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!