Friday, July 30, 2010
Wednesday, July 28, 2010
For fun, and to tide us over, let's run down the members of the family:
Me: I guess the biggest recent focus/news in my life is my ditching of shampoo. This is a big deal, folks. And no, that does not mean that i've turned into a greasy hippie slob with dredded hair. It means that i've read up on alternative methods of washing my tresses sans chemicals and toxins that are just 'thrown into' conventional mainstream shampoos. The term "natural" on a bottle of shampoo means literally NOTHING; it's legal to just toss the term on there. Nice, huh? So i've gone the most natural route (aside from using water only, which is a choice for many) and begun using baking soda to wash it, and an apple cider vinegar rinse for conditioner. It's been 2 weeks already, and I've been more than pleased with the results. I never really experienced the 2-6 week 'greasy transition' period i read would happen. It probably 'helps' that my hair is mostly grey, and i'm older, which both means less sebum production. I've been letting my bangs grow as well, and the result is a wavy, even MORE full, natural youthful look. Ron really digs it (rr-owww!).
Ron: Ron been into jigsaw puzzles lately. He took over our kitchen table once again with a puzzle, which sometimes can bug me, but it was this scene from "It's a Wonderful Life," so it was impossible to be upset. Every time we'd walk thru the kitchen, we'd try to get at least a piece, if we weren't sitting there working on it. This puzzle's pieces were the CRAZIEST, most unconventional shapes, which made it doubly challenging. And because we get 99% of our puzzles from yard sales or the Sal Val, we're never sure if it's going to all be there. Sure enough, there were 13 pieces missing!!! Ron had an awesome idea of putting our family's faces behind all the holes, because, afterall, *WE* have a Wonderful Life! ~ ~ ~ Ron's also got an exciting music video endeavor in the works. As some of you know, he's produced an album of original songs, entitled "Purplebrown - Up & Down," and one of the songs is named "Robots." His childhood friend from Candor, Paul Beladeau, is working with Ron in figuring out how to make a music video from his studios in Hollywood. This is super exciting, Ron is pumped, and i cannot wait to see the final outcome!!!
Sam: Well Sam... where to start. I should walk around with a pencil and paper at this point, due to the constant stream of "Sammyisms" that come out of that kid's mouth! And the expressions and body talk that goes along with them - - hoo EEY! That bugger keeps me on my toes, for sure. Sam's been enjoying summer day camp, 5 days a week, all day long, at the local Salvation Army. It is free to children in the community and they have a full schedule! Swimming at the Y twice a week, the library, the Corning Museum of Glass, and his favorite, Denison park. And every Friday is Field Trip day, which i've had the pleasure of partaking as a chaperone on two of the trips (Watkins Glen gorge and Roseland Water Park). Both times i've come home with a slew of stories, which makes life wicked exciting! ~ ~ ~ Sam's also rockin' out in the swimming department. Just this summer alone, he's learned to put his head underwater, jump in with Mommy, jump in solo, doggie paddle solo, (all with a vest) and has an overall amazing confidence in the water; it's just a matter of time before he is swimming in the deep end, solo, with smiles. Sam is growing up so fast, quite literally and figuratively. Before i know it, he'll be towering over me and kissing the top of my head - - by age 12!!! ;-)
Thom: Thom is a constant chatterbox. There should have never been concern for speech delays. He knows a ton of alphabet letters, randomly, and is constantly coming out with more words and phrases. Even his little behaviors are hysterical, to match his never-ending smile. He likes to 'pretend' to be knocked down by Sam as he falls to the floor and rolls around like he's in pain. It's so funny! He and Sam have been wrestling more which either ends with giggles or tears - as THAT'LL go. But i love it. I love being a mom to BOYS!
And last, but certainly not least, Henry: Henry is SIX MONTHS OLD TODAY!!!! Our little Buggy has been home for over a month and getting stronger and more active and more expressive. He often smiles completely on his own or when i come up to him for lovins. He kicks and moves like a madman when lounging in his bouncy seat. Early Intervention evaluators came to the house yesterday to 'score' Henry. While he is doing quite well in many areas, he is definitely delayed in others, which only gives us a base on which to start and focus. My continuing challenge is keeping Henry's taping on his nubbin. Some days i can go the whole day, and others i'm having to replace it twice or more; his little hands move around his mouth so much, i guess it's just LUCK when it does stay on. His next appointment in relation to fixing his cleft is this coming Wednesday, during our vacation, with the cardiologist in Rochester, who works with the craniofacial team there. I will be asking what our next step is and for a rough timeline.
