Wednesday, December 15, 2010

Catchin' up with Photos

Pickin' n Buyin' the Tree
(still only $7.99 baby!)

Bitter Cold 2010 Sparkle

Hangin' the Ornaments

Tuesday, November 30, 2010

Happy 5th Birthday, Samson!


Only somewhat embarrassingly, I have no pics from Sam's birthday, which was on November 16th. But this doesn't bum me out too much because 1) we DID get a good pic of the cake that Sam and I decorated together (Ron baked it - gingerbread! - mmMMmm!), and 2) I think it's good to 'chill out' a little bit, sometimes, on the whole Documenting with Pictures for the Sake of Posting to a Website thing. All the pics I did take are fuzzy and uneventful.

Sam was actually 'sick' on his birthday. The day before, when i picked him up for school, his teacher Mr. Smith pointed out that Sam's eye had been getting red throughout the day and tearing quite a bit. When i looked at it, it surely looked like the beginnings of pink eye. We've all been dealing with colds and coughing and all that seasonal stuff, so it was no surprise. The next morning, it seemed iffy (still pink but not gooped) and i had told him the night before there was a chance he'd stay home on his birthday. So he did. And he was fine with that. Only the eye didn't progress (GOOD THING) and he was very much Super Active Boy despite me wanting him to get some rest. I had made 20 iced "ice cream cone" sugar cookies (which i really should have taken a pic of - i was proud of them - three colored 'scoops' with sprinkles!). He simply celebrated the next day. He came home all smiles with one of his own goodie bags we put together and a paper 'crown' with a big "5" on the top. SO PROUD!

My bugger is FIVE! It's one of those things: time's flying by, but at the same time, i feel like i've enjoyed and appreciated all five years. Not a day goes by where we take him for granted, even when he really !@#$%^& us off. He's our Sammy... and we love him more and more each day!

Monday, November 29, 2010

Hope & Sebastien Visit!!!

Well, this happened a whole month ago, so i apologize for just getting around to posting this. It's truly no SMALL thing, because Hope and Seb (Ron's sister and her husband) live on the West Coast and the last time we saw them was for their wedding last summer. If i could have my way, they'd move into the house that is vacant diagonally from us. But then again, Sam would probably bug the hell outta them every hour of every day and they'd be forced to move! ;-)
Hope and Seb just completed a 30 day long hiking adventure in Spain and France on a trail called Camino Frances. Hope's blog tracks their progress and journey. Most days, they hiked no less than 8-12 miles. EVERY DAY. I really admire them for not only committing to that sort of physical challenge, but also for their adventurous spirits. Everyone who knows them knows this sort of jaunt is not at all unique or unlike them; they've traveled the globe over, a few times, often plunking down to live for months/years at a time! So cool.

During their stay in cozy little Corning, they were without a car (unless borrowed from us), which didn't seem to bother them at all. They enjoyed a couple walks into town, and just plain relaxed and chilled here, reading or working on a jigsaw puzzle - yes, even with three crazy kiddos to keep them on their toes. Sam was completely enamored with Sebastien. I think Seb "had him at hello" when he agreed to play in the leaf piles out back. From that point on, Sam was tugging on Seb's hand repeatedly to do it again. Meanwhile, Thom crawled onto Hopey's lap on numerous occasion to hear some books or just plain snuggle for "huggies and kisses." Hank made his way around to both quite often as well.

On Halloween night, Hope and Seb manned the barracks at home (Ron had to work that night - poo!) with sleepy Hank while I took Sam and Thom around the neighborhood for trick-or-treating. I think they had a good ol' time, even if they only opened the door to about 16 total kids. Hope whipped together a crazy cat-lady costume while Seb was some sort of Fireman Zombie.
It's always SOO good to see them. The distance between us really bums me out a day or two right after they leave. But maybe by the time the boys are grown up, "they'll" have perfected the whole teletransportation thing and it will be much easier to see one another.

Monday, November 01, 2010

Happy Halloween!

This Halloween season, Samson was TOTALLY into it all. He knew exactly what it all meant, counting down the days from 5 days ago, wearing his costume (Wolverine, a hand me down) just about every day, and just getting VERY PUMPED. This was Thom's first Halloween trick or treating, however, and let's just say that it definitely helped to have the influence of an older HYPER brother! By the second door, he had the whole "Trick or Treat" and "Thank You" down pat. Of course, for Thom, it comes out "Tick TEE!" And his little fuzzy green Old Navy three-eyed monster costume was a hit! Another great find at the Sal Val. And it kept him warm! Luckily it was only in the 50s i believe, and clear. We literally went up the block, over, and back down, the kids little bags were FULL! It was just the right distance and time for Thom. At the end, he was struggling with the weight of his little bag and so we did "Teamwork, Teamwork!" (a little song he sang), Mommy holding one handle, Thom the other. Sam was SUPER good, leading the way with great manners and awesome enthusiasm. He was PSYCHED to finally be out, getting a bag full of treats! Unfortunately, Ron had to work, and Hope and Sebastien (Ron's sis and her hubby) are visiting for a few days and they stayed home and manned the door (only 15 kids!) and hung out with Hank, who just bounced and cooed. An awesome Halloween 2010 had by all!

Saturday, October 30, 2010

Henry Update

Henry had three appointments in Rochester last Tuesday. One with ENT (ear, nose and throat), one with the Speech Pathology Dept at Strong Hospital and the last with Dr. Girotto, his cleft doctor.

