Zoe for Life

Hospital Discharge day

2012-01-24T14:38:00.002-05:00

Today is discharge day!! They've already de-accessed her port and re-accessed it with a fresh Huber needle. She did cry a little when they put the new needle in...but we think she is still sore from the placement surgery. The plan is....2 more weeks of IV Timentin and IV Cipro, CT scan of sinuses, 4 days of Prednisone at the end of the IVs, then sinus surgery again. Poor baby....it will have been a very long, hard month on her when it's all done.
This is a picture of her portcath de-accessed. The red spot in the middle is where the Huber needle was. All the nurses said it looks wonderful! The surgeon was very conscientious about where he placed it so it wouldn't show with tank tops and swim suits! She doesn't really care either way...but it was still nice that he thought of that.
Thank you all again for everything!! You all are the BEST!!! — at Wolfson Children's Hospital.

2012-01-19T15:20:00.001-05:00

Just came back from recovery..... Really sleepy still. They placed the successfully... Thank you for everyone's prayers and positive thoughts.... Scott & Jada

2012-01-19T09:17:00.001-05:00

Zoe will be NPO today, her Dr has her on iv fluids to keep her hydrated. She will have surgery this afternoon to have a portcatherter placed. We are all hoping and praying that this will give Zoe some "pain-free" CF years. She is so very anxious and scared of the medical personnel from being on this forward train of pain from iv's, piccs, blood draws...etc.....Her anxiety is at an all time high.
Please keep her in your prayers that this will be a successful surgery, that she will adjust to having a "permanent marker" of CF in her body.
It's hard for Scott and I to think of another thing added to her CF life. I think you always know these things are a possibility when you're dealing with CF, sometimes you're just not expecting it. Not at 7....
We have gotten a lot of positive input for the portcatherter....how it will make her admissions much easier on her. This is our hope and prayers.

2012-01-17T10:02:00.001-05:00

Hospital admission Day 1
Zoe was admitted to Wolfson Children's Hospital today due to increased wet cough, drop in pfts, a pneumonia bacteria and nasal polyps. It was a very rough day for her.
They tried to use a medicine called Versed (often called happy juice) to keep her calm during the PICC placement. It didn't work this time. She was crying, coughing and delirious. After 2 failed attempts at threading the PICC in her left arm, a peripheral was placed. She was very shook up.
Her cast was removed on her right arm last night so they can utilize it for a PICC. The PICC team will have her fully sedated today for this attempt. Please pray that all goes smoothly.
Her peripheral lasted for only one round of iv antibiotics before it failed. The iv site was extremely painful, she was in tears. It was removed at midnight last night. During the removal she got extremely pale and almost fainted. Then she promptly threw up.
So now we are an entire day behind with the IV antibiotics, blood work and cultures.
She is NPO today until the procedure. Hopefully it won't be too long.
Thank you for your continued prayers and thoughts for our little Zoe. Grandma and grandpa visiting

2012-01-05T01:25:00.000-05:00

2012-01-05T01:12:00.000-05:00

End of year 2011 post....

2012-01-05T00:40:00.003-05:00

It truly was a very nice year.....we all learned a lot about love, patience and endurance. God is awesome! Zoe was in the hospital only 3 times....that's a blessing to our family! She is presently doing ok....has just finished over 15 weeks of oral antibiotics to fight the bacteria that she is growing in her cultures....our other wonderful children are doing fantastic!
Austin will graduate a half a year early due to his good grades....yay Austin!!! The biggest news about Austin is that he had a corneal transplant in October!! He eventually will have to have both eyes done....but so far the first eye is showing incredible improvement!!! Hopefully by the time he is 19 he can get his drivers license! He was born with cornea dystrophy.... his latest vision tests before transplant were 20/100.....pretty rough.
Zoe broke her arm!! UUUGGGHHHH!!!! First child out of 8 to need a cast!!!! Just a few weeks ago at clinic, her nutritionist told me it was time to put her on extra calcium because of the affects of Cf..... so I bought extra calcium...then 2 days later, playing on the floor (carpet) with daddy, she broke her arm....arrrrgghhh!!! Poor baby just can't catch a break.....and she just finished 3 weeks of oral antibiotics because of the 2 nasty bacteria she is growing in her cultures.
Sydney finally got her life long dream of her own puppy!!! It truly was God sent!!! They love each other sooooooo much!!!!She is solid black and soooo adorable!!! Her name is Pippy!!!
Praying you all have a blessed 2012......
Take care of YOU and YOURS......
Jada

2011-12-19T13:39:00.001-05:00

We went on another road trip last week.....my sister, Alana, her kids, myself, and our kids. It was quite fun all crammed into our Expedition....8 people and 2 dogs!!!
We went to the mountains of Tn. to visit our parents. There was some lingering snow laying around that they had fun making snowballs and miniature snow men with.
Our parents are doing great! They look terrific as always! We also got to visit with our brothers and sisters. Many laughs were shared!! What a blessing to have such a wonderful family!!

Zoe cultured 2 bacteria in her last culture. So, she is on Bactrim again. :-(
Her pfts dropped a couple of points, so something else to keep an eye on.
Everyone is well and super excited about Christmas!!
Dalton and Donna have moved in with us for now...they're finally out of New Jersey!! And home where they belong!! They're first baby (our first grand baby) is due in May!!! We are all very excited!!
I'll update in a couple of days....with some new pics!
Take care of you and yours....
Jada

2011-11-28T20:21:00.000-05:00

Our beautiful girls.
Scott and his dad.
Scott's mom and dad, Scott and girls.
Madison and Zoe on boat.
Sydney enjoying the boat!
Fishing time with Pa!!!
Madison caught a Redfish!
Sydney caught a Redfish!
Zoe caught a Sheephead!!

2011-11-28T20:13:00.001-05:00

Road trip to Nana and Pa's...Zoe's service dog, Lilly, chillin....
Zoe asleep while doing treatments...Dramamine does that to our girl (she gets SUPER car sick)....Madison in the back with oodles of poodles!!!

2011-11-28T20:03:00.001-05:00

Happy Thanksgiving to all!!!
We had a wonderful few days at Scott's parents house in southwest Fl. What a blessing it is to have a relaxing few days!! We feel so loved!!!
Health update on our little Zoe:
She has been on 12 weeks of oral antibiotics since the end of July. Three different kinds for 12 solid weeks. She seemed to get better after that for a couple of weeks...but now she is coughing again. CF clinic is next week, also her ENT appt. I guess the pft numbers and culture results will show us where she stands. Always scary for us. It does look like we avoided the "Fall" hospital admission. Yay!!
Hopefully we won't have a winter one.....
We LOVE Christmas around our home! It's our favorite time of year. All the kids come home for a couple of weeks. I never feel happier than I do when we're all together.
This year will be extra special because our oldest son, Dalton, and his wife, Donna, are moving south finally....from Jersey. They will be staying with us until they save for their down payment on a home. But the BEST news is that they are having a baby!!! Our first grand baby!!!!! God is great!!!! They have also just found out that Donna is NOT a CF carrier (Dalton is)!!! Which means the baby will NOT have CF!!! An answered prayer!!!
Tara will be with us also starting Christmas Eve....to help with our traditional wrapping presents by fire...sipping Brandy Alexander's....setting out cookies and milk....can't wait!!!!!!
Take care of YOU and YOURS.....
Love,
Jada
For us all

2011-10-26T13:44:00.000-04:00

Alright alright..... Sorry, I adore cute pics!

2011-10-26T13:43:00.001-04:00

Why not.... A few more :-)

2011-10-26T12:41:00.001-04:00

It's been quite awhile since we have posted.... No excuse I know, but we've been extremely busy... Overall Zoe's doing great! I'm going to post a few older pics I ran across as well :-) well... As Jada would say... Take care of you and yours! Scott...

2011-07-09T11:39:00.001-04:00

Aunt Alana, Aunt Courtney and Uncle Andrew were there for the first surgery.
The surgeries went well. The first one took 2 hours, there was a lot of thick, infected mucus removed, along with cleaning out the ethmoid and maxillary sinus cavities. She was so infected, the swelling was pushing her septum to the side. She was in a lot of pain this time. It was very hard to see her hurting so badly. Her O2 did very well this surgery. She was discharged the next day to go home and recover for 2 weeks before the next surgery.
This next surgery was supposed to be what is called a "second look". Should take 30 minutes or less to go in, make sure all packing is gone, etc... After a very anxious hour and a half, Zoe's ENT came out. In 2 weeks Zoe had grown 2 huge polyps. Needless to say, her Dr and us were very shocked. It was decided at this time that Zoe had to do sinus rinses twice a day with a special compounded steroid to help keep her sinuses cleaned out as much as possible.
Poor baby, was in more pain again. She had an issue with her O2 that night in the hospital. I watched the monitor all night....it fluctuated between 88-91.
In the morning, she was sitting up and feeling good enough to eat and have guests!!! Go Zoe!!!
Hopefully these hospitalizations and surgeries will keep our girl healthy for a while.
It was a rough couple of months for all of us. Thank you all for continuing to hold Zoe in your prayers. Eating, her friend Michaela visiting, and finally happy to be home....with her Teddy bear gift.

2011-07-09T10:31:00.001-04:00

After first sinus surgery

2011-07-09T10:02:00.001-04:00

Waiting for surgery

Surgery, family and Great Strides!!

2011-05-04T11:01:00.004-04:00

Sorry it has been a while....things have been a little crazy around here.

After Zoe went off of iv's, we went to her ENT Dr. to see how the CT scan of her sinuses was after the round ov iv antibiotics. Unfortunately, her sinuses are packed with the famous thick, sticky, cf mucus.
She is scheduled for 2 sinus surgeries, the first is May 17th (which happens to be my 45th bday). This surgery will take a couple of hours and she will be in the hospital for a couple of days.
Please pray that all goes well with anesthesia and the surgery procedure. Last time she had sinus surgery, she had a problem with her O2 dropping down into the 60's....quite scary for us. She required oxygen until she was able to hold her own.

On a good note...my parents, all of our adult children, and some of my siblings were able to have a get together here at our home for a few days! It was lovely!
My parents have now left to go back to Tn. with 3 of our kids in tow for a few weeks! It sure is a quiet house around here. They love to go spend time at Grandma and Grandpa's house in the mountains. They climb the mountains, ride the horse, play with their ducks they raised last time they were there, help them with their garden, and just have a fun time with them! It is awesome to me that they get to spend special times like this with their grandparents!

Our Great Strides walk for Zoe was last weekend. Team Zoe for Life received the award for raising the most money....2 years in a row now!! Yay Team Zoe! We couldn't have done it without all the people that helped raise money and the people that donated to our cause!
Thank you all!!!

Take care of you and yours.....
Jada

Off of Iv's

2011-03-23T12:00:00.002-04:00

Zoe finally is finished with her 3 weeks of iv antibiotics! Yay! She was very happy to be free of her picc line.
The girls went back to gymnastics last night for the first time since Zoe's hospitalization. They were very excited! Poor Zoe could not finish her running warm up due to being so out of breath. It was sad. Hopefully after a couple of weeks back...she will be able to. She goes back to see her ENT doc on the 11th to see how her sinuses looked in the ct scan taken at the hospital. Hopefully they are ok and she won't need sinus surgery anytime soon.
CFF Great Strides fundraising time is here! Hopefully team Zoe will raise even more money than last year!!
Take care of you and yours.....
Jada

Zoe health update....

