Zoe for Life.... Our journey with Cystic Fibrosis....
Sunday, December 5, 2010
Fall......
It has been an eventful fall for our house…wonderful…but busy! I think it has been so much fun because our “CF” life seems to be stabling out. Now, I’ve been told, WARNED, I should say, that this is the “honeymoon” stage of CF for us. I’m trying not to think of it that way. It has officially been a glorious 2 years since Zoe has been in the hospital! I’m not in denial….I KNOW first hand how CF can take over very quickly….I watched it with my best friend last year at this exact time. Then she died. December 10th. 4:28 a.m…..as I held her hand. So, I KNOW. But I’m going to take this time of good health and ENJOY every minute of it!
I’m going to try to cap what we did to kind of follow the slideshow!
Fall started off with warm, sunny breezes…
I think I put the pics of Graves visiting out of order....but...he did visit us in early fall. Graves is a very dear friend of mine and now our family. He lost his best friend to CF also. He also was very good friends with Mel, my bestfriend. He was there via phone/text the whole time I was in the hospital with Mel. Then he spent the whole weekend with me and my son/daughter in law after Mel died. We drove through tons of ice and snow...all to get to Mel's funeral. Love ya Graves!
Our oldest daughter, Tara came to visit with us for a week! That was wonderful…GIRL time finally for me!
Caleb (our 19 yr. old son) had his birthday while Tara was here, we ate and celebrated at our favorite Mexican restaurant. Caleb also got a job…we are very happy for him!
Austin (our 17 yr. old son, the only one in public school) was inducted into the Beta National Honor Society! We are so proud of him!
We have not been to either sets of parents houses since Zoe’s birth. My parents (grandma and grandpa) live in East Tn., the mountains. Scott’s parents (nana and pa) live in southwest Florida in the winter, Vermont in the summer. Zoe has always gotten so car sick, she throws up constantly. We discovered Dramamine! Oh my, what a miracle drug for Zoe. She can finally travel without throwing u,p. So we decided to hit the road this fall and visit both homes! We did my parents first…my sister, (Alana, Taylor and Brandon) and her 2 children joined us. We rented a 12 passenger van and hit the road! By some wonderful miracle, it snowed the first 2 days we were there! Zoe’s big wish was to see snow…she had never seen it before. It was beautiful. It was so good to see my mom and dad, brother Andrew, his lovely wife, Courtney and their 2 precious children, Trenton and Jax. It was a wonderful visit of great food, dominoes, horse riding, candy shopping, playing in the snow and plenty of talking & laughter!
When we got home, it was time for Scott’s parents to come through on their drive from Vt. To Fl….it just happened to be the weekend of one of our favorite CFF events, Moonlight Martinis. My sis, Alana, joined us also. It was a wonderful event with plenty of donations given to the CFF!
Then there was Halloween…the dressing up…going to a Starlight Foundation hayride, corn maize, candy, etc… By the way, if your child has CF, look up the Starlight Foundation, they have branches all over. They do super fun, nice things for your whole family once a month! Then the CFF Singles pumpkin painting.
CFF Singles greatest night was next. CFF Singles is a group of single, professionals from the Jax. Area that commit to the CFF to raise at least $1500.00 each. Some raise a lot more. They get placed on one of 4 teams that has an Ambassador. Zoe has been an Ambassador for a few years now. Team Zoe! They are a great bunch of people. The greatest night celebrates all the money they raised. We are so fortunate to have so many wonderful people working towards a cure for CF!
Next was going to Scott’s parents in southwest Fl. It was beautiful weather…warm and sunny! They welcomed us with open arms…tons of great food, cocktails, card games (nana and I didn’t win…uughh! Maybe next time!). Then they had a few events planned for us. First a nice beach day, collecting shells and sharks teeth, then ice cream at a cute little shoppe. The next day was Thanksgiving meal….YUMMY! It was wonderful! Next was a ferry ride to a private island….the ferry driver was so nice, he let Zoe drive the ferry! She was all grins! Then a nice walk and pics on the beautiful beach, dinner in the island restaurant. It was all terrific and we felt spoiled!
After all that….we came home to decorate for Christmas! My favorite time of year!
Zoe did get sick after all the travels….but her docs had already called her in a huge bottle of Bactrim. She has been on it for a couple of weeks now. Her sinuses are still pretty yucky, so we will give her the full 3 week course and go from there.
Well, if you read all this…congratulations! This is what happens when I don’t update often enough. So sorry!
Take care of you and yours….
