News this week

Well, I have to say it has been a yucky week as far as things going on. We lost Lauren... My mother-in-law was diagnosed with breast cancer We lost Beth McCarthy....in her 30's...local here....waiting on transplant...son in 5th grade...... YUCK.
First of all...my mother in law, has first stage breast cancer. The prognosis is very good. They will be doing a lumpectomy to remove the one spot of cancer. Then she will endure 5-6 weeks of 5 days a week radiation. I asked what the side affects of radiation are....tiredness and itchy skin. OK, NOT as bad as chemo, but still, yucky. I pray that all will go well and my mom-in-love will be fine.....
Next... We went to an annual event for the CFF. We have gone to this event since Zoe's diagnosis in 2005. The speaker that night, in 10-05, was Beth McCarthy's husband. She was on oxygen, waiting on transplant. They had a small son at the time. This was our first experience hearing a speech. A CFF speech. It rocked our world. Not that our world wasn't already rocked by Zoe's diagnosis earlier that year, but to hear a man talk about CF....we had never heard a CF speech. We took many quotes from Mr. McCarthy's speech that night and have used them ever since..... He said" Cf has NO vacation....no break from treatments, no break from any of it, it never let's go., ever." Also...."CF is a MONSTER of a disease." He was awesome that night, talking about his wife, the mother to their young son.
Saturday night at our event, the speaker, a man we respect, Mr.Roger, gave his speech. About his 40 year old daugher, Claire, with Cf. How she was doing ok. How he lost her brother some 20 years earlier to CF. Then he talked about local people that lost their battle.....Grant....Jessica....and then the ones that were fighting at this very moment for their life, Beth, waiting at Mayo for her lungs, her son and husband fighting along her side.... About a half hour after the speech, the ladies from CFF received a phone call saying that Beth had lost her battle with CF. The ladies from the CFF office were devastated. They were crying. We were crying. Hard to believe that Roger had just talked about her in his speech. I have met her, several times, my son, Dalton, has met her. She was an amazing, fighting little woman. So sad. We all raised our glasses, said,, "to Beth"...it was amazing....but surreal.....for all that to happen in one night at a CFF event. For a CF death to occur at an actual CFF fundraising event....wow....did God plan this?? Probably not. But....you could have heard a pin drop in the room while Claudia told everyone about Beth losing her battle with CF. Don't you know that everyone that left that event that night realized that CF is REAL, fing REAL, that we are losing people......
Soooo...it was a rough week news wise. We do have one more CFF event the 20th. Team Zoe for the Singles!!!! yeah!!!! Hopefully we will receive no bad news....
Take care of you and yours......................
Jada

So Happy!

We got Zoe's culture results from last weeks clinic visit.............NORMAL FLORA!!!!!!!!! (This means there is no nasty bacteria's that they picked up with a swab in the back of her throat) Yay!!!! This has been a REALLY good year for Zoe! I am so grateful......
Thank you for thinking of her and praying for her......it means the world to us!
Take care of you and yours......
Jada

Yesterdays clinic visit

Things went pretty good overall.
Her BMI has dropped to 50, mainly because she grew 2 inches in height! I've had a lot of people tell me lately that she has gotten soooo tall, I guess they were right!
Her nose is yucky, again. So, in thinking of ways to help keep her nasal passages cleaner (she has an extreme fear of sprays/and or water going in her nose/so we don't do rinses)....her doc came up with the idea to try hypertonic 7%, twice a day, with a mask. She already does all her nebs with a mask, so that was no change for her. She tolerated it well in clinic and did this morning also. She coughs some during the treatment and has since coughed a few wet coughs this afternoon.
She still hasn't got the hang of doing pft's, so we don't have any numbers for that. They did her normal throat swab, results will be next week.
Discussed the H1N1 vaccine, they want her to have it as soon as we can get it. We were not sure if we were going to give her to her, but after talking with her doctor, it sounds pretty rough. They have many kids pretty sick with it. They stressed to me how hard it hits the lungs. So, I guess as soon as we can find it, she will get it.
Due to the fact that Zoe won't use an inhaler for her albuterol (she nebs it), now with the added hyper, she sits for 90 minutes in order to do albuterol, hypertonic, pulmozyme, then 30 minutes of vest. A long time for a little 5 year old girl to sit, but she is a trooper, takes it so well.
Speaking of Ms. Zoe, she is begging me to play with her.....sooooo....off I go!
Jada

Just Life.....

