Gone... For Now... But Not Forgotten!

I'll be honest - there's been a lot going on in T5's lives', but apparently not "blog-worthy." At least not for THIS one....

I've started a new blog documenting my switch over from formula to real food for Henry. Blending it. That whole scene. Which has been amazing. Check it out (bookmark it even!) by clicking on the pic.

As for T5 and THIS blog - - well, summer's coming. Which means we're outside more. Sam is starting soccer today. I'll probably take a few pics of that. Thom's excited for our "picnic dinners" that accompany such practices and games.

Stay tuned. I hope to have more stories and pics forthcoming!

Our Dear "Nanny"

Ron's mom Shirley passed away unexpectedly two Sundays ago on Feb 24. The boys called her Nanny and she even has a room in our house named after her (the bedroom she would sleep in). "Your shoes are in Nanny's room." ~ "It's on Nanny's bed." ~ ~ [I have a hard time these past few days figuring out if we should keep the name...]

Shirley was many things to our family....

She was a MOST dependable babysitter of the boys and never said no unless she truly could not come over and help out. In fact, we'd joke that she was 'earning her keep' by doing the dishes when Ron and i would go out, and I told her that i never GOT that joke, because SHE was doing US a favor, but i guess that's what made it funny. Shirley often mentioned an event that was coming to town, and then it was my job to buy tickets online to said event (for which she always wrote me a check) and then she would take either Sam or Thom. In as recent as the beginning of February, she ventured out with BOTH boys, solo, for the first time, to Broome County Arena in Binghamton to see Disney on Ice! The most noteworthy part of that excursion was Shirley's extreme happiness with Sam's behavior and helpfulness. She just went on and on about how mature he was and a joy to have, especially helping with Thom. It feels good now to know that she left on such pleased and proud terms of the oldest of our children; there were many times the two of them butted heads, but this was not one of those times...

Shirley reveled in using her teaching skills with all the boys, but especially Sam... and more recently Thom, prepping for Kindergarten. Making worksheets with the dotted lines to practice printing the alphabet. Reading books and sounding out spelling. Sometimes her ways sported a 1950s jacket, which proved challenging for EVERYONE, especially Sam. As he got older, he got bolder, and she got more upset. It was both frustrating and just plain really silly that Shirley thought it made perfect sense to try and begin a 'teaching lesson' just as Sam was running out the door to play on a perfect sunny Spring Day. But, like with anything else, compromises were made or "battles were chosen."

I taught Shirley that phrase. "Pick your battles." I even explained what it meant and how it works REALLY WELL being in charge of two precarious boys. I'm not convinced she totally bought into it, but in the very least, she humored me with it, and that was good enough for us.

While Shirley loved Sam and Thom very very much, our little Henry was easily the Apple of Her Eye, and it showed. And when i think about that, i'm filled with love for her. For never ever judging Henry on his looks early on, when he was first born and before his facial reconstruction. Shirley always held him and rocked him and sang to him like she did with the other boys, and I appreciated that very much. She willingly learned how Henry's feeding tube worked and patiently embraced the colorful laminated "step by step" picture guide i created for her. SHE WORKED HENRY'S PUMP! And that made it much much easier for Ron and I to work at the same time, or go out for several hours (in a row!) on Date Night. I was proud of her for that.

Shirley persisted in trying foods with Henry and sure enough, one day, that will always be a clear memory in my mind, we came home to him eating applesauce in her arms. I watched him open his mouth, take a small bite and open again for another - the first time he had done such a thing. I was overwhelmed with emotion and thanked her profusely for never giving up on him. A mere week before her death, she was feeding Hank ice cream and he LOVED IT, opening wide for each new bite and yelling at her if she didn't provide the next bite fast enough!

Last winter, I drove Shirley down to her Florida home, using her car, so that she would not make the long journey solo and be able to have her car down there. We spent about a week together, and i told Ron that it was the best time i had had, 1:1, with her. We had many conversations and learned more about one another's lives. She told some very funny stories, one of which truly warmed my heart about her and Ron Sr. running out of gas late at night on one long road trip and Ron pulling into closed gas stations and getting the last of the drops of gas already sitting in the lines and being able to fill up their tank enough to get home. Now whether that is an old wives' tale or whether it really happened, i didn't care in the least. I loved watching her laugh really hard remembering the story, and it cracked me up, too. But then i would snap at her when she would lecture me about not pulling farther away from the pump so that *I* could get the last drop and not give it away "free" to the next customer behind me! GIMME A BREAK SHIRLEY! ;-)

While in FL, a mere week after i flew back to NY, Shirley had a massive heart attack requiring her to have double bypass surgery. Ron flew down for part of her recovery, but unfortunately she spent a lot of her "vacation time" down there in rehab. Upon her return, she had further heart complications requiring more surgery, and I became her caretaker at our home for a couple weeks, taking her to follow up appts with various heart doctors and procuring her a more professional and caring primary doctor, who paid attention to what meds she was on and if any of them interfered with one another (MANY of them did, during that first inspection - it was downright scary). It was decided by all parties that I would take over her medication dispensing, which i did every week or two dependent on her Coumadin Clinic here in Corning. It was a convenient and "fun" way to bring her to Corning and - wow! - watch the kids again! :-) She loved it. And it was really nice to have, on average, more Date Nights than the rest of our married-with-kids friends.

