You Have to Do WHAT?! The Diagnosis

So we finally have the official diagnosis: Sagittal Cranisynostosis (aka Scaphocephaly). Basically, it's exactly what we thought it was. However, the treatment is somewhat different than originally expected... but more on that in a minute.

First, the good news! We ended up meeting with both the Pediatric Neurosurgeon and Craniofacial Surgeon last week, and I am happy to report that they are AMAZING doctors! Professional, experts in what they do, but very personable and were able to make us feel comfortable.They were also able to explain everything that was going on (and everything that WOULD go on) in plain English that you didn't need a medical degree to understand. Answered prayers on that one!

Now, the not so good news... The surgery is different than what I expected it to be. A lot more invasive. Ok - a TON more invasive than I expected. It ends up that the top and front portions of D's skull is fused - not the back portion as I had thought. So, the endoscopic, less invasive surgery isn't an option. So here's the scary part: they have to do a craniotomy. In English: they are removing his skull. To do this, they have to cut his head open from ear to ear. Then, they remove the top of the skull (completely), reshape it (outside his head), and then put it back and reattach it using screws and other hardware. I'll give you a second to let this sit in... because I know first hand that the visual is highly disturbing... Ok. So one good thing is that the screws are dissolveable (somehow) and so he won't have any metal in his head. YAY! (Can we say airport security nightmare?! Just kidding : ) ) Another good thing - after the surgery and recovery, he'll be 100% fine. No helmet!! Basically, the screws take the place of having to wear a helmet. And because the skull is manually reshaped by the surgeons, there is no need for the helmet (which is used for shaping purposes). Once he's healed up, he'll be like every other rough and tumble little boy, with no restrictions on his activity. Crazy, right?

Because the surgery is more invasive, the doctors want to wait until he is at least 4 months old to perform the surgery. Today I got the call that the surgery has been scheduled - last week in October. In the meantime, we wait patiently. But despite everything, I feel at peace. My anxiety has reduced from about a 1,053 to a 5 (on a 10 point scale). I believe I am witnessing a greater plan unfold right before my eyes. And that is a truly amazing thing : )

Facebook Friend of Foe?

In this age of social networking, how do you determine who is a "friend"? Do you accept "friend requests" from everyone? No one? Only people who are your close friends "offline"? Family? A week or so ago, I cleaned house on Facebook, the main social networking site I use. I took a look at my "friends" list and mentally put them into the following categories:

• Entertaining/Interesting Friends: People I don't necessarily know very well, or haven't spoken to in a long time for whatever reason, but who I find funny or have interesting things to say

• Online Friends: People who I've become close with through my blog or through Facebook and I consider them real friends - I care about what is going on in their lives, and they care about mine. We would totally hang out if we lived closer : )

• Besties: People who I interact with in the "real" world on a regular basis and know what's going on in my life, even before I post it on Facebook or my blog

• Family: Obviously, family. But also the friends that you or your husband have known for so long that they feel like family and are always in our hearts and automatically get a spot on your "friends" list no matter what

• General Friends: People who you may have been close to at one point in time, or are an acquaintance. Most importantly - you are interested in what is happening in their lives, and they are interested in yours at a certain level. Because that's what social networking is all about, right? 

And then I got to thinking... do you have expectations of these different groups of "friends"? For example, I don't expect any interaction from my "Entertaining/Interesting" group. I basically just like having their funny one liners, thought provoking links, or general observations pop up on my "News Feed" each day. That is the extent of our relationship, and that is cool with me! As far as the categories of "Online Friends, Besties and Family", that is who I mostly post for... to maintain a consistent conversation through pictures, stories and updates. 

