June 30, 2007

X-ray Glasses

Well, they're actually MRI-glasses. We recently received all of Benjamin's hospital records on a disk. These are some images from Benjamin's MRI scans. Pretty amazing, huh?

Here's an image of his back. You can see the slight scoliosis of his spine. It's very mild, according to his orthopedist.



Here's a pretty crazy image. It's of his head, looking down on it from the top. Those big white balls are his eyes!


Here's a profile shot. So cool.



There are probably 300 separate images on the disk they sent, yet none of them gives conclusive results about the tethered spine. It's pretty frustrating.

He's supposed to go back for another MRI to look for tethered spine next month. However, we've heard from some other sources that it might be better to do an ultrasound for this. Ultrasound is safer, doesn't require sedation, and is quicker. What to do?

June 29, 2007

VACTERL Conference

We're in Cincinnati now for a conference about VACTERL Association, the condition or whatever it is that Benjamin has. It's so great to see so many other people in the same boat...and to be around people we don't have to explain things to.

The welcome reception was tonight and it was both wonderful and overwhelming at the same time. I don't think we expected so many people and so many kids (isn't this supposed to be a rare condition??). We didn't expect to be as nervous as we were (at first) and how kindly we were welcomed at the reception desk. We definitely weren't expecting to stumble across a display of memorials to kids who have died from this. That was, as Grandma Batey put it, "a little too touching."

We're hoping to learn a lot here...like how to pronounce "VACTERL" in the first place. Anxiously awaiting the full program to start in the morning! However, I'm still a little nervous for some reason. I think it's because being here makes it more real.

- becca

June 27, 2007

Real men wear purple



We've been posting less lately because Ben is visiting his grandparents (and Renzelli aunties, etc) in Ohio.

June 25, 2007

June 24, 2007

Introducing...Natalie!!

Auntie Natalie with her baby (and Benjamin's best friend), Owen, and Benjamin.

June 19, 2007

Update - orthopedist

Benjamin had a check-up with his orthopedist today and things still look good.

The orthopedist, Dr. Knuth, is in charge of BJ's bones...especially his back and ribs.

At some point during the first few (crazy) days of Ben's life, some doctor or another told us that he had 2 hemi-vertebrae and a missing rib. However, today the orthopedist told us that he sees only 1 hemi-vertebra and no missing rib. Yay! (But what's up with that??)

He also said that some of his ribs might be connected through bone or cartilage, but it's hard to tell through the X-ray at this time. This is the first we've heard of this. Grrrrrr.

So, once again (and the doctor says this is probably going to be our song-and-dance for years to come) it's good news and bad news. Good news - there aren't any problems now that warrant action...Bad news - it's still wait-and-see what happens. Ben will probably have an orthopedist appointment every 6-months for many years. It's just a matter of keeping on top of it as he grows and addressing any problems as they arise.

Next step - an x-ray in December to see if we can get a better picture of this rib business.

Introducing...Owen!!!!

Owen is Benjamin's "cousin" and best friend. They got to meet for the first time this weekend. Owen was born March 23rd, weighing 9-pounds, 22-inches long.

When they first met, Owen was very curious.


Then we thought it would be funny to try putting Benjamin on Owen's lap. Unfortunately, it seemed like Owen might eat Benji for lunch.


Nothing a little pacifier couldn't fix. Best friends forever!

June 18, 2007

Introducing...the Renzellis!


Christina, Andrea, and Natalie...becca's "sisters" for the past 26 years. Benjamin finally got to meet all three of his Aunties this past weekend. What a lucky guy.

Health schmelth!

"Oh, you're pregnant! Is it a boy or a girl? Just as long as it's healthy, right?"

Once upon a time a perfectly healthy baby boy was born in the city of Chicago. In addition to his perfect health, he was oh-so-smart. He skipped a few grades here and there and went on to attended Harvard. Eventually he started mailing bombs - killing 3 people and injuring over 20 others. This "healthy" baby grew up to be Ted Kaczynski, The Unabomber.

June 14, 2007

Holland?!?

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


*******************************************************************

I don't personally relate to the "loss of a dream" (maybe we haven't hit the mourning period yet?). I certainly haven't experienced the "slower pace" of Holland either. But I definitely relate to the concept of planning for one place and ending up some place else entirely. Our place wouldn't be Holland, though. It would be more like Bhutan...some place you've never even heard of. But, it turns out people live there...and thrive there.

And so will we.

