Saturday, August 14, 2010

Cleft Family Picnic

Over a month ago, i received an invitation in the mail to attend the Golisano's Children's Hospital Pediatric Cleft and Craniofacial Center Cleft Lip and Palate Family Picnic on Friday evening. It's a way for families to get together and share stories and happiness about their own and/or their child's lip/palate repair. It's also a sneaky, legal way to get by HIPAA privacy laws, and i love how they've done it.

I called my friend Kathy on Wednesday and asked if she could accompany me and given the short notice, i lucked out! We packed ourselves and Hank in the car and was on the road by 4:45. We arrived at Camp Eastman on BEAUTIFUL Lake Ontario around 6:30 and was immediately greeted by a ton of amazing, friendly individuals and their children who once had a bilateral cleft lip (and some, palate) like Henry. The picnic food was GREAT too: pulled pork sandwich, fresh fruit and pasta salad.

I met Julie, a woman who swears she is "MUCH OLDER" than me (I think i just looked young to her!) who looked like Henry at birth. She shared an amazing story of her surgery, the fact that her brother was born with a bilateral cleft, as well, on her surgery day (!), and introduced me to her very friendly husband and daughter. She was a blast to chat with and i just felt like i had known her for a long time. I love when you get that vibe from someone!

I met Kelly and her little guy Tanner and his sister who i think she said they adopted from Guam (and another sister adopted from Cambodia). They picked him up at 19 mos old with his teeth already emerged from his little 'nubbin.' I asked about feeding issues with him and Dad laughed, stating that he has NO problems eating them out of house and home. All the families i talked with concerning feeding issues said they've had no problem and their kids just picked it up instinctually. That was a relief, as well as confirming my gut thoughts on this topic.

I met Kathy and her son Tyler. He has some hearing issues as a result of his cleft, but he was a darling little guy, 7 yrs old, and ansy to leave after a full day of playing and interacting with other children.

I think this picnic is an AMAZING, wonderful opportunity for families to bond with each other and see how everyone's respective child is developing and healing. Some kids I saw a noticeable scar and others I saw close to nothing. It's amazing what they can do with such extreme facial deformities. I'm thrilled to have chosen this Team to go forward with Henry. I look forward to his surgery and bringing him to future picnics as a living, walking testamonial to "show off" as well. :-)

Thursday, August 12, 2010

Happy 2nd Birthday, Thomas!

Cupcakes for daycare

Happy Birthday, you little goofball cutie pie! It's been nothing but a year of giggling and learning and playing and catching up, and now here you are, knowing 20+ letters of the alphabet at a glance, saying 15-20 words and phrases, and pulling your pants down no matter where you are. And did we mention the smiling and giggling!? You are so happy. And i wouldn't want it any other way.

We love you, Bugs... Stay sweet, get big, love life!

Tuesday, August 10, 2010

Post # 365 - Summer Vacay!

Smile Everyone! - well, not you, Sam.

This post is a great way to mark the occasion, with the summary of our annual Family Summer Vacation. Once again, it was spent with the Cortes gang from Maine, and also with Dad, but this year, with the addition of Ron's mom Shirley and Kathie's mom Marge and her hubs Dick. We stayed in a roomy home (not quite a 'cottage' and certainly not a 'camp,' but we called it that anyway) on the northeast end of Lake Honeoye.

The boys en route to camp!

I neglected to get pictures of the lake our first day there, and that is probably due to my disappointment: it was a big bowl of pea soup! Thick and slimy with swirly algae. The slide i was so looking foward to zipping down, on our 'beach,' was stained green and surrounded by algae and weeds. The lake did NOT look like this way in May when i took the tour with Dad. *BUT* luckily, the next day, the temps dipped a little and the lake cleared up quite a bit and remained that way the rest of the week! It always had a hint of green to it, but definitely swimmable when jumping off our rented pontoon boat in the middle of the lake. My friend Natalie Googled the lake and the algae issue and found some interesting information.

