Appointment updates!
This past Monday, I had a long day of speech and physical therapy back to back. My speech language pathologist and her colleagues notice that I speak with my throat muscles instead of with my diaphragm. Because of my muscle weakness, I’m not able to use my diaphragm 100%, so I’m compensating by speaking with my throat muscles. Yes, it turns out that IS possible as weird as it sounds. lol
But, we’re supposed to only use our throat muscles for swallowing purposes… So because I’m using those muscles to speak AND swallow, I’m fatiguing them. And THAT is why I experience choking. Soo, Speech (together with physical therapy) is going to try and strengthen my diaphragm muscle…
That whole day of therapy, though, did me in.
Later that night, I could hardly move my diaphragm because it was so fatigued! I couldn’t breathe well at all. It was scary, and I almost wanted to go to the ER again. That’s why Congenital Myasthenic Syndrome (which the doctors are thinking I also have) is often fatal in babies because they stop breathing.
Thankfully, I had my CPAP (continuous positive airway pressure) machine, and that helped somewhat. But it’s going to be a hard challenge to find a balance and not overdo things in future therapy sessions.
On Tuesday, I had a follow-up with my physical medicine dr. Back in December, Orthopaedics at Cincinnati Children’s had me get my first scoliosis x-rays (specialized x-rays of the whole spine from top to bottom). It turns out I do have some scoliosis. My spine is curving to the right. Dr. C wasn’t expecting this (including me!). This curvature is probably why I’ve been dealing with chronic spine pain.. Dr. C isn’t sure if this started when I was a baby or if this is a new problem, so he wants to monitor this. I’m to get the same x-rays done this December to check up on it.
Dr. C is referring me to the Neuromuscular Program at OHSU, and he also put in an order for me to have a walker. I’m as surprised as you are! But the walker will just be for home to help me with my abnormal gait and so that I can move around a little more easily in our home. I hope I can pick my own color like I did for my wheelchair.
Next month, I have an appointment with Dr. C’s brace clinic. Not sure what to expect with that, but maybe I’ll be able to get rid of the crutches!
