The Dork Days of Summer

Deep, resonating wind chimes, capriciously* harmonizing in the rich scale of A. The children quietly role-playing out a scene at their make believe pet shop. The cheery smell of real peanut butter and strawberry jam on soft, fresh, whole wheat bread. The refreshing oral sensation of Dr.Pepper so cold it’s slightly slushy. Alternating bright, then subdued light filtering in through the expansive kitchen window as puffy, pearly white clouds roll overhead on a breezy day.

As you may have noticed, I’ve recently been inspired to add two F’s to this on-line journal, Feelings and Fotos (roll with it). I’m beginning to see the value in this place being a time capsule of the kids’ childhood. A photo diary of what was, through their moms eyes. I thought about starting a separate blog, and maybe I still will. But really, why bother? I don’t think anyone is reading this that I’d mind sharing a few of my random, awkward feelings.

This might make it harder for my Treacher Collins families to get to the relevant information, so I’ll make a column to the left that will gather all the pertinent stuff, eventually.



Garrett saw his pulmonologist yesterday and mommy has a bit of a crush. The doctor had this dreamy accent, he thought I was in my early 20's!, and he said Garrett is a handsome happy little niño with a perfect heart and set of lungs. And now that he is officially one of Garrett's doctors, he can prescribe the equipment (a new torture device that sucks out the drainage from his nasal cavities) and the medication Garrett needs when he gets stopped up and can't breath at night. And even though he only has sleep apnea when sick, Dr. M still wants to run another sleep study. Not something to look forward to but the more info the better right... right?

While in the neighborhood we stopped and spent the day at the Scarborough Fair Renaissance Festival. It's a place we go every year since Gus was born... cus he loves them...yeah, er... he's such a dork. Anyway, I tried out a DSLR camera but I just don't think my skills are advanced to the point where a better camera will make a difference. I need to work on becoming a better photographer before I worry about out preforming my equipment. But I felt so supper cool carrying around that bad mama jama. And these are some of my favorites.

A mud nymph scurried by and smudged Brennas nose. She was a good sport about it.


My Robin Hood


Granna and Garrett The Great


Out of all her options; butterfly, fairy, unicorn... she wanted a fish, which she still hasn't let me wash off. Before bath-time her eyes grow big as she protectively cups her cheek and crackles "Peas not my fish. I wuv it". It will peal off scale by scale before I'll let a drop of water touch it. Believe it.


Well, it started off nice.
aaaaaawwwwwwww........................................ Gggaaahhhhhh!


And we finished the day with a grail of ale and a calm, relaxing, murderous joust.


*I didn't like using that word any more than you liked reading it, but damnit, that's exactly what they were doing! You try to find a word that better describes the way wind chimes UNrhythmically stutter and stammer, pause, ring soft, then suddenly loud, but all in a whimsical way that somehow sounds entirely on purpose.

Fine, we don't need no stinking surgery.

After having the lengthy pre-op well-check, taking off work, driving up to Dallas at 6:30am and sitting in the waiting room for 3 hours with a hungry baby... the surgery was postponed. Long story short, they screwed up and tried to blame it on everyone else. Their facts don't add up so I'm not buying it. Regardless, this Ophthalmologist is the best at what Garrett needs, and the one Dr. G recommended, so we're sticking with him. I've always said, if I have to choose between the doctor with the best medical skills or the doctor with the best personality, I'll pick the skills every time. I'll just swallow my pride, frustration, expletives... and plaster a big ol' dumb grin on my face till it's all over.

The following day more than made up for it. He had one of his quarterly check-ups by his TCS team and they all agreed; Garrett is about 3 months advanced in all 5 areas of development. That's not 'advanced' from what they were expecting, it's 'advanced' period, in spite of his postulated set backs and hurdles. Boo-ya.

For my own recollection: He says good, mama, bu-bye and "hey dada!", he pulls to stand (even against something flat like a wall, which I'm told there is a distinction) and cruises. He uses the pincer grasp, makes lengthy social eye contact with good interaction and plays well with 'purpose' toys, like ones that have push button, fitted and stacking features.