Shirley will be dearly missed in our home. I'll even miss the spats i would have with her, over YOU NAME IT. There were many, but just like any argument, it blew over and life went on. I think sometimes Shirley respected my parenting skills and my unabashed personality on telling her how it went down in our family.

Sam and Thom 'mostly' understand that Nanny is gone. Well - Sam does. For sure. But Thom still toggles between present tense and past, and even sometimes reminds himself out loud... "Is Nanny at the house? - oh... that's right. Nanny died." ~ ~ ~ Outta the mouths of babes...  ♥

Henry Turns THR3E!!

The ol' addage "no news is good news" has certainly been Hankster's motto these days. Sometimes the days of constant and repetitive hospital stays seems like eons ago. And then sometimes, they are crystal clear like yesterday... BUT NOT LATELY!!!!

The fact of the matter is... Henry hasn't been 'sick' and/or hospitalized for SIX WHOLE MONTHS! This might be a new record! Sure FEELS like it! Yes, i knock wood constantly. Go ahead and knock some too if you'd like, can't hurt.

Henry has made the most noticeable and dynamic progress, globally, in this past year. He learned how to sit up, spin in circles, spin-roll-scooch, and now CRAWL, chronologically. He is pulling to standing all the time. I would not be surprised if he makes big strides in the standing/walking-along-furniture realm this coming year. And just two days ago, he impressed and shocked the hell out of ALL of T4 by standing at the bottom of the stairs and slowly and meticulously, over the span of about 5 min, crawled up 5 STAIRS! That's a step a minute! He rested his head in between the last two - that's hard work, yo!

I do feel in my heart of hearts that he will indeed WALK someday. I have zero expectations on WHEN, but given his progress, i think it will be sooner than later.

Henry is also doing quite well in the "eating" department. He is constantly trying new foods. The consistency is that of a fine meat sauce (in fact, he happens to really LIKE spaghetti meat sauce). Baby food, stages 1 and 2, seems to be too fine, at this point, which is good news! That all said, small amounts is the key. He still very much gets his entire nutrition from his g-tube, and most likely will for years. But i'm also willing to guess perhaps not FOREVER. I'm hopeful, at least.

Some of the foods Henry enjoys: applesauce and chewing on apple wedges, watermelon, spaghetti sauce, pears, bean salad (mushed), mushed banana... and probably a few more i'm missing. I gotta say here, the gals at his daycare have been EXEMPLARY in trying new foods with Henry and not being afraid of his delays in that department. "Can't hurt to try!" they say, and i agree whole heartedly. They've only received THUMBS-UP in the 'Let's Try New Foods' dept.

Henry loves music! He gets quite excited with his entire body! By that, i mean he starts jumping, flapping his arms, and yelling. Sometimes he does a Stevie Wonder-like swaying, and always smiling or even singing along. He has mastered humming The Alphabet Song, the Itsy Bitsy Spider (and even motions with his hands/fingers to it) and simply MELTS when i sing "On Top of Spaghetti," which i've tweaked to say, "... all covered with cheese... I lost my poor HENRRRYYYY... when somebody sneezed." His eyes light up and the smile is immediate.

Needless to say, [and it's been said many times]: Henry is easily the happiest kid i know. I've probably typed the same thing about Sam and Thom "back in the day." Not so much these days, with those two nutcases... (ha!)

But Hank - steady as rain. He doesn't like when Beegsley barks so loudly all of a sudden, but then again - WHO DOES!? Damn dog. He also doesn't like it when voices are raised. If yelling is happening, Henry is upset, and either yelling TOO, or crying. If laughter is happening, Henry is joining in with his giggles from wherever he is, too. It's precious.

I don't know what the future holds for Hank. Healthwise, he's steady, with no surgeries planned. An appointment is to be made with Pulmonology for a follow-up to "see where things are at." Come to think of it - at the time i type this - i should make an appt to get a chest xray, since this is the healthiest and clearest he's been in a long while. They need an accurate baseline to assess...

Henry is loved by so many people, many of whom i don't think i've even MET: this blog has traveled in ways I'm not entirely aware of. But i do know that his every day encounters, the people who care for him, love him emmensely. I don't think it's possible for him to go a few hours without getting kisses and hugs.

For the heck of it, i've provided a link to the first significant blog entry introducing Henry Darwin to the world, typed during the wee hours in the Ronald McDonald House of Philadelphia...

... oh how very far we've come, my sweetie pie...

H Cubed

... as in "Happy, Healthy Henry!"

Here are two videos capturing Henry at his best. Sure, there's some boogars, but he's vibrant, joyous, healthy (for Henry!), interactive and just plain ADORABLE!

[*These* are the videos i need to show doctors/nurses if he ends up in the hospital under 'unfortunate circumstances' and he's not being himself. Doctors and nurses rarely see HEALTHY kids. Documentation is key!]