We had to wait a long, excruciating month for that dang MRI appointment. Luckily Christmas fell in the middle of that month so we had plenty of activities to distract us from our wait.
Unfortunately, those activities included children. Children close to the same age as our Coopy boy. Children who can crawl, walk, run, jump, hell even sitting themselves up is something Coop can't do. Now don't get me wrong, I love seeing these children. I love that these kids are happy and healthy and I would never, ever wish for them and their families to be going through what ours is currently. But as a mom, it was heartbreaking to watch my little boy just sit on the floor, in the same spot, playing with the same few toys because he can't move himself over to any others. I did my best not to focus on the negatives and instead focus on the fact that Coopy is quite possibly the happiest baby I've ever seen. He loves to throw balls and chatter and play and laugh. He just loves life. He's calm and content 95% of the time and really is such a great kid. But I'd be lying if I said I didn't think about how he should've been running and trying to keep up with the big kids. I should've been chasing him around the house, keeping him from falling down the stairs and making sure he wasn't getting into things he wasn't supposed to be. The holidays this year were so much different than what I had pictured.
After the beginning of the year, the next two weeks flew by. Before I knew it, it was the day of Coop's MRI. I was a ball of nerves and anxiety because he had to be sedated which meant he needed an IV. I was so worried I was going to be the one holding him down while they poked and prodded trying to get it in. I can not say enough about the nurses in the PICU because they got that IV in on the very first try and there were minimal tears (from mom and baby)! They let me carry him down to radiology and I held him until he was asleep. Cody and I sat in the waiting room for the next hour patiently waiting for the scan to be over. Surprisingly, I wasn't overly nervous at that point. I was calm and just wanted it to be over. I knew deep down in my momma gut that we were getting answers with that scan. Those images were going to tell us what was going on inside our little man's body. I almost felt a sense of peace sitting there listening to the roar of the machine taking pictures of my baby's brain and spine. We were going to get answers and we were going to figure out what needed to be done to help him.
Once the scan was over they brought Coop out of the room and put him on his hospital bed. He woke up almost immediately and although he was a bit groggy he kept looking at his daddy and saying "dada dada dada" - that's his favorite word, in case you didn't know. They wheeled him up to his room in the PICU and we only had to wait a half hour or so until they were unhooking him from everything and sending us on our way.
The next day I kept my phone in my hand almost the entire day. I didn't want to miss the call from his neurologist with the results. Unfortunately it never rang. It wasn't until the next day when I was at work that the call came in. I missed it. Later that day I finally had a chance to call them back. I was so nervous but again, I just knew I was about to get those answers we so desperately wanted. It felt like forever until someone finally picked up the phone. I explained why I was calling and, without missing a beat, the voice on the other end just started reading the results.
"The brain scan looks normal. The spine. Yeah, that looks normal too. Except they did find a cyst but she said that's normal and shouldn't be causing issues. Did you have lab work done too?"
I'M SORRY, WHAT?! First of all, you didn't ask me my name. You didn't ask me his birth date. You didn't prepare me for the fact that YOU were giving me the results. Shouldn't a doctor be doing this? Or a radiologist? Are you a doctor? A nurse? A receptionist? Do you know what you're talking about? Wait, did you say normal? Everything? Nothing out of the ordinary? A cyst? Where? How does "she" know it's normal? Who is "she"? Does she know my son's symptoms? Does she know there HAS to be something wrong with him?
"Ma'am, you had bloodwork done too, right?"
YES WE HAD BLOODWORK DONE. CAN'T YOU READ THAT IN HIS CHART?
I could barely speak. I told her we did have bloodwork done and she said something about not having all the results back so they would call me when it all comes in. And that was it.
I called Cody right away and told him what she had told me. I told him I didn't believe her. I was going to call back. I was going to ask to speak to the neurologist. We were getting a second a opinion. I told him I was going to find the best doctors in the country for our boy. I'll do whatever it takes. I won't stop.
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