And as far as "General Friends" - well, they move in and out based on the subject matter. But I think there are certain times when that category needs to step it up... and that is during major life events. Engagements, weddings, pregnancies, births... these people (in my opinion) should at least "like" a photo or make a quick comment. Why? Because they are happy for you! Because something amazing just happened in your life, and it's only right to acknowledge it. Isn't it weird to be someone's "friend" - even only via a social network - and not acknowledge something awesome that just happened in their life? You look at their pictures. Read their status updates. But you can't take two seconds to share in their happiness when something awesome happens? I sure think so. And so I used the most recent amazing life event - the birth of Baby Deacon - to make some cuts. If someone who I think should have acknowledged his birth, but didn't, they got axed. Harsh? Maybe. But if they can't even acknowledge the birth of my son, then I certainly don't want them to have access to my photos or updates or life in general.

The rules of social networking are still being worked out. But I decided to take it upon myself to draw a line in the sand : ) Do you agree with my friend assessments and method of giving people the axe? Have you done the same? Let's discuss! Because... after all... you all are my friends : )

Surgeons and Doctors and Specialists, OH MY!

We're off to see the surgeon, the wonderful surgeon of... pediatric brains. Doesn't quite have the same ring to it as The Wizard of Oz, does it? : )

First, let me say THANK YOU for all of the support and love we received after posting about Deacon's craniosynostosis situation. Before posting, I didn't know anyone who had gone through this. Now - come to find out - a lot of people know people whose babies had this condition, got the surgery, and are now healthy, happy babies. YAHOO! And that's why I love this blog and the sometimes over-sharing that I do. Because it's nice to know you aren't in it alone. I love being part of this community of mamas. And I thank you again for the support, love and prayers! We feel it... we really do : )

So this morning we are heading over to our first official doctor's appointment re: the craniosynostosis. First up: the pediatric neurosurgeon. And I have mixed emotions about it. Part of me hopes we'll walk in, the doctor will take one look at Deacon and say, "There's absolutely nothing wrong! He's fine!" But I'm not letting that hope overrun the reality that I know in my heart is true. So even though I hope and pray and wish the doctor will give us a clean bill of health, my second choice is that we walk in and the doctor says, "Yes, he has it. But it's absolutely fixable. We've caught it in time. No damage, swelling or compression of the little man's brain. Now let's get this taken care of asap." And then we are whisked through a whirlwind of tests, appointments and surgery - and we can look back in a month with smiles on our faces because we all made it through to the other side.

Luckily, I'm generally a pretty positive person. But I have to admit that at times, my mind goes crazy with the other possibilities of what the doctor may say. Like what if he says it's worse than we thought. Or that it will take multiple surgeries to fix. Am I ready for that? Am I ready to hear those words and deal with that reality? I'd like to think I am. But how much pain can your heart take before it completely shatters?

I went out to dinner with my BFF mama friend the other night (no babies, no husbands, just us! LET THE ANGELS SING!!) and I realized that I am holding a lot of my emotions on this inside. I talk about it with my husband every day, but I'm keeping myself from really feeling it. I talk about scheduling the appointments, about the great doctors we will be working with, about how each day (especially over the last week) we both have noticed the increasing size of D's forehead and the "smushed" look of the side of his head. But I don't let myself get too deep into the emotion of it. I'm holding back on that. Because if I let myself go there now, I might not be able to get through the next few days of appointments without completely losing it. When I start to feel the pressure of tears build up, I tell myself that if I can just get through the next week of appointments and find out what the next steps will be, then I can let go. And I will... it's inevitable.

A few years ago my mom and I attended a Women of Faith conference and one of the speakers said something pretty powerful that we both repeat often... "To get over something, you have to go through it. Not over it. Not under it. Not around it. But THROUGH it." Until you let yourself actually GO THROUGH the sadness, anxiety or whatever else you may be dealing with, you won't be able to move on from it. Because I firmly believe this concept to be true, I know that I will go through it. But not just yet. Right now I see myself as kind of hovering above the situation, keeping all the ducks in a line and everything moving along - keeping a clear head so the best decisions can be made. But I know soon I'm going to have to "go through" it. But first I need a clear picture of what exactly we are going through (surgery? how many? what kind?). And today's doctor's appointment with the pediatric neurosurgeon will begin to bring that into focus.

Next up on Thursday is the Pediatric Craniofacial Surgeon. And then, TBD. But you know I'll let you all know... : )