2011-03-11T19:41:00.000-05:00

Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital. Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened. I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol. Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!

Hospital Update...

2011-03-06T10:29:00.002-05:00

Zoe came home Wednesday evening! Yay! She will continue doing another 9 days of home iv's and checking her blood sugar levels. Hers were high in the hospital. Endo was super nice though and gave her a pink blood sugar testing monitor, super cute.
She was so happy to be home with her siblings and Lilly, her puppy!
Her ct scan did show that she has Bronchiectasis now. We weren't too happy to receive that news. We are doing all the nebs, without fail, she has never missed even one....so the other thing they added to try and help is MWF Zithro.
She is also doing Nasonex as a neb now. It has it's own machine...supposed to work better than the nasal spray.
Sinus ct still scheduled for the 11th, then consult with ENT to see if sinus surgery is needed. I hope we can wait a little longer. We will see.
Thank you for your thoughts and prayers for our little Zoe.
Take care of you and yours....
Jada

Zoe is in the hospital

2011-02-26T13:41:00.002-05:00

Well, we had a good run...2 years without being in the hospital! Zoe has been off and on oral antibiotics since October. She has SOB (shortness of breath) when doing minor activites...literally like crawling across the floor or running down the hall. Her pft's have gone from 105 to 83 in the last 2 months. We all agreed (her doctors and Scott & I)time for a good dose of IV antibiotics.
She had a PICC (peripherally inserted central catheter-an intravenous access that can be used for meds & blood work for a prolonged period of time) line placed, with a little help from our friend Versed (sleepy med). It took two tries to get the line placed....but it is good to go now.
She had her ct scan of her lungs yesterday to check for Bronchiectasis. A ct of her sinuses will be done after the full 2 week course of IVs.
Unfortunately, things didn't go as smoothly as hoped today. Her Dr. came in and informed us that her sugars are high. She was tested for cfrd (cystic fibrosis related diabetes)two years ago and was borderline at that time. So he ordered the 3 hour glucose test for tomorrow. We are really hoping and praying her numbers are good. Adding cfrd to cf is tough.
She is in pretty good spirits. Had a little crying session last night. WHY do I have to be in the hospital, WHY do I have to have a PICC, WHY can't I be at home....it is heartbreaking.
Will keep you posted on her hospital stay...
Take care of you and yours,
Jada

2011-01-28T10:44:00.000-05:00

Zoe's therapy dog...

2011-01-28T10:20:00.003-05:00

After much consideration.....we now have a 12 week old Standard poodle. We have been seeing Standard poodles as 'therapy' dogs in the last couple of years at different places. Zoe does 2-3 hours of therapy everyday. Sometimes it is hard to always have someone sitting with her to keep her company. Sooooo the therapy dog idea came into the picture!
This was last year when we talked about it with Zoe. She was very interested. BUT...we couldn't find one for less than $1000.00 !! The average price was $1500.00!! Obviously, we dropped the idea.
Last week, while going to sleep, Zoe had what we call a 'meltdown'. She was crying, very sad and upset. She wanted a 'therapy' dog, to keep her company during treatments, one she could call her own, to love her. I felt soooo bad. Yes, I am a guppy.
Now, the magic of all this....we get this free local paper every week in the mail. I have NEVER seen an ad for Standard poodles in this paper. This week there was one!! Not only that, but they were CKC registered white 11 week old pups. For ONLY $250.00!!! I called the lady immediately...yes, she had 3 females left...so Alex and I secretly hit the road to go get one! One of the pups (the one that we both liked the best),,came over to us and layed right next to us....she picked US!
Zoe was soooo happy!!!
We will train Lilly to sit with Zoe during all of her treatments. We think this will be a great thing for Zoe.

2011-01-07T12:18:00.001-05:00

Christmas 2010

2011-01-07T12:15:00.000-05:00

Christmas was beautiful this year! We had a houseful.....it was quite busy! As most of our readers know, my best friend, Mel, passed away 1 year ago. Her daughter, Jazmine, has become a member of our family...we love her just like our own! This year she was able to spend her Christmas vacation with us. This was a very special time for all of us. A super Thank You goes out to all of Mel's friends that sent Jazzy Christmas gifts, cards, letters...everyone was read and cherished by Jazzy. I can truly say she had a memorable Christmas.

All of our grown children made it home also! They all took their vacation times to spend 10-12 days with us. We stayed up late Christmas Eve, wrapping presents, laughing, hugging and totally enjoying each other's company.

Christmas day took about 5 hours to open gifts! We have a tradition where we start with the youngest, watch her open one gift, then go to the next person. Soooo when you have 13 people in your house....it takes a while to watch everyone open their gifts! It was lovely!!

During the two week time, we played a lot of cards, board games, pool, ping pong....tons of jumping on the new trampoline (everyone realized then how out of shape they were)...cooking, eating, drinking, staying up way too late and sleeping in way too late...laughed and hugged a ton...

For New Year's Eve, we all got to be treated like royalty at the movie theater. Elaine, our new friend who works at the CFF office, also works at the Regal theater. She arranged a lovely experience for all of us. 16 of us (all staying at our home at the time) arrived at the theater, Elaine greeted us with warm smiles and hugs, then we had a tour of the upstairs where they have the films. It was amazing! All the movies are in one long room. At this theater, most of the movies are still real film, only one was digital. Zoe was the special guest, so everyone else went down to the 'reserved' section for us to watch the new Narnia movie. Zoe stayed up top with Dad and Mom, to wave at everyone through the window, then push the button to start our movie! It was fantastic! After, Elaine had Narnia t-shirts, silly bands, notebooks and posters for all! Thank you Elaine!

Then a lovely dinner at Pepper's Mexican Cantina....fireworks and champagne at our home later to bring in 2011!!

The luggage 'piggy tags' were special to give to Jazzy for her new luggage(thanks to gift cards from Mel's friends)...they were mine and everytime I went to Mel's house, she was always wanting my 'piggy tags' for her luggage. So, I gave them to Jazzy and told her the story. We both were in tears....

It was a magical time...as my sister-in-law, Courtney sais....I LOVE MY LIFE!!!

slideshow above

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

2011-01-04T10:49:00.002-05:00

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

2010-12-05T19:37:00.001-05:00

Fall......

2010-12-05T19:17:00.004-05:00

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

2010-11-17T11:44:00.003-05:00

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!

2010-11-14T22:58:00.002-05:00

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

2010-10-22T09:17:00.001-04:00

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!

2010-09-30T15:08:00.002-04:00

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

Update

2010-08-23T22:08:00.002-04:00

Zoe is doing very well. She has learned this summer how to swim underwater !! For a little girl that has had a lifetime fear of even a drop of water on her face.....this is a major accomplishment!!! I am going to try to update the blog more often....I have to admit that I have been in a "funk" since my bestfriend , mel, died in December , from Cf, the same devastating disease our daughter has. Take care of you and yours, jada

Update

2010-08-23T22:05:00.001-04:00

Ok this is a test of the iPhone post

2010-07-11T14:26:00.001-04:00

Jazz's visit

2010-07-11T14:16:00.002-04:00

Jazz has been here almost 2 weeks. She is having a terrific time! Tons of swimming, some canoeing, fishing, building tent city, playing a little Mario....her and the kids get along wonderfully. She also had her first ever Starbuck's...and LOVED it....we may have created a Frapp. monster :).

She has had a couple of sad times of crying where she needed me to hold her, cry with her and just talk. I'm hoping these times will help her in coping. (If you are new and aren't aware, Jazz, is my bestfriend, Mel's, daughter. Mel passed away in December from Cystic Fibrosis.) They live in NY and I made a promise to Mel that I would have her down in the summers.

Zoe has been doing awesome! She actually has been putting her face under the water in the pool now!!! That is a major accomplishment for our little Zoe who has had an extreme fear of even a drop of water on her face. So now maybe this winter we can work on sinus rinses. Ugghh.

Posted above is a new slide show of the last 2 months around here!!

Take care of YOU and YOURS,
Jada

2010-05-30T15:30:00.001-04:00

Clinic

2010-04-13T22:18:00.000-04:00

My baby girl's day consisted of this.........wake up....breakfast......1 1/2 hours of treatments w/cpt......thrown in van for one hour drive to clinic........talk with research, nutrition, doctor, pharmacy, resp. tech, then the dreaded throat swab........then the never accomplished before PFT attempt.........then head to lab for yearly blood draw..........did EMLA...on the inside of elbows........first try.......NO GO.....my baby girl being held down by myself and her research doctor........try again....only good looking vein is on the back of hand...of course...NOT EMLA creamed.....go for it we say.........HOLDING a screaming, crying, sweating, scared to death little girl down.....YAY...finally get a good stick........... 10 vials of blood later.........we get to leave.....she is limp, exhausted, white as a ghost.........has me carry her out....Andrea, our CFF lady was there with us today........I'm sure a new experience for her......thank God she was there, she helped carry my notebook, purse, meds from pharmacy....say goodbye to dear sweet 8 month pregnant Andrea,....head home an hour...to do what when we get home????????? TREATMENTS!!!!!!! OMG. I am so over CF. I'm sure Zoe is also. Poor little girl....what else would a little 6 year old girl want to do today?????????UGGHHH!!. Sometimes CF just SUCKS. That is it. Take care of YOU and YOURS,

Happy Birthday Baby Girl!!

2010-04-07T17:11:00.002-04:00

I can't believe our baby girl is 6 today! Time sure does go by fast. I ask her all the time why she is growing up so quickly....she tells me it's because she eats so good!! She asked me if it had been 6 years ago that she was "hatched" from me....LOL....that is what she calls having a baby!! I love the things that come out of llittle ones mouths!
Have a wonderful day!!
Take care of you and yours........

Jada

To celebrate her 6 years.....please consider donating $1.00 for every year she has been with us!! That's just $6.00!! Simply click on the Great Strides link to securly donate to the CFF!!

Fundraising, infections and kiddos.....

2010-03-25T22:44:00.001-04:00

We had our annual Ben and Jerry's Free Icecream fundraiser on Tuesday. The most we have ever raised was about 325....we raised $508.00 this time!! I was really surprised. There was a whole lot of $1.00 bills put into the bucket....those ones sure do add up! Thank God for generous people!!

Zoe still hasn't gotten over her sinus infection. We have been fighting it for over 2 months now. First we watched it....then we called in....then we had the 3 weeks of Augmentin....then we watched it for 2 weeks again...now we have called it in again because it is still driving her crazy....runny, thick, yellow mucus, out of breath, etc..... sooooo... now we were put on Cipro. Yay. The fun begins. Anyone out there have any advise on how to deal with the "rules" on before and after times for taking Cipro with antacids and milk products??????? Any advise would be helpful about now.....