Marge and Dick came down from Maine on Monday with TWENTY hard-shell lobsters in tow! So we were able to have a lobster feast, including traditional corn and potato salad (a spin on the salt potatoes). It was delicious! We had quite a few leftover, so i volunteered to gut them for the meat and Marge and Kath made a big pot of lobster chowder that we all enjoyed for several days. YUM!!!

Oh Pinchy, you are so delicious.

We had a hot tub onsite as well!!! It was really nice, especially at night. However, it slowly 'died' on us throughout our stay, luckily to the knowledge of the owner, who visited 1/2 way through to add chemicals and tell us to never buy a hot tub if someone tried to sell us one. I think the key is to not have a hot tub available on a rental property: she said the people two rentals before us added pool shock to it and its never been right since. For us, the jets died, the water clouded up and we lost the filter cover. I think it's safe to say that Tanner and Sam enjoyed it the most, goggles and all!

There's room for at least 2 more!

Speaking of which - Samson was quite enamored with Tanner, from the minute he stepped into the house Sunday night; he was Tanner's little shadow. For the most part, they got along great and i have to hand it to Tanner for being so cool with a little kid 5 yrs younger on his tail all the time. Tia took quite a liking to Thom and Thom loved flirting and laughing with everyone!

The Cortes' fished quite a bit off the pontoon boat tied to our dock, unfortunately, with no significant catches. One day, the adults (minus dad, myself and Shirley) took a day trip to visit some local wineries. On Wednesday, three of my closest girlfriends from Weggie's came, with a ton of groceries (!!!), and we enjoyed some boat time, followed by an awesome cook-out prepared by Ron and gang while we were relaxing. That was SO NICE! Also, for most of the week, a jigsaw puzzle of some sort was laid out on a community table for anyone to work on. We got through one but had to box up the other in the 11th hour. Ho hum!

It was great being able to have our summer together as an entire family! Henry even went for a boat ride on a couple occasions (shh... we let him get outta wearing a life preserver). On Monday and Wednesday of the week, however, I did have two different appointments in Rochester, the first with an eye doctor concerning his cloudy eye, and the other with one of Strong's cardiologist, Dr. Miga, part of the team that would have taken care of Henry had we chosen Strong vs. CHOP when Henry was born. To quickly summarize: Dr. Siebold has determined Henry has congenital glaucoma in his right eye and prescribed some oral (G-tube) meds to help reduce the increasing pressure, which will then reduce/eliminate the cloudiness. It's working! - noticeable improvements on both fronts; he's no longer as 'buggy' looking. Surgery is most likely imminent, and I'm guessing that will be scheduled within the next week or so. He will need to be anesthetized for that, but it is a quick surgery and they can do so lightly. On the cardiac consult front, Dr. Miga wanted to get some images of Henry's heart to get to know him on this end, from his standpoint, before the cleft surgery is scheduled. That too is coming up, most likely the first of September. It's been a while coming. I predict a more detailed blog on these topics in the future.

Rock on, Samson!

Our week together rocked. I never feel it's long enough and i always get the blues the day or two after we depart. I was thrilled with the comfortable balance of 'being Mom' and getting some time to myself; I wasn't sure how that was going to be with now THREE kids running amok (well, two literally running). I believe vacations will only get easier; it was already awesome knowing that Sam was, for the most part, totally cool hanging with Tanner and not needing to be monitored for everything (like Thom). I think i said "Where's Thom!?!?" a total of 5 or so times. Luckily, he was never very far. :-)

This would make a great Young Me Now Me photo in 10+ years!

For more pic goodness, please check out my album on Facebook, as well as Dad's album, too! He's got a TON of pics that are really awesome and from a different perspective!

Next year, we'll be migrating back north to Maine. Kathie [and Dick] have the job of finding us something local to them so that John can commute between camp and his landscaping job. My simple prerequisite: crystal clear waters that i can jump into, especially for my 6am wake-me-up!