June 30, 2008

Hee hee.

Hee hee. This afternoon I got Ben set up with his lunch which was pretty much all finger foods. I woofed down my sandwich and while I was waiting for him to finish lunch I picked up the guitar. Grandma Linda gave Ben a book of children's songs and just as I was really getting some finger picking down for "Turkey in the Straw" I realised Ben was being awfully quiet.

Note the grilled cheese still in his grasp.
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June 27, 2008

Time will tell

Ben had an ultrasound done on his kidneys and bladder this afternoon, followed by an appointment with the urologist.

Good news!!! His kidneys look great. The hydronephrosis (swelling) is gone! Gone! There is no evidence of any scarring or damage. Yay, yay, yay, yay, yaaaayyyyyy!

There are still issues with his bladder. The bladder wall is a little thick and the capacity is still high. But, as long as his kidneys are okay and he doesn't get urinary tract infections it's not dangerous. We'll continue to keep a close eye on his kidneys with another ultrasound and follow-up appointment every 6-months.

We talked about the possibility of a couple of different surgical options (augmentation and mitrofanoff) if needed in the future. They're both a little Frankenstein-y so hopefully we won't have to go there. Cool thing, though, is that our urologist is somewhat of a pioneer in robotic-assisted laparoscopic surgery.

There is a chance - don't know how good - but there is a chance Ben will "grow out of" these neurogenic bladder issues. There are lots of nerves and stuff that still have to heal and grow after the tethered cord release surgery and it's possible he'll grow to accommodate his bladder capacity.

Time will tell...like, maybe a year, he said.

In the meantime, we still have to be extra vigilant about urinary tract infections. Basically, any time Ben has a fever or other symptoms of a UTI we need to check for infection ASAP. Instead of going to the ER next time this happens on a weekend, though, we can collect the sample at home because they gave us our very own urine collection bags. Woo hoo!

(Hey, if you waited around an ER for 14-hours for your kid to pee, you'd be woo-hooing, too.)

So, all-in-all the day brought good news. The kidney news is just the greatest. What a relief! The future is still uncertain and a little scary, but...heck...if anyone can heal from or outgrow issues like these BEN CAN.

And here's a picture of Ben getting ready for his big day...little toothbrush thief!

Kidneys are perfect! Hydronephrosis gone!!!!

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June 26, 2008

Dinner was late

Dinner was a little late (but deeeeeeeeelicious) so Ben got to play on the window sill. The playroom was, shall we say, a little too crowded for comfort. This is the first time we've stayed here when this placed looked...well...used. In the past it's felt like we were the only ones here and everything was so new and pristine. I was almost happy to see some Cheetos ground into the carpet.

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Arrived at Ronnie's

We arrived at Ronnie's about an hour ago. You know...Ronnie?...as in Ronald McDonald? Har har har.

When we were unloading our stuff in the parking lot I heard a lady say, "See! There's Benjamin!" and two lovely girls came over to fuss over him. It was Tommi and two of her daughters. She commented on our earlier post - we met her this April when one of her daughters had an appointment in the same office as us. Anyway, she's staying here, too. It's SO nice to see a familiar face, but sad that it's at the Ronald McDonald House and not at IHOP or the park or something.

I'm working on convincing Ben to take a nap. Wish me luck! Haha.
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June 25, 2008


We have an appointment with the urologist this Friday and, well, I'm dreading it.

We were supposed to see the urologist for a check-up some time in July or August but he requested we bump the appointment up after our stint in the emergency room. Hey, chances are we'll leave with things pretty much as they are...a neurogenic bladder, some scar tissue and whatever in his urethra, and hydronephrosis in the kidneys.

That would be FINE BY ME.

It's just...ughhhhhhhh...it's like we've been "normal" since April's surgery and then this stupid emergency room visit landed us right back in cuckoobananaland. I'm sitting here wondering if his kidneys are being damaged, if he's going to need another operation, if he's in pain. I imagine us leaving Friday's tests and appointments with some new, crazy life to learn to live.

I just wish I could be sitting here worrying about what preschool he'll attend.


June 18, 2008

Something "normal"

Well, there's nothing like something "normal" to point out your non-normal-ness. We're pretty sure Ben has/had a common childhood virus called...

...nah, that's too easy. Keep reading...

