IT'S ALL GOOD

I said I was going to do better at blogging. Obviously I lied. But I do have exciting news to report. The good news – the best news ever – is that Colby has received his 5^th Spinraza injection. He was due for it on March 15. There were issues with Colby's insurance. It changed on February 1^st to United Healthcare (UHC) - the suckiest insurance on the planet. Colby was denied Spinraza twice. Then the company that makes the drug offered to put Colby in their free drug program, meaning Biogen would give Colby the drug at no charge for a year. That's over $300,00 worth of medication being given to Cincinnati Children's! But apparently Cincy hasn't decided whether or not they will accept Biogen's free drug program. Ok, I totally don't understand that. It wasn't just Colby who was getting the screw job on this issue. There were 3-4 patients who were also affected by this UHC denial mess. I was very disappointed in Cincinnati's inflexibility, along with them seemingly making no hurried attempt to work on this issue for the patients who needed a quick resolution. So, there we were. A company was willing to give Colby the one and only drug that would help his SMA, yet Cincinnati Children's wouldn't accept it for whatever reason. Talk about frustrated.

Then enters the family liaison representative from Biogen. She is A-MA-ZING. She works with SMA families and is a crucial link between Biogen and the patients who need this drug actually getting it. She was able to help me switch gears and think outside the box. Long story short, Colby received his Spinraza injection here in Louisville at Norton Children's. I was amazed at how quickly we were all able to pull this together. Colby had an appointment with the Louisville neurologist. Then he needed a CT scan and x-rays. While we were there we met the radiologist who would be performing the injection. Then we got it scheduled and bing, bang, boom, Colby got his Sprinraza this past Thursday. Incredible. I'm so, so, so thankful Colby was able to get his Spinraza within a reasonable amount of time from when it was due. The next injection is due in August, so we can put this worry on the back burner for now.

So I need to clarify something. There was another local man with the same name as my dad. He and my dad lived maybe 6-10 miles apart. Apparently this other man had a wild side and ended up in jail a couple times. When my dad was still teaching, one Monday morning he had to explain to the principal of his building that he was NOT arrested that previous weekend. It was the other guy with the same name! Well, this gentleman passed away a couple of weeks ago. I assure you it was NOT my dad! My dad is very much alive. I've received a couple of condolence calls. Again, it's NOT my dad. Yes, my dad has had some health issues lately, along with a couple of hospital stays. And while I appreciate people reaching out to give their sympathies, again, it's NOT my dad. Nothing like some total confusion thrown into the mix of my already stressy life!

I'll end with this cute Colby story. As we know, most of the time he doesn't use his eyegaze to communicate. Watch YouTube, change the TV channels, sure, but proper eyegaze communication has never been Colby's strong suit. His eyegaze was set up Friday, the day after his Spinraza procedure. His nurse asked him how he was feeling. He went right to his feelings page and said, “brave.” Damn skippy you're brave, Colby Michael. He's the bravest, strongest, most stubborn, wonderful human I know! Sounds like he has some sense of how proud I am of him. Warmed my heart when he said that.