Bad news for a drug that we all thought was promising...

A drug, Denufosol, that all in the CF community was hoping was going to help with CF, just failed its Phase 3 trials. This is the first 'promising' drug that has failed in such late Phases since Zoe's diagnosis. I feel very saddened by this loss....that wasn't even here yet. Hope....crushed.

http://www.newsobserver.com/2011/01/04/898053/clinical-trials-let-down-inspire.html

Fall......

It has been an eventful fall for our house…wonderful…but busy! I think it has been so much fun because our “CF” life seems to be stabling out. Now, I’ve been told, WARNED, I should say, that this is the “honeymoon” stage of CF for us. I’m trying not to think of it that way. It has officially been a glorious 2 years since Zoe has been in the hospital! I’m not in denial….I KNOW first hand how CF can take over very quickly….I watched it with my best friend last year at this exact time. Then she died. December 10th. 4:28 a.m…..as I held her hand. So, I KNOW. But I’m going to take this time of good health and ENJOY every minute of it!
I’m going to try to cap what we did to kind of follow the slideshow!
Fall started off with warm, sunny breezes…
I think I put the pics of Graves visiting out of order....but...he did visit us in early fall. Graves is a very dear friend of mine and now our family. He lost his best friend to CF also. He also was very good friends with Mel, my bestfriend. He was there via phone/text the whole time I was in the hospital with Mel. Then he spent the whole weekend with me and my son/daughter in law after Mel died. We drove through tons of ice and snow...all to get to Mel's funeral. Love ya Graves!

Our oldest daughter, Tara came to visit with us for a week! That was wonderful…GIRL time finally for me!
Caleb (our 19 yr. old son) had his birthday while Tara was here, we ate and celebrated at our favorite Mexican restaurant. Caleb also got a job…we are very happy for him!
Austin (our 17 yr. old son, the only one in public school) was inducted into the Beta National Honor Society! We are so proud of him!
We have not been to either sets of parents houses since Zoe’s birth. My parents (grandma and grandpa) live in East Tn., the mountains. Scott’s parents (nana and pa) live in southwest Florida in the winter, Vermont in the summer. Zoe has always gotten so car sick, she throws up constantly. We discovered Dramamine! Oh my, what a miracle drug for Zoe. She can finally travel without throwing u,p. So we decided to hit the road this fall and visit both homes! We did my parents first…my sister, (Alana, Taylor and Brandon) and her 2 children joined us. We rented a 12 passenger van and hit the road! By some wonderful miracle, it snowed the first 2 days we were there! Zoe’s big wish was to see snow…she had never seen it before. It was beautiful. It was so good to see my mom and dad, brother Andrew, his lovely wife, Courtney and their 2 precious children, Trenton and Jax. It was a wonderful visit of great food, dominoes, horse riding, candy shopping, playing in the snow and plenty of talking & laughter!
When we got home, it was time for Scott’s parents to come through on their drive from Vt. To Fl….it just happened to be the weekend of one of our favorite CFF events, Moonlight Martinis. My sis, Alana, joined us also. It was a wonderful event with plenty of donations given to the CFF!
Then there was Halloween…the dressing up…going to a Starlight Foundation hayride, corn maize, candy, etc… By the way, if your child has CF, look up the Starlight Foundation, they have branches all over. They do super fun, nice things for your whole family once a month! Then the CFF Singles pumpkin painting.
CFF Singles greatest night was next. CFF Singles is a group of single, professionals from the Jax. Area that commit to the CFF to raise at least $1500.00 each. Some raise a lot more. They get placed on one of 4 teams that has an Ambassador. Zoe has been an Ambassador for a few years now. Team Zoe! They are a great bunch of people. The greatest night celebrates all the money they raised. We are so fortunate to have so many wonderful people working towards a cure for CF!

