January 23, 2008

Be strong and courageous

Want to be completely amazed? Meet Joshua's family.

You are just not going to believe this family. I'm not even sure how to start telling you about them. From the beginning, I suppose...

Susie is a woman who I met when she was pregnant and had learned her baby had a birth defect called encephalocele - basically part of his brain growing outside of his skull. Doctors first told her the baby would not survive the pregnancy. Then they told her it wasn't as bad as they thought and the baby may survive after all. Finally, as she reached the end of her pregnancy yet another test revealed the defect was far worse and, again, the baby would not make it. The planned cesarean, scheduled to give the baby the best chance of surviving birth, was canceled and Susie was allowed to deliver the baby naturally. This was her choice and wish. They fully expected the baby to die during delivery.

HE LIVED and his name is Joshua.

They expected him to die within minutes...then hours...then days...but Joshua just keeps going. He's on WEEKS now!

Joshua's situation is terminal. It's not a matter of if, but when he will die. His family was allowed to take him home and somehow in the midst of this they are just living every day to the fullest with him. Every day is a miracle and Susie is sharing it with us on her blog - Be Strong and Courageous. I'll warn you - you'll need to be strong and courageous, too, to read what she has written here. It's very difficult...but amazing.

Here is a sample of what she has written -

I realized that no matter what I tell myself, Joshua won't always be with us. But he will pass from this world into a world that is perfect. His body isn't perfect - that's the unfortunate thing about being human. None of us have perfect physical bodies - Joshua's just has more imperfections than others. But his soul and his spirit are alive and well - in perfect form. And his soul and spirit - the very depth of who he REALLY is - will pass into the Kingdom of Heaven....And even THINKING about losing Joshua, about being separated from him, puts a sadness in me. A longing to be with him. A longing to hold him and kiss him. A longing to watch him. And I think that must be a small picture of how much God wants to be with us.

Talk about strong and courageous, eh?

You can read more here - http://mnssams.blogspot.com/

January 20, 2008


Tonight he said, "Mama!"

Ahhhhhh!!! Probably one of my personal best moments since he first ate, Mothers Day, 4-days after he was born.

- becca

January 19, 2008

Pulling up!!!!!!!!

This morning he pulled himself up for the very first time and we are just beside ourselves with happiness. To look at him you'd think this day was inevitable. You probably think we're overreacting.

But you weren't there when the list of defects seemed endless. we've looked at his x-rays and MRIs full of twists and turns, vertebra in little chunks, things fused together, weird gaps in his ribs, asymmetrical growth, spinal cord defect, etc, etc, etc.

Mike was there when the doctor said, "He may never walk."

Honestly, when Mike called and told me this news (I wasn't yet discharged from our delivery hospital) I really wasn't that upset about it. It sort of paled in comparison to the possibilities of heart defects, kidney defects, and so forth. My reply to him was, "Oh okay. Well, we'll just tear up the carpet in our home so he can pull himself around with his arms on the hard floors."

I almost entirely credit my peace of mind to our friend, Amanda, who lives life as a Fairy Princess and not a disabled person. In her life, it's not IF she can do something, but HOW. So, when I faced the possibility of my son never walking, I thought of her, and I knew we'd just figure out how to make it work. Also, I just wanted him to live...walking or not!

A few months ago we got an upgrade from another orthopedic surgeon who said, "He'll probably walk, but he will definitely have a limp."

So we pay such close, excruciating attention to everything...looking for signs that things are good or things are bad. When he started crawling it was such a relief.

It's just another step closer to steps!!!

I just keep saying it...if you're the kind of person who needs proof that prayer, vibes, and whatnot work...just look!

Look at him! Just look!

January 18, 2008


Yeah, so apparently Ben isn't really ready for Cheerios yet. This morning I fed him some cereal and pureed peaches and thought why not try out some Cheerios. He had fun playing with them in his high chair tray and things seemed to be going well...until he put one in his mouth.

He gagged.

Then he gagged some more. Then he really, really gagged. And then the gagging turned into barfing. And the barfing led to an outfit change. And the highchair tray is in the dishwasher. And another outfit change. And a mopping of the kitchen. And new shirt for mum. And a load of laundry to the washer.

