so much to think about.

just got back from Primary Children's where we had our appointment with Connor's neuro-muscular specialist.

oh, i leave these appointments so much more mixed up and confused every single time....

we went in initially to see how this new med is working (or not working) and what to do next about it.  apparently we are not at the fullest dose possible, we're only about 75% there.  so we're going to keep upping it really slowly, because of how sleepy he's getting on the dose we're at right now.

i honestly don't think it's helping, just making him 'out of it', but we'll see if upping it slowly does anything to help any further or not.....

then, there are so many other things to think about.

she wants to do another EEG to test his nerves because he has no reflexes in his legs.  he hasn't for a while now, so she's worried he may have neuropathy, where his nerves are degenerating along with his muscles.

and she wants him to be seen by pulmonology to do a PFT (pulmonary function test) to see if his lungs have deteriorated and are working at full capacity or not.....if they are not and have deteriorated that will affect whether or not we go ahead with the tongue reduction surgery.....so i have the appointment for the PFT on Nov. 5th, and depending on that test we'll either go ahead with the surgery, or cancel the surgery and have to make some more serious decisions about the tracheotomy. 

:(

and she also want my sweet boy to be seen by movement specialist at the University Hospital, but they only see adults so she has to try and set that up.

there are things to discuss with them that i don't really want to talk about yet, just a lot to think about.

so that's been our day.

my son is beautiful.

i love him.

<3