Some News, in No Particular Order

It feels like it's been so long, I'm not even really sure where to begin. I suppose the easiest spot might be to start with 'Henry News.'

Since returning from CHOP and being home for a record FIFTEEN DAYS, Henry has been going to his pediatrician once a week. Dr. Ruas wants to make sure that he is gaining weight, along with checking on his overall health. The latter, I'm super pleased with. Aside from an occasional wretching or a few too many sneezes and coughs (which have yet, and WON'T, amount to anything), Henry is golden. The only thing we're keeping our eye on right now is his weight gain, which, since his visit last Friday, seems to be going down; we know this because a home nurse also comes during the week, so someone is weighing Henry at least every 2-3 days. And with each of those weighs, he seems to be going down 2-4 ounces. This is not good. But I have a feeling this can be figured out, so I'm not too worried. I'm MORE worried about the fact that he hasn't really pooped effectively and on his own for several days. Not to be gross, but i can sort of "help" him, but that doesn't really count. I'm afraid he's going to get backed up, cuz i'm watching the food go in the g-tube and not really come out. Hmmm...

Health concerns aside, Henry is ROCKIN' OUT in the giggle department. Like i've mentioned before, when Hank is feeling good, it's VERY apparent. He looks bright, alert and happy. And with that happiness comes much smiling. And he giggles with gentle tickling on his neck or sides. It is SO MUCH FUN to watch him during these times. I love to hear his gravely laugh.

Finally, in Henry news, we had an appointment in Rochester this past week with the craniofacial team in Rochester concerning Hank's cleft lip and palate. They looked him over and told us that the nature of his 'fly-away nubbin' is rather extreme and fixing it will be a challenge, but certainly not impossible. Right now, they want us to meet with other team members, such as a dentist, cardiologist and anesthesiologist, before we go forward with any definitive plans. A "by Christmas" timeframe was tossed out to me as a guide to when Henry might be ready for the actual lip repair after we spend these next few months preparing his nubbin by whatever pressure technique they decide upon. It will be so odd, but so welcome and good, to watch Hank's little face change, especially since we have gotten so used to it as is. I will tell you though, that i look forward to his little nubbin (which holds his two front top teeth, by the way) getting tucked away INSIDE his mouth, so that it doesn't dry up and peel and bleed all the time. Poor guy - i can't keep Vaseline on it enough. And he gets his hands all up in there almost all the time, especially when he's awake... KEEPING it lubed is TRICKY!

Sam and Thom are WONDERFUL with Henry. Sam is helping in any way that he can (I have plans for a separate blog on this topic) and Thom has mastered the gentle approach and touching, 'talking' to Henry in a way that sounds like "Hi Baby... Nice baby." So very cute.


Sam just completed his last day at the Children's Center yesterday. He's headed to a local summer day camp program that is - ahem - FREE, which is GREAT! Sam will surely miss his gang, as well as his teachers. I almost shed a tear when i picked him up and was bringing home a bunch of "Sam Stuff." His teachers put together a folder with a bunch of artwork, and 2 photo discs from up to 2 years ago. There were a bunch of photos i had never seen and they were AWESOME! (A separate blog of these photos forthcoming, as well).



And finally, the best for last: Ron and I (and, well, Hank too!) celebrated our 5th wedding anniversary today! I asked a coworker for her suggestions on what to do and she recommended the Esperanza Rose at the north end of Keuka Lake. She also mentioned that her best friend's hubby (and her good friend) is the Captain. The weather was PERFECT (quite reminiscent of our wedding day!), as was the lunch served and complimentary drinks on the Captain because it was our anniversary! It was SO NICE. I would recommend it to anyone.