Keeping the Faith

This recent article makes me happy. :]  It's pretty much the only happy news in this post. lol

http://dailyparent.com/articles/the-nations-top-five-pediatric-hospitals/

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I saw my GI specialist on Monday.  As of now, I don't have to alter my medications for all the GI stuff, but I'll follow up with Dr. P again in 3 months or so.

Thursday I have a return appointment/x-rays with my spine dr. to check up on my cervical spine instability from the EDS..  Every time I get a new set of x-rays, there's been a slow increase in vertebral slippage, so we'll see how it is now.. :/

Trying not to stress or grow discouraged about it, but starting last week, I've been losing my grip in my right hand. :(  *sigh*  Seriously, something new always comes up every 2-3 months!  It's hard to explain, but this seems more than just weakness.  For example, I was holding my phone in my right hand the other day, and I suddenly dropped it on our hardwood floor because my grip didn't stay.  Another time last week, my mom trimmed my bangs, and I held newspaper underneath to catch the cut hair.  My right hand grip of the paper suddenly let go.  It's as if my brain is not sending signals to my hand...  My neurologist is usually booked out months in advance, but by God's grace, she has an opening two weeks from today.

I hate that my case is always so complicated. :[  I've never had something as simple as a broken bone....I don't have a common disease like arthritis or diabetes or heartburn.  Instead I have disorders people have never heard of---all my genetic mutations are associated with diseases like distal hereditary motor neuropathy, central core disease, charcot-marie-tooth disease, minicore myopathy, malignant hyperthermia, mitochondrial disease, and many others.  What makes things worse is that they're all similar in nature.  And THAT'S why I'm a hard case for my doctors.

And IF this new symptom is related to distal hereditary motor neuropathy (a motor disease of the spinal cord) or the like, pray that I won't go crazy from all these countless diagnoses.  Serious!

"It seems like there's so much to hope for

So many dreams I wish they all could come true

But when I think about Your ways, Lord

It gives me so much faith in all that You do

Faith to see beyond what I can see

Faith to know that You will do great things

I will trust You, Lord, I'll always believe

As I hold onto my faith,

Jesus, You are holding onto me"

~partial lyrics from one of my favorite songs

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!

"We should see God as the Source of all good and our Sustainer through everything bad.  God alone is the Fountain of Life."

~Randy Alcorn

First post of the new year!

The day after Christmas, I had my first speech language pathology appointment with the swallowing clinic at OHSU.  The therapist wanted me to get a FEES study (fiberoptic endoscopic evaluation of swallowing) done to take a look at my vocal cords, etc.  For the 5th time that month, I had to go through yet another tube insertion through my nose...!  Those hurt so bad. >.<  Hopefully that will be the last for a long time..

Here is a video of my vocal cords moving in real-time.  But only watch if you like that kind of medical stuff. ;)  I hope the video works...I know a few of the pictures in my last post didn't show up!  If you do watch, that arched structure is my epiglottis, and those white-ish things are my vocal cords. lol  Pretty fascinating! ;)

This past Monday, I had my first modified barium swallow study and another esophagram.  

Tuesday I began physical therapy again---I'm now seeing a new therapist at OHSU, one who specializes in neurological/neuromuscular diseases.  Next week, Lord willing, I get to try this new contraption, sort of like a robotic leg. ;)  He wants to see if this will help me walk more easily with my left-sided weakness.  Sometime in the future, he is also going to have me try these leg braces that will hopefully make walking easier as well.  I'm excited to try both!

Yesterday, I saw an allergy/immunology dr.  For the past several years, I've been getting big canker sores in my mouth almost every other week. :(  I had a very extensive allergy test to see if any foods are the cause of them.  Thankfully, I'm not allergic to wheat, dairy, citrus, etc.  I'm so glad.  I am very allergic to all kinds of trees, grasses, molds, pollens, etc.  During the test, I developed huge hives and swelling all over my arm!  It was horrible!  I'll spare you the gross pictures. ;)

Since food is ruled out as the cause of my canker sores, he's now not sure what's going on.  Maybe it's because I have Ehlers-Danlos Syndrome and my connective tissue is not strong.. ?

Next week, I have speech therapy for my voice/swallowing issues, physical therapy, and a follow-up appointment with my physical medicine doctor!

P.S. 5 of my doctors (my spine surgeon, physical medicine doctor, GI specialist, sleep medicine dr., and even my podiatrist. lol) made Portland Monthly's Top Doctors issue for 2014!  Almost all my other doctors made the top docs list in 2013.  I really am so blessed with such great medical care! =)