Like the 100 other times we've been to the International Craniofacial Institute, we mingle with families managing similar syndromes. But for the first time, I was on the other end of an awkward situation. For the first time, Gus was nervous and afraid of the other kids.
There was an extremely vivacious, animated, loud, 7 year old girl with a tracheostomy. We weren't able to understand 90% of what she was saying through her trach, and the sound frightened Gus. He kept trying to hide behind me. I distracted her and we chatted about her favorite TV shows. Then a bright little 5 year old boy came in, and Gus asked The Dreaded Question,

"What happened to your face?"

There is so much pain in those 5 words. No matter how centered and forward we live our lives, that question is like a kick in the gut every time. A time-stopping reminder that instantly drains all the happiness and color out of the room, if just for the few moments it takes to catch our breath and shake it off. And now we were the offenders.
After all these years, all this time to think about it, after all my talk and hypothesizing... I didn't know what to say. As the parent, the one with the info, I've always taken the lead, explaining exactly what it is that make my children look different; "Do you feel that bony ridge under your eyes? It's your cheek bone! My little boy was born without his". But this little boys parents didn't say a thing. There's always the chance no one heard him, right? I didn't know what syndrome their son had. I didn't know what to explain. I froze. Gus saved the day with a shrug of his shoulders and invited the little boy to play with his Spider-Man and Venom action figures. His new friend was just as nonchalant, and off they went. I still don't know what would be the perfect thing to do/say. Maybe by the next time I'll be ready. We better.

But now we're home and recuperating from the excitement of the last several days. We even broke ground on our garden...


But soon it became all about...


And eventually it was more like...

I guess the squash, corn and tomatoes will have to plant themselves.

Spring Forward

Today was one of those days that's so good it makes you feel cliche. We had plans to go to the zoo but when we saw the winding line of impatient preschoolers stacked at the entrance, I simply turned around and told the kids "Sorry, Zoo's full today". The expressions of shocked disbelief and dashed hopes killed me, but without missing a beat Ben cheerily suggested ice cream shakes and an afternoon at the park. They perked up pretty quickly.

At the park, spring had sprung and the Bradford Pears were picturesque, but there was a trash dumpster upwind so I couldn't get any good shots without Gus making a 'stinky face'.

Brenna and Gus ran off in two different directions, which made it harder for Ben and I to keep watch but it was exhilarating to witness the confidence and independence of out oldest two. Brenna hesitated a bit with the big wind-ie slide but when Gus made his way over to that side of the playground, he offered to assist her descent. He first suggested she get on his shoulders but after I made it clear that wasn't happening, they both settled on the traditional one-in-front-of-the-other approach. All it took was that one lesson from her big brother to make her reservations disappear. From then on she was all solo. And very proud of herself, saying
"I'm so bave and tong and tuff."
And modest too!
Well, she did look the part in her pink tutu, ruffled socks and flying eyeball tattoo on the inside of her arm.

Ben and I met two parents whom (whom, not who, right?) had experienced the exact same disappointed pouts as we had. They too planed on a trip to the zoo but decided it was just too crowded. One family had 3 children, all boys. Their oldest had Autism and was dressed in the brightest tie dyed shirt I'd ever seen. The other family had one precious, dog loving, brown haired little girl around 4 with Downs Syndrome. I'm ashamed to admit that people who are different used to make me a bit uncomfortable. Like so many others, I didn't know how to behave. While talking to their parent, do I acknowledge the situation, or completely ignore it? Do I only ask questions of the parents or do I engage the young one as well? Would that make them uncomfortable? Where's the happy medium? But today it was so different. I reveled in the ornery-ness of the older boy. How he critiqued Brenna as she played with her big bouncy ball, trying to represent the behavior of an Emperor Penguin.
"You're doing it wrong. They hold their eggs on their feet not between their knees. And really it's the daddy penguins that hold the eggs. You're a girl. She's doing it wrong, mother."
"Well someones seen Happy Feet!" I giggled. He glared at me and shrugged his shoulders. His mother and I just giggled harder.

I wish there was something I could share, some piece of wisdom I've learned, that could help people who are like I was, be more comfortable around 'us'. Even enjoy the refreshing differences. But it's just not some simple tid-bit of information that will make everything click. It's not a practice or philosophy. For me, it only comes from being immersed in this imperfect life to realize how perfect and normal it is. Well, not normal. But, Why Be Normal?

