Does anyone else feel like they have been chipped and sloppily super glued back together? Then as the next trial comes, that glue slowly starts to weaken so you slap some more on top but never really fix that chipped area. Leaving to fissure and spread? Anyone? Just me? Ugh…
Well my chips are multiplying and the super glue is trying it’s hardest but it just isn’t working anymore. Time for some real repair work in the next few weeks. What was the breaking point? Well not necessarily a breaking point but just another trial. Ollie woke up on Monday from his nap with a large lump in his malformation back by his ear. This has never been an area of concern and has never had any kind of infection present so we were definitely thrown off. It wasn’t presenting like cellulitis, which has been the case with every time he has had an infection. On Tuesday we called his specialist and they immediately got us in for a clinic visit as well as an emergent ultrasound.
Now this might get a little medical but I will try my best. Within Ollie’s cheek there are microcysts (small cysts), macrocysts (large cysts) as well as a vascular component (blood). We honestly kind of forget about his vascular component because there isn’t very much of that within his cheek. Well good old vascular decided to join the party. The ultrasound didn’t show infection which we are super thankful for. It did show a macrocyst filling with blood, pushing the rest of Ollie’s malformation forward, making it larger.
Can I be honest? I was hoping for infection…… why would I ever hope for such a thing? It’s known. His doctors know how to handle it, heck, we as parents know how to handle it. It’s a “simple” fix and something that he has had a number of times before. This, this is a such an unknown that it completely scares me, wet my pants, scares me.
Ollie is scheduled for an MRI under sedation next week Thursday. If you could add us to your prayers, that would be greatly appreciated. For right now, we are keeping an eye on the area. The way we do that is to use a surgical marking pen. We have used it for all of Ollie’s past infections. It helps keep an eye on the redness and possible progression. This time it’s harder because there is no redness, just an increase in the lesion underneath. But we are trying our best. That being said, in some of the pictures, you might see marker on his cheek.
Every time something new comes up for Ollie, I feel like I handle it with less and less grace. I’m not sure why, other than the fact that I just wish there were no steps back in his treatment. We were really hoping to see more of an improvement with his surgery in Boston and for a minute there his cheek was looking really good. With this new issue, I feel like it has put us right back where we started. Like we put our child through a surgery that did nothing for him. Now there really is no way to tell if that’s the case or not, just sharing from the heart.
So I guess I am cracking a little more these days. But instead of trying tirelessly to keep putting the pieces back, I am letting them fall. Because maybe those pieces are falling away for a reason, being pushed out of the way so that the right piece has room. Instead of holding on to past hopes and dreams that are simply unattainable, maybe it’s time to create new ones. Ones that coincide with the life that we have been blessed with and ones that will be truly fulfilling. The process might look a little scary and the recovery time long, but one day this girl will be full of all the right pieces.