Wednesday, July 29, 2009

One week down

One week down and probably 2 more weeks to go. Last week was horrible and it wasn't until a couple of days ago that I started feeling a little better. All thanks of course to steroids!

I had to cancel the news interview I had set for Monday cause I was still really sick so its rescheduled for this coming Monday so hopefully I will feel up to it. I just want to be well enough to do the interview without my oxygen on. I know I wear my oxygen out all places now but there is just something about being on tv with my oxygen that makes me really upset. It's very hard to explain why I feel this way and I know its stupid but I can't help it and I worry about it a lot.

Not to mention it causes my mom and I to fight because she doesn't understand why I have a problem and thinks that the positive things that will come out of the news interview for Jen's Kids outweighs my issue of not wanting to wear the oxygen on screen. I totally agree with her that I need to do this its just hard. I don't even know if I am making sense right now trying to explain my feelings. Oh Well.

On a side note its my little sister's birthday today and she is 15!! She has been studying for her learners permit so everyone on the road in Collier County should be a little more cautious. LOL

Happy Birthday Jessica!!!

Tuesday, July 28, 2009

Donate Life Florida

Today is a great day in the state of Florida for organ donation!

Prior to today if a person went to the DMV they could choose whether or not to become organ donors at that time by saying so on there license. The only problem with this is if the person who passed away didn't have there wishes documented somewhere other than just on there id a family member could make the final decision and NOT donate.

So today thanks to the Joshua Abbott Organ and Tissue Donor Registry Floridians can now join the state donor registry through the Donate Life Florida website, when renewing their driver license online, or when obtaining/renewing their license at a local driver license office. The best part is once your name is added to the registry your family can not veto your right to be an organ donor! You can also join the Registry by calling Donate Life Florida directly at 1-877-35-SHARE (1-877-357-4273) and requesting a registry form.

I encourage any and everyone to take a look at the website and get signed up if you live in Florida. One person can have the chance to save up to eight lives and that truly is an amazing thing.

P.S. The over 5 MILLION driver's license holders in Florida who have already said they want to be donors have been added to the list today!

Friday, July 24, 2009

Back in the joint

Well I am back in the hospital AGAIN! When I went in to see my DR on Friday to get signed up for the Azli medicine I told him that I had felt a little tired the last few days and we both agreed to admit me now before it got worse and I was banging down the door trying to get in! So Tuesday I was admitted.

Now of course anybody who knows me or has read this blog while I was in the hospital before knows that the first couple of days (no matter how well I try to be pro-active about coming in) I am in the hospital I get very high fevers and feel 10x worse than when I was admitted before I start to feel better. This admission has been no different...I haven't had any fevers yet today but the day isn't over so I am not holding breath!

With the fevers come chills, then when the fever breaks cause of the motrin I get the sweats and going back and forth with the temp does nothing to help my breathing and I feel very short of breath and then the O2 has to go up.

This brings me to the last couple of days and my nurse. She is a very nice girl and I like her just fine, its just that I feel that she barely comes in here to check on me and I am really not feeling good and when she does come in its like she doesn't get just how not feeling good I am! I don't know I think I am being a little to sensitive because I don't feel good and people tend to get on my nerves a little easier when I am sick but dang people how hard is it to check on your patient to see if she is still breathing when she is on like 6 liters of oxygen!

OK now that that is done on to some good news. I had a meeting scheduled for yesterday afternoon with the Architect and Interior Designer of the hospital but since I was in the hospital the came to me! We went over some of my ideas (which they liked) and they are gonna work on getting everything set up and we are going to meet again in a month to see what they have come up with. Since we obviously can't close the whole unit we can only complete two rooms at a time until the whole project is done but thats ok. I am SO excited and dont worry I will be documenting everything along the way! :)

Have a wonderful weekend and think good thoughts for me so I can start feeling better and go home to my hubby and puppy!!

Tuesday, July 14, 2009

We made the paper!!

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!!

Saturday, July 11, 2009


So the check presentation was yesterday at the hospital for Jenn's Kids and it went great!

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 mom is kind of making me do that part! You know with it being "my vision" she says I need to do 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

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.

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! :)