Which leads me to wonder...where the HECK does all that vomit come from anyway? His stomach can't possibly be that big, can it? I think maybe he has a hollow leg or something.

By the way, he's not bothered by this at all. He was perfectly happy and content barfing up a storm. I kept thinking he was done because he was smiling and playing with toys...and then up some more would come. Ah well!

I know it sounds crazy, but it's fun cleaning up from something "normal" like a barfing baby. Way better than cleaning up from a busted colostomy bag. Random side note - we threw out the very last of our colostomy supplies the other night - woo hoo!!!!!!

January 15, 2008

Mom is the Master

Did I mention that I got a master's degree in December? Well I did! I've been working on this degree part-time for a while now - a Master of Arts in Education with Teacher Certification (MATC).

North Park was so accommodating when I told them I was pregnant and would need to pick up the pace of the program in order to complete my student teaching in time for the baby. I student taught while pregnant and it was a blast. My 2nd graders at Valley View Elementary even threw me a surprise baby shower. So cute!

And even after Ben was born I continued with the program. The professor I had during the time Ben was in the NICU, Dr. Levandowski, was so supportive. I really don't think I could have continued with the degree without her support.

There were some less-supportive professors along the way. My personal favorite was the one who said it was okay to miss a couple of classes for Ben's surgery. I kept up with all of the assignments while we were in Cincinnati, writing 3 papers at my son's hospital bedside and while staying at the Ronald McDonald House. But, when I ended up missing one more class (just ONE more) due to the complications and emergency surgery, this professor then told me the highest grade I could get would be a B-minus. Grrrr.

The program I was in was a "cohort" program where you take the same classes with the same group of students throughout the entire program. I have to say I lucked out so big because we had the most awesome cohort ever. My classmates were just so smart and interesting. We all had a blast together. Gosh do I miss them.

I think graduation was December 12th or something, but I couldn't be there because of Ben's surgery. I hear they read my name though so it's official. Hee hee. I'm really shocked that I got it done. I can't quite believe it really. I guess I'm proud of myself!

- becca

Afternoon nap

Lookin' good

We heard back from the surgeon and Ben's KUB from yesterday looks great! Hurray!!!!

We're on the hunt now for specialists to take care of the other stuff going on:
- a fabulous, nice physical therapist
- an excellent, experienced, nice-guy orthopedic surgeon
- a neurosurgeon who specializes in tethered cord (it's okay if s/he's a jerk)
- a nephrologist (a jerk is okay)
- a urologist familiar with these kinds of defects (a jerk is fine)

Phew! You might be asking "What do you mean - a jerk!?" Well, with all the surgeons we've met we've found it's very, very rare to find one that isn't a jerk. I mean, when you think about it it makes sense. If you're a people-person you specialize in medical fields where you have lots of interaction with the patients. If you're maybe not so much a soft and fuzzy person, you'd probably be more comfortable as a surgeon - your patients are usually pleasantly sedated most of the time you spend with them. Or, maybe you're a very pleasant person who happens to love surgery, but then you spend so many hours around knocked out people that you forget how to be pleasant. Haha.

Really we have figured that there are some specialists who we need to be nice...and others where it doesn't matter that much. Like the physical therapist, for example - we're going to be working with that person probably once a week. Gotta be nice! That shouldn't be too hard to find, however we also need the PT to be very experienced with the vertebra and spinal cord issues going on. That's a little harder. The developmental clinic is doing some research for us and hopefully they'll be able to recommend someone nearby.

The orthopedic surgeon is a little tougher. We've seen two different guys so far and they've both left much to be desired. Ben will be seeing an orthopedic surgeon probably every 6-months for years so we really need to find a nice one - no jerks! We've got some leads going, but they've got to be covered by our insurance, too. It's a work in progress that's for sure.

The neurosurgeon can be a jerk! We just want the one who knows the book about tethered cord. It scares the bejeezus out of us to think that if Ben's spinal cord issues aren't diagnosed and treated appropriately he could have permanent nerve damage and pain. We're checking out Dr. Frim at University of Chicago, but the health insurance isn't cooperating. Grumble grumble.

Finally, the nephrologist and urologist can be jerks, too. We won't be seeing much of them so we just want them to know their stuff.