I don't know....just life....lately. We have been back to school...back to normal stuff...just life. I guess this is a good thing. There hasn't been any MAJOR drama. Just normal dealing with teens....bills...omg the medical bills piling in...I wonder sometimes if we will EVER catch up with the medical bills from Zoe....probably NOT.
Zoe has been doing soooo good. She has started lately with a little clearing of throat/cough when exhaling/talking...so...we have clinic tomorrow, I am expecting an excellent visit...meaning....I am really waiting for the other shoe to DROP. Why does cf do this to us? Make us skeptics???
Scott's wonderful parents visited! We had a terrific time with them! We even had a lovely dinner out....that was wonderful, getting to enjoy a few hours of time talking with them without the little ones wanting attention. They are great parents! We love them dearly!
On another note....we are in the business of fall fund raising with CFF. We volunteer for several events, attend several just for the fun of it, etc....fall is a busy time!! I will try to post the pics of the first poker run we did, then had a dinner for the singles team zoe, next is a golf tournament, then my favorite, Moonlight Martini's, then my next fav...Singles Greatest Night! Lots of fun! Singles....let me explain who they are....they are a bunch of single people in Jacksonville, Fl., that normally have no connection to anyone with CF. They are just awesome single adults who want to make a difference. They join one of the teams (like team Zoe, team Leila(she is in my pics above, team cammie etc...there are only around 6 teams). Each single person is committed at the beginning of the season to raising $1500.00!!! YES!!! That is each individuals commitment!! These are AWESOME single persons! Then on Singles Greatest Night (in November) they have a speech, auction, etc... to celebrate the money they raised! It is terrific-as all of them are!!! We are so grateful for each and everyone of them......
Take care of you and yours...................
Jada Pictures above in slideshow of singles, Madison's b-day, Caleb's weekend home(shooting guns).

Beach Vacation!

A very generous man offered his beach house for our family to use a couple of weekends ago! We haven’t been on a family vacation in years, it was much needed and appreciated greatly!
The house was perfect , the view was perfect, the company was perfect, I never wanted to leave. I have always felt a calling for the beach, maybe I was meant to be a beach bum. Except for the bum part. I spent countless hours sitting on the deck, enjoying the sun and ocean breeze.
We took all of our food for meals, we tried to make it extra special for the kids, so we had steak one night, mahi another night, Belgian waffles (with fruit, whipped cream, butter, syrup, sprinkles), icecream cones, eggs benedict. It was good. We literally stayed at the beach house the entire time. Scott did have to go into work a little on Sunday, so he brought pizza for lunch that day, other than that, we cooked.
It was so relaxing. The kids got up at sunrise the last morning and went out on the beach collecting shells. They spent a lot of time collecting shells, they ended up with well over 200.
The house had every thing I would have in my house. Stereo system that played in every room with controls in every room, even played out on the deck. Built in cutting board on the island, Kitchen Aide icemaker (made those perfect little ice cubes for drinks), wine cooler. Our shower had 4 shower heads and was the same size as my walk in closet! Oh yeah, the music played in there as well! A washer and dryer on both floors. The most amazing thing the kids loved, an elevator!! You drove your cars into the 3 car garage on the bottom level, then you could load you stuff into the elevator, go up to the 2nd or 3rd floors. It was a blast!
I haven’t been that relaxed in forever. It was great for our entire family. So, if the generous man that blessed us with this time at the beach, reads this, THANK YOU from the bottom of our hearts!!!!!!