There's T5 in a nutshell. This summer is proving to be so fun and wonderful. I love my family more than words can describe. Life truly is Wonderful...
Monday, July 19, 2010
Other words/phrases, for documentation purposes: "More, please" (complete with sign language), "I'll get it," Car, the letters R, V, B, O, I (knows them and can pick them out and say them), Eye (pointing), YUM, Baby, Bye, Goggles, GO!, Water, Book, CHEESE (both the food and the picture-taking magical word!), Shoes... I think that's most of them, for now at least.
He's been mimicking Samson like no tomorrow. The good, bad and ugly, of course. But Sam's been a decent sport in sticking to the GOOD, especially when he knows Thom (AND MOMMY) are watching. I did catch Sam flying and diving from the couch arms onto the cushions, but i stopped that in a hurry. Thom has certainly tested his own waters and ended up with a slammed noggin or bumped knee, but I introduced him to the "kiss the boo-boo" thing and now he's milkin' that one for all it's worth. Again - fine by me. I've got only so much time where that works, is cute, and he loves it. :-)
Monday, July 12, 2010
We have started taping Henry's nubbin in an effort to bring it closer to his face and mouth in preparation for his cleft lip surgery. The idea being that the closer it is to his face, the easier the repair will be and the less of a scar, assuming the skin does not have to 'stretch' as far to pull it all together.
A couple of explanations and clarifications here are helpful, especially for those curious about the details.
We met with Dr. Jeffrey Karp in Rochester last week. He studied Henry and his cleft situation and presented basically three options, or 'paths' that we could take. It's worth mentioning that at Henry's age, which is considered 'late' in beginning preparation for repair (Dr. Karp likes to start working with children as early as 1 or 2 weeks old, and as we all know, this was impossible with Henry), it could be very difficult to PREPARE his nubbin due to the rigidity that has set in. Newborns ears are like paper, floppy and pliable (which i've always marveled at with my kids at birth), and their palates are similar in nature, thus the desire to begin training early in that area. The longer it has to set in, the harder it gets. Dr. Karp said that Henry's nubbin was very hard and there is a good possibility that no matter what route we take to prep it for surgery, it may not take.
The three options, in order from least invasive, are: taping, molding and lip adhesion.
Taping: This is the option we picked and is what we are doing in these pics. We have chosen taping because it does not require any surgery (thus anesthesia) and is relatively painless (despite Henry's look). I lay down a protective tape called Duoderm (not in these pics, which i did later), in little 'football non-glare' strips under his eyes, and then lay the steri-strip tape (shown) on top of that. The Duoderm protects his skin from the badgering of sticking and removing tape all the time. The rubber bands act as a tension system to stretch and pull down Hank's nubbin closer to his face, more into his mouth, where it should be (his 2 front teeth buds are in this nubbin). And in theory, this slight pressure will work its magic to bring everything in, which will make surgery a little easier. This whole process can take months. We are not sure about Henry and his progression, but we are keeping in touch with Dr. Karp via phone and photos sent via email and will go from there. Just last night i sent him an email with the two pics of Henry here, and he called me right back (10 pm at night!) to tell me that i get an A+ for placement as well as the photos taken. He mentioned just putting his kids to bed and having time to call me. I really like this doc! I'm impressed with his personal attention to Henry.
