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
Zoe for Life.... Our journey with Cystic Fibrosis....
Wednesday, October 28, 2009
Thursday, October 22, 2009
Yesterdays clinic visit
Things went pretty good overall.
Her BMI has dropped to 50, mainly because she grew 2 inches in height! I've had a lot of people tell me lately that she has gotten soooo tall, I guess they were right!
Her nose is yucky, again. So, in thinking of ways to help keep her nasal passages cleaner (she has an extreme fear of sprays/and or water going in her nose/so we don't do rinses)....her doc came up with the idea to try hypertonic 7%, twice a day, with a mask. She already does all her nebs with a mask, so that was no change for her. She tolerated it well in clinic and did this morning also. She coughs some during the treatment and has since coughed a few wet coughs this afternoon.
She still hasn't got the hang of doing pft's, so we don't have any numbers for that. They did her normal throat swab, results will be next week.
Discussed the H1N1 vaccine, they want her to have it as soon as we can get it. We were not sure if we were going to give her to her, but after talking with her doctor, it sounds pretty rough. They have many kids pretty sick with it. They stressed to me how hard it hits the lungs. So, I guess as soon as we can find it, she will get it.
Due to the fact that Zoe won't use an inhaler for her albuterol (she nebs it), now with the added hyper, she sits for 90 minutes in order to do albuterol, hypertonic, pulmozyme, then 30 minutes of vest. A long time for a little 5 year old girl to sit, but she is a trooper, takes it so well.
Speaking of Ms. Zoe, she is begging me to play with her.....sooooo....off I go!
Jada
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
Tuesday, October 20, 2009
Just Life.....
I don't know....just life....lately. We have been back to school...back to normal stuff...just life. I guess this is a good thing. There hasn't been any MAJOR drama. Just normal dealing with teens....bills...omg the medical bills piling in...I wonder sometimes if we will EVER catch up with the medical bills from Zoe....probably NOT.
Zoe has been doing soooo good. She has started lately with a little clearing of throat/cough when exhaling/talking...so...we have clinic tomorrow, I am expecting an excellent visit...meaning....I am really waiting for the other shoe to DROP. Why does cf do this to us? Make us skeptics???
Scott's wonderful parents visited! We had a terrific time with them! We even had a lovely dinner out....that was wonderful, getting to enjoy a few hours of time talking with them without the little ones wanting attention. They are great parents! We love them dearly!
On another note....we are in the business of fall fund raising with CFF. We volunteer for several events, attend several just for the fun of it, etc....fall is a busy time!! I will try to post the pics of the first poker run we did, then had a dinner for the singles team zoe, next is a golf tournament, then my favorite, Moonlight Martini's, then my next fav...Singles Greatest Night! Lots of fun! Singles....let me explain who they are....they are a bunch of single people in Jacksonville, Fl., that normally have no connection to anyone with CF. They are just awesome single adults who want to make a difference. They join one of the teams (like team Zoe, team Leila(she is in my pics above, team cammie etc...there are only around 6 teams). Each single person is committed at the beginning of the season to raising $1500.00!!! YES!!! That is each individuals commitment!! These are AWESOME single persons! Then on Singles Greatest Night (in November) they have a speech, auction, etc... to celebrate the money they raised! It is terrific-as all of them are!!! We are so grateful for each and everyone of them......
Take care of you and yours...................
Jada Pictures above in slideshow of singles, Madison's b-day, Caleb's weekend home(shooting guns).
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).
Wednesday, September 30, 2009
Beach Vacation!
A very generous man offered his beach house for our family to use a couple of weekends ago! We haven’t been on a family vacation in years, it was much needed and appreciated greatly!
The house was perfect , the view was perfect, the company was perfect, I never wanted to leave. I have always felt a calling for the beach, maybe I was meant to be a beach bum. Except for the bum part. I spent countless hours sitting on the deck, enjoying the sun and ocean breeze.
We took all of our food for meals, we tried to make it extra special for the kids, so we had steak one night, mahi another night, Belgian waffles (with fruit, whipped cream, butter, syrup, sprinkles), icecream cones, eggs benedict. It was good. We literally stayed at the beach house the entire time. Scott did have to go into work a little on Sunday, so he brought pizza for lunch that day, other than that, we cooked.
It was so relaxing. The kids got up at sunrise the last morning and went out on the beach collecting shells. They spent a lot of time collecting shells, they ended up with well over 200.
The house had every thing I would have in my house. Stereo system that played in every room with controls in every room, even played out on the deck. Built in cutting board on the island, Kitchen Aide icemaker (made those perfect little ice cubes for drinks), wine cooler. Our shower had 4 shower heads and was the same size as my walk in closet! Oh yeah, the music played in there as well! A washer and dryer on both floors. The most amazing thing the kids loved, an elevator!! You drove your cars into the 3 car garage on the bottom level, then you could load you stuff into the elevator, go up to the 2nd or 3rd floors. It was a blast!
I haven’t been that relaxed in forever. It was great for our entire family. So, if the generous man that blessed us with this time at the beach, reads this, THANK YOU from the bottom of our hearts!!!!!!
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!!!!!!
Thursday, September 17, 2009
98,000 deaths a year....
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
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
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