There was a big black shaggy dog being walked at the park and the little almond eyed girl wouldn't let go. She was attached, one way or another, the entire time we were there. Her dad talked about how her differences don't really matter. How he believes these kids are still essentially the same people they would be with or without any air quote disability. Maybe so. Or maybe they're more.

Were these families always there and we just didn't notice? Are we magnetically charged to attract each other now so we can sit and talk comfortably without having to worry about how the other is feeling.

We get our fair share of stoppers-by. While Ben sat with Garrett, little girls would run up and ask about his BAHA, his small ears, his eyes. We don't mind. So far, it's been innocent questions from people with a healthy curiosity. I think they were interested mostly just because little girls love babies. They want to fawn over him and tickle his fatty fat legs.























Garrett said mama on the 1st, crawled on the 5th and today he's cruising from one piece of furniture to another. NO! Stay a baby! Any tips on how to slow him down? I've heard about putting a brick on their head but I'm afraid that might damage the BAHA.

Earlier, We were all sitting on the floor when Gus leaned in and gently said "I love him. He's special to me." and I got all teary eyed, savoring the moment. Then Gus looked at me and said "Do you smell that?" So I sniffed. And gagged. He laughed and said "I burped."

Just before bed, Ben handed me a love poem he'd written about me.

It was a great day.

Gag me with a spoon, right?

Happy Valentines

gimme some shugga!


I have a date! With the eye surgeon. It's going to be March 29th. I've decided I'm not going to wait for the ABR to order his BAHA. Screw it (a little BAHA humor). I've asked upwards of 15 parents, 2 audiologist, 1 advocate from The Let Them Hear foundation, and I called Cochlea America themselves. They all agree that regardless of whether he is deaf as a post, or as a post behind a sound proof wall, he needs the Intenso. Once we screw it directly into his scull he may need a 'quieter' processor, but while it's on the Soft Band, having to transmit the vibrations through his skin and hair, it needs that extra umph.

The whole family went to a nice restaurant tonight for V-Day and it was kind of a miracle. Everything went eerily smoothly. Like the calm before a storm. I kept waiting for someone to dump their soup, pee themselves or lose a shoe. But thankfully we got Ben home in one piece.

This life is a far cry from what I had in mind. I wanted to finish my masters at Colorado State and land a job that would hole me up in some quite mountain cabin conducting research on the habits of the wildlife through the harsh winters. Quite an isolated life. So I would never have thought the existence I'm leading would satisfy me so much. But then I didn't think I'd find someone like Ben (a funny, smart, uncomplicated, confident, outdoorsy, dork!? Oh, and he's HOT!) or that snot nosed kids could be this cool and funny. The stay at home parent mantra is so tired but... yes, I could have done more worldly and exciting things but instead I create and shape life itself. The world will still be there tomorrow, and if it's not, I would rather have the experiences this life has brought me. Maybe just sprinkled with moments of my original plan. Like our simple home, you could compare it to a cabin. And our view! Our panoramic pleasure! It's got to be one of the best Texas has to offer. I do miss the chance to live in snow though. But then, I've never had to deal with busted frozen pipes or shovel my way through snow drifts taller than me.

I'll be 45 when the youngest graduates high school. Maybe then Ben and I will both move to Grand Tetons and hole up together. After all, haven't you seen that bow-flex guy? He's 45 and in the best shape of his life!

Monthly Update

We're still waiting on a date for the eye surgery, can't make the appointment for the sedated ABR without a date, can't know what kind of BAHA to order without the ABR, won't know for sure if our insurance really will cover it until we try to order it. Until then, we're all just hanging out.

At 71/2 months, Garrett is still plugging right along with all his development. He is starting to think about crawling and pulling himself up on stuff. He still loves cuddling but gets the biggest kick out of rough housing now. He's making lots of sounds and responds to his name but no "ma ma" yet. harrumph Lot's of drool but no teeth. I know they're in there, I've see them on his X-rays! I just want to hurry up and get that over with. Eating good. Sleeping good. Pooping good. What else could I ask for? money, real clothes, garbage disposal, goat fence, goats, playstation 3, storm shelter, organic buffalo ranch, a baby sitter, a fender, a hair cut, a bowflex, a maid, surround sound,

Merry Christmass

I hope everyone had as great of a Christmas as we did. My dressing (that's right. my dressing.) turned out fluffy and flavorful, we each met our extended family-time obligations, I loved the cold weather, and now on to the important stuff... Gus's fav present was Spike the Dinosaur, Bren's was the book Farting Fred, Garrett really liked a cereal box, Ben's was an aged but cherry pair of crocodile skin boots and mine was a set of special edition DVDs; The Labyrinth, The Never Ending Story, Dark Crystal and Willow.

