long shot...

had an appointment with connor's neurologist/NP today.

basically to just discuss where we are and what our options are.

we are going to hold off on making any immediate decisions about breathing interventions as long as we can.

they are starting my sweet boy on a new medication, pretty much a trial medication for him.

it is usually only given to adults.

it helps in adults with movement disorders.

there isn't a whole lot of information on how it would work on a child.

but we are willing to give it a try.

if it works, it will help control and calm his constant writhing movements.

if it doesn't work, it will either make him move way more, or make him way too sedated.

(or one of the major side effects is suicidal thoughts and depression, hopefully i won't have to worry about that... :/ )

 

they had to get special permission for connor to be able to start the medication, since he's a child.

i signed some papers today and hopefully they will fly it in and we'll have it sometime this week.

and then it'll take a few weeks to start and get the dosage right, but hopefully we'll be able to see some sort of improvement relatively quick.

 

he had a little 'episode' tonight, just about an hour ago.

it wasn't too severe.

i hope he can just hang on until this medicine comes, and that it'll do something to help my sweet boy.

if not, decisions will need to be made, and i'll cross that bridge if we come to it.

 

for now, i will just love and treasure my beautiful little mystery boy.

he is everything to me.

<3