Neurology - Take Two
In an effort to assist in Caleb’s coordination of care, I wanted to see a Neurologist at Children’s, where Caleb’s Cardiologist is whom we are very happy with.
I pulled into the Children’s ramp that we are all to familiar with about 4 minutes to spare so took my sweet time getting in. Caleb wanted to read all the numbers on the elevator, spell all the colors on the palette of the Snoopy Painting sculpture, walk through the skyway, look at the telescope, and, and, and until I realized it’s time to go. I scoop him up and head to the first floor where I thought Neurology was supposed to be, but instead it's Hematology/Oncology. Oh crap, that appointment is next week. I don’t see Neurology on the Directory and when asked, I’m told that is in St. Paul. Again, oh crap. If I miss this appointment, I’m thrown back into the mix where an appointment is weeks/months out.
When I called to tell them I would be a little late, they basically told me that this Neurologist was booked all day and it’s probably best to be rescheduled. Nope, sorry sir. Not rescheduling me. Tears flow and I go a little faster begging this nurse to not make me reschedule. I wasn’t sure if they would take me, but I was showing up and letting them tell me and Caleb in person that we can’t be seen. Caleb’s blonde hair and blue eyes won them over. Easy as that.
The Neurologist spent an hour with us. It was more than I could ask for, given my 30+ minute late arrival and it was an eye opening appointment.
His first words were “I’m not satisfied with the quality of the MRI scan.” I now know more about Tesla’s and the various quality of machines (as compared to a Corolla, Lexus and Ferrari). Caleb had the Lexus version which can appear blurry and therefore not as informative as the Ferrari version. Who knew? Why wouldn’t all facilities have the most updated versions?
He then talked to me while playing with Caleb, even giving him his “orange triangle” (reflex hammer) as a souvenir since Caleb seemed to take a keen interest in it.
The recommended medical plan wasn’t much different than the first Neurologist we saw, but the approach was different. It was less about how Caleb might be perceived by others and more about throwing him into the fire to challenge his brain and see how it reacts. He gave me a good analogy:
If there are 20 ways to get from your house to the grocery store, but a few of those paths have a pot hole (i.e. brain damage), it might take a while, but you may eventually find a way that can avoid the pot hole. The brain can act the same, but you have it challenge it and force it to find those new ways.
He suggested activities and/or classes that will challenge Caleb (gymnastics, swimming, sledding (going up/down a hill) and see how his body reacts. I can handle that.
To re-do the MRI or not? That is up to Dan and I. This particular Neurologist said he doesn’t care if Caleb’s brain looks like scrambled eggs, he’d like to focus on his function. Given that, we are leaning towards no as the outcome of another MRI would not mean different treatment.
He also left me with this statement:
“How a child turns out largely depends on the following three things:
Socioeconomic status
Complexity of vocabulary (note never been an issue for Caleb)
Maternal intellect
I see all three things in Caleb’s favor and feel positive about his future.”
That felt good. I’m not sure how he was able to determine 1 and 3 in the hour that we had, but I’m taking it and running with it.
Quite a few other things happened this week and we had other doctor appointments as well, but this was the highlight. For the first time, I felt like we are finally getting somewhere.
Below are a few pics. The first of him with his older brother Ben who is letting him try to blow out the Advent candle. The second with his new purple pulse oximeter that he will keep in his backpack in the event his heart rate needs to be checked.
Thanks for reading. We are keeping the faith and it is paying off.
