Wednesday, February 23, 2011

So Long Wispy, Baby Fine Hair!

I tried once to take Thom to get his hair cut, about three months ago. He wanted NO PART of it. Totally freaked just LOOKING at the clippers, not even turned on. So we bagged that and i thought "eh... s'just hair."

But it got longer, and wispier, and static-ier, and more of a pain to wash in the tub. So the other day, i gave Sam a haircut (he loves when i do it) and both of us kept saying to Thom "Hey Tommy... want your hair cut just like Sammy's?" And he'd say "YEAH!" followed quickly by a "No! Tommy keep hair on HEAD!" and cover himself like he was ducking for a bomb.

Yeah - the HAIRCUTTING BOMB that happened last night!!

I set him up with snacks and gave Sam the camera (all these pics are Sam's skills!) and plugged in the clippers and he immediately wigged out! Then i remembered, quickly unplugged them and said to Sam, "well... i guess i could cut all this with just scissors." I combed up the first chunk and CUT IT! No turning back now!!!

For the most part, he didn't give a hoot and cooperated pretty well. It's when i got to his neck and ear area that he started squirming and putting his hands up and saying, "Enough Mommy... ENOUGH!" And i would quickly say "I'm almost done Tommy... OOH TOMMY - - what songs can we sing? Wanna sing Rudolph?" And he'd forget and say "yeah." and I'd get a few more snips in. Between the songs, the replenished snacks (covered in hair, but whatdyagonnado?) and Sam's words of encouragement between clicks, we got 'er done!

For a first hair cut done by MOMMY, i'd say i did pretty good. There are a couple 'chunky' lookin' spots, but i just lick my hand and smooth it over with the other hair. :-D

Tuesday, February 22, 2011

Some Hank Updates

Recently, I've been getting a lot of questions about Henry and where he's at with his heart and lips/palate. Thank you, to everyone, for caring and asking. So let's chat, shall we?

First of all, Henry is doing excellent, overall. His heart and oxygen levels are sounding good and holding steady; it seems the pulmonary artery band that was placed on his heart in the second week of his life is doing its job quite well!

He continues to show improvements in strength and development. They are small steps, but noticeable, and his therapists are encouraged and pleased, as are we. Henry sits up quite nicely if held only at the hips, but has to be guarded for tipping over or throwing himself backward. He is starting to place weight, ever so slightly, on his legs, when you hold him from his armpits. He is reaching for toys quicker and holding them firmer and longer; I've even noticed him starting to switch hands with the toy, which is a great sign. Henry can roll from side to side and every now and then makes it over to his belly, which he doesn't so much like. From laying in a 45 degree angle on his back, he can lift himself up with his stomach mucles to sitting upright (with support). He also tolerates the Exersaucer for 20-30 minutes, even playing with the toys attached to it, all while singing or laughing to himself. And drooling. A lot. Still no signs of teeth though.

Hey there, Smilin' Guy! xo

He recognizes and turns to familiar voices and always shows joy and laughs out loud when family members come to him to say hi or tickle him, ESPECIALLY Samson. Sam is very easily Hank's hero. He is experimenting with his voice. His favorite sound to make is any and all variations of "mama." MAH-maaaa; ma-ma-ma-ma; MAHHHH-ma. And just lately, he's experimenting with the sound level. He quite often gets to "yelling" at us across the room or even in my arms. Even Thom will say "Henry yelling at us!" It's cute. Hank is very much the love-bug of our church as well.

His therapists have evaluated him, all factors combined, at about a 4 1/2 to 5 month age level. This is helpful because I've easily already forgotten where Sam and Thom were at with things. At this age, other children would certainly be crawling, pulling up on furniture or maybe even walking. As i explained to Shirley, with this genetic disorder (labeled "4q deletion"), we'll take what we get at Henry's pace. Many 4 "q-tees" don't sit up until past 2 or walk until 5. I do not spend a huge amount of time comparing Henry's development levels to those of 'normal children.' Sure, to a certain degree, for a guideline, but never with expectations or disappointments. Ron and i made a heartfelt agreement, late one night in the Philly Ronald McDonald House dining area, in those first few days of his life, that our only desire, to bring true happiness to us, was for Henry to smile and recognize us and to know and feel that he was loved. He has far exceeded that, and so everything else is a bonus!

We just went to Rochester last week to meet with his craniofacial surgeon, Dr. Girotto, whom i LOVE. He's professional, confident and has a wonderful friendly demeanor. I'd like to sit at a barbeque with him over a couple ice cold brews! Dr. G. was more than pleased with the result of Henry's first lip surgery, called a lip adhesion. He said the degree in which the maxilla was pushed back into his face far exceeded his expectations and i was THRILLED to hear his enthusiasm about this. He never had to break anything to achieve this and it will make Henry's palate and refined 2nd lip surgery easier. Dr. G. explained what he'll do and it sounds like a straight forward surgery. He told me that Henry's "whistling" look will be smoothed out and his lips will meet and appear as though nothing was ever wrong. I can't picture it. But then again, i could never picture it before his first surgery. In a year's time (or less?), we'll have to look at pictures to remember it. Just simply amazing.

With Henry's palate repaired, there will be no further surgery expected, craniofacially, for several years, until he's around the age of 10, when they'll take some hip bones to close in the gaps in his upper jaw. I'm not even thinking about that time.

Beyond the lip/palate repair, which is anticipated for sometime this April, there is talk from his cardiologist here in town, Dr. Finnerty, of scheduling an MRI down in Philly, to look extensively at his heart. To *SEE* how the PA band is doing and the rest of things as well. I cannot even predict what will come of that trip, so I'm not even going to toss it out. I do not know when that will be planned. May? I'd like the weather to not be a factor, ideally.