Molding: Molding (or Nasal Alveolar Molding, or NAM) is like a little mini retainer for his nubbin/mouth. An appliance is made out of plastic to hold his nubbin in the front and his gums on the side. Also, two little nasal 'bulbs' are in the front for shaping purposes. Rubber bands and taping are needed as well for this process (see pic) to make it all do what basically taping does. The reason we did not choose this route, while often successful and 'faster' than taping, is because the appliance, just like a retainer (did you guys have one? I did!), or dentures, can rub and cause ulcers and sores in the mouth, which can easily and readily lead to infection. Henry, specifically, is particularly prone to infections (as his cardiologist has noted) and we do not want to create such a situation, sending him back to CHOP with dangerous bradycardias and more IV antibiotics. No thank you. No brainer on this one to say NO. Another deterant on this option is time-consumption. It needs frequent adjusting by a pediatric dentist (in Rochester) and attention by mom and dad at home. I was unapologetic in admitting that I cannot dedicate this kind of time to this option. I know my limits, and responsibilities with also Sam and Thom, and did not choose to even try this.
Lip Adhesion: This is the most successful of prepatory options, but also the most invasive. It requires surgery and anesthesia. It is a 'messy' surgery that stitches the lips up to the premaxilla (or 'nubbin') and the pressure from being stitched together brings everything in/down. This one is almost a no-brainer at working, but when given the option to tape first (which we are not wasting our time with, given the various scheduling times involved, for all (docs and us)) or dive right into surgery, taping seemed like a good step. Dr. Karp, however, made it very clear, not at all to our amazement, that taping might very well NOT work, at this late stage in the game, in which case we'd do lip adhesion. I am comfortable with this. But taping can't hurt to try while we're waiting for further meetings and surgery times.
So there you have it.
It might be worth noting here, without too much hoopla, my slight disappointment with CHOP on this issue. I only briefly (if at all?) touched upon our NOT using CHOP for his cleft repair. The initial thought was to indeed get his repair at CHOP. I tried various times (and on various visits!) to meet with the cleft team for a consult, and was continuously unsuccessful. The nurses would page the team, and they would get no reply. One week, i made it my mission to have them page the cleft team at least every other day, and that also provided zero success. Then, one day, Hank's cardiac nurse said, in a befuddled and unsure tone, "Um... the cleft team called and said we could go ahead and start taping him. Um... i really don't know what that means. Do you?" Well i did INDEED know what that meant from doing online research and was LIVID (at the time; i do not hold grudges) that such a vague, hands-off approach and phone call were made. No one ever came to LOOK at Henry, how could they effectively and professionally suggest a method of correction? And based on that phone call, i was more pushy for a follow-up and consult and still got none. I had then, since, talked to several other folks about the cleft team and they had nothing but negative things to say, so it only solidified my gut instinct to wait and go to Rochester for repair.
Then, on one visit, i miraculously and FINALLY got a consult with a cleft resident, a very professional woman who was flabbergasted by my above story of the mysterious phone call. I got down to brass tacks, told her my frustration and disatisfaction and was merely seeking an opinion, at this point, of Rochester's team. She had glowing praises and reassured me that their team was second, if not equal to, NYU's and theirs.
My point in telling this story: Because i had researched taping online and the CHOP cleft team had given this crazy 'go-ahead' to tape, I had all the resources and ability to begin the process at the appropriate age for it to work. We're talking at least 3-4 months ago. If this had happened NOW to me, but back then (meaning, where i'm at comfort- and confidence-wise with my care of Henry), I *WOULD* have begun taping him on my own, while he laid in that cardiac hospital bed getting IV antibiotics and not much else except biding time. It's slightly disheartening, but not the end of the world. I can only say "bygones" to such a missed opportunity and will hope that whatever is done now will work, and will work safely and effectively.
So - Little Hank is getting prepped for a big surgery in my book. While cosmetic in nature, just putting him under to do it is something not to be taken lightly for Henry. And then there's the healing, of course. There's also the gigantic Getting Used To A New Little Face All Over Again thing, but I'm sure that will happen naturally and happily, like much does in this family. We are talking months down the line i think, and of course I'll be sure to post any updates as they develop. In the meantime, i have to figure out a way to keep his hands from interfering with the tape and little rubber band loops, something that would be a non-issue with an inactive 2 week old. :-)
Sunday, July 11, 2010
Hope, my dear sweet awesome amazing sister-in-law - - YOU ROCK! We love you so much - thanks for being so creative and sending some of those good vibes all the way to our guys in NY!
Henry's, Sam's and Thom's Monster posed the same as its Keeper!
Friday, July 02, 2010
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.