June 13, 2007

We're not so weird

Guess what? We're not so weird after all. There's even a Yahoo! Group out there for families dealing with VACTERL Association.

There is also a VACTERL Network and they're organizing a conference at the end of this month...Ben, his mom and dad and grandma Linda are all going.

It's been SOOOOOOO great to find others like us out there. Others with children who are in their teens...years past where Benjamin is now. Others with children with way worse manifestations of VACTERL (heart defects, etc) - makes us feel so lucky. We've received so many nice messages from people belonging to the Yahoo! group. Many of them tell us that these first couple of years are the hardest...

...hope they're right.

Colostomy Schmolostomy!

A colostomy has it's ups and downs. One of the definite downs is the struggle to figure out how to take care of it. There are two basic treatments: diapering or bagging.

Diapering makes sense for a baby because they wear a diaper anyway. The problem is that they don't make diapers intended to catch poo coming out the side of your stomach. We've tried a variety of wacky treatments. The one the NICU taught us was a 10-step process involving 6 different supplies...and two diapers for every diaper change. Regardless of the method when we diaper we pretty much spend the whole day cleaning him up and washing his clothes...and changing pad...and sheets...and often our clothes.

Baby messes are part of the baby package, though, so that's not such a big deal. The real problem is diaper rash, or the more scary term the medical folks like to use - skin breakdown. With the colostomy, he doesn't really have bowel movements like other babies...it sort of just seeps out periodically (unless he's crying and then it's more like a volcano). Any baby that sits around with that stuff on his skin is likely to get irritation. So, we change his diaper just about every hour (and remember - two diapers each time...you do the math!). And his skin sill looks irritated. Oh bother.

Bagging is pretty much just like what adults with colostomies wear. It's a plastic bag which adheres to the skin and collects the discharge from the colostomy site. When it works, it's pretty darn convenient...and practically mess free! I think if more people knew about it, there would be celebrities going out and getting elective colostomies for their babies. Who wouldn't want all that mess collected in a nice, convenient, disposable pouch?!

However, getting that darn bag to stick is such and issue. It's either not stuck well enough and leaks, or else it's stuck way too well and damages his skin when it's removed. We recently had the latter problem. The hospital sent us home with this barrier adhesive called Adapt Paste. We've been having problems with the bags leaking, so we thought we'd be clever and try out this paste. BIG MISTAKE. That stuff is like cement - impossible to wipe off, doesn't wash off, and sticks to everything.

A few days later it was nearly impossible to remove the bag (but, hey, it didn't leak!). It didn't seem to bother Benjamin so much, but his mom got a little frantic when she thought she might have to have it surgically removed. The real kicker to all of this is that Benjamin was supposed to get home visits 3 times a week from an ostomy nurse. But, it turns out pediatric ostomy nurses are about as rare as an endangered species, so that's not happening.

Check out the Adapt Paste stuck to my elbow...colostomy schmolostomy!




Little smiles


Ben has been giving us little smiles since he was a couple of weeks old. Some of the best things on earth!

June 10, 2007

Shadow Buddies

I stumbled upon this website while looking up ostomy supplies...I don't know why, but for some reason I think it's both dear and a little funny at the same time.

Shadow Buddies are little dolls for kids dealing with medical conditions. The dolls are "condition specific" - so, depending on the medical condition, the buddy will have physical signs of that condition. Guess it's the descriptions that struck me as funny (and a little sad at the same time)...or maybe it's the lack of sleep!

Some examples...

Diabetic Buddy
Buddy with finger sticks indicated on a hand. Screened on the body is a fanny-pack with syringe, insulin and a red apple. Fabric Fanny-pack cover is included in the package.

Lung Transplant Buddy
Buddy with chest scars showing Broviac® catheter and four chest tube holes

Dialysis Buddy
Buddy with a peritoneal catheter under belly button and a mask.


Oh, I just figured out what's funny - fanny pack. Hee hee. Yeah, I definitely need more sleep.

- becca

June 07, 2007

And more pictures





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Introducing...Christina!



Christina (becca's best friend since kindergarten orientation) came to visit this week and it was so great. She fed the baby...and becca...and loved up Benjamin real good. She was here the day after Benjamin was born, but didn't get to see him because she wasn't allowed in the NICU (only parents and grandparents were allowed due to "flu season"). We're pretty sure Benjamin didn't get put down the whole time she was here - and he gave her lots of smiles in return.
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June 06, 2007

Introducing...Amanda!



Amanda has graciously agreed to still be Ben's friend even if he decides to try out walking.
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