We are having to conduct some more tests because Garrett's new audiologist thinks he might be deafer than deaf. He's supper deaf. But the ENT thinks she's nuts. It would be one in a million for Gare to have both conductive and sensorineural hearing loss cause by two totally different unrelated things. The Treacher Collins affects conductive hearing because it inhibits the development of the little bones in the ear that converts vibrations into sound, but sensorineural loss is cause by things like noise trauma and infection. I guess I do hold him pretty close to the woofers when we go to death metal concerts. So we're scheduled for more tests. He will need to be sedated so I'm trying to coincide it with his tear duct surgery. Two birds, one anesthesia. The results will determine what strength hearing aid he will need.

The surgery to rebuild his tear duct will be in Jan or Feb, probably last an hour or two, and if everything goes well, they should release us that day. There won't be anything freakishly sticking out of his eye like there was last time and it should finally put an end to his nasty, crusty, oozy, eye boogers. Hopefully this will be the last surgery for several more years. I'll have nothing to blog about! Huzzah!

Happy Thanksgiving!

This is how we do it.

What a boring surgery. I mean, there was hardly any danger involved at all. He went into the OR at 7:30, it took about 15 minutes to remove what was left of the device, then another 45 minutes was spent sewing him up real careful like so there will only be a nice neat little scar on each side of his jaw line. He woke up, looked around a bit, ate a little something then watched the TV while we rocked like it was a normal day. They released us that afternoon. The next 24 hours he wanted to comfort nurse, but as long as there was a boob in front of him he was perfectly content. He has even been sleeping better at night, but that might be because of the sweet, sweet drugs. The swelling is minimal (this picture was taken at the peak of his swelling), and he is pretty much back to normal, better even, because we/he doesn't have to worry about catching and bumping the protruding metal anymore, we won't have to doctor it all the time, dealing with the scabbing and oozing. I just imagine it's a lot more comfortable.

We're going to the pediatric opthomologist Monday to find out when the surgery to rebuild his tear duct will be. Probably sooner rather than later. Tuesday we're meeting with the audiologist because his loner BAHA is messing up. We may have to send it off for repair but hopefully it won't take but a week to get it back. I'm sure he won't mind the peace and quite for just a bit. We're also going to see Dr. G Tuesday for the final follow up to his jaw distraction. Then we'll be done and hopefully never look back. It's been a long two and a half months and I can't remember life before. I barely remember the baby in pictures from three months ago, so weak and thin. Now he is sentient, strong, normal. Thanks to all my dear friends, and of course my family, for the encouragement and kindness. It kept me sane and centered through this delightful excursion. What a great feeling to look back on what you've already climbed.

Fatty McButterpants

I told you he was fat. I don't think I ever made it clear that the reason he used to be so underweight was directly related to his breathing issues. We are supposed to be at rest while sleeping, expending minimal calories. This is when the body repairs and heals itself, secretes growth hormones. It's when the brain categorizes and organizes what we have learned that day. Before the Jaw Distraction Surgery, since he couldn't breath, he wasn't truly sleeping for more than a dozen seconds at a time. Since he wasn't sleeping, he was unable to do a decent job of just simply growing. Sleep was when he worked the hardest. It's another thing no one should take for granted. Now that he is actually able to grow, we are hitting the weight gain at full speed. It is very important for these kids to be monitored by a nutritionist, especially after a jaw distraction. I'm surprised by how many times this is overlooked. It may be as simple as just supplementing the milk.

His next appts are Tues and Wed, Nov 17th/18th to have what's left of the distractors removed, then one on the following Monday to consult with another pediatric opthomologist about his underdeveloped tear ducts. Until then the days are pretty swell, except for the water boarding sessions where we have to irrigate his eye and doctor his protruding Frankenstein screws. His development was evaluated again and everything was right were it should be, even his language. I'm sure impressed. With being deaf, week and grievously thin for the first 2 months of his life, and then going through that big ol' surgery, we expected him to be behind at least a little. And as you can see from the picture, he is making up for lost calories. So there just isn't much to report. Just normal baby stuff. How nice!