The first appointment with ENT was to discuss placing tubes in Hank's ears immediately prior to his palate repair surgery in Feb/March (date unconfirmed, but that's the ballpark). This is a customary procedure and from what i've read, oftentimes, tubes have already been placed in cleft kids ears by now due to complications with ear infections and fluid buildup. Normal cleft children can have trouble with ear infections due to the physiology of the ear canal of babies - the canal is not fully developed and often runs horizontal instead of slightly angled as in adulthood. Surprisingly, and to my great relief, Henry has managed to keep very clear and healthy ear canals this whole time, which means little concern for hearing damage. WOO HOO! This consult was rather short and uneventful. The ENT surgeon will simply slip in between anesthesia and Dr. Girotto on surgery day and place the tubes in his ears. They will naturally fall out between 12-18 mos.

The second appointment was the biggest of the three. We met with the Speech Pathology dept at Strong to give Hank a "Swallow Test." This test sits Henry in a seat with an x-ray that runs along the side. He is given various foods with barium and his swallowing reflex is observed. The point is to see if Henry has the potential and danger of aspirating what he eats due to the cleft in his palate. Non-cleft challenged kids who have developmental delays and eating complications can also aspirate. Aspirating means that he could take his food into his lungs, which can be very dangerous, leading to pneumonia and sickness. The good news is that Henry DOES NOT aspirate. The "bad" news, to no one's surprise, is that he does not swallow easily or correctly due to his never eating by mouth. He does not know how to do it. While this is an instinct at birth for babies while nursing, if it is taken away early, the instinct can be lost. But not forever! And that is what we're working on. The final conclusion is that it is SAFE for us to begin 'tastes' with Henry. That means we literally dip the spoon into a jar of applesauce or into thickened formula (with rice cereal) and simply get his mouth and tongue used to something new. The act of putting the spoon into his mouth, the act of him tasting a food, EVERYTHING about eating in general. We are also going to work on getting him used to having (slightly thickened) liquid come into his mouth via cup. The concensus is to just bypass the bottle altogether due to his age and his aversion to it in the first place. I am in agreement with all of this and eager to work with my little guy to hopefully eat normally someday. The ULTIMATE GOAL, someday, sometime, is to get rid of the G-Tube. But this is not a race, by any means.

The final appointment was with Dr. Girotto to basically check in with him on my appointments' outcomes and to tentatively schedule and plan for Hank's palate repair. Originally Dr. G thought late January with a follow-up refined surgery for his lips a month or two later. Now he is thinking of a later date, Feb or March, for BOTH at the same time. That is, given anesthesia's approval that Henry can be under for that long (a total of about 5 hrs). If not, two separate surgeries.

OTHERWISE, Henry is doing quite well. He's always a touch congested, it seems, but nothing alarming or concerning. His PT and Speech therapies in the home, through Early Intervention, continue to go smoothly with little strides and advancements. Each therapy comes two times a week (i've heard that some children this age can only 'handle' once a week, but Hank is easy breezy). He is getting stronger in his Bumbo seat, which means he's only getting closer to sitting up on his own or possibly pushing up on his belly. When he has 'belly time' now, he does not use his arms at all, only his neck, and that is for only a little while. Henry occasionally rolls over from his back to his side, or vice-versa... those little legs of his are always kickin and moving. He creates quite the racket while chillin' in his bouncy seat - downright LOUD! We love it.

I've reminisced often lately of Henry's first four months of life, in and out of hospitals. How seemingly fragile he was, and so easily weakened and compromised. Flatlines and active talk of pacemakers. And now, i look at him, and think how much stronger he's gotten. He's gaining weight slowly (at slightly 15 lbs), but we recently upped the amount of food he gets throughout his day and I'm eager to see the results of this change.

.... And the smiling and laughing!!! All the time with smiles and his gravely, breathy giggles. There is truly nothing better than watching your kids giggle with abandon, not a care in the world, only being happy and enjoying it. Laugh it up, Hank... you've got the world in front of you for the taking. I can't wait to see all that you do. xoxo

Friday, October 29, 2010


Tongue out, concentrating intensely!

On October 22, I participated in Wegmans contribution to CANstruction, a way of helping the local food bank, as well as having a little friendly competition. Ten of us, myself included, worked from 8am til about 3pm contructing a Wegmans truck and a Wegmans storefront, surrounded by a sunset. We used a lot of canned beans, corn and a TON of Jell-O boxes (the competition is not STRICTLY canned goods - the idea is to primarily provide food for the needy). It was a good time! I hope to be a part of CANstructions in years to come.


On October 16, all of T5, as well as our friends Natalie and Casey and two friends from the Unitarian Universalist church, participated in this year's "Walk a Peaceful Mile," an awareness walk/fundraiser to benefit Rape Crisis of the Southern Tier. I raised a bit of funds to help them out and got a cool long sleeve shirt that Sam adorned quickly due to the early morning chill. The route was a loop up and down Market Street and Denison Parkway. The morning was brisk but really refreshing and there was a nice turnout. Afterward, we all checked out the brand spanking new bakery/coffee shop at the Wegmans end of Market Street, the name of which escapes me and i can't find it online! I like including the boys and our family in such events; I think it's good for them to become aware of different issues as well as being a part of our community.