Friday, July 4, 2014

Ignorance is Bliss

I wasn't sure if I was going to write about Connor's last neurology appointment.  However, after thinking about it, I realized what we found out really doesn't mean anything.

On June 13, Connor had his neurology appointment with Dr. Kinsman at MUSC.  We really like him as he kind of walked us down a ledge when Connor was in the NICU.  We somehow got on the topic of life expectancy and quality of life.  Dr. Kinsman was mentioning it in regards to if Connor were to get really sick (like with pnemonia) because with all of his issues.  Matt kind of pressed him on what his thoughts were for life expectancy.  This is something Matt and I have talked about a few times.  I can't speak for Matt, but I know it's something I think of daily.  However, we have only talked about it with each other a few times.

Anyway, he said looking at Connor, he would likely fall on as a 5 on the scale of Cerebral Palsey (even though Connor does not have CP).  So of course when we got home, we looked up what he was talking about.  You can check it out here if you're interested.  Connor would actually be between a 4 and 5 (in my optimistic opinion) because he can roll both ways.  However, he has no head control and cannot sit unassisted. 

So where does that leave Connor's life expectancy?  Dr. Kinsman suggested around 10 years old.  He said there's a good chance he'll make it to 3, a 50% chance he'll make it to 10, and a small chance he'll make it to 19-20.  Just like when were told in the NICU that we might have to make that decision about life (when we weren't sure if Connor's apnea was seizure related or not), I managed to keep it together during the appointment, but I spent the rest of the appointment in a total fog.

I'm of the mindset that ignorance is bliss.  I really don't want to know.  Why? Because in my opinion, no one can ever predict these things.  Even if we could, would it change anything?  NO.  It makes us thankful for each day we get to spend with him. 

So leaving that appointment I had a good cry in the car by myself, because regardless of how everything turns out, no parent wants to hear that your child probably won't make it past 10 years old. 

Overall, Connor is continuing to do good.  He has an ear infection, but you'd never know.  The only sign was he had a ridiculous amount of ear drainage (which actually meant his ear drum had ruptured!).  His sleep lately has not been good.  Last week he was up playing anywhere from 2-3.5 hours straight (after eating).  Wednesday night he was up about 4-5 times and he's been up right now (at almost 11 a.m. since about 2 a.m.).  That equals a tired mom and dad!

This picture I took at bedtime.  I jokingly told Matt that Connor was thinking "Do I give Mom a hard time now, or wait a few hours and give her a hard time in the middle of the night?!"  HA!

Connor says Happy Fourth!

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