this is a picture of Nic's Team from Great Strides 2003....
as you can see, Great Strides is alot of fun! looking forward to May 7th!
Nic's Team, making CF stand for CURE FOUND!
Wednesday, April 27, 2011
Monday, April 25, 2011
trying to get back to "normal"
The last post was meant to provide readers with information about the disease Cystic Fibrosis (CF) and why we need to support efforts to find a cure. All those good links, plus some more, are now located over there on the sidebar. However, this blog is not meant to be all scientific and technical and stuff. It is more about overcoming CF and Nic's Team and Great Strides and positive things.
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
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
Friday, April 8, 2011
What is Cystic Fibrosis?
What is Cystic Fibrosis? found out some answers at these helpful links:
CF Foundation - www.cff.org
Cystic Fibrosis - wikipedia
cysticfibrosis.com - information resource
kidshealth.org - Cystic Fibrosis
families and friends of CF patients are doing what they can to bring a cure closer by supporting the CFF and GREAT STRIDES this spring. Nic's Team has been walking in the Roanoke Great Strides event for several years. here is a pic of Nic walking with his Mom way back in 2001....
coming up: more pics
CF Foundation - www.cff.org
Cystic Fibrosis - wikipedia
cysticfibrosis.com - information resource
kidshealth.org - Cystic Fibrosis
families and friends of CF patients are doing what they can to bring a cure closer by supporting the CFF and GREAT STRIDES this spring. Nic's Team has been walking in the Roanoke Great Strides event for several years. here is a pic of Nic walking with his Mom way back in 2001....
coming up: more pics
Monday, April 4, 2011
Great Strides for CF
taking "Great Strides for Cystic Fibrosis" refers to participating in the CF Foundation's largest and most successful national fund-raising event called GREAT STRIDES. CFF is known as one of the most effective charities in the USA. Nearly 90 cents of every dollar of revenue raised is used for investment in vital CF programs to support research, care and education.
Raising money for this worthwhile cause is the very least we can do to ensure that one day a cure will be found for Nic and kids like him. We have participated in this event for 12 years. Lots of generous people have helped us in the past and we are extremely grateful.
the Roanoke walk is always held on the beautiful campus of Hollins University. This year's event will be held on May 7th. Our team will be there along with lots of others. All of our supporters are invited to join us.
Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to our team web page to make a donation that will be credited to the team. Any amount you can donate is greatly appreciated! With help from generous sponsors, we can meet our fund-raising goal.
BIG THANKS TO ALL OUR SUPPORTERS!!!
Raising money for this worthwhile cause is the very least we can do to ensure that one day a cure will be found for Nic and kids like him. We have participated in this event for 12 years. Lots of generous people have helped us in the past and we are extremely grateful.
the Roanoke walk is always held on the beautiful campus of Hollins University. This year's event will be held on May 7th. Our team will be there along with lots of others. All of our supporters are invited to join us.
Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to our team web page to make a donation that will be credited to the team. Any amount you can donate is greatly appreciated! With help from generous sponsors, we can meet our fund-raising goal.
BIG THANKS TO ALL OUR SUPPORTERS!!!
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