SMARD

I just put Milo down to bed, tonight is the first night at home on oxygen support so I am hoping it will help him through out the night.
Especially since it took me a flippin hour just to get the damn thing in his nose with out waking him up.
Milo and I went to his nueromuscular appt yesterday with Dr. Sokanju at Primary Children's.
She examined him, asked many questions about family history, his history etc.. then came the fun part.
She did two separate tests on him, the first one was sending shocks through certain nerves to see reaction time with his nerves.
Before she did the shocks, she shocked me to show me what he would be feeling through out the process.
The first shock (the smaller one) was not bad, the second one (highest one) was pretty irritating but pretty much painless so that was good to know.
The second test she did was sticking needles into his muscles and nerves, moving the needle around and listening to noise disturbances and things that indicate nerve damage.
The appointment overall was pretty stressful because she is poking and shocking him and at the same time she was trying to explain things to me about what she was doing, why she was doing it and what I should be listening and looking for --Which was great, but I wasn't able to let very much info sink in at the time, not with Milo screaming and turning purple on us from crying so hard for so long.
She left the room for a minute after she finished the testing and came back with some possibly really, really bad news.
She came in the room and said she had called another researching neurologist who does most of the diagnosing in these familiar cases and they both agreed that it is a high possibility that he could have S.M.A.R.D
I had no idea what she was talking about, never heard the term in my life.
Before I could ask any questions she let me know that he DOES have phrenic nerve injury to his c5 nerve, of course a plexus injury from labor.
Someone finally listened to what I had been saying all along!!!!
She explained to me that what he has if we are lucky may only have to do with his nerve injury and he could possibly overcome it with physical therapy, mild oxygen support etc.. however her and the other doctor are leaning more on the side of SMARD. The only way of telling if he has it or not is through a very very expensive genetic test that we just can not afford, OR if he keeps regressing from here and his breathing and or other issues keep getting worse and he doesn't start improving.
I hope to god that he does not have this disease.
I would not wish this on my worst enemy.
Here is a link I found on a boy who has this disease.
It's a pretty good summary of what it is and how it would affect him.
So from here we do a sleep study to see just how bad Milo's breathing is at night and we wait and watch for him to get better or worse.
http://ventsuperman.blogspot.com/2009/08/smard-brief-tutorial.html