As you can imagine, we have dozens of emails and voicemail messages floating around out there in the abyss. It will all get sorted out eventually. In the meantime Ben is crawling (crawling! crawling! crawling!), laughing, exploring, and just being a normal (normal!) baby.

This is the life!

January 14, 2008

KUB today

Benjamin got KUB x-ray today (Kidney-Ureter-Bladder) to check up on his surgery site. Cross your fingers, pray, and all that good stuff that everything looks okay there.

We just got a phone call from a couple we met in the NICU when Benjamin was born. Their son had many of the same issues as Benjamin. Their little boy is doing great now and we might get to hang out with them all this weekend. Can't wait!

January 13, 2008

Developmental clinic visit

We took Ben back for another visit to the developmental clinic. The hospital where he was in the NICU runs a clinic to evaluate at-risk kids for developmental delays. It's really nice to be able to go in there and see all the different specialists all in one visit. It's so handy and nice, in fact, that we decided to go back even though we had a pretty bad experience last time...you remember...the "h" word?

This time the visit went much, much better.

Here are his stats:

Weight: 18lbs 3oz (not bad for being off food for 4 days!)
Height: 27.75 inches
Head circumference: 45cm

Woo hoo! He's a growing, thriving boy and it's just so thrilling. Lots of kids with this VATER business have difficulty gaining weight and are closely monitored for "failure to thrive"...awful term! Obviously we have no problem there. Yay!

First we met with the occupational therapist who also evaluates for phsyical therapy. Maybe you're like us and see "occupational therapy" and it makes you laugh and think things like, "Oh, so what's his job huh?" Well! Occupational therapy for a baby includes improving self care (like feeding - grasping a cup), social skills (eye-contact), fine motor skills (finger strength and dexterity), and gross motor skills (balance and coordination). Pretty cool, huh?

The therapist was so impressed with Ben. She said he's doing GREAT considering all he's been through. He's scoring in the 50-75th-percentile and that's just plain amazing. What the scoring doesn't show, though, is some of the asymmetrical stuff going on in his body. He's still tight on his left side, favoring the left side, asymmetrical with lower tone on the left side, and has slight torticollis on the left side of his neck.

Oh my gosh, WHAT is torticollis!?!

Hee hee. Well, it's basically just tightness in the muscles on one side of the neck. We happen to know a very lovely little girl out there with the same thing and are quite honored to be in the torticollis club with her. (Ben waves to his possible future-wife, Eleanor.) Hee hee. It's nothing a little physical therapy can't fix.

We had a little argument about Ben's head being flat. In the past we've heard a few nurses complain about his head being flat, so this isn't a new thing by any means. But, this was the first time we've heard them consider plagiocephaly. Phoey! Don't buy it for a second. Take one looks at Ben's dad's head and it's plain as day he just has his dad's....well...rather flat head! (Sorry Mike!)

True, Ben's head is a little flatter on one side - the left of course - and that's not ideal. They say it goes along with torticollis. Typically the first round of treatment for plagiocephaly is to try out different sleep positions - the idea being that the head is flat because the baby sleeps on that side all the time due to the tight neck. Well, Ben sleeps on his stomach so that's not it. So, then the sweet, young lady who was in the room as an observer getting trained as a physical therapist pipes in with, "Oh, he can just wear a helmet then!"

Uhhmmmm, hell no.

Let's just say we had words - the result of which is the observer/student was asked to leave the room and never come back and Ben will not be wearing a helmet. Really his head is not that flat, heredity considered, and when sleep positioning doesn't work physical therapy is the next step and he'll be getting that anyway. And just...NO. No helmet. No no no.

Okay, back to the story. The occupational therapist recommends we get a very experienced physical therapist to work with him and she's skeptical we'll be able to find one through early intervention. So, everyone cross your fingers that our health insurance will pull through for us there.

Next we saw the speech therapist. "Speech!" you say? Yes. The speech therapist checks to see if Ben is using his voice to relate to his environment...you know, all those cute noises babies make. She wanted to know what kinds of sounds he's making and if he responds to sounds from us like when we say his name or tell him, "no!" She was also interested in his eating. We told her how he's still not really eating solids. But, he hasn't had a chance! Every time we've started solids and really gotten him used to the whole spoon thing he goes into a surgery and can't eat anything for days and then it's back to square one again. Bah! He still seems to have quite the tongue-thrust reflex and gags on anything with the slightest bit of texture - like peas. She had some interesting advice.

