Thursday, December 29, 2011

Great Moments in Nursing 101!

I've been wanting to blog about this for a while now and am just now getting around to it.

I found a pretty decent solution to the spontaneous, and oh-so-annoying, opening of Henry's medicine port on his g-tube, leaking his feed (and sometimes recently administered meds!) all over the place.

First, I surfed the net, of course. I googled "med-port cover" and the likes with no results. Then i went on because there are some pretty cool mamas out there with a ton of solutions to help our special needs kiddos. But I still didn't see something. Then i went on eBay and typed in all sorts of words. I initially thought some kind of TUBING could go over it. Then i starting thinking "stretchy"-SOMETHING might be more effective...

Somehow, i stumbled onto these puppies, and a lightbulb went off. And for less than $5 (FREE SHIPPING!), it was a complete no-brainer to try...

Just query the name in eBay - they're ALWAYS being sold!

I'm here to report that we've been using these little blue finger braces for over 6 months. I've not needed to buy more (although i was more than willing to); i simply wet 'em and wash them with handsoap while i'm washing my own hands. Just squeeze 'em out, and let them air dry.

Here i've put together a photo diagram of how AWESOME these little suckers are and how they've really cut back on a ton of "OH !@#$^%%&*(!!!!!" moments when you go over to see how the lil guy is doing. I hated nothing more than to find a wet, soppy, stinky feed-soaked baby. **GRUMBLE**

Left: Showing their 'original' intent - it's a pretty snug fit!
Middle: Here is the end of your g-tube with both feed port (lg) and med port (sm) opened
Right: The finger brace and g-tube, side-by-side (sizing is perfect!)

Left: Insert your index and middle finger and S-T-R-E-T-C-H it open.
Middle: Slide your fingers onto and around the end of the g-tube.
Right: Slide fingers back out and make sure med-port is secure from the outside.

Left: Here's how it looks! All secure and cozy warm! A little SWEATER! :-)
Right: When you need the med-port, simply slide brace back onto tubing.
NOTE: When returning brace back onto med-port, make sure the med-port cap is secure (see diagram above).

Henry Hugginsworth
So there you have it!! I probably have a bonafide invention in the works here... And i don't even feel right "marketing" them from etsy since I've just showed you how cheap they are to get them on eBay. I've thought about sewing little beads and making them 'cute' for etsy, but then you've got the whole washing thing that needs to happen...

Anyhoo. It feels good to have documented this. Cheerio, fellow mama nurse-wannabes! :-)

Monday, November 28, 2011

Strabismus Surgery

Henry was born with an eye that intermittently gazed outward, called "exotropia." The general disorder of an eye not aligned forward is called "strabismus."

From Wikipedia: "The brain's ability to see three-dimensional objects depends on proper alignment of the eyes. When both eyes are properly aligned and aimed at the same target, the visual portion of the brain fuses the forms into a single image. When one eye turns inward, outward, upward, or downward, two different pictures are sent to the brain. This causes loss of depth perception and binocular vision."

Before Surgery
After Surgery
Over a year ago, Henry had glaucoma surgery on the same eye. On November 7th, strabismus surgery was performed in Rochester to correct his alignment. It's a simple 20 minute surgery, quite routine in fact (his doctor, Dr. Gearinger, often performs eight or more on a given day), but it still requires anesthesiology, which is NEVER a "small thing" with Henry and his heart condition.

That all said - - WOW, what a difference it's made! Not only in his appearance, but i believe his reaction time and concentrated focus on an object is noticeable.

Henry's overall health and demeanor are excellent right now. We've not seen any recurring seizure activity (he's on medication for that) and his oxygen levels are holding steady at 82-85. He had a small ear infection that is almost gone, with good ol' antibiotics. He's happy, cooing, learning more signs (such as "more," "bye bye" and "all gone") and is getting stronger. He likes to stand a lot in his exersaucer, and is ALMOST at holding steady in a sitting position on his own (if he goes over, however, there's no getting back up on his own!).

He's 22 months old today. Wow. Time a'zooms...

Saturday, November 19, 2011

Friday, November 18, 2011

Happy 6th Birthday, Samson!!!

Love that smile!
Sam started his day off with a gift from Daddy really (although Ron said it was from US, i like that it was from him). He found a crossbow compound bow and arrows geared toward kids. We explained very clearly to Sam that this was to be done ONLY while Daddy is around, and he got it. In fact, it gets put out of childs' reach. I'll have to get video of him shooting arrows!

Ron surprised Sam with a kid crossbow! Now we needa target!
(Nothing like recycling MY birthday signs!)
This year was the first year that we celebrated Sam's birthday with a "bonafide" party with some of Sam's friends. I completely winged it, considering the late date in planning. But thanks to some awesome friends with kids who are buddies with Sam, awesome family and the magic of going to a play center on a WEEKDAY evening (read: The whole place to ourselves!), we had a great little party. Lots of sweating, laughter, jumping, bumping, running, snacks, candles, cake, juice, Spongebob...

Battle of the Toothy Grin! (Thomas,3 and Brendan,4)

"So I sez to her, i sez, 'Sweetie, you pick out ANYTHING, money means NUTHIN' to me!'"

"Duuuuude... great paaarrty *burp*"

Life's good.

Sam, you're growing up fast, my friend. We're savoring every day as best as we can...

Tuesday, November 08, 2011

Hank's Magic Nose

I *JUST* noticed this yesterday, after Henry's eye surgery (post forthcoming, i do promise!).

