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.

No sleep for the sleepy

Looks comfy huh? Every inch of his face was covered in 'electrodes' and he had a total of four things up his nose. "Sos now you want he should sleep? OK Boss." I think he got about 3 hours but apparently that was enough to get the information they needed. We won't know any results until our appointments on Wednesday and Thursday. He will also be getting a CT scan so we can know exactly how things are formed in that little head of his, an eye doctor will be ruling out any eye problems and another ENT that specializes in air ways will be checking out the size of his... well, air ways.

I found some laws that The Board of Education wrote to protect children with disabilities called the IDEA Act. One of these laws allowes Early Childhood Intervention (ECI) to budget for helping families with "assistive technology devices" like a BAHA. This just might help us, so keep your fingers crossed. They came out to determine his needs and did a little evaluation on him. Of course because of his deafness he qualified but surprisingly they found he tested on a cognitive and social level as a 4 month old, in spite of not hearing. Ben and I said early on that this kid was going to be our little genius. No pressure or anything.

fights, faces and food

Garrett will be underweight for a while, at least for several more months, but he is gaining an appropriate amount now. My bet is, even once we get him out of 'Tha DANE-ger Zone' he will still always be thin like Gus. But better grossly malnourished than chubby! Am I right Hollywood??

As far as his hearing, he is profoundly deaf but with a hearing aid he will have absolutely no handicaps, hear normal, learn normal, talk normal, etc... Now actually getting the hearing aid is going to be a fearsome, ferocious fight. There is SO much information, that I'm sure most of you won't want to muddle through, that I'm thinking it would be better to create a whole other blog for the nitty gritties. If you want to know all those sordid details, here is the link The BAHA Battles

The only thing I'm a little worried about is his breathing. His small jaw keeps his tongue crowded into the back of his throat and, in general, his air ways are just a little too small. We are going to his Pulmonologist this Thursday for a sleep study where they watch him over night to determine what, if anything, needs to be done. He may need jaw surgery, a jaw distraction or maybe a tracheostomy. Or all three. Yay.

Ben bought a HEB mesquite honey ham because we've noticed that almost everything HEB produces is exceptionally good even though it's considered 'off brand'. He fixed it the traditional way, with pineapples of course, and holy hotdog was it good! Juicy, tender, lots of flavor. He also tried a new sweet potato dish with carrots.... meh... I prefer mine with marshmallows like any respectable red blooded American should.