Happy Halloween

I hope everyone is having a great day:)

I just wanted to update everyone on our family.  Poor Wittle Gage has been sick since last Wed am.  It started out as fever, congestion, and vomiting.  Now it is just a terrible cough.  I finally took him to the pediatrician yesterday.  He said Gage's chest was clear and his symptoms sounded viral, like a cold.  This, he said, could continue for another 3-5 days.  Poor guy, he wakes up in the morning, coughs and coughs, and says, "I feel bad again today, Mommy"!  I have to say, he is extra sweet when he doesn't feel good...isn't that terrible.  He is extra snugly:)

Lexi's cough is still not any better and she had several bouts of bloody stool last week.  So, I called UNC today...they decided that they need to check her stool for C-difficile, which is a type of infection.  If that is negative they want to go ahead and start her on oral antibiotics for her cough.  HoHummm.  Prayers, Please!!!

I also need some feedback from you.  If you had a child or had a family member with CF, how would you or how would you want someone to inform you about CF and all the many details.  Sit down and chat, or make you a little booklet on what is important, or give you a list of books or websites you can search yourself.  As you can see CF is a disease that effects almost all of the organs of the body and can be affected by many environmental things.  What do you think...give me you opinions, PLEASE.  I know most of our friends/relatives have been told a lot about CF, but I am sure after 8 years there has been a lot forgotten...



A little about our routine...

This video is a little about our daily routine and why it is important and how some of Lexi's meds work.


http://www.pulmozyme.com/understanding/treatmentregimens.jsp?c=MTPLCF7408&cid=pul_we_F012010_P012013&pid=9368998#

Finally an Update Blog...:)

Hi everyone...I know it has been a while, but I wanted to update you on Lexi's last several appointments.  Things have not been the best in my life lately, but I am so thankful for what God does for us every day. 

Lexi saw an ENT specialist in September.  Things went much better than we expected.  He went up her nose and into her sinuses with a scope and they looked pretty good.  He did see some thick mucus but not a lot of inflammation and NO polyps.  This is wonderful news to us.  We were thinking that she might need sinus surgery in the near future...PRAISE THE LORD!  He did increase her nasal spray and wants us to start doing sinus rinses several times a day...this we are still working on.  The sinus rinses irritate her nose so badly.  We are working on slowly increasing the frequency and will get there, I am sure.

Lexi had her regular check up with her CF Pulmonologist on Oct. 12th.  This appt did not so well:(  Her pulmonary function test was at her baseline normal...which is over 100%:)!!!  Dr. Davis, however said that her lungs had ALOT of congestion.  We decided to do an albuterol treatment and a second PFT to see if this made any difference.  The albuterol opened her airways a lot, and did bring up her PFT score.  This gave Dr. Davis the impression that Lexi has a lot more of an asthma component to her CF than we thought.  NO GOOD, says me!!!!  This means that all of those things, like fragrances, dust, animals, carpet, smoke....will just affect Lexi in a bad way....

Dr. Davis increased Lexi's Hypertonic Saline neb to 7% and I am to call back in the next week to let them know if it makes a difference in her cough....

Please keep us in you prayers that this works....not sure what the next step will be, but I do not want to be in the hospital for Thanksgiving or Christmas....