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 etsy.com 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! :-)

Merry Christmas, Everyone!

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...

Pic du Jour

"Sittin' in the Mornin' Sun..."

Chillin (literally!) in his exersaucer at Daycare! Happy as a clam!

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...

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.

Hank-a-Bundle

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

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

Three Sweet Boys

Airplane