Henry's nose is changing it's shape.

About a 5 month gap between photos.

I vaguely recall Dr. Girotto, his craniofacial surgeon, mentioning that in extreme cases, such as that of Henry, one more additional surgery could be needed, to 'finalize' shape and form. I want to talk with Dr. G to see if such a further surgery would be beneficial, medically.

4 months old (June 2010)

Cosmetically... well, the difference is clear. But that is something that needs much thought...

Anyhoo, just thought I'd share something I noticed.

Tuesday, November 01, 2011


Brr... it's cold outside, but warm inside the Henry Cocoon.

Peek-a-Boo... I see you!

Thursday, October 20, 2011

Thom's Thumb

This post is actually more for mostly recording purposes. I use the blog to reference quite often with events, kids' milestones and the like. This is one of those entries. But you might dig it anyhow.

Thom broke his little left thumb on Oct. 14. I just so happened to be in the Massachusetts area helping with a new Wegmans store grand opening when i received the calm-but-anxious call from Amy, one of his teachers at the daycare center. I told her she'd have to try and reach Ron, which she eventually did, and I eventually heard from him, headed to the hospital for x-ray.

From how i hear it, his thumb got wedged in the jamb of the door and the door completely CLOSED. So um, yeah, i guess that would break a finger. The short of it is, Thom was a total trooper after the initial shock and pain of it. He never once complained or whined. But you could tell something was up because he 'guarded' his thumb and used his other hand more.

Mmm... peeeeeling thummbbb naillll
X-rays were taken and the thumb was determined to be broken, but nothing is physically done in this situation. No splint or whatever, not for a three year old. So the thing slowly started healing. It peeled completely, like a banana, a couple times (Mommy loves peeling skin!). It was blue and red and green and ugh. Pretty soon he started to be able to bend it more and more. But soon, i noticed, he started to lose the nail. That's always a fun thing. It bubbled up in the process and i documented its' TRANSFORMATION. The weirdo little nail that emerged from underneathe is a little lumpy and jagged, but I'm guessing it'll be back to normal in a few months.

Thursday, October 06, 2011

Henry Begins Daycare!

Henry is now attending the Corning Children's Center, where Thomas goes! In fact, the two of them see each other around the school or outside playing.

Months ago, i entertained the idea but I was torn with conflicting emotions about it.

How's THIS for multi-tasking!?

On the one hand, i could totally see Henry at the Center, interacting with other children his developmental age, and being exposed to all the learning tools the Center has to offer. After all, I'm convinced it is daycare that helped both Sam and Thom with their learning and potty training. Thom was slightly delayed upon entering the Center, and within 2-3 months, was right on track, in fact, exceeding in some areas.

On the other hand, however, I felt I would be judged. I feared it would appear that i was 'pushing off' my Motherly duties in caring for Hank, who needs some extra attention. This is so VERY unlike me, it really made me feel uncomfortable, to be 'worrying' about what others would think. But there it was. I was also uneasy with not being an interactive part of his therapies. One amazing benefit was that ALL four of his therapies would go to him, at the Center. But that is a little bittersweet in that I can not easily be there to watch, observe and chat with the gals.

So everything was weighed out, and the decision was made. We are quite fortunate, once again, in that Henry qualified for the Early Headstart Program (age 0-3) which is wholly funded by NYS.

He's been going for a little over a month now, and the advancements he is making are GREAT and QUITE noticeable and noteworthy! He is starting to sign. He does "more" and "all done" and quite frequently pats on his belly when asked where it is. He can wave and 'say' bye-bye and puts his arms in the air when someone asks, "How big is Henry? SOOO BIG!" These things are not all done EVERY time, but certainly enough for it to count and be noticed.

The gals in his room are AMAZING with him. In the first days of his attendance, i hosted a little "presentation" to everything uniquely Henry. I had five women and I forming a circle around wiggly Hank. I created laminated visual charts with directions on how to work his feeding pump. I walked them through, step by step. I literally SHOWED them Henry - his g-tube button on his belly, his chest incision scar. I told them that when Henry hiccups, people in the next room will be able to hear it - its incredibly hollow-sounding and loud and to not be alarmed. I eased their nerves about handling a 'special' little guy. Within the first week, they smiled and said they'd take 12 Henrys any day. Sounded to me like he was flirting. :-)

Diggin' on the spoon. He practices tastes and getting used to things in his mouth!

"Stick with me, hunny."
Henry does feet painting, sits at Circle Time, and takes Buggy Rides to the Farmer's Market down the road. He's decorated a mini pumpkin and mushes his fingers (with help, of course) into homemade play-doh. He's even got a little girlfriend, Alexa. She is VERY protective of Henry and her eyes light up wildly when i bring him in the morning. She walks over, pats his leg and tells everyone around her: "Henry! Henry!"

Henry is in a room with children who are developmentally close to his level. Most of them are about a year to 18 mos old. Henry is not quite functioning at a 12 mo level, but he's getting there FAST. He is sitting up on his own longer and longer without falling over. I believe by Christmas time, or shortly thereafter (by his 2nd birthday late January?), he'll be sitting up.

Sitting, unassisted!
This was a wonderful decision we've made. Maybe even the BEST. He's getting amazing care and attention in an atmosphere totally conducive to aiding him developmentally. Let's not also forget the obvious here: This frees up Mommy and Daddy time. I've been able to get some things done around the house, with an ever-growing list. I'll be the first to admit that its NICE to run errands without 1-3 kids in tow.