Next was going to Scott’s parents in southwest Fl. It was beautiful weather…warm and sunny! They welcomed us with open arms…tons of great food, cocktails, card games (nana and I didn’t win…uughh! Maybe next time!). Then they had a few events planned for us. First a nice beach day, collecting shells and sharks teeth, then ice cream at a cute little shoppe. The next day was Thanksgiving meal….YUMMY! It was wonderful! Next was a ferry ride to a private island….the ferry driver was so nice, he let Zoe drive the ferry! She was all grins! Then a nice walk and pics on the beautiful beach, dinner in the island restaurant. It was all terrific and we felt spoiled!
After all that….we came home to decorate for Christmas! My favorite time of year!
Zoe did get sick after all the travels….but her docs had already called her in a huge bottle of Bactrim. She has been on it for a couple of weeks now. Her sinuses are still pretty yucky, so we will give her the full 3 week course and go from there.
Well, if you read all this…congratulations! This is what happens when I don’t update often enough. So sorry!
Take care of you and yours….
Jada

Started Bactrim

Well our girl is still sick. Her 'croupy/dry' cough has turned into a 'wet/junky' cough. Poor baby. She told me yesterday she wants to do her treatments so she would be able to breathe better. Another CF milestone. When they realize their treatments help. So, the 15 mls. of Bactrim twice a day has started.
Hopefully she will be on the road ro recovery quickly. She has her regularly scheduled ENT appt. tomorrow, so that works out nicely. She can take a look at her to see how she is doing.
Thank you for your thoughts and prayers....
Jada

Zoe sick.....great vacation though!

Hello all. We went on a wonderful vacation to my parents....much needed...haven't been there in almost 10 years ! It was terrific! We had snow for a day....considering Zoe had never seen snow....it was a blessing! She loved it!!! Pictures to be posted soon! We went knowing that there was a 'cold' going around....but could not change plans. Well....Zoe has now come down with the 'cold' which is croup related. Uuugghh. She has a nasty cough, runny, stuffy, sneezy nose and sore throat. We wlll see if it goes away on it's own or needs Bactrim. Thank you in advance for your thoughts and prayers....
Take care of you and yours.......Jada

Update on Zoe and visit today from Graves

Mr. Graves will be visiting today! It's kind of the running joke to call him 'Mr. Graves' because the kids do. We will be making alfredo....his request...of course no complaints around here....the family loves it also! I'm sure there will be plenty talking, laughing and wine!
This will be the first time I've seen Graves since we were together in NY in December when Mel died. Hopefully we won't cry too much....

Zoe is still doing fantastic! She had clinic last week. She is at 67% BMI, blew a real 3 second pft for the first time ever! She blew a 97! The only comment was that she has difficulty expelling air. Which we already knew. She gets sob when she runs across the house. Her culture came back with OSSA again. This is 2 cultures in a row, but as long as she doesn't have any symptoms, we don't treat it.

Well, have to run...dogs have a very long overdue, much needed, grooming appt.

Hope ya'll are having a beautiful, relaxing fall!

Take care of you and yours,
Jada

Doing good!

We are all doing very well! Zoe is in fantastic health right now! We can hardly believe it has been almost 2 years since she has been in the hospital! Yay! I've been told that these are the 'good' years with CF....well, I'm hoping and praying they last for a looonnnggg time! :)
She has her next clinic appt. in less than 2 weeks, so hopefully all will stay good.
We have one of our favorite CFF events next weekend. Moonlight Martini's! This year we are so excited to have so many family coming with us. Scott's parents will be in town, coming through to visit on their way back to their southern home, so they will be attending! This will be their first time being able to attend a nice CFF event, they seem excited! Also, my sister, Alana, our daughter, Tara and boyfriend, Cecil will be staying with us and attending. A houseful! It will be so much fun I'm sure.
Our son, Caleb got a job finally!! He starts Sunday night. We are all very happy for him. He is also purchasing a car tomorrow. So, life moves on in the right direction.
Austin, our 17 yr old, the only one in public school, is doing very well. This is his second year in high school. He was just invited to join the Beta Honor Society!! We are so proud of him!
All the other munchkins are healthy and happy!
Take care of you and yours.....
Jada