CF Clinic Day!

Yesterday was another great CF clinic day. Azer's FEV1 on his Pulmonary Function Test was 110%! Again, he has surpassed his best results ever. His last clinic day, he got 106%. I am floored.

He also gained 2 lbs and grew about a centimeter. The doctor was thrilled. His BMI is 60%. So, the fact that he is gaining weight while running is fantastic. His appetite has been pretty good, considering the way he has eaten in the past.

I was looking at our dailymile.com page, as I haven't gotten into the profile area for quite some time. Under "goals", I had put "To be able to run for 30 minutes straight with my son. Jogging to increase my son's lung functions!". Well, We have surpassed both goals, and I'm proud of myself and of Azer. I never thought it was possible to increase is lung functions by running, but, it works. It really does. I'm not saying that this solves the daily battle of Cystic Fibrosis. I'm trying to remain realistic about it, but I am stoked that we have increased his FEV1 from the mid 70's to over 100%.

CF Clinic... and Awesome PFT's!

So ... Azer gained a pound. He is kind of leveling out on the growth chart. He had been closer to the 50th percentile during the summer. He is around the mid 30's in weight. The doctor isn't really concerned at this point, since he is height and weight proportionate. She noticed that his slower weight gain might have something to do with our running, but she said the last thing she wants is for us to stop running.

And here is why: his best result from today's PFT was 106% FEV1. Heck, yeah! He has never scored 100% on a PFT. So the doctor said, for a normal child with no CF, he scored above average. I almost cannot believe that at the beginning of this year, he was hovering in the mid 70's and only got higher than that after a week of antibiotics. And here we are, nothing changed... cold and flu season, and he scored 106%.

So the plan of action? Keep running.

Next month, we will have officially been running for a year. It was around March where we finally built ourselves up to the point where he and I could run for 30 minutes straight without taking walking breaks.

Since it's been a while since I've talked about it, we started running using this plan.
http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html
It was Ronnie Sharpe that originally had encouraged me to start getting Azer to kick up the exercise a notch. I definitely feel like we are more in control of CF right now. So, thank God for His wisdom and guiding me in this CF journey!

Emotions... argh...

Just a quick little note mostly for myself to get it out.

I've done it at least 10 times at this point. His G-tube button looked loose, so I checked to see if the balloon had enough water in it. It was low, so I had to pull the button out to check the balloon to see if it was leaking. When I pushed it back in, it didn't go back in so smoothly, and it was a bit painful for him. I did not show him that it hurts me just as much. It usually doesn't affect me, but it did this time. Maybe because it was me that caused the pain, in a way.

That boy can get on my last nerve, but it rips my heart to pieces when he suffers. I know life is not meant to be painless, but when the pain is caused by CF, even indirectly, I want fix it for him.

8 Years...

Eight years ago, my life changed forever. When I held that sweet, little baby boy in my arms, I felt instantly bonded with him.

After I found out he had CF,  there were times I felt completely devastated. As if I didn't know how to go on. Other times, I felt incredible strength, as though I could fight and kill CF with my bare hands, and make all the bad parts of his life go away. Without God and my parents, I could not have made it this far.

Through the hospitalizations, helping him through physical pain, and spending weeks alone with him, we both strengthened each other. The older he has gotten, I've realized that I've helped him fight CF for 8 years, but in return he has helped me fight it as well. We are partners in fighting CF, and this past year, we have been jogging partners as well. At times, it feels like we are running away from CF, putting more miles between him and the hospital.

These past  8 years have been both difficult and happy at the same time. Trying to maintain an appearance of  "normal" life to the outside world, and trying to maintain this routine of treatments, feedings, antibiotics, pills, pills, pills ... the "fighting like mad" to avoid the hospital. Still, I wouldn't have it any other way. It has been an absolute blessing to watch this baby become an independent, social, outgoing, caring little man.

Happy Birthday, my little man.

CF Clinic

Yay, great clinic day!

Well, I was so sure his PFT  results today was going to be terrible, as his wet cough is still there. He blew 95% FEV1 which is the best result since 2009. The doctor was pretty amazed at that result. He lost a few ounces, but grew a little bit. They aren't extremely concerned with his weight, but the dietitian wants me to try to add a half a can extra through his G-tube.

The doctor wants me to continue with the antibiotics and the increased treatments. He may be on the antibiotics for a full 14 days depending on how his cough sounds on the 10th day. The doctor wants to really knock whatever it is out of his system, since it originated in his sinuses.

The dietitian made me feel more relaxed as far as Azer not eating. She was basically saying there is no reason to be forcing food in his face if he is just not hungry. So, I guess at this point we are focusing less on eating and are being a bit more dependent on the G-tube. I'm not sure how I feel about that, since they have mentioned they didn't want him to be completely dependent on the G-tube, but I am so grateful that we have it as a tool to fight CF!

Well, I am just thrilled about his lung function! I guess we are going to keep on running!!