At first he was just super-clingy and wanting to be held all the time. That worked out great because a whole bunch of people were visiting for his birthday party and loved nothing more than to carry him around. He ate a little less that first day. He felt warm, but we didn't really even think to take his temperature because our air conditioning was broken so we all felt hot! But, eventually the clingy-ness turned to fussiness and that's when the thermometer came out. Yeah, he was feverish alright. He was pretty lethargic, too, and pretty much refusing to walk or crawl. He kept falling asleep at odd times. His temperature just kept going up until it finally decided to start hanging around 103F. His dad had enough and wanted to go to the ER. Mom wasn't so convinced, but went along with it anyway because she figured she'd rather have some other people (the ER staff) share dad's worries with isntead of having them all lumped on her all night.

So off to the ER we went.

We came back home with more questions than answers...and way less sleep. That night his temperature kept going back up again even with the Tylenol and Motrin. We didn't have the results from the urine culture or blood culture, so for all we knew he had a urinary tract infection or sepsis. Good grief. Finally he calmed down and fell asleep at about 1:00a.m. and 100F.

Oh yeah, and our internet was down - horrors! Talk about the worst timing.

The next night was finally fever free...woohoo! The excitement was short-lived, though, because then his temperature started getting really low. There were a couple of hours when it was reading at 94F and a few takes were even lower. Mike called the pediatrician who said to take him back to the ER if it went below 95F. He called the resident-0n-call who said to bring him back to the ER. He woke up Ben's mom who said, "No way! I'm too tired. I haven't slept since day before yesterday. You take him."

He didn't.

Next day his temperature was back to normal. He was so stinking fussy and, again, just wanted to be held constantly. The next day was a little better - still awfully clingy and more naps than usual. And what about today? Well, today he's right as rain and back to his usual, happy self...except for this rash.

Oh yes, he has a rash around his neck and chest and it has spread down his back. We haven't talked to the pediatrician about this yet, but we're really pretty sure the diagnosis is...


(Knock-on-wood because we still don't have the complete urine and blood cultures results back yet.)

Makes sense, huh? Looking back, we remember him coughing a little. At the time we thought he was being cute. We also remember his eyelids looking a little puffy, but they get like that from allergies and stuff.

Roseola is like THE most common childhood virus ever. Most kidos Ben's age with symptoms like these would never end up in the ER...probably wouldn't even end up at the pediatrician...certainly wouldn't end up the ER for 14-hours and then be told to come back the next night. No way.

But for Ben even the normal stuff just makes things seem more abnormal. He gets a fever and we sit around worrying about perforated bowels, a raging urinary tract infection, kidney failure, meningitis, and sepsis for goodness sake.

It's depressing and exhausting and a relief all at the same time.

June 17, 2008

Ben's temp is back to normal. His voice is hoarse. Virus probably.

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Last year...hotel.

This time last year Ben had his first trip to a hotel.

His Granddad was having surgery in Columbus, OH so Ben and his mom trucked down there on a whim to surprise everyone...BOY were Grandma Linda and Granddad surprised!

The other night we were trying to figure out how many different places Benjamin slept in his first year - Lutheran General, our home, hotel in Columbus, hotel in Lake Geneva, hotel in Lexington KY, Grandma Judy's, Grandma Linda's, Auntie Natalie's, hotel in Cincinnati, Ronald McDonald House Cincinnati, Cincinnati Children's Hospital, hotel in Staunton VA, Ronald McDonald House Chicago, Comer Children's Hospital, and probably some others we have forgotten. GOOD GRIEF!!!!
So, yeah, when you ask us things like "What time does he take a nap?" or "When does he go to bed?" or "When does he get up in the morning?" welllllllll now you'll know why we usually answer with -
"We don't have a schedule!"
Does the kid even know he has a home?!
His temp was very low and he was very fussy last night. Seeing the ped 2day.

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June 15, 2008

Discharged finally...still waiting on some test results. TIRED!!!

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Happy Father's Day!

What better way to spend Father's Day than in the ER?! Yeah, that's right. We came to the Comer ER last night (Saturday) because Ben had a fever all day and was not being himself - lethargic and very fussy. No runny nose, no coughing, none of the it's-just-a-cold stuff. We were really hoping after the 2-hours in the waiting room they'd look in his ears and say "ear infection" and send us home. But no.

He has blood work done that shows his white blood cell count is low. The resident told Mike that this could mean he has an "overwhelming infection". She said that if they didn't know his medical history they would suspect AIDS.

