When this whole process began, I was desperately researching different neurologists and developmental pediatricians with the hope of finding the best of the best to treat my baby boy. Time and time again, I kept getting referred to this prestigious institution in Baltimore. When we met with their neurologist, it was essentially a second opinion since we’d already been given a diagnosis from another neurologist four days prior. We came equipped with a disc of images from Caleb’s MRI that had been performed the previous day.
The neurologist took a look at the images, ruled out a tumor or anything more serious but insisted a neurological radiologist (huh?) needed to look at the disc and write their own report. She asked to keep the MRI disc, which I was ensured would be returned to me as soon as the review was finished. We needed this disc back in order to have a follow-up meeting with our original neurologist. All of this took place two weeks ago.
Well, the follow-up appointment was this afternoon with Neurologist #1. Needless to say it was cancelled because guess what never materialized in our mailbox for the past two (!) weeks despite numerous calls from yours truly? I was told one week ago that it had gotten sent out and we should get it “any day now.” Mind you it takes 1 hour to DRIVE to Baltimore from our house. What was the hold up? I called half a dozen times yesterday and was greeted by voicemail. Every. Freaken. Time. When I finally spoke to someone this morning she responded cheerfully, “Oh yes, Mrs. Danielson, I have your disc right here. I was asked to overnight it to you. You’ll be getting it tomorrow.”
I felt my blood boiling, I couldn’t formulate a sentence and I just wanted to hang up before I said something I would regret so I said thanks and proceeded to whack the phone on the receiver about four times. Oh and this all transpired as I’m sitting at work, surrounded by co-workers. I tell ya, I’m pretty much the model employee! I felt a familiar lump rising in my throat so I grabbed my phone and keys and retreated to my work van.
I dialed Shane’s number and instantly broke down. They never sent the disc last week like they said they did. If they couldn’t handle that simple task why should we trust them with our son’s care? I screamed out of frustration and realized this wasn’t about the stupid disc. This is about me wanting Caleb to be their first priority like he is to us. I want everything to be handled professionally and expediently. I realize my son isn’t this doctor’s only patient, but I want to feel like he is. I’m pretty confident the doctor has nothing to do with this, and it was just a clerical error that our disc was temporarily misplaced, but this was our first impression of them.
Our appointment is rescheduled for later this week, and waiting a couple more days will undoubtedly feel like an eternity. I have an insatiable need for answers. When was Caleb’s brain damaged? What caused the damage? What does that mean in the short, medium and long term? I recently learned that in more than 80% of CP cases, the cause is still unknown (source: http://www.reachingforthestars.org/?p=553).
There was some recent good news though. Caleb had a follow-up with his pediatric opthamologist. She was so impressed with his alertness and the way he looked around the room and taking in his surroundings… it’s as though he’s seeing things clearly for the first time. This leads us to believe his eyeglass prescription is spot on. He can grab at items more accurately and was able to focus on an image on the wall across the room. She expressed that Caleb was doing better than she expected and that was just so good to hear. It’s unknown whether or not his vision will correct the itself over time. We’re just happy that Caleb generally enjoys wearing his glasses and they are helping him see. Doesn’t hurt that they make him look like a cuter, baby version of Drew Carey 🙂