As far as me....I have had a few sad times lately. Does it get better? I sure as hell hope so. Yesterday there was a voice mail showing on my house phone. I hit the play button.....it said....one new message....then it proceeded to play a message from Mel. From several months ago. It blew me away. I cried. Couldn't even listen to the whole thing. I didn't even know this message was on my answering machine. How can a message be there but I've never heard it for months???

My 3 middle kiddos left Tuesday for Tn. They will be staying with my parents for 4-5 weeks like they did last year. They have a blast when they go there. I miss them terribly, but know they are in the best hands!
I hope and pray you all are doing well..... take care of YOU and YOURS................................
Jada

Great Strides

2010-03-10T22:02:00.000-05:00

I have been humbled. When I put up the Great Strides link on my cf.com blog....I really didn't think anyone would donate. Hell...we are all fighting the same disease.
I have had several people from this site give to Zoe's Great Strides.....some say...go team Zoe....others are doing it in memory of Mel..... Thank you!! I love ya'll....................
Today is the 3 month anniv. for Mel's death....and Friday is her birthday....hard week for me. Jazz is feeling it also....please keep her in your thoughts and prayers.
Take care of you and yours.........

2010-02-27T13:36:00.002-05:00

I'm sorry for neglecting my blog...I just haven't felt like blogging. I am going to try to be more faithful in the updates.
The last couple of months since Mel's death have had their ups and downs for me. Sometimes I just have to cry, cry out loud, sob until I can't anymore. It helps.
Zoe has been sick the last couple of weeks, she has a sinus infection. Her clinic put her on 3 weeks of Augmentin. It seems to be helping some. Her ballet is going great, she still loves it!
It has been freezing here....all of our Hibiscuses died :( We will have to plant all new ones when we can afford it. Ugghhh.
My parents have been staying in their camper on the base here for a couple of weeks, it has been alot of fun having them over for dinner almost everyday. They will leave to go back to Tn. tomorrow. I'll miss them terribly!
Last weekend Dalton and Donna flew down from NJ for their grandmother's memorial. It was so nice to see them again. Scott and our oldest daughter, Tara, had been scheming a surprise visit from Tara for me.....she showed up last Friday night while Scott, myself and the 3 youngest girls were having dinner at our favorite place, Bonefish, I was so surprised, I hugged her forever and cried like only a mom can. So for the entire weekend I had all of our kids and my parents here....I felt blessed.
It is Great Strides time again! I have put a link on the blog where you can go to Zoe's Great Strides page. Please visit it! You can either donate online or join the team and raise money! Every dollar makes a difference!
I think that is about all the updates for now....
Thank you........
Take care of you and yours,
Jada

Mel's story part 4 final post.

2010-01-27T13:38:00.001-05:00

The final post about my bestfriends last days is done.
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52583&catid=446

Mel's story part 3

2010-01-20T14:57:00.001-05:00

Part 3 of Mel's story.....
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52372&catid=446

Take care of you and yours......
Jada

Mel's story part 2

2010-01-11T14:14:00.000-05:00

Part two

http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52129&catid=446

Take care of you and yours,
Jada

Mel's story

2010-01-05T17:03:00.001-05:00

I will be posting Mel's story on my cf.com blog. Here is the link if you want to read it.
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=51945&catid=446

Take care of you and yours,
Jada

Mel.....

2009-12-17T13:47:00.002-05:00

My best friend passed away December 10th at 4:28 a.m., with me holding her hand as I had promised her.
Please pray for her daughter, Jazmine Rose, who is only 12 years old. Also, her husband, Robert.

I am not sure what my days are going to hold....Mel and I talked everyday on the phone. I miss her so very much, my heart aches beyond belief.

I love ya girlie.....all the way to heaven and back.

Jada

2009-12-06T13:21:00.002-05:00

Zoe's appt. went ok, they would not give her the H1N1 booster because she was so sick. She has been put on 3 weeks of Bactrim. She is coughing a little less today and has more energy. Hopefully she is on the road to recovery.
Mel (my bestfriend) is doing the same. Her CO2 level got to be 81 the day after she went on the Bi-Pap, but now it is back up to 88, using the Bi-Pap. I am flying to New York tomorrow, a very generous couple has bought me my tickets and hotel near the hospital. Our oldest daughter, Tara, is on her way to our house right now to take care of Zoe while I am gone and Scott is at work. I couldn't make this trip if it wasn't for these angelic people in my life (the couple, my husband-Scott, Tara). People that know and love Mel, are hoping and praying that me being by her side will help her in some small way.
Please pray for Mel, Zoe and my family to be well while I am gone.
Jada

2009-12-03T17:49:00.002-05:00

The last couple of days have been rough.
Zoe woke up in the middle of the night Tuesday with so much mucus in her throat, she was constantly choking. She has a really bad sore throat, runny, stuffy nose and a wet gunky cough. She was already scheduled to go to clinic tomorrow for her H1N1 booster, so, I'll let them take a peek at her then to see if they want to do antibiotics. We have had such a long stretch without her being sick.
My bestfriend has been in the hospital for 2 weeks now with a CF exasperation. She is not moving forward, but backwards. For the first time ever in her life, she was put on the Bi-Pap machine to help her with her breathing. Her CO2 level was 92. Normal is in the 20's-30's. She can't talk while on the machine, so she has her social worker calling me to give me updates. Thank God. I'd be going insane without knowing how she is doing.
It is so hard, being so far away (she lives in NY) and not being able to do anything. I have to admit I've been pretty scared about losing her. Please join us in prayers for her to make a turn around.
Another sweet, young, lady with CF passed yesterday. She was a mother to a little 6 year old boy. She died from complications with her CF from getting H1N1. Her name was Ginger, Gingerloveslife, was her user name for cf.com. She loved life. Please pray for her family, husband, and son.
Well, a blog of yucky news. Sorry, but sometimes this is what it's like.

2009-11-30T12:20:00.001-05:00

November....

2009-11-30T11:56:00.001-05:00

I can’t believe it has been almost a month since I have written. Time flies. I will try to recap things! My memory seems to be failing me a little more often than I’d like to admit.
I think I will give you the recap by following the pictures in the slide show….
When Nana & Pa came through to visit in Oct., Pa captured this great picture of Nana with the girls! Also the tomato plants are the ones that Pa and Nana helped the kids buy and plant. Pa is the professional at tomato plants! Nana is doing well after her breast surgery to remove the cancerous lump. She will start radiation soon. Please continue to keep her in your prayers.
Caleb has been home for several passes. He graduates from Youth Challenge Academy on Dec. 19th! He is enlisting in the National Guard this week. We are so proud of his accomplishments!
We adopted 2 female kitties from a lady that does cat rescues. The girls LOVE them! Due to several members of our family being a little allergic, they are outdoor kitties.
Our family took at one night get away to St. Augustine, Fl. We found an inexpensive hotel on the beach w/ a pool that had a huge waterslide! It was a much needed get away for just a single night. My sister lives in Palatka, which is about 45 minutes south of St. Augustine. We live about and hour north of St. Augustine. We hadn’t talked in a couple of months. Have you ever realized when God does something that was very much needed in your life? He did that day. While we were enjoying the waterslide at the pool, around the corner came my sister! They also were taking a one night getaway, out of the blue. What are the chances that we would be at the same hotel, the same night??? It was awesome! We got some much needed talking done….girl talk! Yay! The kids had a blast having their cousins to play with!
We had several CFF events in the last few months…..Golf, Tango by Moonlight and Singles Greatest Night. There are pictures for all 3 events. We were volunteers at the golf event, attended the Tango event, and were the parents of an Ambassador for the Singles event. Our friends at the Singles event, Chris, Carrie and Keeley are all also parents of Ambassadors for Singles. There are only 4 Ambassadors that the teams of singles raise money for. I have talked about these singles before, they are amazing young single professionals that commit to raising at least $1500.00 each for CFF! There is always a competition to see which of the 4 teams will raise the most money. This year, Chris (team Cammie) decided that whomever won would get to flaunt HOT PINK HEELS. So, as you can see, my dear friend, Keeley won the honors, her daughter’s team, team Leila won!! It was a fantastic evening with friends! The Singles raised over $150,000.00!!!!!!
We have a newly acquired used drum set in the middle of our house. It is LOUD! The kids love it though! Zoe is practicing to be like Emily from Rock CF!!
We were blessed beyond our belief last week…..
The school, First Coast Christian, has been doing our Great Strides Walk for team Zoe for a few years now. Which is a blessing in itself. But…this November they have what they call a month of love. For each week of Nov. they have a special person, family, organization, etc….they write letters to, raise money for, have a whole single day of prayer for that person, etc… Well, they picked our little Zoe for one of their weeks. To my total astonishment, as you can see in the picture, they wrote hundreds of letters to Zoe. We sat down one night and read them. We cried many tears during that reading session. The letters were from the youngest kids to the high schoolers. Straight from their hearts. The love and caring in their letters was unbelievable. One girl wrote how she was donating her paycheck, some gave icecream coupons, all gave their prayers and hope for Zoe’s future. I cry still when I think about these kids.
The funds they collected could not have come at a more perfect time. You see, we were behind in our rent for almost the exact amount they gave us a check for. We have had a bunch of medical bills and medicine co-pays lately, so things were tight. I cried when I opened the envelope. Scott and I were just talking on the phone before I got to the school that day about how we were going to come up with the rent money. I am still in awe.
We lost 2 more Cf’ers this month at cf.com . A young lady and an 18 month old little boy. We NEED a CURE. Our hearts break for the families……please keep them in your prayers.
My dearest friend, Mel, has been in the hospital with a CF exasperation for 11 days now. She has had a rough time. She normally has to stay at least a month to get a good lung clean-up. I feel so helpless being so far away….. Please add her to your prayers…..
As far as health goes around here…..Scott had a horrible cold that no one but him caught. But this week Caleb and Alex had a new cold. We are hoping and praying that Zoe doesn’t catch it. Zoe has been doing very well! We feel so happy that she has been so healthy for such a long stretch!!
Well, if you held out this long, thank you!
God bless you and yours………
Jada

News this week

2009-11-09T22:42:00.001-05:00

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!

2009-10-28T20:10:00.001-04:00

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

2009-10-22T16:48:00.000-04:00

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

2009-10-20T22:54:00.001-04:00

Just Life.....

2009-10-20T22:50:00.003-04:00

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).

2009-09-30T14:01:00.001-04:00

Beach Vacation!

2009-09-30T14:00:00.001-04:00

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!!!!!!

98,000 deaths a year....

2009-09-17T09:37:00.000-04:00

Did you know that approx. 98,000 people in the country die every year due to medical mistakes???????? It is right up there with the top killers, along with cancer, diabetes and heart disease. Wow. I didn't know it was that bad until I read an article yesterday in this months Good Housekeeping magazine. The article is written by a mom who lost her 18 month old due to medical errors. Mainly miscommunication.
Sometimes, while in the hospital, I have caught myself saying to my very attentive husband, "They are medical professionals, honey, they know what they are doing." Well, yeah, probably. BUT mistakes happen. We never take our eyes off of what Zoe's nurses and docs do while she is in. Of course, we can't see what goes on in surgeries. We actually have a 'reputation' on the cf floor....as the parents who are "very meticulous about their daughter's care". Oh well.
Anyways, for your info....her site is josieking.org

Today's update

2009-09-14T13:44:00.003-04:00

Well, little Ms. Zoe is sick. She is having to miss her ballet class tonight, poor thing. Please keep her in your thoughts and prayers that she can fight this on her own, she JUST finished a month of Bactrim last week.
Thank you,
Jada

2009-09-10T21:50:00.001-04:00

Flowers and Army Camp!!

