Cystic Fibrosis, while a serious disease, is not debilitating. Most people with CF lead very normal lives. The biggest difference in their everyday lives is the large amount of medicine they have to take. This is true for Nicholas also. Since he was 2-months old, Nic has taken regular breathing treatments using a nebulizer. This kind of therapy is like second-nature to him by now. I have taken quite a few pics of Nic over the years. Here is a pic of little Nicholas taking Albuterol before he could complain about the camera....
Later on, Nic started using a VEST machine for airway clearance. He still does that everyday. Here he is years after the last pic doing his therapy, trying to get me and looking kinda like Dr. Octopus....
One of the medicines that Nic takes every day is Pulmozyme, a drug which was developed with the help of funding from the Cystic Fibrosis Foundation (CFF). This means that people who were Great Strides supporters back in the 1990's directly helped my son with his disease. So I know that donations we make to CFF today can help Nic and many others in the future. There are many scientific studies and research developments happening all the time. Check Out the news headlines from CFF over there on the sidebar to read the latest.
In 2007, Nic went into the hospital for the first time since he was a baby. He had pneumonia. He was in for 4 days because he needed some powerful IV antibiotics. He missed a couple of weeks of school after that. Here is a pic of Nic and his brain in the hospital the first time...
Coincidentally his first hospital stay happened at the same time as a big event for me. For 3 months prior to that I had planned to attend a Van Halen concert in Greensboro with some old friends. It was the BIG Reunion with David Lee Roth and I didn't want to miss it. I asked Nic if I should still go and he said it was OK as long as I bought him a hat at the show. I don't think he knows who Van Halen is. The concert was amazing, that week was long and Nic got better quickly. You can read what I wrote about all that back then over on my music is music blog HERE. Naturally I had a camera around. Here is what I felt like in the hospital room the morning after the show....
These days Nic is a very normal teenager into video games, robots and horror movies. He has gone a long time without getting a serious illness. Getting sick is never the plan for anyone, especially people with CF. When I started this blog last month I did not think that I would be writing about getting sick. But since then things have changed a bit.Recently Nic had to go back to the hospital for his second stay. Pneumonia again. Plus some other stuff. This stay was for 7 days. Then another week out of school after that. That is what we have been dealing with this April. I am not going to go into details about all the medical issues. But the GOOD NEWS is that he is home now and trying to get back to normal. Whatever "normal" means. I certainly hope that we are done with hospital visits for a while.
Coincidentally this hospital stay came just a week after a big concert again. I went to see Prince in concert, someone I have wanted to see since I was Nic's age. The show was amazing!
Nic did NOT want me to take any pictures of him in the hospital this time. Of course i still did. (He He) But I won't post that one, instead here is a pic I took of the little drawing I did on the message board in his room.....
From here on i will be posting lots and lots of pictures and not that many words. Please check back for updates on the fund raising and more good stuff.
PLEASE SPONSOR US IF YOU CAN!
thanks for reading,
Nic's dad
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