The speech therapist recommended encouraging him to gum on long things that he could get into the back of his mouth - carrots, celery sticks, jicama sticks, or any long toys. She said this would help move his gag reflex back further in his mouth. Worth a try! There really aren't any speech concerns with him at all, though, so YAY!

Next we met with the developmental clinic nurse. She just wanted to know if we had any concerns and we just generally chatted. She said, just like the last two people we met, how impressed she was with Ben.

Next came a doctor, some sort of resident, to do a quick physical exam. She looked at his charts outside the door and then came in to meet us. Then she looked at his charts again and asked, "Benjamin?"





Then she gave him his physical and noted, again, the tightness in his neck and the asymmetry going on with his left side. Blah blah blah. Then she looked at his chart again and asked about his past medical treatment. She finally shook her head and said, "I really just can't believe THIS baby matches THESE papers. He just looks so good!"

Tell us about it! And this was pretty much every one's reaction.

Next was the audiologist. We sat in a sound booth and Ben got to listen to a bunch of tones and smile at the pretty flashing lights. He passed with flying colors. Hurrah!

Finally, we met with the clinic doctor...yes, the infamous h-word lady. She said they would be prescribing physical therapy. She went on to explain that if you just took into consideration their evaluation there that day he wouldn't necessarily need physical therapy. However, they take a more holistic approach and also take into consideration his medical history of 5 hospitalizations, 4 surgeries, vertebra deformities, and spinal cord issues. She said he's "on the cusp" by failing to meet some milestones, having poor reflexes, and having "low tone." Again, she said he's doing really well considering.

So, physical therapy it is! We're excited about it, really. Now we just have to find the right person and probably spend hours on the phone with the insurance. Fun! Ha ha. He'll be back at the clinic again in another 6-months.

January 11, 2008


Wow have we ever taken a break from this blog!!! From the number of complaints and inquiries we've gotten, we gather some of you might be going through withdrawal. Haha. Well, hopefully this update will cure your withdrawal jitters.

The fact is, we just haven't had much to write about and that's a really good thing! Actually, we've had tons and tons and tons to tell you about what a wonderful time we've had the past few weeks. Ben has been amazing, happy, healthy and everything we've ever hoped. We've spent loads of time with family and friends and just plain enjoying ourselves. We took a much-needed break from medical junk and finally just relaxed. We've been like a normal family! It's been so great!!!!! Unless you know, you just can't imagine.

We ought to confess up front that in the chaos of unpacking we haven't yet located the cable that hooks the camera up to the computer, so there aren't any pictures to share right now. Please, no hate mail! There will be pictures again, we promise. Be patient! Please!!!!! Ha ha.

So, what's is Ben up to these days?

- Crawling!!!! (Not gonna walk?! You just watch, Dr. Boxy!)

- He kinda pulls himself up on things sometimes.

- He LOVES standing while you hold his hands.

- He double-LOVES jumping jumping jumping.

- He says, "Da da" allll the time!!!!!!

- He is eating oatmeal every day.

- He is trying out different foods like carrots, pears, green beans, peas, prunes and stuff.

- Peas made him gag. Ewww.

- He can sit up from crawling all on his own, but he always seems surprised by it. Very cute.

- He loves touching things and turning them over and just figuring everything out.

- He did something handy! He unscrewed the nipple from his bottle.

- He sits in a highchair now.

- He does this thing where he sort of holds out his index finger. Owen's parents call it his "I just thought of something!" pose.

- He plays with a sippy cup, but doesn't drink much out of it.

- He gives his mama kisses all the time and has given a few out to a select, special few others, too.

Oh the list goes on and on. Ben is just doing so well, it's impossible to explain it here. For anyone who has sent him wishes, prayers, hopes, good vibes or whatever...they worked. They really, truly did.


January 06, 2008

We are HOME!

This mobile text message is brought to you by AT&T

We're on the road again! Finally headed home from visiting the Batey grandparents in Ohio.

This mobile text message is brought to you by AT&T