2009-09-10T21:46:00.001-04:00

Well, today was a melancholy kind of day.....missing my company.....
After breakfast, treatments, school, the girls and I headed out to lay by the pool, swim a bit, just RELAX.:sun; It was a beautiful day. Around 91, sunny, blue skies. Perfect. BUT....I missed my girlies. Being an adult woman, hanging with kiddos all the time, really makes you appreciate the times when there is another adult woman around to talk to, drink coffee(and wine;)) with.

Anyways, updates around here are......
Caleb was home last weekend for his first pass from the Youth Challenge Academy. Oh, did I miss him. He has totally thrived in the Army environment though!:D He looks terrific! Hair all shaved, had gained 10 lbs. of muscle weight, and seems to have grown in maturity years!!! He will be back the 3rd weekend in October.

Austin is doing awesome in public high school, got his progress report today. He had a 97, 97, 95 and an 83. Not too bad.:) He also joined the wrestling team and seems to love it so far!

Alex has been sick for a few days, started out with a sore throat, stuffy nose, then headache, then cough, now the sore throat is better, just a cough and headache.
He is quarantined to his bedroom. We take him food, water, cold meds, etc....he sleeps and watches movies.:( I think he is on the upside....hope so anyways.

We had an emergency room visit last weekend with Zoe. Not CF related at all. Well, not exactly anyways.;) Zoe has an extreme fear of taking bandages off. Mainly due to PICC bandage changes. Sooo, being the parents that we are, have chosen the taking a band-aid off as a battle NOT to pick. So, we have always literally let her band-aids FALL off. Well, it finally bit us in the....you know what.....her band-aid was bright RED all around it, I took it off to find a horrible, red, indented(literally the exact shape of the band-aid) yucky area. It looked horribly infected to me. So off to the small local ER to see. Nope, just a band-aid reaction from having it on so long. Uggghh. Guess we learned our lesson there.
Other than that, she finished her Bactrim tonight, 4 weeks solid. Her nose finally seems to be clear. She has her ENT appt. next week.

We also did interviews yesterday for the Children's Miracle Network Telethon that a local radio station was doing. Zoe actually talked on the radio! I was totally shocked that she talked! It was sooo cute, she said, "Hi Madison, Sydney and Alex, I love you!!!"

Sunday is our CFF Jacksonville Jaguars Tailgate function. We have been every year since Zoe's diagnosis. This year, Scott HAS to work:( so, just Zoe, one of the older boys, and myself will go. It is a terrific event, we love it!

Anyways, to the pics....they are of Caleb at his YCA, and of my flowers. This is the first year that I have such a wild variety of colors with my hibiscus's. Never have they had such variations. I love them! Enjoy!

Hope ya'll have a terrific weekend....
Take care of you and yours.....

2009-09-08T22:37:00.001-04:00

Mel & Terri's visit

2009-09-08T22:29:00.002-04:00

My blog on the last few weeks isn’t going to be super long. I think I will touch on the highlights, leave the other details to my terrific friends that visited.
Zoe, Sydney and I picked up Terri around noon on Thursday at the Jax. Airport. We headed home, stopping at Taco Bell for lunch. We relaxed around the pool that evening, sipping wine. We cooked blackened Mahi, baby red mashed potatoes w/ rosemary & garlic, and a salad. Then we played games! My son, Dalton, and his lovely wife, Donna were here now also. We had a very fun night!
Next day, Terri, Dalton, Donna, Zoe and myself went to the airport to pickup Mel and Jazz. Everything went very smoothly for them, thank God!
After all were settled in their bedrooms, kind of unpacked, we all relaxed. We had grilled cheeseburgers with all the sides. After 9 at night around my house is considered “adult” time….the humor, jokes and language all change a bit. It became the running thing that we couldn’t say “that” yet….it wasn’t after 9. My oldest daughter, Tara, and her bo, Cecil arrived also. Soooo….we had everyone here! 14 people!! Except for my 17 year old son, Caleb, who is away at Army camp. This first night of everyone together was hilarious. The laughter, games, and drinks flowed until WAAAYYYY too late. Somehow, my son made a comment to his wife that started a laughing episode that lasted for I swear an hour. Our faces, guts, and throats all hurt the next morning because we all had laughed so hard. Ok, guess I’ll have to tell you the comment…..they have nicknamed their small poodle ‘the bush’, because she is so fluffy. Well, she was sitting in my son’s lap, under the table, he looked at his wife, Donna, and said, looking down at his lap, “How do you like my bush??” Tara heard this and about died…..she ???? him about it, then it became known to the whole group at the table about the “bush”. I swear, I have never laughed so much. I don’t think anyone else had either.
Much coffee was needed the next morning. Thank goodness, everyone slept in. Saturday was a day by the pool, cooking alfredo for dinner, then playing another game at night again.
Sunday was bowling for all! That was quite fun also! We had to have 3 lanes. Poor Terri, for some reason, her ball kept getting stuck in the back…she was always standing at the ball holder…waiting for her ball!!! It was a blast though!
Then we headed to our little Mexican rest. For dinner….all 14 of us! It was awesome company, food and margarita’s! Home to get kiddo down……then one more night of board games! Whew! It was so much fun….but I do believe we all were getting tired!
Monday we took Terri to the airport to say our goodbyes. We sure missed her after that….she brings a smile to my face constantly…love you Terri!
Things settled down a bit after Terri, Dalton, Donna, Tara and Cecil all left on Tuesday. We got into a more relaxed, quieter routine. Mel and the kids had a Monopoly game set up for 3 days that they kept going back to. Mel and I sat outside every morning in the lounge chairs sipping French vanilla coffee, quietly chatting and enjoying the outdoors.
Treatments were done in the mornings, Mel in her room, Zoe in hers. I gave Mel a book to read while she was here, considering we don’t have t.v…..it was called “The Smoke Jumper”…she loved it, finished it while here! The kids all got along wonderfully! Jazz, Madison and Alex bonded very easily.
Jazz got to go out on the river in our canoe with Scott and Alex, she caught a shark! She had a terrific time!
We went to the beach one day, just for a couple of hours. It was perfect. Mel stood in the water up to her shins, looked at me and said, “This is intoxicating.” Perfect. Just what I wanted, her to love it.
We rented a golf cart in little ole downtown St. Marys, rode around in it for 4 hours. That was quite an experience. Strange, riding around in town with an open air vehicle, that makes no noise (it was battery operated). Fun!!!
Friday night was date night….for Scott and his 2 ladies…Mel and myself! We introduced Mel to drinking Captain Morgan with ginger ale in gas station coffee cups…..while on our way into Jacksonville….then we introduced her to a true southern tradition….HOT NOW doughnuts at Krispy Kreme! Headed to one of my favorite, cheap things to do on a date……the card section at a large book store. We stood there for about an hour, reading, laughing, singing, you name it….I think Books A Million was very happy when we finally left!
We then went to Bonefish Grill, the rest. That supports CFF all the time, everyone there loves Zoe, they treat us like royalty. There was a hour wait when we got there, but they seat us right away! And they almost never let us pay our bill….they are the sweetest, kindest people, we truly love them!
I think the next few days, we relaxed, swam, laid in the sun, read books, cooked, talked a ton, what a vacation should be!!!
The kids had built tents covering the game room , we dubbed it “tent city”. Alex, Madison, Sydney and Jazz slept in it for several nights! The last night before they left, Mel and I sat up, had a few glasses of wine, and finally had a good night of girl talk! The kids were playing truth or dare….coming out to us often with their ‘dare’….it was quite funny!
This was a couple of weeks in my life that I will never forget. There was much laughter and tears. The day that Mel lost Ellie, was a hard day for us. I’m glad she was here and not alone. CF in all its reality. We cried for Ellie, for Mel, for Zoe, for all of you that have CF in your life....

I hope you enjoy the pictures!

Take care!

Newspaper article and update on Zoe

2009-08-16T09:46:00.001-04:00

First an update on Zoe....her ENT said she definately has a pretty bad sinus infection. It is swollen and bulging in her sinuses. So....she is on Bactrim and an antibiotic ointment for the inside of her nostrils because they are red and raw. Please keep her in your thoughts and prayers that this clears her up.

Here is a link to an article in the Sunday Savannah paper today! http://savannahnow.com/node/767579

The picture is of Sydney, not Zoe though....uggghh. Other than that, it was a pretty decent article the guy wrote.

Take care all,
Jada

2009-08-12T19:27:00.001-04:00

Where does time go????

2009-08-12T19:19:00.002-04:00

Talking to Mel this morning, she asked me if I had posted a new blog since the one the 29th? I'm like, well, no, please don't tell me it has been that much time already. Ugghh. Where does time go?? I can't believe it is only 7 days until Terri flies into my airport and only 8 days until Mel and Jazz fly in! It seems like we were just planning the visit.....that was MONTHS ago. My parents were right. Time does INDEED go by faster as you get older.
We received a letter from Caleb. He sounds like he is doing fantastic in the Army Academy. They made him squad leader of his squad. It was funny reading how he is responsible for having them alll outside at 5:25 a.m. and also for assigning people to clean the barracks....he said if it isn't done...he is the one that gets in trouble. He finally will realize what it is like to tell other people what they have to do and how it feels when they don't do it. He also went repelling the other day, said it was a blast! He does pts, drills, and school. He did the Army opsticle course and left everyone behind! I felt very proud of him!
Austin is doing great in his second week of public high school. So far he seems to really like it.
Zoe started ballet Monday. She loved it! Sorry all the pics of her in her class are blurry. Rest of the kiddos are all doing good, getting their school done in the morning, then swimming all afternoon!
Scott and I went to our fav. Mexican rest. last night because they were having a Mariachi band. Like I need an excuse to go eat great mexican food and margaritas! It was a blast! They were very entertaining. Also picked up the money they have been raising for the CFF. They collect $1.00 for every rose pin-up. Then they tape them up. They had $170.00 collected! They want more pin-ups and posters of Zoe to put in all the bathrooms. They are such a great bunch of people!
I'm getting soooooooo excited about Mel, Jazz, Terri, Tara, Cecil, Dalton and Donna all getting here next week that I can hardly stand it!! We were discussing the wine status....no bottles for that 4 days....we will be doing the "O box of wine"....or rather BOXES!
Zoe has ENT tomorrow, so I guess when she looks in her nose, she can decide whether the infection she has been fighting the last few weeks needs an antibiotic or not.
Must run make dinner now....take care....

Yeah!!!!

