Here is the link so you guys can check out the article!
Naples Daily News
On January 27th we have to go back to Healthpark (were the Childrens Hospital is located) cause now our local ABC and NBC news wants to do a story! YIKES!!
Tuesday, July 14, 2009
Saturday, July 11, 2009
Friday
So the check presentation was yesterday at the hospital for Jenn's Kids and it went great!
Once the check presentation was over it was time to do my interview for the "mini commercial." It was excruciating in the fact that I hate being on camera answering questions about myself and talking about my CF...but the videographer was awesome and he made it as easy as possible for me! I can't wait to see the finished product and hopefully I don't sound to much like an idiot. Hopefully when its done I can get a copy and upload it to blogger so you guys can check it out too!
We don't really have to much planned for the rest of the weekend. Its raining right now, I want to go to the beach tomorrow so I am hoping its nice out. Have a great weekend everyone! :)
Me, my mom and Vince (blue shirt) presenting the check to the hospital
my mom, me, some people from the hospital and some of my moms wonderful Rotary friends!
Once the check presentation was over it was time to do my interview for the "mini commercial." It was excruciating in the fact that I hate being on camera answering questions about myself and talking about my CF...but the videographer was awesome and he made it as easy as possible for me! I can't wait to see the finished product and hopefully I don't sound to much like an idiot. Hopefully when its done I can get a copy and upload it to blogger so you guys can check it out too!
We don't really have to much planned for the rest of the weekend. Its raining right now, I want to go to the beach tomorrow so I am hoping its nice out. Have a great weekend everyone! :)
Thursday, July 9, 2009
TX Check-Up
Yesterday was my check-up in Gainesville and as I predicted I did great!
I weighed in at 114lbs (which I think is up from 3 months ago when I was there but I forgot to ask what I was last) my six minute walk went great and my FEV1 went up by one percentage point! I know that's not really a big difference but the fact that it didn't go down is good in my book.
So since nothing has really changed I have my next appointment set for 3 months from now. I honestly believe that the fact that I am wearing my oxygen more and in turn I am walking and getting around WAY better than I have in a long time is what is making me feel better. I have lots of energy and I am out of my house enjoying life with family and friends again. Its great!
Tomorrow is my "commercial" for Jen's kids at the hospital along with us presenting the first $30,000 to the hospital to get started on stuff. I am super excited to present the check but not really looking forward to being in the video...my mom is kind of making me do that part! You know with it being "my vision" she says I need to do it...so I am. I just hate being on camera! :(
Next Friday I finally have an appointment with Dr. Faverio to sign all the paper work so that I can have the inhaled Azli. I am really looking forward to starting it and I am hoping it will be beneficial.
I am going to bring my camera tomorrow so hopefully I can get some pictures to post tomorrow night.
Good Night.
I weighed in at 114lbs (which I think is up from 3 months ago when I was there but I forgot to ask what I was last) my six minute walk went great and my FEV1 went up by one percentage point! I know that's not really a big difference but the fact that it didn't go down is good in my book.
So since nothing has really changed I have my next appointment set for 3 months from now. I honestly believe that the fact that I am wearing my oxygen more and in turn I am walking and getting around WAY better than I have in a long time is what is making me feel better. I have lots of energy and I am out of my house enjoying life with family and friends again. Its great!
Tomorrow is my "commercial" for Jen's kids at the hospital along with us presenting the first $30,000 to the hospital to get started on stuff. I am super excited to present the check but not really looking forward to being in the video...my mom is kind of making me do that part! You know with it being "my vision" she says I need to do it...so I am. I just hate being on camera! :(
Next Friday I finally have an appointment with Dr. Faverio to sign all the paper work so that I can have the inhaled Azli. I am really looking forward to starting it and I am hoping it will be beneficial.
I am going to bring my camera tomorrow so hopefully I can get some pictures to post tomorrow night.
Good Night.
Monday, July 6, 2009
Need some ideas!!!
OK so on Friday we are shooting a "mini commercial" type thing at the hospital for Jen's Kids. Its gonna show some of the damage they have and there are also some CF kids who are admitted right now who might also be in the video if they want to be and whatever else they decide to shoot.
