WIN

I'm an expert, a professional!, at turning his distractor. Each side is now turned an even amount and we've almost caught up with lost mm. We should be all done turning by Wednesday, but if not I won't mind 'cus I'm so awesome at it.

He has an appointment Monday with another pediatric opthamologist because his right eye is still gross. I mean gross. His tears are puss-ie (Good lord, is there an appropriate way to spell that word?!). I don't have a clue what they can do for him if surgery didn't work. I guess another surgery. yea.

Another win, he is so fat now. fat fat fat. OK, maybe not to anyone else but if you could have seen how thin he looked before. He is actually starting to get his first 'baby fat crease'. You know, where it looks like they have a rubber band around their wrist? Or maybe I just put a rubber band around his wrist and forgot about it. Crap, now I gotta go check.

And speaking of firsts, he laughed out loud a few days ago at my mothers hair. Maybe NOW she'll believe me when I say she needs a new hair cut love you mommy. So in addition to his instinctively good fashion sense I would have to say he is a pretty humorous little fatty.

FAIL

No wonder turning was so easy. It wasn't working. When he went in for his weekly checkup yesterday, the X-rays showed that there hadn't been any advancement and the bone had begun to consolidate. Dr. G had to *cringe* crank on the screws to make up for lost mm and to basically un-consolidate the bone. You can imagine what that felt like. My poor boy. Amazingly, he is already back to normal and doesn't seem any worse for wear. He even still sleeps through the turnings.

They took the 'bling' off to make turning idiot (or Julie) proof, so now there is just a tiny metal 'cylinder' sticking out under his jaw instead of the long dangly whatsahoosits.
before ................ after

Click on the first picture and you get a really good close up of one of his danglies. (heh heh.... danglies)

I much prefer it this way. The bling was constantly getting caught on his shoulders when he would turn his head putting pressure on the screws in his jaw, which undoubtedly hurt like hell, he'd panic, struggle and make it worse. With them off I can clearly feel the difference between when it's working and when it's not so hopefully I'm doing it right but we're going back Tuesday just to be 100% sure. If not, he may have to have another surgery so let's pray I'm the sharpest tool in his head.

I write this for friends and family but I also know how much I appreciated the one blog I found on the Internet about another mothers experience with a jaw distraction. So, in case someone comes across this in their Internet surfing, the rest of today's post is just for their reference.

When turning it, it shouldn't feel smooth like slicing through hot butter, there should be some resistance and it should feel slightly... gritty, like tiny little gears turning. But it shouldn't take more torque than what just the fingertips can manage. I can now see that the metal cylinder sticking through his skin is turning, which is what I should have been watching for the whole time instead of just concentrating on the screw driver.

Bionic Baby

Gare Bear has remembered how to drink so the swallow study is canceled. As his jaw grows he may forget again but at least I'll know it's frustration and not pain that's causing the grouchy-ness. And I'll know how to help him remember.

With his BAHA and bling (the metal hanging out of his face) he doesn't even need a Halloween costume. We are thinking the family will dress up as the Teen Titans because Gus wants to be Beast Boy. So, Ben = Robin, me = Starfire, Brenna = Raven and Garrett = Cyborg. How perfect is that?

I can't believe I haven't mentioned how great Ben has been through out this. I guess I assume you all know it's a given. He does just as much as I do. He has always been so available, on every level. He is a true partner. And he has maintained a great attitude even though I know it isn't as easy for him because of his kind, gentle nature. Eleven years ago yesterday I got tired of waiting and made the first move. Best impatient impulse ever. He is the best person I know, the best husband, friend, father... and God knows my standards are high! He meets them.

Gratitude, Good News and Grumpy Garrett

Thank you all for the prayers, encouragement and kind words. When you have so many people rallying around you, it's impossible to feel bad.

Almost. God I'm tired. My gravely voice is scaring the kids.

Garrett is doing pretty good. What little swelling there was is going down fast. I'm actually going to miss his little chipmunk cheeks. Turning is way simpler than I was imagining. I can't believe how easy it's been so far but I dread the final days of turning when it might start hurting him.

He isn't sleeping much. His 'bling' is pretty aggravating, especially when the rubber stoppers fall off every frakin 20 minutes and it starts poking him in the chest. But who has time for sleep anyway, what with all the medications, procedures and treatments we have to fit into 24 hours? Where am I going to find the time to address and mail all these formal invitations to the pity party I'm throwing?!