2009-07-29T17:09:00.001-04:00

After 5 years of having a little girl who was scared to death of getting even a drop of water on her face...........5 years of her being afraid to take a bath/shower..............5 years of her being scared to wash her hair........... Our little Zoe is swimming!!!!!!!!!!!! As of today!!!!!!!!!!! I was in the pool, she was all sunblocked, had her t-shirt on, then asked if she could sit on the steps. I said sure! Next thing I know is, I've convinced her to get in with me without using her 'swim vest'. Then we started practicing doggy paddling......then I let go of her!!! She did it!! Several times across the shallow end (of course, with me right there) We are so excited.....our little girl is getting braver. Hopefully this will lead to doing things like 'nasal washes'!
Other news..... Caleb has been gone into the Army Youth Challenge Academy for almost 2 weeks now. I miss him. He will be gone for 5 months. I really hope and pray that this will enable him to grow up a bit and be ready for the big real world.
After much thought and tears, after exclusively home schooling for almost 20 years, after my 15 year old pleaded his case, we have decided to allow him to attend public high school. It was a hard decision. The school does seem to be a 'good' school. They have a complete seperate building for the 9th graders (which is what he will be), it is called the 9th grade academy. Hopefully it will all go well.
My son, Dalton, and his wife, Donna, who live in N.J., are coming to visit for the first time since Christmas!! They will be driving down. And to make it even more special, they are coming the weekend that Mel and Jazz are here! My oldest daughter, Tara, and her boyfriend, Cecil, will also be coming that weekend! It will be a crazy, wonderful time! I can hardly wait!
Zoe has had a 'yucky' nose for 2 weeks now. Still just watching it to see if it will go away on it's own.
She got her ballet leotard, tights, shoes and skirt in the mail today. She is soooo excited about starting ballet classes on the 10th. This is the first class of anything she has ever taken. She loves to watch ballet. Of course, I am nervous. The first thing she has ever done outside of her cf world. Being around other girls....I start with all the what if's.......what if they tease her about her throat clearing/coughing/ her nose being congested, her big tummy, her gas, you know..... I know she can't stay protected forever.... Then there is the sickness factor, I'm hoping that parents don't send their girls to ballet class sick. ugghhh. Obviously, I'm thinking WAYYY tooooo much.
Well, I suppose this was long enough...
Take care everyone!!!
Jada

Clinic visit....

2009-07-15T20:56:00.001-04:00

Zoe had clinic on Thursday. She has been doing sooooo good lately, I knew it was going to be a good visit! Her BMI is sitting right at 60%! She sounded clear....looks and acts great! She did her throat culture without crying this time. She is growing up to be quite a little lady!
Received her culture results today.....for the first time in I can't remember when....she cultured....drum rollllllll........NORMAL ORAL FLORA!!!! WOOOOHOOO!! Which explains why she has had such a good couple of months now.
We are busy swimming, doing some school here and there, dentist and ortho appts., literally just enjoying this time of 'wellness'!
Hope you all are having a lovely summer also!
Take care,
Jada

Happy Dad's Day!!!

2009-06-21T19:07:00.004-04:00

Happy Dad's Day !!!! We have had a lovely day! Scott worked until 11, came home, we swam in the pool all afternoon, I read my new cook book, then we did treatments, started par-boiling the ribs for Scott's Dad's day dinner! It was then time to make the salad...I normally do this myself....but considering the girls have a garden (totally organic...yeah!!!) and we have our first cucumber and yellow pepper from it....I thought it would be great if we did it together! Zoe got to "cut" something for the very first time. Of course I have this "kid proof" knife that I had ordered from Pampered Chef YEARS ago. It is awesome! You can saw and saw.....but not cut yourself!
The garden!!

Madison, Sydney, Zoe cutting their veggies!!1

Zoe is still doing awesome! Yeah!

I hope you all had a very terrific Dad's day and weekend!!

Jada

This weeks happenings....

2009-06-13T23:02:00.015-04:00

I feel so blessed lately. Honestly. To go months without being in the hospital in the CF world. Wow. It's almost like I can live a "normal" life.....is there such a thing in the CF spectrum? Don't know. If anyone has the answer....let me know.

Anyways...we were invited to the "Dream Night at the Zoo". It is just for children with medical issues. A night where you can go to the zoo, ride the carousel to your hearts content (normally $2.00 a ride), pet the stingrays (normally $2.00), feed the giraffes (normally $2.00), ride the train (normally $4.00) ...eat a dinner they made.....had popcorn, icecream, drinks......ALL FOR FREE!!!! It was so awesome! Zoe and the girls rode the carousel 4 times!!!!!!! It is Zoe's favorite part of the zoo. Of course, she loves the maze also......

Alex, Madison, Sydney, Zoe on the metal elephant

the giraffe feeding!!!

the walkway through the zoo

we are home to the Jacksonville Jaguars Football team.....so naturally we have Jaguars at our zoo....the mommy Jaguar just had her first baby....his name is Harry....isn't he cute????????

Zoe at the wishing well....she literally does not pass up the chance to make a wish...whether it be a 'wishing flower' or a 'wishing fountain'....we have to do them all....

the carousel that we rode 4 times!!

exiting the maze......

famous Florida Manatee picture

getting a little tired now.....

this is the view from the walking path at the zoo....the river in Jacksonville.....absolutley BEAUTIFULL!!!!

girls making "projects" for when Ms. Mel comes to visit......still have to wonder....Mel....

tonight, I cut my foot somehow...don't know how...all I know is all of a sudden I saw a blood trail all along the kitchen floor.... my family came to my rescue....including the "boo-boo bunny" that Sydney insisted on being on my foot....Zoe received the "boo-boo bunny" as a gift last time she was in the hospital....

now, they had to put a bandaid on it.....MOM is ALL fixed up now!!! It has been a good weekend so far.... Zoe has been doing very well health wise. We feel very blessed! Almost like a normal family........except always waiting for the 'other shoe' to drop....doesn't CF suck??? Take care all......

Sundaes and homemade salsa....

2009-06-04T21:45:00.003-04:00

Last night we had sundaes! Actually I should clarify this.....the GIRLS had sundaes.....I had a glass of wine... Considering the fact that Scott and I have started back on our Weight Watchers and working out....sundaes just don't quite fit in to the picture. Uggghh.

But tonight....I got to COOK again! I made California Fish Tacos....with a homemade salsa that Scott helped me make!! It turned out very yummy-and low in calories/fat!

I think the worse thing about me dieting is the fact that I can't spend my 1-2 hours in the kitchen, listening to my 'chillin mom-making dinner cd', having a glass (or two) of wine, and creating a meal for everyone to enjoy. I LOVE this part of my day. When we are dieting...we tend to do a Lean Cuisine, salad, tons of veggies. BORING!!!!

Sooooo....tonight I send you pics of sundaes....that I don't dare go NEAR....and the homemade salsa that Scott and I made....which is kind of pica in case you were wondering...(pica means HOT in spanish!)! Oh so fresh though! YUMMMM!

Hope you all have a great weekend! Take care of you and yours!

Jada

Visitors Galore!!!

2009-05-22T18:48:00.004-04:00

Last week started with an unexpected visit with Scott's youngest son, Connor! We haven't seen him in 5 years, so it was very nice!! He is a great kid! He wins a lot of skate boarding competitions. Hopefully we can get him down to visit in the summer.

Wednesday Scott's dad arrived. Scott's mom decided this time to fly all the way back to Vermont instead of making the long drive, can't say that I blame her! We miss her terribly! Pa is a great addition to our already crazy family....he is cooking for me tonight and tomorrow night!! Yeah!!!

Thursday evening is when Tom (Just1More), Jo (TestifytoLove), (blogging friends from CF.com) and their lovely 8 children came to visit. I tried very hard to get the kids names down pat by the time they left, but at the end of the night, I was calling one of their sweet daughters Johanna. Uggghhh! They were in the door about 3 minutes and I had already kidnapped the baby! He is such a sweet baby! Ansu, their oldest is soft spoken (with that beautiful African accent), sweet and very helpful. Jo said he was sent to her from God, I believe it. Emily is next, I can't say that I saw her much, her and my Madison hit it off immediately, hence were off doing 'girlie' things the whole night. Caleb is their 'future engineer' or whatever involves a lot of brains....he is one smart little guy! Chetan was the birthday boy....I think he really enjoyed his dirt & worm cake. He has a very sweet, gentle spirit! Micah is their little CF'er. He is a sweetie also....I do believe he has more energy than I have ever had my entire life!! He loved throwing the ball for Tamber, he was amazed that she would bring it back to him! Tom and Jo have done an AMAZING job with Micah. Honestly, he was in really rough shape when they adopted him. They deserve a special place in heaven for their love and care! Ragan (what a GREAT name by the way)was a little distraught because her new necklace broke, I felt bad for her, but Jo and Tom eased her tears with promises of a new one. She has absolutely beautiful eyes!! Little Elena....what a cutie! She was shy at first, staying in Tom's arms. She finally warmed up enough to get down. She really liked swimming! Our pool was FULL of kids! There she was right in the middle of it all, in her little float ring! Then there is the finale....baby Judah! Ooohhh I just loved holding him, especially after he fell asleep, there is nothing like cuddling with a sleeping baby! He NEVER gets put down, they said there is always someone holding him! I can see why, he is just so darn cute! It was great meeting them all! We had a very nice night (a little loud and crazy....but fun).

Have a GREAT weekend!!

Jada

Yucky week for Zoe...

2009-05-20T16:28:00.004-04:00

Zoe caught a cold last week so we have been watching her. It seems to be all in her nose. Completely congested and drippy. Then she started Sunday with lower abdominal pain. She had that off and on until yesterday afternoon, when her G.I. doc wanted a x-ray to make sure there was no blockage. At this point she came down with a 102 fever! Thank God, there was no blockage. Her CF clinic calls to tell me lab results (which I already knew), that she had cultured OSSA (just regular ole Staph.), asked if she was sick at all, to which I replied with the complete last week and a half run down. Soooo...she started Bactrim today. They don't want her sinuses to get any worse.
Scott's dad arrived today, he will be here with us until Monday. He is great to have around, keeps the kids busy playing games, cards, etc.... :)

Tom, Jo, and their 8 lovely children will be over tomorrow on their way home from their Make-A-Wish trip to Disney. (They are blogging friends from Cf.com). They will be having dinner and b-day cake here (one of their son's b-day is tomorrow). We can't wait to meet them all in person!

That is what is happening around here. Take care!
Jada

I'm an Aunt again!!!

2009-05-16T20:56:00.004-04:00

My youngest brother and his lovely wife had their first baby this week! Her name is Stella Nicole Jenkins, weighed 6 lbs. 11 oz. They are on cloud 9! Patrick is the last one of us ( out of 10 kids) to have a baby, so it was pretty exciting! She is beautiful!

By the way....recognize that purple bracelet??? It sais 'Breathe', the other side sais "Cure Cystic Fibrosis'....Patrick and Misty both wear one for Zoe.....I had them made and sell them....if anyone wants any, just let me know!

