a long list.

my beautiful boy has had so many appointments lately.

it seems like last year he hardly had any.  sure, we went in for his regular check-ups every few months with all of his doctors, but not really any more than that.

i was looking over our calendar this morning, and just since August, he's had more appointments than all of last year's combined.

here's a list of what he's had done and who he's seen just since mid August:

MRI done.

appointment with ENT,

 Genetics,

Neuro-muscular specialist,

Cardiology,

Neurology,

Neuro-muscular specialist again,

ENT again,

 ER visit,

hospitalized,

Pulmonology

 ...........

and tomorrow we have an appointment with the Movement Disorder Clinic.

next week is an overnight EEG/sleep study on Wed.

G.I. appointment the next day.

and the next week is his surgery.

followed by an Orthopedics appointment.

followed by a sedated EMG test.

do you know what answers/solutions/help we've gotten out of all of those appointments?

 

no, i was asking an actual question.......DO you know of any answers or solutions??

because we can't seem to find any.

not yet anyway.

the medication that was prescribed, the one that was supposed to help with his movements, the one we were so hopeful about.......

did not turn out to be all we had hoped for.  and it has wreaked havoc on his digestive system.  (still trying to get a hold of the doctor so i can take him off of it, that's a frustrating issue all on it's own..)

however, we are still fighting.

we still have hope.

he's still perfectly beautiful.

and we were prescribed a nasal spray yesterday at the pulmonologist's that might open his nasal passages a tiny bit while (if) he sleeps at night.

so things are going quite swimmingly.

right?

he's the strongest little boy i know.

<3