Feeding is tricky because he doesn't want to use his bottom jaw now, either because of pain or because his jaw is getting slightly bigger every day so he basically has to relearn how to suck and sallow each time. It's a pretty complicated process involving lots of muscles and perfect timing. Don't take it for granted. We give the bottle a little squeeze as he tries to suck using just his tongue, but there is a chance he is aspirating so he is scheduled for a Barium Swallow Study this Monday. I'm finding the one way to really upset him is to mess with his eating, complete personality change. It's like watching him turn into a little baby hulk, the only difference being he turns red instead of green. "Baby Hulk angry!" I don't know from whom in the world he gets this obsession with food.

All this snow balls into a pretty Grumpy Garrett. But I am blissfully enjoying the peace and serenity of his sleep. I know he does too.

After the swallow study I'll probably be updating less because hopefully there won't be anything to talk about. No news is good news. I'm not even sure if any body is reading this anymore or if I'm talking to myself. If any one's out there, it might be a good idea to 'follow' this blog so you can just get an update in your email when ever I post new information instead of having to check in. Over to the left is a little button that says "Follow", under the header "Followers". See it? It will also tell me if I should keep this Blog going or just switch to emailing the few people who are actually tolerating all my rambling.

Speaking of rambling... I'm sure most of you know I'm a cereal killer. I could eat it for breakfast, lunch and dinner. Well I found the holy grail of cereal. Not surprising, it's made exclusively by HEB. It's a flake cereal, but not that useless soggy inferior flake like Frosted Flakes. These are the crackly, crisp, fortified, knight in shining armor flakes that stay crunchy to the end. It has a generous amount of dried strawberries. It also has 'yogurt balls' with live cultures! That's right, live cultures! So this cereal is just as good as that fancy Activia that Jaime Lee Curtis keeps going on about. We get it Jaime, it helps you poop! And lastly..... dark chocolate shavings! *choir sings* You do have to keep it in the refrigerator because of the live cultures, but that's a sacrifice I'm willing to make.

siiiiiiiiiiiiiggghhhhh

I had completely forgotten what a normal breathing baby looked and sounded like. No more gurgling, gasping, pausing, snorting, coughing, chest caving, head twisting, arm flailing.....

The surgery went supper smooth and fast. It was easier than they all were expecting. It took the minimal about of time (2 hours, even with the extra procedure due to the tear duct) and there is hardly any swelling. They distracted his ramus 4 millimeters right there on the operating table so the results were immediate. He couldn't on the day of the surgery or the day after, so he was pretty cranky, even juiced up on morphine, but now that he is getting his numy num again he is smiling, flirting and hasn't had a drop of pain meds in 6 hours. Tomorrow we will head home and start turning the 'screws' 2 times a day for 2 weeks to get about 1 centimeter a day. We actually want him to end up with a bit of an under bite, so you'll keep your Jay Leno jokes to yourself if you know what's good for you.

Update and Tips

Tip, if you see a word underlined and highlighted in this blog, you can click on it for more information. Like, if you want to see what's going to be screwed into his jaw bone, click jaw distraction device.

Surgery has been moved to Thursday at 7am and should last 2 to 5 hours.

All went really well during his pre-op appointments. I almost think the little ham enjoyed the attention. He was put under anaesthesia for a CT scan and anyone who's come out of anaesthesia knows how disoriented and cranky it makes you. Plus he hadn't been allowed to eat since the night before. He just laid there smiling while the technicians were prepping him. Now after the scan they received the full force of his wrath, but as soon as he got a boob he was a happy again.

The pediatric optomologist had to dilate his little peepers to check the back of his eyeball for any malformations. Any parent knows that trying to get a baby to open his eyes when he doesn't want to is like trying to untie a knot with oven mitts on... covered in olive oil... while the knot is trying to run away, but he just laid there staring at all the equipment on the docs head. His eyes are perfect but he does have a clogged tear duct and will have a stint placed during the surgery.

The ENT stuck a scope up both nostrils and down into his crowded little throat. I think this is where he started to change his mind about all the attention. Not fun, but it was actually reassuring to get to see exactly why we are putting him through all this. I can't believe he could breath though such a narrow slit that is his esophagus. Poiseuille's law states that the volume of air flowing through a tube for a given pressure gradient increases directly with tube radius raised to the fourth power... whew...in other words, just the tiniest increase in the width of his esophagus will quadruple his breathing ability. So let's go! Chop Chop!