Zoe had her ENT appt. on Thursday....she had come down with a cold the beginning of the week, but I haven't called clinic because she really isn't coughing. It seems to be all in the nasal passages. Granted, it could progress, but we decided to wait and let her ENT look. She agreed, it is all sinusitis right now. She did give me a script for Bactrim, if she doesn't improve, or develops a cough, we will start it. Her culture from last week grew Staph. We'll take that. At least it wasn't her MRSA. Other than that, we go back to Cf clinic, GI, and ENT all in July.

Have a wonderful weekend.....take care of you and yours....

Jada

Good News Finally!!

2009-05-08T16:43:00.001-04:00

YEAH!!!!!!!!!!!!! Zoe gained 2 whole pounds!!!!!!!!!!! In just over 6 weeks!!! Truly a lot of answered prayers!....and a lot of food!!! That puts her BMI at 54 %...they want it to be a minimum of 50 %, so we are good for now!!!

I did discover Haagen Dazs Icecream though! Did you know that the chocolate peanut butter has 23 grams of fat in just 1/2 cup!! OMG! She LOVES it!!

They don't need to see her until July now. We just have to keep stuffing her.....and pray that her culture comes back clean. Hopefully then we can have a few months break...she needs it.

Thank you all for your thoughts and prayers.....
Jada

Great Strides Walk

2009-05-04T16:37:00.019-04:00

Princess Zoe

Zoe made a Mommy's Day Craft

Benjamin Alex

Our team shirts

My sis, Sharonda & neice, Chelsey

Caleb & Austin finished First

Sydney, Dad, Zoe-Home Depot project

Ben&Jerrys-CFF ladies, Austin, Alex,Madison

Nicole(Bonefish Grille) & son
Reece (his first fundraiser!!!:)

Mandy, Rielly, MiKaela, David
(Bonefish for Zoe)

The table at Ben and Jerry’s was great! They had a great turn out all day. It is awesome because we got to talk to practically everyone about CF! We made about $250.00! Met several wonderful families that came to the walk that next Saturday.
There was around 200 or so at the walk. They think they will have made around 55-60 thousand! It was a lot of fun. Zoe doesn’t do the walk, she and I stay and talk to people, oh, and she EATS while everyone else is getting exercise! My sister and her daughter came with some of her co-workers, the friends we have at Bonefish Grille came, families with their kids from the Christian School….it was so nice to see people there to walk for our Zoe!
We have started going bowling on Sunday afternoons as a family (on Sundays it is only 99 cents a game). It has been a blast! Even with Zoe just throwing her ball down at the end, she still ended up yesterday with a score of 83! Yes, bumpers are an AMAZING help!
Zoe’s appt. is Friday. I am very interested to hear what all the docs have to say. Also to see if she has finally gained any weight.
Hope everyone is having a lovely spring!
Jada

Fundraising Time of Year!!

2009-04-15T22:24:00.002-04:00

I am so excited! Last year I did a table at Ben and Jerrys for free icecream day....they were debating which charity to let do it this year....to be fair and all....well....they are letting me do it AGAIN!!!!!! Yeah! When customers go through the line to get their icecream, they send them all to my table to get their '10% off' key tag for B&J for the year, sooooooo, they have to look at my CFF stuff! Since they got their icecream free, most of them will donate something. Last year we made almost $400.00!
I also was in my favorite local Mexican rest. yesterday, talked to them about selling the pin-ups at the register. They talked about it and said YES!! So, tomorrow I will be dropping off posters I made tonight and the pin-ups. They all just adore Zoe, they even have her card taped to their wall right next to the check out!
As far as Zoe's tests, still waiting. Will let you all know as soon as I know something.
Have a great night!
Jada

Yesterdays results

2009-04-08T22:03:00.004-04:00

Yesterday was Zoe’s “Official” 5th Birthday….but she thinks it was last Saturday. We celebrated it early for several reasons….Scott left Monday for Tulsa on business for 2 weeks and yesterday she had the 2 hour blood glucose test w/ an i.v., we didn’t want her to relate another birthday to the hospital. I doubt she remembers her 1st birthday, but, it happened while in hospital for 2 weeks when she was diagnosed.

So, her birthday was great! She had a Princess cake and Princess presents. Today she even received a wonderful present from Kaylee and her terrific grandma(Kayleesgrandma)!!!

We got to the CRC (Clinical Research Center) at Wolfson Childrens Hospital (Zoe’s normal hospital) at 8:30 am…she was NPO since 9 pm the night before. I had put the EMLA cream on 4 areas of her arms. The nurse she had (who is in charge of the CRC) was awesome! She was able to get a vein first try! Zoe still had a lot of anxiety before the needle going in….but when she realized it was over and didn’t hurt…she looked up from crying, smiled and said, “So, do I get stickers now???” We all laughed.

Then the blood drawing started. That was a lot of blood. You can see by the pictures how many tubes there was. They used everyone of those. After they got all the blood they needed for all the labs, they drew the first draw for the glucose testing. It is called a ‘fasting’ draw, fasting being because she was NPO since 9 the night before. The nurse put it in the tester, I looked at her, she said, it’s high. Uggghh.

Now, she had to drink the glucose syrup. That went a lot better than I thought it would….I used an oral syringe, gave it to her like a medicine. She got it all in within 2 minutes! Then we wait for 1 hour to take the next draw. Her brother, Austin, our oldest daughter, Tara, and her boyfriend came to be with us, so that was a nice distraction for Zoe.

Next draw……she said, it’s high. I think I wanted to run in the bathroom and scream, cry, kick, you name it. I had fully expected to go in to the CRC, do this test just as a ‘ruling’ out test. I really did not think she would test high.

Her last draw was borderline. I said, “So, where does this leave us???” She called Zoe’s clinic, who said they will wait on all the other blood work, like the insulin levels, IGA levels and A1C levels. Then all her docs will discuss all the results and decide what/if there is anything that needs to be diagnosed or decided on. The blood work will take 2 weeks. So, the waiting has begun.

Tomorrow morning Zoe and I have a short meet/greet/ speech at a highschool for fundraising for our walk. Hopefully I can do this gracefully without crying.

Well, I need to go read a book to Zoe and cuddle her into bed…..

Good night all….take care of you and yours………

Jada

The woes of CF......

2009-03-31T20:47:00.001-04:00

Today’s clinic visits started at 1:30 with pulmonology. I was dreading the weigh in, thinking that she probably held her own, but didn’t gain. Nope, she has officially LOST weight now. I almost cried right there on the spot.

After a long discussion with Pulm., Nutrition, Research, G.I., this is what they have decided to do…….

Pulmonology has ordered:

1. CF Respiratory Screen (much to Zoe’s resp. nurses surprise, Zoe coughed a nice thick, mucousy cough when she went to swab her, so got what she called an awesome “gooby”! Her nurse was so excited to get that from Zoe, she ran it to the lab herself!)
2. Hemoglobin A1C
3. Glucose/insulin tolerance test – 2 hour ( to check for CFRD-Cystic Fibrosis Related Diabetes)
4. Continue on her oral Bactrim for an extra 2 weeks, finish the 2 weeks of inhaled antibiotic, Gentamicin.

G. I. has ordered:

1. Vitamin A Assay
2. Vitamin E Assay
3. Calcifediol (250H Vitamin D-3) Assay
4. CBC, PLT and Diff
5. C-Reactive Protein
6. Hepatic function Panel>1 yr.
7. Prealbumin Assay
8. Tissue Transglutaminase IGA/IGG
9. IGA Immunoglobulin Assay
10. Fecal Fat, Quantitive 48 hour

The big thing was to try to get all this all scheduled at the same time. Thank God, our research specialist, Rena, was there. She is awesome! She was at one of Zoe’s blood draws and saw first hand how hard of a stick she is, and that she turned as white as a sheet, almost fainted.
She pulled some strings, got Zoe her glucose test for 8:30 Tuesday (they are backed up until the end of May)! They also will do an I.V. so, instead of them having to find a vein 3 times for the glucose test, then again for all the other blood work, they will just access the I.V. Thank you Rena, only ONE stick. Also, they will be able to insert a NG tube to give her the glucose syrup if she won’t drink it herself. We knew this might be an issue considering she won’t drink anything except water. I am going to try to use syringes, telling her it is a medicine that she HAS to take, that normally works…..but it is 4 ounces…a lot to put through a syringe.

Also, starting Thursday I have to do a detail food log, exactly how much she eats (measuring everything), what I added to it (butter, cheese, etc…) the exact amount of fat and calories she ate. We do this for 5 days. On the last 2 days (Sunday and Monday) we also have to collect ALL her stools in these containers they gave me and freeze them. I turn them all in ( to a different lab) on Tuesday when we go in for the glucose testing and blood work. Mind you, all these tests on Tuesday, are on her 5 year birthday. Ugghh. Doesn’t CF suck? I think we might tell her birthday is another day. She is still young enough where we can get away with that.

I really appreciate that her doctors are checking all possible causes of no weight gain/weight loss before just immediately putting in a g-tube. If all these tests come out fine, then they said we talk about g-tube.

I have a lot to blog about…..my parents party….going to Mels…..but I am kind of down tonight after todays Dr. appts…..so, thought I would just update on our little Zoe tonight. Please continue to hold her in prayer……thank you from the bottom of our hearts….

Love,
Jada & Scott

The past week

2009-03-24T15:50:00.004-04:00

The Jenkins Family March 21st, 2009

My house is back to its normal status. The kids are all home. My parents and sister have gone back to Tn. It is different around here…we had 5 weeks with just Scott, Zoe and myself. Then a week with all my kids, my parents, my sister & her 3 kids.

The big secret that I couldn’t blog about, was a surprise party that we have been planning for 3 months! My parents read my blog….soooo…I’ve not been able to write about it at all!!

Everything went perfectly. Noelle and I stayed up very late for 4 nights doing a scrap book for them, it turned out beautifully. We also wrote questions like….what was your favorite car….what was your favorite song as a teen….which one of us kids gave you the most “headaches” growing up….which one of us kids was the most accident prone….what was your favorite house….what was your favorite saying your mom and/or dad said….etc…??? We put them in a bowl, then Saturday night we all gathered around them and asked them the ??, it was awesome! We all had a blast, talking and laughing about the past! I am proud to say that I didn’t make the most “headaches” or “accident” ones!!!!

My parents were completely surprised, they really had NO idea about it. Eight out of ten of us kids (with their families) came! I had 40+ people in my house for 2 days! I LOVED it! My little brother and his very lovely, 7 month pregnant wife, flew in Thursday night from Dallas. It was great having them here with us. Having Noelle here and Patrick was so much fun for me, I love having family around. It was sad to see them all leave.

My mom cried for 20 minutes after the initial “surprise-shock”. She hugged everyone forever. Dad just kept saying, “I can’t look at mom, or I’ll start crying too”. It truly was a gathering that they will never forget, nor will I
.
On another note, our little Zoe is sick. She has an extremely wet, junky cough. She is choking on mucus everytime she coughs. So….for the first time since her sinus surgery (3 months ago), she is on antibiotics. Oral Bactrim and Nebbed Gentamycin. If any of you cf’ers have ever nebbed Gent., you know how HORRIBLE it smells and tastes. Poor Zoe. 2 times a day added on to her other nebs. I feel so bad for her sometimes, having to sit for 2 hours in the morning, then an hour at night. Hopefully this will knock it out quickly.
Then of course, she isn’t eating quite as well, being sick. Her CF and G.I. appts. Are next Tuesday to do her weight check. Just GREAT. She hadn’t gained anything still as of last week before she got sick, so being sick sure isn’t going to help any.
Thank you for keeping her in your thoughts and prayers.

