The worst part is over, I think. We had the STIM test done. We had my boy sedated, watched him as his chest caved in and struggled to breathe, his body fighting itself while they put him under to have an MRI. We've gone to the appointments, we've spoken to all the doctors, we've gotten results, and we've weighed our options. Now in a normal situation, I don't think this would have effected me as much. It wasn't surprising, he hasn't been on the charts for height since birth. I've always suspected something might be off. But with all that we faced with Madelynn, I was really really hoping for a break in the medical issues department. But here we are, facing a potentially life long treatment plan.
Our boy will need growth hormone injections six days a week at least until he stops growing, potentially for the rest of his life. He's five, and that was a hard pill to swallow for both Jason and I.
When we went over his testing results with his pediatric endocrinologist, we were initially hoping for good news. Apparently a passing marker level for growth hormone is a level of 10 or above during the course of the STIM test. Brady's peak level was 3.8 and his lowest number was 0.2. We discussed a lot of things, but a part of us was hoping maybe he was borderline deficient and we'd just let him grow the way he was growing. Unfortunately, his case is pretty severe, so we made the decision to proceed with treatment. Shots. Every day. For our five year old.
The next step was getting a pre-authorization from the insurance company to somewhat cover the costs of the injections. We were denied the first go round, but found out we were approved in the second round late last week. Thankfully, the endo did all the leg work for us on that part and told us about a co-pay assistance program we could apply for. If we were to receive that, we'd get $2,400 toward the cost each year for the first two years of treatment, which would help significantly. Apparently without this card, people pay anywhere from $300-$700 per month out of pocket, so it made the finance person in me extremely anxious.
By the grace of God, we got news today that we were approved for the copay assistance card. I also learned that the $2,400 will count toward his deductible, which is $2,600, so it will essentially cover most of that. We are looking at approximately $65/month instead of potentially $700, so that is wonderful news.
Our next step is to schedule a shipment and get training on how to give the injections. I'm sure we will learn that all with time, I'm just thankful the hard part is over. We've determined he needs treatment, but thankfully we are on a journey with something that is 100% treatable.
I included a pic below so you can see how he compares to others in his classroom. He currently is as tall as an average three year old, but he's five. I'm looking forward to that gap closing a little bit, not just for appearance, but so my boy can feel confident, so his muscle tone can be what it is supposed to be, so he can have sustained energy he needs, so he can sit normally in a chair and have less falling accidents, so he can have fewer shaking episodes, and so he can develop and grow the way he is supposed to. I'll keep you all posted with his progress.