My job is to come up with 4 songs to play while the video is in progress. I can pick whatever I want I just need to have it by Friday.
I am having a little bit of trouble deciding on what to do. I was kind of thinking of going with a theme about going home/making the peds floor like some kids "home away from home." With that in mind some of the songs I have thought of so far are as follows:
Carrie Underwoods version of Motley Crue's-Home Sweet Home
Bon Jovi's-Who says you can't go home
Daughtry's-Home
Check them out on Youtube and let me know what you think...or if you have any better ideas/suggestions I will take those too!!!
Thanks guys!! :)
My job is to come up with 4 songs to play while the video is in progress. I can pick whatever I want I just need to have it by Friday.
I am having a little bit of trouble deciding on what to do. I was kind of thinking of going with a theme about going home/making the peds floor like some kids "home away from home." With that in mind some of the songs I have thought of so far are as follows:
Carrie Underwoods version of Motley Crue's-Home Sweet Home
Bon Jovi's-Who says you can't go home
Daughtry's-Home
Check them out on Youtube and let me know what you think...or if you have any better ideas/suggestions I will take those too!!!
Thanks guys!! :)
Red White and Boom!!
Happy late 4th of July eveyone!! I knew I would have a couple pictures to post from this weekend so I held off until I was able to upload them before blogging.
I had another really great weekend. That makes two in a row so I am just wondering how long this trend is gonna last or when am I gonna start feeling crappy!!
Danny's grandma is in town visiting so Friday night we went out to dinner with her and his parents and then just came home and watched a movie. They had never seen Bride Wars yet so we watched that movie (I have already seen it like a million times!) which is fine because I love it and could watch it over and over again.
Then on Saturday my whole family (mom, dad, 2 brothers and sister, brothers girlfriend, plus my mom's two crazy dogs!) came up to our house for the 4th. I made a big pan of baked ziti for dinner and then we all (minus dogs) went downtown to our cities 4th of July celebration called...Red White and Boom! It was hands down the best fireworks display I have ever seen it lasted a good 20 minutes with like 3 finales all set to different american themed songs. It was awesome.
Sunday, was our niece/god daughter Delaney's 2nd birthday party and then after the party Danny and I along with Curt and Karen went to the beach for a couple of hours. I love going to the beach but HATE it when it is time to leave and there is sand EVERYWHERE!! Not fun. :(
Wednesday is a tx check-up in Gainesville so either that night or the next day I will update you all on how I am doing. I have a feeling they are going to tell me I am doing good...and by good I mean stable so I am sure I won't be moving anywhere up the list anytime soon. I have PFT's, six minute walk and blood work this go round so I am sure its going to be along day. Wish me luck!
Have a good week everyone! :)
I had another really great weekend. That makes two in a row so I am just wondering how long this trend is gonna last or when am I gonna start feeling crappy!!
Danny's grandma is in town visiting so Friday night we went out to dinner with her and his parents and then just came home and watched a movie. They had never seen Bride Wars yet so we watched that movie (I have already seen it like a million times!) which is fine because I love it and could watch it over and over again.
Then on Saturday my whole family (mom, dad, 2 brothers and sister, brothers girlfriend, plus my mom's two crazy dogs!) came up to our house for the 4th. I made a big pan of baked ziti for dinner and then we all (minus dogs) went downtown to our cities 4th of July celebration called...Red White and Boom! It was hands down the best fireworks display I have ever seen it lasted a good 20 minutes with like 3 finales all set to different american themed songs. It was awesome.
Us hanging out waiting for frieworks to start!
My mom, me and my little sister Jessica
Sunday, was our niece/god daughter Delaney's 2nd birthday party and then after the party Danny and I along with Curt and Karen went to the beach for a couple of hours. I love going to the beach but HATE it when it is time to leave and there is sand EVERYWHERE!! Not fun. :(
Wednesday is a tx check-up in Gainesville so either that night or the next day I will update you all on how I am doing. I have a feeling they are going to tell me I am doing good...and by good I mean stable so I am sure I won't be moving anywhere up the list anytime soon. I have PFT's, six minute walk and blood work this go round so I am sure its going to be along day. Wish me luck!
Have a good week everyone! :)
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