She wins the award for "Most Accomplished at Totally Freaking Out the Parents" right?

Our nurse last night wins the award for "Best Stick Ever" as she got a blood draw with the very first try AND started an IV line with the same stick. That has never, ever happened before.

They were talking about doing a spinal tap last night to check for meningitis. Fortunately, neurosurgery decided against that this morning. (We are officially in love with the neurosurgery nurse practioners here, by the way. The residents aren't half-bad either.) They have taken more blood to check for "hidden viruses" and we are still waiting for a urinalysis and chest x-ray.

We've been in the ER for 13-hours now. Time to call this thing a virus and go home!

Obviously, the birthday party of the century is canceled.

June 13, 2008

You know it's a really big deal when...

Obviously we're pleased as peaches that Ben is walking now. But, you know it's a really big deal when your pediatrician calls because she found out by word-of-mouth! I got a phone call this afternoon and I barely caught who it was because she just blurted out with, "I heard Ben is walking!!! That makes my weekend!!!!" Haha. I had mentioned Ben's walking to the nurse at our appointment on Wednesday. I think to really appreciate what he's doing you have to understand what he's working against.

I know when most people see Benjamin, either in person or in pictures, they think we're crazy for ever being worried about his walking. In fact, unless you see his scars or his radiology films you would never know anything was wrong at all. Well, if you haven't noticed already Ben's parents have become obsessed with his medical stuff. We have to be. If it was just one body system affected, if it was just one specialist we saw, we could leave it up to them. But it's not like that, so we can't because we are the ones responsible for making sure all of the bases are covered.

Believe me, we wish we didn't know every little detail of the insides of our child. We wish we could simply appreciate the outside like everyone else and say, "Pish-posh! We always knew he would walk!" But, perhaps by knowing the inside, too, we appreciate him more.

Continue reading if you'd like to know the insides a little better, too...

What would stop Ben from walking? Here's the list:
  • Incarcerated left hemivertebra T8-T7- T6; Scoliosis apex right of 19-degrees
  • Thoracolumbar fused vertebra at L2-L3-L4 (or an L4 hemivertebra); Kyphosis of 36-degrees
  • Rib anomalies at 3rd and 4th ribs on right; Possible rib fusions
  • 11 rib pairs on right, 12 pairs on left
  • Flexion contracture of left hip 15-degrees
  • Mild left hamstring contracture of 5-degrees
  • Fatty filum tethered cord
  • Syringomyelia
If you're like me, you have woken up in the middle of the night wondering, "What is an incarcerated hemivertebra anyway?!"

Yeah, so, you're probably not like me and that's okay! But since I'm looking all of this stuff up and trying understand it for myself I figured I might as well share it with Ben's fans as well. So, let's pick bones...

Ben has an incarcerated left hemivertebra in the T6-T7-T8 location which causes scoliosis.

(Woah! What did she just say?!)

Yeah, I know. See that's why I keep a notebook - THE notebook - which comes to every appointment so I can write down these things crazy things doctors tell us. Okay, so "T" stands for "thoracic" and that's the area of your spine and supports your ribs. Here's a picture.

The number indicates which vertebra it is - they're numbered in order. Now that we've seen four - yes FOUR - different orthopedic surgeons we've discovered that a rose is still a rose. Some surgeons say the hemivertebra is at T6 and some say T7. It just depends on if you count the hemivertebra as a vertebra or not. Personally, I'd call it T6-and-a-half but that's the kind of thing only orthopedic surgical residents with decent sleep find funny.

Okay, back to the incarcerated left hemivertebra in the T6-T7-T8 location. A hemivertebra is basically a vertebra that didn't grow all the way. There are several different ways a vertebra can not-grow. Here are some pictures.

Top left: anterior central defect.
Top right: incarcerated hemivertebra.
Bottom, from left to right: free hemivertebra, wedge vertebra, and multiple hemivertebrae.

You can see in the picture how the incarcerated hemivertebra is inbetween two vertebra that are also somewhat deformed, but in a good way so they support each other. Cool.So, a hemivertebra usually causes scoliosis - a curve in the spine. Last time we checked, this hemivertebra caused a 19-degree curve which isn't so bad. The risk of progression of scoliosis with an incarcerated hemivertebra is relatively low compared to the other types of deformities. The curve may become more curvy, or it may stay the same, or heck maybe even get more straight. Whatever it does, the change will happen slowly which is good!

