator came in to our room and said that there were visitors in the waiting area. It was a couple from Hong Kong with a 26 year old son who also has FA. They have been thinking about bringing their son here for the stem cells treatments. The coordinator told this couple that there was a patient in the hospital right now who has FA and is having these treatments. The man & woman asked if they could visit with me and Joey. Of course, we said bring them in, we would be happy to talk with them. They came in and the man introduced himself and his wife. He spoke very good english so I was very excited to speak with him. He asked many questions about the hospital, if we were happy with the environment, if the staff was friendly, if we were happy with the results that we were getting, etc….. so, after answering all their questions, he laughed and said that they would be here in 2 weeks. Joey and I are very excited that we will have them as neighbors soon. I had to laugh when the man said, “ money talks and bullshit walks”, he was soeaking about how expensive the treatments are, hahahahaha. Maybe we will all be able to take a trip together before Joey and I go back home, that would be great.

Joey has his 3rd SCT tomorrow. I am sure we will be staying up late tonight with the hope that he will be able to sleep through some of the pain after the treatment.

My sister sent Joey and I a care package from home. She included movies, beef jerky, pringles, People magazine and so much more……. Darla, we thank you so much for all the goodies. It was like Chistmas in Beijing for us. We had smiles from ear to ear and it totally took the edge off of being so far from home. Thank you little sister, we love you.

more later……

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