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.