Laundry is calling….take care.
Jada

Kids are home....

2009-03-18T11:46:00.000-04:00

Sorry I haven’t updated in a bit…but things are a little wild around here right now.
The ‘missing’ kids returned safely Friday night! Yeah! They had the best time with their grandparents! My sister, Noelle, and her 3 little girls are staying with us all week. We have had a lot of fun! We ran out to the beach yesterday in hopes of sun, so she could get a couple of pics of her and the girls. It got all cloudy & windy on the way. So we stayed just long enough to get the pics and let the girls pick up some seashells.
Today is our 9th wedding anniversary! Nine years sure can go by fast! Happy Anniversary Honey! I love you forever and always!!
Zoe woke up with a 101 fever this morning….so we are watching that. She had a couple of coughing attacks in Wal-Mart yesterday….uggghhh. If her cough increases then I will be calling her clinic.
If anyone listens to the radio program “The Wall Street Journal This Morning”, tomorrow morning, Thursday, Gordon Deal will be airing a program “The Longest Commute”. Guess who will be in it???Yes, my husband! We have NO idea what Gordon is going to say….just hoping he puts some focus on CF, for the awareness. This is a NATIONWIDE program, so the awareness could be awesome!
Take care of you and yours…..
Jada

Scary days....

2009-03-10T21:10:00.002-04:00

I haven't posted on this subject...mainly because we were just so scared. Scott was sent home at 9 a.m. Thursday morning...they said his computer was 'flagged' by I.T. They took his badge, keys, computer, and sent him home. We have been trying to keep super busy around the house, doing 'fix-up' things that we never have time to do....meanwhile...wondering what the heck is going on.
We have some very good friends, who the husband works with I.T. people, tell us...no worries...big companies do this all the time. They are looking for people that might be 'selling' company info. Well, needless to say, Scott doesn't do that. So, for 6 days now, we have been wondering, going stir crazy....does Scott have a job...are we going to be jobless, homeless, insuranceless, etc...
We got the call at 4:15 this afternoon.....it's all FINE. Sure. We go through pure HELL for 6 days....wondering...and it's all FINE. He reports back to work in the morning. Big companies = SCARY.
All I have to say is.....THANK YOU GOD!!!!!!!!!!!! Thank you....the people that did know about thiss...for praying for us. We have a job still.
On another note....the kids get back Friday night! Yeah! We miss them! Zoe REALLY misses them. She needs someone else to play with besides mommy and daddy.
She has started coughing/clearing her throat more in the last couple of days. We will just watch for now....see if it progresses.
Better get some sleep....take care of YOU and YOURS....
Love,
Jada

Grilled Cheese Hearts

2009-03-02T21:06:00.004-05:00

Soooo...I have become creative...trying to find ways to get Zoe to eat good fattening food! Here is a picture of tonights dinner for her....tomato soup made with 1/2 & 1/2 and real butter, grilled cheese with real butter, 3 slices of Land of Lakes American Cheese, cut into perfect little hearts for her..... She ate both of the hearts and a few sips of soup....she likes to dip her sandwich...just doesn't eat much of it. As you can see by the picture...she still will only drink WATER....uggghhh

We have been doing all sorts of things around here lately. Scott is painting our bedroom. Yeah! It was a nasty, burnt yellow, baby diaper poop color before. YUCK!!! Of course all of us cf'ers can relate to the nasty color! So, now it is like this.....3 walls are a turquoise color...the other wall(behind the headboard) is chocolate brown. Our comforter is the exact turquoise color....I bought a pillow to go on the bed that is the brown swirled with the turquoise. I love the soft blues like this...feels very tropical, soothing to my soul.

The kids are having a GREAT time at my parents. They got 12 inches of snow last night! They are in snow heaven!! They don't even hardly miss me. View from my Dad and Mom's deck!

Zoe is doing well. A few coughs here and there. Nothing to write home about. Her appt. is looming in the distance....about her weight. We will see.

Hope you all have a lovely evening....take care of YOU and YOURS.....

Love,

Jada

Zoo today

2009-02-25T20:34:00.007-05:00

I took Zoe to the zoo today! It was a perfect day for it. About 65 degrees, with some clouds and sun. My girlfriends little girl, Michaela went with us so that Zoe would have some company besides me. She loves Michaela, they are the same age and play together very well. So here are some pictures from our day.

Zoe is still doing really well! Had a big belly ache tonight. But still only an occasional cough!! Yeah! Have a terrific night....

This week

2009-02-20T20:11:00.004-05:00

I knew it was going to be tough without my kids being around.....BUT....this is crazy! (If you missed a few posts ago, my parents kidnapped my 4 kids for 5 weeks).

I am now Zoe's bestfriend, mom, play with me now, read to me now, talk to me now, etc...etc...etc... Phew! I am tired! I knew I wasn't made to be a mom of just one kiddo!!!

The bad points of my kids being gone:

I MISS them TERRIBLY!

I MISS talking with my older sons

I MISS them playing with Zoe so I can get a few minutes to....you know....shower...blog....

Zoe misses them!

Pixie (Madison & Sydney's dog) hides under the bed, under the chair, wherever she can to get away from Zoe's clutches...I have no doubt she MISSES the girls!

I MISS my older sons hanging out with me after Scott falls asleep watching a movie...

The good points of my kids being gone:

WARNING: MOST OF THIS WILL HAVE TO DO WITH NOT HAVING TO BE MODEST!

I can PEE without shutting the bathroom door

I can come out in the morning with NO bra on under my t-shirt

I don't have to worry about kids walking in my room after my shower

Scott is very happy that I can wear itsy bitsy nightgowns around the house at night

Zoe and I can go out to lunch for $5.00

My grocery bill is so much lower that this week I was able to actually buy things like towels and bathroom rugs

Anyways, the kids got to see snow yesterday, the first time for Sydney and Madison!! They have ridden my parents horse, gone fishing, gone to church, gone to Sam's Club, watched my dad be ordained an Elder, been spoiled rotten by my mom's cooking and played a billion card/board games with my parents! I don't think they will ever want to come home.

The other night, sitting in the 'comfy' living room chair, I was tickling Zoe. She was squirming, laughing....then she did the inevitable 'head-bang' on my nose...with her forehead! I actually heard a crack! OMG! I cried, she whimpered....Scott came running with advil and wine! I believe it is cracked, I can't even touch it still, it hurts so BADDD!

We had the poodles groomed today. The little one (Pixie) is so skinny, she looks like a rat now. I prefer her fluffy, but when noone brushes her, she gets so matted that there are no other options but shaving her. Poor thing.

Zoe's culture results from last week came back. Of course, something new. She cultured Yeast. They do not treat it. Soooo, that was good news (I guess??). Also received a letter that her next CF appt. is scheduled March 31st, along with G.I. So, we have 7 weeks to get the weight on instead of 6.

I will post some pics from this last week...

Hope you all are doing great....take care of you and yours....keep up the FIGHT!

Jada

Pixie before 'grooming'

Poor Pixie after 'grooming'

A very nice lady sent Zoe 'healing stones', these are the 'blood stones & quartz chloride'

We rub them on her everynight while praying !!

Making brownies with Daddy

Anybody besides me ever have a sippy cup (for your kiddo) and a martini (for you) on your nightstand????? :)

Clinic today...

2009-02-12T20:52:00.002-05:00

Trying to blow pfts for the first time!

Making a "funny" face before pfts!

What a looonnnggg day. Zoe had to be at CF clinic at 10:30, then ENT at 2:30. CF clinic visit: weight did NOT increase at all. Not one ounce. She is exactly the same as she was last July. We feed her the highest calorie/fat diet possible. With the exception of the supplemental drinks that would be awesome IF she would drink ANY of them. But of course, she doesn't like any of them. Her nutritionist said today, "Well, you are already pulling all my tricks....let's brainstorm...". So her and Zoe's doc talked and came up with a couple of things to 'try'.

We are switching her Zantac to Prevacid. Sometimes one works better/different than the other as far as working with the enzymes to utilize the fats/calories better. We are also adding 500 mg. DHA. They are scheduling her a follow-up in 6 weeks with CF clinic and G.I..

She also did pft's for the very FIRST time today! It was quite funny! She didn't get the having to push your breath out for a full 3 seconds down very well. Even with her only pushing out to 1 1/2 seconds, they were able to get a prelim. # of FEV1 = 102. They said they won't use her numbers in her records until she is 'good' at the technique.

ENT appt. went great! Her nose looks great! So we don't have to go back to ENT for 3 months.

So, that was our day, I'm tiried, going to go cuddle up in bed and watch a funny movie, need to laugh.

My kids left today...

2009-02-11T21:55:00.004-05:00

My parents stoll my kids!!! Honestly, they took them home with them for 4 1/2 weeks. Well, they took.....Austin 15, Alex 12, Madison 11, Sydney Kaye 7.....I think I might have a heart attack!!! :) Just kidding....but....being without my kiddos for ......yep....you guessed...a LONG time to ME....almost 5 weeks!!! I think I might go CRAZY!!!! Sooooo..... it is me, Scott....and Zoe. That is it. Oh my gosh. My house hasn't been this empty in.....hell....I can't remember when. Uggghhh.
Soooo, if you are on my calling list....BEWARE.... I may be calling much more OFTEN than usual.
MY PARENTS HIGHJACKING MY KIDS!

On another note, Zoe has her CF appt. tomorrow, and her ENT appt. All in the same day! Please pray that she has had a weight increase....other wise, we will be discussing WEIGHT...Uggghh.

Have a nice night....take care of YOU and YOURS....
Love,
Jada

A CF Reality

2009-02-03T22:17:00.002-05:00

Last night at 8:00 p.m., a small, sweet, adorable 7 year old boy named Garren, received a double lung transplant. He has Cystic Fibrosis. His lungs were almost useless....he had to have a transplant. He has been on the waiting list for 6 months. A double edged sword this is. We are grateful, excited and blessed that Garren gets a new chance at life.....we all know it is also a sad day...for the family that lost their child.
I met Garren and his mom (Victoria) in 2006 when I joined cysticfibrosis.com (my main support group). We call him G-man on the site! :) He is a trooper!
Please visit his caring bridge site http://www.caringbridge.org/visit/gmantxfund, say a prayer for him and his family.
Jada

A very nice Saturday....

2009-01-31T22:12:00.003-05:00

My parents are in town...I am soooo happy! I love being around them. We took some good pics by the water on our walk today. We live by the marsh...it is a nice walk to see the water.