Ben has a thoracolumbar fused vertebra at L2-L3-L4 (or an L4 hemivertebra) which causes kyphosis of 36-degrees. Check out the spine cartoon again to see where the lumbar area is. Ben has a fusion going on in there...or another hemivertebra depending on the orthopedic surgeon you're talking to. We're pretty sure at this point it's a fusion built around another hemivertebra. Here are some drawings of what fusions look like - Ben's fusion looks like the one on the left.

This causes a curve in the spine, but instead of being side-to-side like scoliosis, it's front to back so it's called kyphosis. Kyphosis often happens higher up in the back and causes what most people know as a hunch-back. Luckily, once again, because it's in his lower back it may not ever be noticeable. Just like the other hemivertebra stuff, this is a wait-and-see thing.
So there are several things going on with Ben's ribs - fusions, deformities, and one is missing. It's not a huge area of concern (yet) because things seem to be growing well. If you really look at his chest you can see that one side is uneven. This could have something to do with the torticollis (neck stiffness and head tilt). These problems could also cause him to Yet again, this is a wait-and-see situation which probably won't need intervention unless it starts to interfere with his lung and heart growth.
These contractures are pretty much just tightness, or a reduced range of motion, in his legs. They are both pretty mild. Maybe now that he's had some physical therapy these contractures will have improved.
As you know, Ben had surgery in April to release his tethered cord. A tethered cord means for some reason the spinal cord is being stretched and this can cause nerve damage and create terrible problems with development as a child grows. There's really no way for us to know what damage the tethered cord did. But at least we know it won't do further damage. Well, as long as it hasn't re-tethered and there isn't a lot of scar tissue.
Syringomyelia is basically a cyst, called a syrinx, inside the spinal cord. Is that scary sounding or what?! It could have been caused by the tethered cord, so hopefully by releasing the tethered cord we'll have stopped the syrinx from growing bigger. A syrinx can cause nerve damage, too.
And then there is the big unknown. Obviously there are quite a few things that didn't quite develop properly before Ben was born. We will probably never know the extent of it all. At this point things are still growing and changing so fast it's hard to keep up. We still worry there is some other big thing that we don't know about yet...or many big things.
But, like our pediatrician said, Ben is doing his own thing. There just aren't terms for it...there aren't tests...there aren't reports that can be written that could possible describe him.

June 12, 2008

911 PSA

I have heard from several people about the problems caused by non-emergency 911 calls like ours. Basically, people with real emergencies get put on hold and those few seconds, or even minutes, can make all the difference.

I just sort of thought it was really embarassing and I was worried the police would show up at my door just to check for sure or something. Lesson learned!

Cell phones, even ones with the SIM card removed, are able to place emergency calls. Don't let your kiddos play with them. Don't let them play with your phone either.

I mean, I personally think Ben might be the smartest 13-month-old ever to exist, but I'll bet it wouldn't be too hard for your kid to figure it out, too. I just might time him/her longer. Hee hee.

Looks like that phone works

I'm sure I'm not the only mom out there who gave up on trying to keep her kid's hands off of her cell phone. It seems unfair, really, to deny a little guy the pleasure of the tiny little box covered in buttons and flashing lights, making fun sounds. So, I just took the SIM card out of an old phone and gave to him.

It's actually a smartphone PDA thingy so turned off the phone part, too. Even when the phone was on (because who am I kidding? Ben could totally figure out how to turn the phone back on) I tried making some calls from it and it said it needed the SIM.

Yeah, so I just found out that Ben can still call 911 with it!

Thank goodness I heard the lady on the other end say, "911 Emergency" and was able to explain right away.

"No emergency! My son just accidentally dialed you."

He was sitting there going "Ooooo!!!" and reachng for the phone.

The 911 lady laughed.

June 11, 2008

Note to self: The world is good

I started out today with a great reminder about the good in this world.

Ben and I were on the way to the pediatrician for a blood draw to check on his anemia. I was sort of anxious to find out if all this iron-fortified cereal we've been pushing in him and the iron supplements have paid off. This wasn't some huge, life-altering appointment or anything but still it was another test and the anxieties that go along with it.