So there's our littlest member of T5. I'll have to take some video of him soon, doin' his THANG and bringing joy to our lives.

Saturday, February 12, 2011

Keller Williams!

Keller watching Keller.

Months ago, maybe even as far back as November, my college buddy Katie, who lives outside Philly, asked me if i was interested in coming down, and bringing Sam with me, to see Keller Williams in concert, performing a special kids' show! After exclaiming YES!, i forgot all about it until she reminded me a few weeks ago. With all the crazy snow Philly and the east have been getting this winter, i worried we could get dumped again the weekend we were supposed to head down, but then thought "eh... go for it." So i bought the tickets online and the weekend's weather was GREAT!

Coupla PB&N (Nutella!) Sammiches before headin' out!

I picked up Sam after school on Friday and within an hour, we were on the road. I set him up with a goodie basket in the backseat (we took Johnny New Car (read: '93 Toyota)). It was full of snacks, NEW Crayolas (*drool*), and the ever popular new addition to our family: the iPod Touch, loaded with folder just for Sam, full of games. He was the perfect travelin' buddy! We got to Katie's around 8:30, all the kids mucked it up in their PJs for about an hour, and soon everyone was in bed. Ahhhhhhhhhhh.....

The next day, we headed out around 12:30 and headed for South Street and the TLA (Theatre of Living Arts) where Keller was performing. We had time to get some pretzels and take in some sights before the doors opened. Soon, we were inside and within minutes, the coolest little drum circle was formed. Well, it actually wasn't so little; a company named Everybody Drum is touring with Keller's kids' shows and is quite a group. Djembes, bongos, and all sorts of percussion instruments were set out for the kids to see, try and enjoy! I was loving it as well; I'm a total sucker for a drum circle. In fact, i flattened out my wedding band! Shoulda taken a picture of it; nothing our buddy Don, who designed my ring, can't fix. Whatta good time!

Go for it, Sam! You Rock!

Soon... lights dim... AND HERE'S KELLER! Singing catchy and awesome sounding kids' songs that quite frankly, rock for any age! Keller is affectionately known as The One Man Jam Band. This dude can play ANYTHING, or at least play an instrument that can SOUND like any other instrument. He got his guitar to sound like a flute, piano and harmonica! And of course he records stuff and loops it, and within minutes (seconds?), he's got a cool little jam goin' that he can now sing to. I could honestly watch him for HOURS. I fell in love with Keller Williams fifteen years ago at a little music festival in Sherman, NY called OUR Fest. I think he might have just been starting out around that time. He came out on stage and made his mouth sound EXACTLY like a trumpet, and i was in love and in awe. *swoon*

Katie's kids Keller (yes!, named after the man of the hour), Maya and Charlie and my Sam each enjoyed the show in their own little way. "Little Keller's" eyes were glued to Big Keller the entire time. Sam didn't seem to give a hoot about Keller on stage but was ENTHRALLED with the myriad of balloons that fell from the ceiling and were floating about. Maya and Charlie just chilled with their Mom and watched everything going on.

Left: Keller, leading a "Trombone Train" at the end of the show. Right: signing stuff for Katie.

Thank you again, Katie, for thinking of me (and Sam) and inviting us to spend 36 hours (hehe) with you. Good times... good times!

The Crew: Charlie, Katie, Keller, Maya, me and Sam

Tuesday, February 08, 2011

A Scarf for the Special Olympics

I got wind of The 2011 Scarf Project from a friend on Facebook. I was inspired to dig out, from the depths of my cobwebby mind, my crocheting skills and make a scarf, DANGIT! My mom taught me how to do it eons ago and the last time i crocheted anything was a gigantic blanket circa 1994. Eek!

Well, it turns out, it's just like riding a bike (with some help from a coupla YouTube videos!) and in no time, i single-crocheted a scarf in the designated colors, took a pic of my mug all wrapped up in it, and mailed 'er off to the scarf collecting crew in Virginia. I picked VA because they had a later deadline, there wasn't a NY one, and well - shoot - it's my home state! I'm glad to have been a small part of such a wonderful organized event, 40+ yrs strong! Good luck, athletes. Stay warm!

Saturday, February 05, 2011

Lasagna Fest!

Karen, a member of our church, organized a Lasagna Fest Night! The idea was to bake several lasagnas to eat that night, as well as preparing and freezing a stash for future use in the case of members and friends needing some help (birth of a child, family illness, etc.). I thought it was a great idea and the whole evening was a smashing success!

Ron headed down to the church in a mini blizzard around 3pm to start cooking, and the rest of us (myself and the boys included) arrived at 5, ready with empty bellies and smiles on our faces. Sam and Thom were in GREAT moods and well-behaved, which made for a stress-free and super fun night on our part. The lot of us filled up four tables! I think we chowed through five full lasagnas. There was also yummy bread and great big green salads.

After supper, the tables were cleared and the kids went to one of the other rooms to decorate Valentine cupcakes! Sam was in heaven. Thom ran between that room and the main room, where it became GAME NIGHT! As we played and laughed, we watched tennis ball-sized snowflakes fall outside the windows! Needless to say, within minutes, Sam was outside with a couple other boys, playing and making snowballs.

It's worth stating as often as possible how happy Ron and i are to have joined this Fellowship. It's bringing a new happiness and a new group of really nice friends into our world. Really nice.

Thursday, February 03, 2011

Henry Turns ONE!!!!

Excellent work on the card, Sam! Henry thanks you!

Well you did it, Hank. You made one full orbit around the sun on January 28th!!! An' what a year it's been! Congratulations! We love you, sweetie. Daddy, Mommy, Sammy, Nanny, Pop-Pop and even crotchety ol' Thomas.