Wednesday, May 5, 2010

NO Cystic Fibrosis!

I have to admit...the "what if....?" was playing in my mind to some extent, but mostly I was not worried. So on to the next rule out. He seems a little out of breath after running around and did some kind of strange breaths tonight as he was falling asleep. He still has this virus/sinus thing going on. It was almost completely gone Monday and Tuesday after Monday night's last dose of antibiotic. Seems worse again today but he is still pretty energetic and happy.

The even better news is that JJ is eating really well for a few days now!

Saturday, May 1, 2010

Another Test and Appointment Behind Us




We had the cystic fibrosis test on Thursday. It was AWFUL!! Jerry knew we were at the blood lab and did not buy into my "no owies." It was a much longer and annoying process than I had thought it would be from reading and hearing about it. The biggest problem was his anxiety but who could blame him. It was this process of washing, drying and wrapping both arms. They used tourniquets and attached electrodes which were on each arm individually for 5 minutes providing tingly electric currents. I think that was to put something into his arm to increase sweat production. Then they repeat the washing drying and tightly wrap each arm and let us go for an hour hoping that he sweats enough into the gauze for them to measure how much sodium chloride is in his sweat. He was quite a sight with his cast and both arms taped up. We managed to get through it by doing everything to me first and also one of the techs was distracting him with toys. Then when we went back for them to take all the tape off, it was another horrible scene. He seemed OK at first, like he believed me that it would not hurt and they were just taking the tape off. But then it pulled on his skin and hurt. I was very upset that they did not have any adhesive remover and got them to pull out the gauze that they needed so I could go home and take the bandages off with adhesive remover pads. "Arm test" all done Jerry kept saying. After a long day and long drive home in traffic, it is over. We should get the results soon but I am not all concerned that he could have it.

Lat night JJ was up most of the night screaming. He would calm down when comforted but said his belly hurt. We had given him his first dose of a potent probiotic that was recommended and that is the only thing I can think that would be upsetting his stomach. He was fine today cheering Isaac on at soccer.

JJ's cast comes off on May 12th. We are going to Cleveland on Tuesday...Jerry's last free flight. John joins us on Friday to drive home on Sunday. It will be a year on Sunday the 9th since Papa Jerry passed away and I think he is still around helping us through things.
As you can see in the pictures, as bad as these appointments and tests are, Jerry gets over the trauma quick...until the next prodding appointment.

Right before this video, Jerry was saying "hug Isaac" but then running away teasing him. So Isaac was pouting on the couch about not getting his little bro hug.




video