Guys we are so excited to share a little progress with Ollie. So as you know we have been struggling to get Oliver to Boston for de-bulking surgery. Well, at his last appointment with his specialist, she was all for the idea. This in itself is pretty amazing. Instead of fighting the idea, she was very gracious and open to helping in any way that she could. Hallelujah! So finally with a green light from her, I feel like our journey has begun picking up speed. So what does this all mean?
Our first step is to apply for coverage from insurance yet again. They denied our initial consults when we visited in December, so we ended up going to Boston on our own dime. That proved to be expensive, but we were able to plan for that. Surgery is a whole different ball game. There would be no way to go this time without insurance. In order for insurance to cover, we have to prove that we have seen one other surgeon in Michigan. At this time, we have been referred to University of Michigan to their Plastic Surgery Department.
Now that the process is underway, we wait until we hear from U of M for an appointment date. Ethan and I have never been more excited to hopefully get a rejection about Oliver’s care. Insurance needs to know that Boston is where we need to be and that Michigan hasn’t advanced far enough to help him. So please pray that whomever we see at U of M is willing to pass off on Ollie’s care. All of our progress hinges on a rejection from U of M.
If all goes well, we would like to be heading back out to Boston in late summer/ early fall. That seems crazy to even write about! For so long it has felt like we were hitting a wall, that when a door actually opens, it seems strange. God’s timing is the best timing right?!
We also heard from the Interventional Radiologist (IR) who performed Oliver’s sclerotherapy. After his last round, we saw no true difference in Ollie’s malformation. So he suggested no more sclerotherapy for Ollie in the near future. De- bulking is the true next step for him.
As for what happens in Boston, we haven’t really gotten that far yet. It sounds like we might be out there for two to three weeks, depending on how much recovery is in store for Ollie at the hospital. Other than that, it will be a bridge we will have to cross in a few months when all of the puzzle pieces have finally come together.
Phew! I’m kind of overwhelmed just writing about all of that! But what Ethan keeps reminding me is that we take it one step at a time. That is all we can truly do because this momma would have had a nervous breakdown about 4 hospital visits ago, if I didn’t learn how to break it all down to bite sized pieces.
So keep us in you prayers. There is still a long road ahead of us and we are going to need all the love we can get! In the meantime, we are loving life. The boys have been able to get their sandbox out and watch the plants spring from the ground. I’m very excited about this summer and watching the boys grow and explore. Happy Thursday everyone!