May 31, 2014

CF Walk

What a time! We raised $335!

Azer and another boy from his baseball team were the the first people over the finish line.

Thank you to all who donated and thank you for those who came today!

May 15, 2014

CF Clinic

Well, he's been feeling pretty good the past 3 months. No real increases of cough. His oxygen was excellent, as always. He gained a few pounds. I've been grateful that he has had a fairly good appetite most days. He has been having floaty, fatty stools lately, which had the doctor and dietitian a bit puzzled. He is on a pretty high dosage of enzymes right now. The only way they could increase the dosage was if he gained more weight. They try to keep the enzyme dosage under a certain limit because if he was on a too high dose for too long, it could cause erosion of the intestinal wall. 

His PFT's were down to 87% Fev1 today. They are running a culture to see if he is growing anything that needs to be treated. The main reason they think his lung function is down is due to allergies. If allergies can affect a normal person's eyes, nose, ears and throat, they most certainly can affect the lungs of a person with CF!   

He got a new Acapella today! It seems to work quite effectively as he was coughing up all kinds of lovely things, and guess who got to hold the specimen cup ;-). The Acapella works by creating positive air pressure in the lungs to force open the alveoli which helps push the mucus into the bigger airways where it can be coughed out. In fact, he was still coughing up mucus this evening!  

The doctor noted how clean his G-tube stoma is. Azer said he keeps it clean, and I muttered how he cleans his stoma better than his room!
It is 15 days until the Great Strides CF walk! We have raised $80 so far! If you are interested in donating or walking with us, just click here! 

April 25, 2014

Great Strides 2014!!

Hello all!

We are Team "Joggers for Azer" again this year. Please register to walk with us!

This is the walk information for this year:

Date: 05/31/2014
Check-in: 8:00am
Walk: 9:00am
Distance: 5k
Chapter: Northeast Texas - Dallas
Event Location: Vitruvian Park,
Addison, TX

The walk is held at a different place this year, so a change of scenery sounds nice! 

Here is the link for our page.

Look forward to seeing you there! 

March 6, 2014

Azer putting in a new Mic-key button

Azer has been getting better about recognizing when the balloon may be getting a little low on water. I noticed he has way less anxiety about pulling out the button if he does it himself, since only he knows how it really feels. I am really proud of him for being able to do so much on his own! 

Here is a picture of the Mic-key button with the balloon filled with water. That is what holds the button inside the stomach wall. We usually replace the button about every 6 months.

February 14, 2014

Clinic day!

Yesterday, Azer had his first fasting and glucose test. I learned that they start doing these annually after they turn 10 years old. He wasn't the happiest about having to fast all night and not getting his morning feed. However, his blood sugar was completely normal fasting. They then had him drink a very sugary liquid, and then tested his blood two hours later, and again it was normal.

He was down about two pounds yesterday. The dietitian was kind of concerned, but I really think it had something to do with not getting his night and morning feed. He tends to hold a lot of liquid in his stomach. On the plus side, as of late, he actually has had an appetite. That is going from having nearly no appetite, ever. The only exception to that is when he is on Prednisone, which nobody wants.

He scored 94% Fev1 on his PFT's yesterday. He had great air intake, despite having a mildly wet cough. The doctor said he sounded very clear. As usual, the doctor said he has the cleanest G-tube stoma he has ever seen. That's always funny because he keeps his button so clean, but it is a constant struggle to keep his room clean. Boys are strange I guess!

After clinic, we had our obligatory lunch together. Azer chose Subway. The kid ate nearly an entire foot long meatball sub. Very impressive!

After which, he was very energetic. So, yay for a good clinic day!