Jada
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
Wednesday, November 17, 2010
Started Bactrim
Well our girl is still sick. Her 'croupy/dry' cough has turned into a 'wet/junky' cough. Poor baby. She told me yesterday she wants to do her treatments so she would be able to breathe better. Another CF milestone. When they realize their treatments help. So, the 15 mls. of Bactrim twice a day has started.
Hopefully she will be on the road ro recovery quickly. She has her regularly scheduled ENT appt. tomorrow, so that works out nicely. She can take a look at her to see how she is doing.
Thank you for your thoughts and prayers....
Jada
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
Sunday, November 14, 2010
Zoe sick.....great vacation though!
Hello all. We went on a wonderful vacation to my parents....much needed...haven't been there in almost 10 years ! It was terrific! We had snow for a day....considering Zoe had never seen snow....it was a blessing! She loved it!!! Pictures to be posted soon! We went knowing that there was a 'cold' going around....but could not change plans. Well....Zoe has now come down with the 'cold' which is croup related. Uuugghh. She has a nasty cough, runny, stuffy, sneezy nose and sore throat. We wlll see if it goes away on it's own or needs Bactrim. Thank you in advance for your thoughts and prayers....
Take care of you and yours.......Jada
Take care of you and yours.......Jada
Friday, October 22, 2010
Update on Zoe and visit today from Graves
Mr. Graves will be visiting today! It's kind of the running joke to call him 'Mr. Graves' because the kids do. We will be making alfredo....his request...of course no complaints around here....the family loves it also! I'm sure there will be plenty talking, laughing and wine!
This will be the first time I've seen Graves since we were together in NY in December when Mel died. Hopefully we won't cry too much....
Zoe is still doing fantastic! She had clinic last week. She is at 67% BMI, blew a real 3 second pft for the first time ever! She blew a 97! The only comment was that she has difficulty expelling air. Which we already knew. She gets sob when she runs across the house. Her culture came back with OSSA again. This is 2 cultures in a row, but as long as she doesn't have any symptoms, we don't treat it.
Well, have to run...dogs have a very long overdue, much needed, grooming appt.
Hope ya'll are having a beautiful, relaxing fall!
Take care of you and yours,
Jada
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
Thursday, September 30, 2010
Doing good!
We are all doing very well! Zoe is in fantastic health right now! We can hardly believe it has been almost 2 years since she has been in the hospital! Yay! I've been told that these are the 'good' years with CF....well, I'm hoping and praying they last for a looonnnggg time! :)
She has her next clinic appt. in less than 2 weeks, so hopefully all will stay good.
We have one of our favorite CFF events next weekend. Moonlight Martini's! This year we are so excited to have so many family coming with us. Scott's parents will be in town, coming through to visit on their way back to their southern home, so they will be attending! This will be their first time being able to attend a nice CFF event, they seem excited! Also, my sister, Alana, our daughter, Tara and boyfriend, Cecil will be staying with us and attending. A houseful! It will be so much fun I'm sure.
Our son, Caleb got a job finally!! He starts Sunday night. We are all very happy for him. He is also purchasing a car tomorrow. So, life moves on in the right direction.
Austin, our 17 yr old, the only one in public school, is doing very well. This is his second year in high school. He was just invited to join the Beta Honor Society!! We are so proud of him!
All the other munchkins are healthy and happy!
Take care of you and yours.....
Jada
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
Monday, August 23, 2010
Update
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
Sunday, July 11, 2010
Jazz's visit
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
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
Tuesday, April 13, 2010
Clinic
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,
Wednesday, April 7, 2010
Happy Birthday Baby Girl!!
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!!
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!!
Thursday, March 25, 2010
Fundraising, infections and kiddos.....
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
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
Wednesday, March 10, 2010
Great Strides
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.........
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.........
Saturday, February 27, 2010
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
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
Wednesday, January 27, 2010
Mel's story part 4 final post.
The final post about my bestfriends last days is done.
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52583&catid=446
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52583&catid=446
Wednesday, January 20, 2010
Mel's story part 3
Part 3 of Mel's story.....
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52372&catid=446
Take care of you and yours......
Jada
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52372&catid=446
Take care of you and yours......
Jada
Monday, January 11, 2010
Mel's story part 2
Part two
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52129&catid=446
Take care of you and yours,
Jada
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=52129&catid=446
Take care of you and yours,
Jada
Tuesday, January 5, 2010
Mel's story
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
http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=51945&catid=446
Take care of you and yours,
Jada
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