Some Changes

You know when you're telling a story and you think it's so funny and relevant and when you're done you're the only one laughing, standing there amid a sea of cocked heads and blank stares, and you really wish you could erase the last 5 minuets? Well, with writing, you can do just that. I found myself having to refrain from posting all the little mundane pictures and silly stuff the kids are doing on a day to day basis that would really bog down this blog. So I'm keeping a separate one for our family and getting back to the original purpose of A lot of F's, Garrett's health and development. It will stay nice and easy to access without boring everyone, only posting when there is actually something to update. I'll be whittling down or removing some stuff so you may notice changes. Sorry about going off topic. I guess you just had to be there.

Dinosaur World

Last Thursday the whole family got to go with Gus' school to Dinosaur World! How perfect for our little herd of Dorkosauruses? Needless to say each of us enjoyed it a little too much. Gus got to hang out with his best buddies while gawking at giant skeletons.



We all dug for fossils and could even keep up to three.







We hiked down a wooded trail where at any turn we could come face to face with terrible lizards bigger than the bus they rode in on.





And finally we wound our way back to the themed playground with dinosaurs of a more manageable size.




The only way I could get them in the same frame was to set up the shot and be patient. I know what a wildlife photographer feels like. Gus is nothing but go go go, while Brenna likes to mix in a little make-believe coffee shop.



Next stop was right up the road at The Dinosaur Vally State Park. This is where, back in the 1940's, scientists found excellently preserved fossilized foot prints of sauropods, like a brachiosaurus, seemingly being chased by theropods, like the T-Rex. The evidence inspired a pretty revolutionary hypothesis that these cold blooded predators were very fast and hunted in packs. To get to these ancient tracks one has to cross a river. We had no idea we were going to be swimming. So in we go, fully clothed.











Nobody had a better time than Garrett. This was his first opportunity to be in cold, rushing river water and play in gritty, sticky mud and he clearly fits right in with this family.





How incredible to think he is placing his tiny hand in an impression left by a baby 'long neck', an adorable Littlefoot? In the exact same place, but separated by one hundred and thirteen million years.

It was a really fun trip, at least for this family of Dorkosauruses.

Let's Party

I start each day off with such lofty aspirations, adults plans, big time stuff. Today I'm going to tackle the 'paper box', a 75 gallon plastic tub over-flowing with junk mail to sort, forms to fill out, and *gasp* some of Garrett's straggling medical bills (it's ok, they're not the real ones printed on yellow paper, just the ones they send out as a courtesy, to RSVP the yellow ones). But Gus had planed a cereal party. He 'decorated' his castle tent with blankets, books, stuffed animals, party hats and a 'table' so we would have a place to set our cups of cereal amid hazardous waves of scrunched up blankets. We sang songs and contorted our faces, stretching our tongues, trying to pluck stuck cheerios off of our nose.







Ben and Brenna were in town grocery shopping. Garrett was napping. It's been a reprehensibly long spell since I spent some one on one time with my oldest. So the paper box can wait. and wait and wait.

Garrett has grown 4 gnarly chompers, every boobs worst nightmare. The rest of him is developing just as quickly. He's days away from walking. He hardly seems like a baby, with his scientific experiments and sophisticated humor. No silly poop jokes for him. And he has such a know-it-all grin.

Check out that mullet!

We spend a lot of time on the front porch enjoying the mid-afternoons, when the sun is high and hot. But in the shade of our home, on our breezy little hill, it feels like paradise.





Best baby sitter ever.

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.