July 20, 2017

Physical Therapy

So, back in April at CF clinic, Azer was evaluated for the first time by the team's new Physical Therapist. She noted that his posture was very poor. His back and shoulders were slouched similar to an elderly person, and his range of motion was limited. Azer also has had some issues because of overuse from playing baseball over the years. She said that poor posture in CF can begin with excessive coughing, and also that having a G-tube can attribute to poor core strength. She did a bunch of measurements, and a few exercises with him. She then sent us home with exercises to do everyday that help strengthen his core and back to help his Scoliosis, stretch out tight muscles, and strengthen his Osgood-Schlatter's disease knee.

Within a few weeks, Azer began to have back pain. Through communication with the Physical Therapist, she determined he would need to be worked on more frequently than just at clinic. We began seeing her once a week at first, and now it is every two weeks. She was able to clear up  his back pain within a few weeks and also make progress in his strength.

This physical therapy room is awesome. It has lots of space and the cushioned table is height adjustable. 

 It is challenging to do these exercises and stretches every single day. It takes up time, and sometimes  he is physically tired the next day depending on what we did the day before. However, I wish I had a picture of how his back and shoulders looked before we started PT. The change has been dramatic. She re-measured him a few weeks ago, and basically his scapulars are an inch closer together than they were before. An inch! Within a few weeks of starting exercises, even Azer noticed that he felt a little taller. He is visibly standing up straighter. His muscle definition is getting to be noticeable as well. His Osgood-Schlatter's (we joke about it and call it Schlotzky's) knee is also improving. He has been running 3x a week during the summer, and his knee hasn't been hurting. Azer ran 3.4 miles in 30 minutes yesterday for the first time. He is getting so strong, and it is incredible to watch this tiny, scrawny child grow into a strong young man.

The Physical Therapist has to fight with insurance companies and Medicaid constantly to get them to cover her treatments. They don't believe that people with CF should need physical therapy. She said the interesting thing she has noticed about treating kids with CF is that most of the time, they need her help for sports injuries. She tells the insurance companies that if CF kids get injured because their so active, and don't get help and can't exercise, they are going to have a much bigger problem on their hands than just PT!

June 27, 2017


Ever since Azer was put on antibiotics a few weeks ago, his sense of smell started returning. We were recently on vacation and stopped doing the nasal rinses then. We noticed he was breathing better out of his nose. On the way back home, it was almost like telling a blind person what they see. He kept asking what he was smelling. It's very encouraging.
Blue Hair Dye for the Summer!

So, we told the ENT doctor about what we haven't been doing. He said to keep not doing what we've been not doing. Lol.

Again, they squirted lidocain up his nose and waited a few minutes for it to work before looking up his nose. He drank some Gatorade after to get the taste out of his mouth.

The doctor still saw new polyps, but the inflammation was decreased, and he said it looked pretty good for a person with Cystic Fibrosis. 

After ENT, we had to go to labs again. On his blood work from CF Clinic, his IgE was elevated, and they wanted to make sure he hasn't developed ABPA again. However, his sputum culture showed Steno and Staph, so the antibiotics that he's been on have definitely helped this.

June 13, 2017

CF Clinic - Annual Visit

Today was Azer's "Big Clinic Day", which includes a mental health screening, blood draws, two sputum cultures, a fasting glucose test, and a glucose test 2 hours after drinking liquid glucose.

Azer has been able to maintain his weight since the last clinic. The GI doctor was very happy with his weight, and he has grown some, but his height is still plateauing. The GI doctor said that at our next clinic, they will bring in the Endocrinologist and we will discuss growth hormones again. Azer told the GI doctor that he is still willing to start growth hormone shots.

About a week ago, Azer started oral antibiotics after some sinus congestion seemed to move into his chest. He cleared up very quickly after starting the medication, and today his PFT's were 95%, and the doctor said he sounded clear. The doctor said that if the chest congestion returns after he's off of the antibiotics, they may consider putting him on inhaled antibiotics until winter time. Azer told the doctor about how physically active he is, and both the doctor and respiratory therapist were impressed with him, and agree that exercise is so often downplayed when it's one of the most effective airway clearance treatments.

They noted that his blood sugars have been a little high in the past, and that if this one turns out to be borderline again, we may do a month of additional blood sugar testing to ensure it isn't getting dangerously high.

Trying to raise a successful teenager is challenging. Trying to raise one with a chronic health condition definitely is more difficult! Everyone was impressed that Azer has been getting more independent with his care, medications and exercise.

Today, we were introduced to a new product called Relizorb for G-tube feeds. It is basically a cartridge of enzyme beads (Lipase only) that screws onto the bag of formula and gives continuous dosages of enzymes through the feed. Since this product only helps with the absorption of fat, they recommend still taking regular enzymes at the beginning of his night feed. They have already had some great results from other people, so we are looking forward to trying it out! 

May 13, 2017

Great Strides "Joggers for Azer" 2017

It's that time of year again! If you would like to walk with us, or donate, here's the link.

Event Location: Vitruvian Park
Date: 5/13/2017
Check-in: 7:30 AM
Event: 9:00 AM
Distance: 5K

Here is the map of the location: https://www.google.com/maps?q=3875+Ponte+Ave+Addison+TX

April 7, 2017

CF Clinic

Last week, Azer seemed to have come down with a virus that only seemed to last for a few days. The virus brought nasal drainage, so that on top of any allergies he has right now has caused all that mucus to end up in his chest. On Friday, he really seemed to be having trouble breathing through it all. We increased breathing treatments, and did manual CPT about 5 times a day.

His PFT's were 86% FEV1, which is lower than his usual baseline. We were expecting it to be lower the way he sounded. When the doctor listened to him, he had some wheezing that moved around, and some noisy spots on his lungs. We all agreed that a course of oral antibiotics would help a lot right now. Luckily he only cultured sensitive staph again.

We had a new member of our CF team come visit us. Our clinic now has a Physical Therapist. She said she loves working with the CF team, and thought it was kind of interesting that most of what she sees in the CF clinic is sports injuries. Although that's not necessarily a good thing, it means that the majority of our CF kiddos are very active and athletic.

Even though Azer is already very active, she did measurements on him in various places. She noted that his posture is incorrect, and is likely due to all the years of coughing and also having a G-tube. She came back a few times during our clinic visit. She had him do some movements after his PFT's, and then later on, she took him out into the hallway to try out some stretches. There was a lot more to it than I ever thought there could be. She hopes that in three months, his form will get better. After his form has improved, she hopes to have him start weight bearing exercises. She expects that this will help his pitching form, his Osgood-Schlatter's knee, and his scoliosis. There is also evidence that doing the proper PT could reverse low bone density.

Azer lost a few pounds, which put him down closer to 50th percentile for weight, which is a bit more normal. He also grew nearly an inch since his last clinic visit. The doctor is hopeful that his body will catch up in height now that his nutrition is more than sufficient though puberty.

After clinic we had chest X-rays just to see how everything looks. Overall, everyone thought he looked and sounded great, and is very happy with all the work we put in at home.