It's a question I'm asked often...and I do my fair share of asking, too. The past couple of months we've had a nice break from clinics, OR's, and needles. We have been focusing on our therapies and watching Caroline discover all sorts of new tricks. It's been so much fun to watch her figure out she can stand up on her own. I never get tired of saying, "I see you!" and hearing her cheer "yayyyy" to herself.
Yep, September and October have been good to us. Now, it's time to prepare for a huge climb on this rollercoaster. We have known Caroline would need this surgery for 9 months now. We first met Dr. Fearon 7 months ago and knew at that first meeting he would be our surgeon. Since then, both he and her neurosurgeon, Dr. Sacco, have each performed surgeries on her...so in other words, we trust them. One day I was explaining our relationship with these surgeons to a friend. I told her in my eyes, they are both just below angels but above men. We know we are in excellent hands. We know the facility. We know the staff.
And yet...
I have been avoiding the thought of this surgery.
I know it's necessary and it will greatly improve her quality of life, but I'm still scared. If I let my mind go there and wander around the fears of potential complications and the recovery process, it could get dangerous. Walgreens is just down the road and tis the season for Halloween candy. It's too early to start binging on the mini peanut butter snickers, y'all. So, instead, I've been focusing on doing as many fun things with Caroline as possible. She enjoys shopping as long as she has her Starbucks blueberry scone in reach. They know her order now...whole milk, no ice, warmed scone. She knows what she likes. We go for wagon rides, bake cupcakes in her play kitchen, and hug the dogs. Those are my kind of therapies.
This week though we have to make time for the not-so-fun outings. Caroline will begin Procrit injections this week and for the following 2 weeks until surgery. This is to help build up her blood levels so that she hopefully won't require a blood transfusion. Yeah, this surgery is the real deal. Here's a link to his website which explains the procedure in detail if you are one of those people who is interested in the details.
The Craniofacial Center Procedure
For those who like a brief summary, here you go...
Basically, the surgeons will make an incision ear-to-ear and will remove part of Caroline's skull (the part affected by the prematurely closed suture) reshape it, and put her skull back in place. Sounds pretty crazy, right? Fortunately, we know others who have gone through the procedure and are doing so well. Like I said, we hope to avoid a blood transfusion but we know it is not uncommon to require one with this procedure. The surgery can take anywhere from 4-10 hours and will require at least one night in the pediatric ICU, more commonly called "the pic" around here. Then she will be moved to a regular room for another night or two. We plan to stay in the Dallas area for about a week as long as everything goes well. She will have pre-op appointments and an MRI to check her VP shunt a couple of days before surgery.
As always, I thank you for keeping up with Caroline and riding this rollercoaster with us. We so appreciate your thoughts and prayers for our warrior girl. She brings me so much joy and I hope she puts a smile on your face, too. I feel like I need to throw this in here, too. I don't know why, but I feel this strong urging so I'm just going to say it. Sometimes it feels like there's no end in sight, and though I don't know your situation, please hear this. If you are expecting or already have a child with special needs, please know it does get easier and it is so very worth it.