My parents and I talked about CF alot tonight. They have all but convinced me to write a book about CF, our story, but also the knowledge that we have learned on our own. I know that when Zoe was diagnosed, we were handed a 'book' about CF. Well, I have to tell you, most of the things that actually PERTAIN to Zoe's CF, we have learned by doing our own research. Not from those silly handouts they gave us at clinic. Soooo...we will see...who knows??

Enjoy the pics of our day! I really hope and pray that you all are having a BEAUTIFUL weekend like we are. We feel very blessed right now...NO COUGH...Yeah!!!!!!!!!!!!!!!! Love Ya'll!!!

A Lovely Blog Award

2009-01-23T10:49:00.003-05:00

I just realized last night that I needed to post my lovely blog award.....sometimes I'm just a little sloooowww on figuring these things out. Ugghh.

I feel so honored...I have received 2 of these from new blog friends! Wow! Thank you guys!

First one is from M...http://acure4lilchris.blogspot.com/.....the second one is from Jessie...http://www.breezysbravery.com/.

The award is for those that step out of their comfort zone and meet new blogging buddies. Everyone I have met through blogging already has one....so I'll just say....lovely meeting you all...you all have LOVELY blogs!!! :)

Have a Lovely day....

Jada

Playing with my blog!

2009-01-18T23:19:00.004-05:00

In case you didn't notice....today I have been 'playing' with my blog. I want to be able to change out things on it....you know....like when you get the 'urge' to change the living room furniture around! :) At first I was looking into paying someone to make me a beautiful blog like so many I have seen....but money talks...and considering we are trying to conserve to pay things like....BILLS...I decided to do TONS of research on the internet to see if there was anything I could do myself. Soooooo I will keep playing with all this new info I keep finding until I get it right. Please bear with me.

Zoe is still 'cough', 'throat-clearing', 'runny-nose', FREE!! How awesome is that??? It has been a surreal few weeks. I did weigh her today. 40.5 lbs. Ugghhh. She weighed almost 43 lbs. 2 months ago. Being the first time since before diagnosis dealing with not gaining weight...it has me a little worried. I don't want this to be an issue. I don't want to even THINK about a g-tube. Yeah, I'm in denial, call it what it is. I want to 'fix' everything myself...but I can't FORCE her to eat/drink. How frustrating is it that a cf'er requires so much more calories/fat than normal kiddos.

My mom and dad get here the 27th. I can't wait! I love being with them. They are so encouraging to me. I need to be near them so much more as I get older. Hmmmm. Why does it work that way? When we are younger, have all that time with them, we don't want to have anything to do with parents, then when we get older, can't seem to get together very often, we CRAVE, NEED, CHERISH that time with them. Seems a bit backwards if you ask me!

Take care of YOU and YOURS......
Love,
Jada

Zoe's first dentist appt.

2009-01-06T15:13:00.002-05:00

Today was the day! She had been in a dentist office a few times with her siblings, but just to watch. Because of her major oral adversions and being afraid of people doing anything to her that might hurt, we had decided to wait until she was older and could understand it a bit more.

The x-rays did not happen. She gagged when the nurse tried to put them in. Thank God we found a new dentist office that works with little kids in a very calm, patient manner. They were super! She just told Zoe, "It's ok, now you know what they look like, maybe we will try again next time.".

Then we went to her room, passed by Austin's room where he was at the moment being cleaned. I thought it would be a good idea to show him to her. Guess not, because to her it looked like some woman with a mask was leaning over her brother with a "Pokey, sharp" thing. Hence, her melting down into a teary eyed crying session when we walked into her room.

The lady was super nice though, managed to talk her through cleaning her teeth (with her own toothbrush-she wouldn't let her use the electric one). Then she brushed the flouride on her teeth. The dentist, also a wonderful sweet lady, came in to look at her teeth then. The little brown spots that I was concerned about, turned out to be plaque. I first noticed them after her first sinus surgery. I thought it was something they put in her mouth during the surgery that did it. Turns out, apparantly, when your teeth are exposed to air for longer periods of times, like when under sedation and intubated, the plaque can turn color. Nothing for us to get to worried over, just keep brushing like we do. And do an over the counter flouride rinse at night right before bed. She didn't have any cavities!

Oh also, something else I learned....we always brush her teeth right after nebs and /or meds. That is a no-no. Figures. She is supposed to rinse her mouth with water, then 30 minutes later do the brushing. When you brush the teeth immediately after meds, it just grinds the meds into the teeth. Lovely. So, something else to remember....30 minutes after meds/nebs. UGGGHHH!! I told Mel, I think I will set a timer...it will be dubbed the "TEETHBRUSHING" timer.

She did NOT want a picture taken of her time at the dentist, but I snuck one in anyways. You can tell how thrilled she was with the whole dentist thing.

Have a blessed day,

Jada

I'm sure I'll pay for this tomorrow!!

2009-01-04T20:05:00.003-05:00

Igot the sudden urge today to go on a bike ride with my family. So I trucked to Wal-Mart, bought Zoe a seat to go on the back of my bike, and a helmet for her. Scott spent an hour installing it to make sure it was safe. Then we hit the road.

My butt hurt on the little 10-speed seat, so I switched to the bike with the Zoe seat. My butt was good on this one, but the seat pushed my body forward so I was having to hold my entire body weight up with my arms.

Soooo.....tomorrow I figure my butt, legs and arms will be killing me. It was fun though!

Here are some pics!

Zoe is doing well! No coughing, not much of a runny nose anymore either! She is eating Breyers Vanilla Icecream at this very moment....hopefully we will see her weight back up in Feb. at clinic.

Take care all,

Jada

Happy 2009!!!

2009-01-01T21:34:00.003-05:00

Mixed emotions on a new year....I feel old. How can another year pass so quickly??? How can my Zoe almost be 5???? How can this happen so fast??????

We had a wonderful Christmas! We spent about 4 hours watching everyone open their presents one by one. It was terrific! New Years was quiet. Just Scott, me and the little girls. Everyone else was gone. We had a nice dinner, Scott gave me a great massage, then we went to sleep by 11.....hence missing the midnight phone call from Mel & Terri.

Zoe is doing awesome!!! She isn't coughing and her nose is drying out some. Today she had a ton of energy, we take that as a good sign that she is doing well. Now just to get her weight back up! She is looking thinner to me, not as full in her arms, legs and cheeks. Always something.

I liked how some people recapped 2008....I'm going to recap a few things...

My kids did awesome in swim team...2 of them earned the most points for their age group!!

I got to fly to NY, stay with Mel, meet in person: Terri, Jane, Joni, Graves, Jeanne, Amy and Peter. I had the best time, fell in love with Jazz and Mel.....

Zoe was hospitalized 4 times between December and November.

Team Zoe for Life raised almost $10,000.00!!!!!!!!

I got to meet and become friends with Tammy Cochran.

We lost our house due to finances...moved closer to Scott's work...now he drives 100miles one way everyday instead of 140 miles.

Graves visited us...ate dinner...spent the night...we had a great time!

I have some very wonderful people in my life that I could not do without.....

My dad and mom visited...I love them so very much and wish I could see them even more!

Life is terrific....I cherish every moment and am going to try really hard this year to look at things more positive.

I pray you all have a very blessed 2009!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good Surgery!!

2008-12-14T18:21:00.003-05:00

Zoe's 2nd sinus surgery on Monday went very well! She still had some packing in her sinus cavity, so they removed that, cleaned her out again, took cultures and finished up in less than 45 minutes. Her O2 was great right after, holding around 96-99! She had her regular CF clinic appt. on Friday. These cultures came back clean also! So, she is still antibiotic free as of right now. She is recovering well, Dr. said she has a lot of 'boogers' in her nose for just getting cleaned out, but her ENT doc said she will have some drainage, etc... for a couple of weeks.

The yucky news was that Zoe had lost over a pound. Since her diagnosis, when we got her caught up on the charts, that was the last time we have ever heard anything about her weight. She has been in the 75-90%. It took a lot of work to get her there...but she has steadily been gaining since diagnosis. I think one of the things that has hurt us the most is that about 2 months ago, she decided that milk and Ranch dressing all taste weird now. She won't drink milk at all now and quit dipping everything in Ranch. She had always drank 8oz. of whole milk mixed with half & half at every meal. Now all she will drink is WATER!! Ugghh.

So, one of the things we are going to try is 15mg. of zinc a day. Her doc and nutritionist said that sometimes when things suddenly taste different or yucky, it can be a zinc deficiency. We all agreed it wouldn't hurt to try. They want to see her in 2 months instead of 3, to check her weight.

Thank you all for praying for Zoe's O2 to be good after this surgery....prayers were heard and answered!!

Have a wonderful week...

Jada

Surgery Again Tomorrow...

2008-12-07T20:37:00.002-05:00

We have had a nice weekend...took the kids to see Santa yesterday. We take them to a local realty office that has a 'real' Santa every year, so the girls get to see the same guy. They also have a little train ride that Zoe loves. I like to take them there because I feel that Zoe is exposed to a less germs than the typical 'mall Santa'.

Then I picked up my oldest daughter, Tara, who came home with us for the weekend. She babysat last night so Scott and I could do a little shopping and go have dinner. We ended up spending the whole time in one store, Ross, got some presents, then we were hungry and the pizzeria I wanted to go to had closed already! I must say, I do hate that part about being away in a smaller town now, everything closes so early! So we drove towards home, picked up a pizza at Papa Johns and ate pizza on our cozy bed.

Today we went to church, dropped all the kids off at the house, except Tara, Zoe and myself. We went to lunch and did a little shopping.

Now I am home, making baked brie, drinking a new wine Keeley told me about and starting to think about Zoe's surgery tomorrow. Uggh. Please pray that her O2 stays stable this time, so we can go home quickly. She has started a cough/clearing throat again yesterday, and her nose is driving her crazy running constantly since the last surgery.

Thank you all for your continued prayers! I pray that you and yours are doing well...

Love,

Jada

Culture Results....

2008-12-02T21:43:00.002-05:00

Yesterday was Zoe's follow-up after sinus surgery and pre-op physical for her next sinus surgery on Monday. I was absolutely shocked to find out that both of her cultures from her sinuses and her throat came back completely CLEAN!! They did not grow anything! I asked her doctor how sinuses that were completely full of thick, yellow mucus and pus could culture zero bacteria??? Amazes me. CF baffles me. Then there are the clinic visits where she seems like all is great and they call a week later saying she cultured some weird, nasty bacteria!?!? Don't get me wrong...I am THRILLED that she actually left clinic for the first time in I can't remember without having to get a script filled for an antibiotic!

So the plan is for her second surgery Monday. Please keep her in your thoughts and prayers that her O2 won't drop like last time. That was a little scary for us.

I have to share something that I thought was hilarious. On Zoe's check out paper from clinic yesterday her doctor wrote:

Patient Instructions:

-Ok off abxs

-Medically clear for 2nd look sinus surgery Dec. 8

-Ask ENT to repeat CF culture from tracheal aspirate

CF FU as scheduled

CF FU......MY THOUGHTS EXACTLY!!!!!!!!!!! LOL!!!!

Have a great day.....

Love,
Jada

Our Family 2008

2008-11-28T07:59:00.001-05:00