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.
~ 12:30 AM
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.
Thursday, October 28, 2010
Wednesday, October 13, 2010
S'been a long time comin', but I finally found my way, with Sam, Thom, and Nanny Shirley, to Iron Kettle Farm in Candor, NY, where Ron grew up. Man, was this place HOPPIN'! Well, it was a beautiful perfect autumn Saturday and everyone came out to enjoy the day. Iron Kettle Farm is full of everything you'd imagine a Fall Festival would have. You gotcher Pumpkin Slingshot, Corn Maze, Hay Ride, Kid-Friendly Spook Barn and MORE. And of course the ambience is full of pumpkins, corn stalks and displays you stick your head in! I love those! We had such a good time. Ron stayed back at his mom's house, manning an outdoor fire and letting Hank catch some zzzs.
Left: A big wooden tractor. Right: Just a glimpse of a HUGE pumpkin field.
~ 10:31 PM
Sam's school, Frederick Carder Elementary, won a contest, hosted by the Pepsi Refresh Project, for $50K, to put toward building a new gigantic playground! A few Wegmans coworkers and I went up to the work site on Friday, Oct. 8 to help out, as well as bringing all the food for lunch. It was a lot of fun dragging out my big guns (who squinted fiercely at the sight of a cordless drill!) to work on putting up part of the structure. The day was absolutely GORGEOUS, and especially needed after three days of rain, causing delay, and worse, a ton of MUD. Fun fun!
Left: Kids help out by soaping up the screws
The Wegmans Crew: Mary Ellen, Deb, Christa, myself and my boss, Chris
~ 8:58 PM
Saturday, October 02, 2010
Today we gathered some friends for an autumn picnic at Denison Park, one of Sam's most favorite places in the WHOLE UNIVERSE! Ron and i provided the burgers and dogs, some doctored up salsa and chips, some grilled Pop-Pop garden corn(!), and some juice boxes. Our guests brought homemade brownies, Smartfood popcorn (which Thom could NOT get enough of), and fresh fruit, among other goodies. The Gang consisted of T5, The Chatlanis (minus Shyam, who was golfing at the Friends of Jeremy tournament), Heather (minus Jeff, who was also golfing), The Heckle gals (Dad golfing, Mom out of town on business) and The Marino family. There were a total of nine kids ranging from 8 mos. to 5 yrs. The kids ran around the playground like crazy and then finally stopped to 'refuel.' It was such a beautiful day, and we all really enjoyed ourselves. It's taken all summer to bring us all together, but it finally happened and it was a great time! Thank you, everyone!
To see more photos from the day, please click here.
Peek a Boo, I see You, Tommy Boy!
~ 11:59 PM
We had a yard sale on Saturday 9/25. Ron and i guessed we raked in approximately $150, which may not seem like TOO much, but it is when you consider that we did not have too many "big ticket" items; most things were marked for $0.25 to a $1. We even featured a FREE table, which Ron and i got to laughing... it stayed pretty FULL most of the day. But some folks took our crappy FREE bikes and some electronic equipment that was in varying questionable condition. I think we should have a yard sale AT LEAST once a year. I was also proud that nothing came back in the house, as i wished. It all got loaded right into the van and taken to the Sal Val. YES!
Stuff for the pickins.
Left: The FREE table ~ ~ ~ Right: No, the pumpkins were not for sale.
~ 11:58 PM