November 29, 2017

Physical Therapy

Azer is coming to an end of his active treatment phase with the Physical Therapist. She has taught him how to do manage different pains in his body with exercises and stretches.

Over the past few months, we have allowed Azer to be fully independent with his stretches and exercises. As can be expected, he is not 100% compliant with them. The PT took his measurements again yesterday, and found that his form has regressed. She stressed to him that if he continues down this path, he will develop what's called "Barrel Chest". This causes the rib cage to be partially expanded all the time, and he won't be able to exhale completely. This will be permanent, and she said when she treats older patients with CF, there is nothing she can do for this. This is a crucial time for him to get his form back, especially now that he will begin growth hormones soon.

Because we feel this is so important right now in his life, he will be doing his stretches and exercises in front of us every night.  The Physical Therapist added a few more exercises that he can do daily that will improve his core strength as well as improve his Scapular form.

The Physical Therapist also shared that she has been advocating for CF patients to the insurance companies, Medicaid, and also to parents. She has been trying very hard to teach people that PT is as important to CF patients as is regular doctor appointments. If kids with CF's form and posture is not corrected at a young age, it is possible for them to lose lung function and require a lung transplant sooner than later. Doing the right exercises in the right way can also build bone density and can possibly reverse bone density loss. 

November 14, 2017

MRI for Growth Hormones

One of the requirements we had to meet before starting growth hormones was to get a brain MRI to make sure there isn't a tumor on Azer's pituitary gland.

He wasn't a big fan of the over-sized gown. 
It was a day where is lungs sounded a bit junky. Luckily, he was able to lay still for the majority of the scan, and they allowed him to cough in between the frequency scans. I was able to sit near him where he could see me, to try to relieve the claustrophobic feeling. When it was over, he sat up and he said he felt dizzy. The technician said this was from the magnetic field from the MRI. The feeling passed quickly.

We had a meeting a few hours later, so there as no point in driving home. To help pass the time, Azer decided to stand near the glass windows where you can see people on the lower floors, and "dab". He was seriously delighted when a man dabbed back!

The results of the MRI came in, and the doctor reviewed it. It shows that his pituitary gland is smaller than normal. The doctor isn't concerned about this (we have questions), and has given the go-ahead for growth hormones, pending insurance approval!