The skinny on swine flu

All the kids are over the 'flu' part, but it's not the flu part that's dangerous. You remember in the movie Labyrinth when Sarah fell down the oubliette and all those hands caught her and lowered her into the hole? Well, the lungs are lined with little 'hands' that help carry any foreign substance up and out of the lungs. H1N1 kills these hands which then fall to the bottom, not only congesting you but now there are no hands to help carry out the junk or make freakin awesome faces!. This causes the deadly pneumonia. So for the next couple of weeks we have to watch the kids closely to make sure they don't develop a persistent cough.

Other than that, we're having a pretty good time here at the McNally house. We got through the turning phase without any real discomfort, except when Dr. G had to crank on it. Garrett is relatively oblivious of all this strange stuff he has to go through. The big kids are so fun. They help out, they entertain us, they're exceptionally considerate. They're really like little adults... goofy, loud, demanding adults but that describes most of my family anyway.

Oh, you want to hear about what Bens been cooking? Fine.
Last night he roasted chicken with a very coarse dry rub and broccoli stuffing. He baked a butter nut squash in honey and some super special secret ingredient. So sweet and creamy.

We've got H1N1. Garrett is on Tamaflu. I'll make the jokes later.

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!

Fast and Furious

Three appointments on Monday, four on Tuesday and the jaw distraction on Wednesday. We will be making up those appointments we missed a couple weeks ago, plus some new ones. His eye is a little goopy and he has been coughing today so who knows if that might lead to putting off the surgery. One of the appointments is with the eye doctor, one is with an ENT and another is with a pediatrician, so I hope we'll be covered. We're on the path to breathin' easy!

Ben made an awesome update to the steak and potatoes classic. Aside from the everyday deliciousness of a thick cut rib eye, he served it over wilted spinach with a spoonful of caper, mushroom, dijon mustard and red wine sauce. He made the potatoes Au-Gratin style with soft creamy goat cheese. I could have just slurped that up with a straw.

Results are in

He does have severe obstructed sleep apnea and will get a jaw distraction in a few weeks. If you want to learn what it's like to have a jaw distraction, there is a great Blog about a plucky little girl that had the same procedure here. If you go read it scroll all the way down and start reading from the bottom up, in chronological order. This little girl has had a few more problems with Treacher Collins than Garrett. We don't expect him to have quite as many setbacks with the procedure, i.e. trech/breathing problems and his jaw doesn't need to grow quite as much so hopefully the turning phase won't last as long, the recovery will be shorter and the jaw might not grow 'down' causing the mouth to temporarily gape open. We will be talking to our surgeon early next week about all the details. Until then, he continues to do amazingly well. A happy, scrappy little thing that smiles the biggest when I'm pretending to lecture him about not exercising his neck muscles often enough.

Hello Hello can you hear me?

We still don't have the results of the sleep study and I had to cancel his appointments for last Wednesday and Thursday because the family was getting taken down, one by one, with a nasty stomach virus.

But some good news! The very clinic/ENT/Audiologist that is evaluating Garrett for the BAHA soft band, had an 'extra'. So we drove up to Dallas yesterday and picked it up. HE CAN HEAR! It's just a loner though so it fits seriously super superfluously goofy (say it out loud now) until we can get him a 'custom job' hat, like maybe a miniature ‘go to hell’ hat

He’d really look like a little old man then. But for right now we're just happy to have anything. Besides, the wonky red head band goes perfectly well with his goofy grin.

I'm sure glad someone on my BAHA Yahoo group suggested I ask the clinic about a loaner. Now my boy can hear for at least as long as they'll let us borrow it, until we work out all the mess of actually buying one. from. them.

And more potentially good news! ECI, God bless them!, seemed to be familiar with the IDEA Act. Now we just have to wait a few more weeks for their audiologist to evaluate Garrett and determine if the laws were in fact written to help him. Cus you know, maybe the Board of Education had someone else in mind. Do I sound bitter today even with all this good news? Sorry, I could probably use a bubble bath ... or even just a 3 minute shower.