thejlbs » craniosynostosis

Cranio Surgery Two-Year Follow Up

Jim — Tue, 29 Mar 2011 02:01:48 +0000

Two years! And he looks GREAT. The doctors just want to see him again every two years to keep an eye on everything. And also they suggested he get his eyes checked regularly and get a developmental evaluation. Sounds easy and interesting enough.
By the way, we are so grateful and relieved to be here, rather than way back here…

January 20th, 2009

Jessica — Wed, 23 Dec 2009 03:00:24 +0000

I’ve been thinking about the miracle of life during Advent, and all the blessings it beholds. I’ve also been remembering what we were facing this time last year. One baby on the way, and another heading into major surgery. If Bastien hadn’t gotten sick in December, we would have been just getting out of the hospital from his Cranial Vault Reconstruction surgery on Christmas Eve. I remember being very worried about all this and how it would change our Christmas spirit. And now that it all has passed, I see it would have been just fine. But it sure is hard to know that in the moment.

As Bastien was driving us up the wall this weekend (not sleeping and throwing some beastly temper tantrums), I was also editing some video footage from the past year, including the surgery. Jim expressed his anger to me about Bastien’s behavior. I assured him he would not be angry after seeing the following.

I am so grateful for the happy Christmas that awaits this year!

Bastien’s Cranial Vault Reconstruction – 6-Months Post-op

Jessica — Mon, 20 Jul 2009 03:00:59 +0000

What a long, strange trip it’s been with this whole head morphing thing. We still have another 12 months of possible changes, but are pretty happy at six-months out. Let me take you back to the beginning, when we were young and oh-so-brave.

Then two weeks later…

And then a few more weeks and months went by and we began to really wonder what exactly we did to “improve” our son.

But now, here we are, and things are really shaping up.

I cannot say, like so many of the cranio moms I met online can, that I didn’t regret the decision to operate for one minute. I’ve often regreted it and wondered if I ruined a perfectly beautiful baby. But I always did my best to trust the plastic surgeon’s vision. And as luck would have it, he had a pretty good vision indeed.

If A Tree Falls In Your Front Yard While You’re Sleeping, Can You Still Hear It?

Jessica — Tue, 07 Apr 2009 03:00:05 +0000

For all you non-philosophical types, the answer is no.

This morning we woke up to our third unexpected tree loss in two years here on the farm. Kinda scary, since Bastien and I play around that tree all the time, and Mazzy’s all but climbed it to retrieve many a stuck ball.

My only consolation is that we would most likely plant a new tree soon anyway, in honor of our new one’s birth. And besides, it’s not like we have a shortage of trees around this place.

So onto the real news. Today was Bastien’s two-month follow up appointment for Cranio Vault Reconstructive (CVR) surgery. It was pretty grueling, since we had a two hour wait, a limited nap in the car, and no pacifier. However, all things said, he was on his best behavior.

The doctors seem to be delighted with his progress. They were amazed at the amount of bone re-growth in his skull. They just thought he was looking super and even encouraged us that his pink scar would turn white some day, to match his delicate Irish-white skin. I prompted the doctor to explain the bulge above his right eye and even countered him a bit when he told us it could be because he favors one side while sleeping (I said it has always been bulge-y, even when he was in the PICU). Doc still thought there was no need to be concerned, that he still may have 10-15% swelling that needs to reduce, and that it’s just his soft tissue that is still finding the right place within the noggin. But here is the part that did not satisfy me. He said they could always go in there later and fix it and they wouldn’t even have to open his head again–they could just go in through the eye socket. OMG, let’s just not even think about that, OK? But for the good news: we do not have to go back for two more whole years! That is one hundred percent longer than we were anticipating. Now I’m not good at math, but you can barely do better than that, right?

One last tidbit. While we were toughing it out in the waiting room, another family was there with an 8-year-old boy who had undergone the same surgery at age 14-months. The mother was ready to share (quite unprompted, because you know the JLBs are not the nosey, talk-to-strangers type). I think she remembered all the anxiety and questions that we cranio parents face in the early days and wanted to be the living proof that things do work out in the end. So herein lies the rub… the kid did not look that great. I mean he was not deformed by any stretch of the imagination. But he had a distinctly different look. And his brother was even there for direct comparison. Yep, different. Like his forehead was narrower than average or something with still some bony things happening on the side. However, you could not see his scar at all. So there’s the silver lining, I guess?

Bastien’s CVR – 2 Months Post-Op

Jim — Fri, 20 Mar 2009 04:00:09 +0000

Bastien’s CVR — One Month Post-Op

Jessica — Wed, 18 Feb 2009 02:18:49 +0000

From January 20 – February 20

Cheating a little as this photo was snapped yesterday. Still bulge-y and squinty. Actually, his left side is pretty good looking. The incision looks great too and is almost all covered by hair (just a few random stitches and scabs left). We have had no recent head-bumping scares, which means we will most undoubtedly have one tomorrow. Memories of the hospital are thankfully distant and we’ve had nothing but happy days recently with lots of good sleeping. Yeah, he’s pretty much the best boy ever.

Slightly Worried That Bastien’s Skull Will Turn Out Like This

Jessica — Thu, 12 Feb 2009 22:40:20 +0000

Michael Arrington of Techcrunch.com fame (and infame)

If it does, I will blame the insurance company. Because why would they approve an expensive surgery that does that? Please don’t let this man be our plastic surgeon’s inspiration. Please oh please oh please. (Nothing personal, Mr. Arrington).

Hmmm… new skull… or new, fully-loaded luxury vehicle…hmmm…

Jim — Tue, 10 Feb 2009 19:31:52 +0000

Bastien’s CVR – Before & After

Jim — Sat, 07 Feb 2009 15:16:27 +0000

Bastien from the front at 12 months and 17 months (3 weeks post-op):

Bastien from the top at 17 months 1 hour pre-op and 3 weeks post:

Happy Days are Here Again

Jessica — Thu, 05 Feb 2009 22:43:54 +0000

Finally, just a normal, happy day at the mall. Even as a professional writer, I cannot come up with the words to describe Bastien’s complete delight with the play area. Climbing, sliding, running, hiding…oh my. It was any little boy’s dream. And enough to put any mom or grandma of a recent cranio kid at risk of heart-attack. But I mean the sheer joy Bastien exuded was more than worth it. He even hung out with some all-too-happy-to-be-nurturing girls in a little cave structure. Oh the squishiness of it all! Made me feel like the best mom ever.

Here’s Bastien experiencing a little stroller envy.

On the way back, we had a little Walmart shopping to do and purchased a potty chair on impulse. It looks like a frog and I must say Bastien is quite enamored with it. It’s not that I have any unrealistic fantasies about getting him out of diapers before babygirl gets here. However, I just discovered that I can get in an awesome shower by setting up the portable DVD player in the bathroom, and well, he might as well have something appropriate to sit on. So, we’ll see how it goes…
PS. About that best mom ever thing…he just took a tumble off the side of the couch (I was standing right next to him!). Right onto the side of his head. And blood even came out of his bottom stitches. And just like that, I’ve lost my title.