We started off the morning at the pediatrician's office for Collin's six month checkup. Some people dread the pediatrician because of the shots. We dread the pediatrician because it usually goes a little something like this:
Nurse weighs Collin. "Oh, he's a little guy, isn't he?"
She opens the milestone notebook to the 6 month page for me to read while I'm waiting for the doctor.
I close it as she leaves the room.
The doctor rushes in and doesn't remember anything about Collin's condition, which is, shall we say, complex.
He starts to examine him. "Wow, his ear canals are really small. You should maybe see an ENT.
"Wow, I can't feel his little testicles. You should maybe see an endocrinologist.
"Wow, Infantile Spasms. That's a tough diagnosis.
"Have a great day."
The only good thing about our visit today: HELLO GROWTH CHART!!! Collin saw the positive side of the growth chart for the first time in his life today, hitting the 5th percentile in weight and the 3rd percentile in length. Sweet sweetness.
Around noon, we headed to the neurologist for Collin's fourth EEG. He decided to start things off with a bang by launching into a cluster of 30-plus spasms as soon as all of the electrodes were bandaged up on his head. When we saw the doctor THREE HOURS LATER we determined that Topamax is probably not Collin's medicine of choice - considering the daily spasms and the constant sedation and the 20-30 massive retches a day and the fact that he no longer makes any noises or even cries since he's been on it - but since he just hit the max dose today, we're going to give it to the end of the week and then start to wean it if we haven't seen dramatic improvements. At that point, we will try prednisone, which has shown promising results in some studies. We will also be trekking to Cleveland Clinic to get a second opinion from the head of their pediatric epilepsy department, with our neurologist's blessing. He's even scheduling it for us. Then we have the last round of blood tests and the spinal tap next week. We'll be back at the office in another three weeks to do it all again.
I say "we" have the last round of blood tests, but really it's Collin. Collin is the one who gets poked and prodded and doped. As I pumped syringe after syringe of medicine into his feeding tube tonight while putting him to bed, I just remembered that as exhausted as I am after a day like this, Collin is the one who is really living it.