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).
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