Well, Thursday we finally got to take Apollo back to the neurologist. For a while there it felt like we may never make it back.
On that difficult day back in September that I’m sure we’ll never forget, we were told we’d be scheduled to come back in two weeks. Well, two weeks turned into two months, which eventually got pushed back ANOTHER two months.
But we finally made it. And after all that build up and anticipation, it was pretty anticlimactic.
I have no idea what I was expecting out of this visit. All I know is that 4 months ago our minds were blown. We found out our perfect little newborn was in fact flawed and had brain damage. It was a whirlwind trip and we saw the neurologist for only a very brief period. But honestly, I think everything we were told in the hospital when he was initially diagnosed was all there was to tell at the time. And still to this day is.
And I know I have probably been a little vague all along for anyone following Apollo’s journey, so I’m going to try and fill everyone in a little bit better.
For anyone interested in specific details about everything, here’s a (not so exact) run down of what we do know so far:
- Apollo has Microcephaly. (Defined as “a condition in which a baby’s head is significantly smaller than expected, often due to abnormal brain development.”)
- Microcephaly doesn’t have just one clear outcome or prognosis. Every single person with Microcephaly can have any number of similar, different or unique conditions.
- It is often times caused by something viral. Doctors use the term TORCH for these infections. It’s really just an acronym for Toxoplasmosis, Other (syphilis, varicella-zoster, parvovirus B19), Rubella, Cytomegalovirus (CMV), and Herpes. And it’s now known that Zika causes Microcephaly. All of our tests came back negative. Yes, they even tested us for Zika antibodies.
- It can also be genetic, but we’ve yet to decide if we want to attempt that route yet. From what I hear insurance can be a pain when it comes to genetics testing and it can be very expensive without insurance.
- Apollo has calcification on his brain, with significant amounts on the actual brain stem. Due to the amount of calcification seen on his CT scans the neurologist has let us know that she believes it is highly likely that Apollo will have cerebral palsy. (She told us that when he was six weeks old and mentioned it again yesterday, that she strongly believes he will have cerebral palsy. She said she can’t really say for certain until he is at least a year old, but just going by his scans and her history with past patients, she felt confident enough in telling us how likely it is.)
Apollo will be 6 months old on the 28th of this month and he doesn’t have much mobility. Yes, he moves. He moves around like any baby, but he has no real intentional movements. He has started reaching out and feeling of things, but he’s barely lifting his head. He doesn’t try to roll over. He doesn’t do most anything an average almost 6 month old can do.
And while some people hear that and feel sorry for us or feel sad or want to pray that things will get better, I just see this sweet little baby that smiles when he hears his mommy. That coos when he hears his brother and sister playing next to him. He’s a happy little lump of sugar.
I’ve adjusted to this new reality so far. Things will be difficult. I’m sure some times will be harder than others.
But what I’ve come to realize in dealing with all of this is that the most important part of it all is love. As long as Apollo can smile and react and love his family and we can do the same for him, it doesn’t matter what he accomplishes in his life.
He might not ever be able to walk. Or he might. He might not ever be able to talk. Or he might. There are going to be tons of things that he might not ever do. And there are going to be tons of things that he does do that make us so proud.
He’s shown us so far that he can recognize who we are and he can react to that in a positive way and that to me is HUGE.
In the few months that we’ve known about Apollo’s condition, I feel like I’ve gotten a whole new awesome perspective on life. I can only imagine what a lifetime with this precious little angel is going to be like.
Is it crazy if I say I’m a little excited about what this life is going to bring now?
From the time I was a child and on into adulthood, I’ve always felt like I wanted more out of this life. Nothing was ever enough. I wanted the biggest love ever imagined in the most romantic of fairy tales…but I didn’t want to be tied down. I wanted to see the world…but I wanted to be close to home. I wanted a family…but I didn’t want kids.
As you can tell, like every young adult, I knew EXACTLY what I wanted. *Sarcasm intended*
But in all seriousness, I’ve always felt like my life was missing something.
I won’t say I was bored with life necessarily, but I just knew there was something else.
I’m sure everyone has felt this in some way or another at some point in their life.
And it’s crazy to think about now because it’s just one of those things that is there in your mind that you don’t really dwell on. But I am thinking about it now, because I think I’ve finally found that something. That more. That purpose in life.
Apollo is going to give so much purpose to this life and yes, I’m giddy with excitement to see just how beautiful he can make it.