On the way to the appointment I got a phone call on my mobile phone from a number I didn't recognize. That usually means it's one of two things:

1) Someone who wants to rent an apartment. I seems as though my cell phone number is mistakenly listed in some sort of advertisement for a rental. I suspect it might be in a Hispanic newspaper or neighborhood because everyone who calls speaks Spanish.

2) A medical-type person...a nurse calling to talk about upcoming tests, someone calling to confirm an appointment, a survey about our past hospital stay experiences, Advocate hospital sending us to collections, etc.

So, you can imagine my surprise and delight when the voice on the other end said, "Batey!" I knew right away it had to be someone from my old workplace because for some reason we got into calling me by my last name only there...like it was a football team or something. Haha.

She said she just had to call when she saw the videos of Ben walking. We last saw each other nearly 2 years ago. I haven't heard from her (or her from me) since an email shortly after Ben's birth. And there she was telling me that she's been checking in on my son and praying for him since then. It just sent tears down my face to hear that...and I know there are who-knows-how-many more out there just like her.

From the very beginning - and I'm talking like those first few days after Ben was born when we were in the height of trauma and stress - from the very beginning we were shocked, impressed, overwhelmed by the flood of good that washed over us. It took the form of friends and relatives who drove crazy distances and stayed up until crazy hours just to take care of us, phone calls, cards, emails, and messages, various groups and churches praying for us, support from all corners of the world. We actually laid in bed one of those nights and remarked about how although we were going through (knock on wood) one of the worst experiences of our lives, we hadn't felt that loved and supported since our wedding day.

Do you remember how you felt on your wedding day? I mean, can you imagine feeling that way at a time like that?

For no reason in particular I so needed to be reminded of that goodness this morning. And I have to say thank you...too all of you out there - family, friends, strangers - who have helped us in this crazy journey. I hope you'll never, ever have to know what it means.

(Ben's blood test came back just fine...the anemia is gone!)

June 09, 2008

Last year...sunbathing.

This time last year we took Ben out to play in the yard...well, okay, he mostly just layed there and napped.

June 07, 2008

One small step for Benjamin...

Oh who are we kidding...these are not small steps. They're HUGE!!!

It is 394 days from the day we were told "he may never walk or worse."

34,041,600 seconds
567,360 minutes
9456 hours
56 weeks (rounded down)

In your face, Dr. Boxy!

Ben has had physical therapy for an hour every week. We do exercizes at home every day and lots and lots of structured play. We've seen 4 orthopedic surgeons at 4 different hospitals and have been told everything from "may never walk" to "might walk but will definitely have a limp" to "wait and see." Well, no more waiting.

Walking to mom...

Walking to dad...

As if accomplishing the art of walking wasn't enough for one day, Ben decided that he needed to figure out how to stand up on his own, too.

If at first you don't succeed, try, try again...and again and again.

After a while he ventured out into the hallway. It was so funny how he approached the door way. It was as if he thought maybe this whole walking thing might not work outside of his bedroom. Turns out it did.

June 03, 2008

Par-tay! June 15th

We've decided to have a big ol' birthday party for Benjamin after all.

June 15th at 2:00p.m.
Our House

Wanna come? Just email us at rebeccabateyfradin@gmail.com

Yeah, we know it's Father's Day (and it happens to be Mike's birthday), but what the heck that's what happened to work for most of our family and stuff. Woo hoo!


June 02, 2008

Bathtime is the best time

If you asked us what the best time is in our house, we would easily tell you bathtime.

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Uncle Sam doesn't want VACTERLS

The other night I got a call from a military recruiter who got my number from McHenry Community College where I took classes a while back. He was calling to see if I might be interested in serving.

(Yes, it's okay to laugh.)

I laughed and said no, but as you probably know "no" isn't good enough and he wanted a reason.

(Yes, it's really okay to laugh.)

So I said (yes, laugh!), "Well, I'm 31-years-old and I have a 1-year-old with about a dozen different birth defects, so I'm really too old and kinda busy."

A moment of silence was followed by, "Oh okay, well thank you. Bye."

I'm guessing he was filling out some sort of form and searching for the right box to check. I'll bet $5 he checked "Reason: other."

But, it got me thinking how perhaps one silver lining on the huge, black cloud of VACTERLS is that Ben will mostly likely never be drafted. Now, I'm all for joining the armed services if that's what you're inerested in, but I will fully admit that it's a relief to think that one thing I probably won't have to worry about is my child being drafted and hauled off to battle in the front lines. (I get to worry about nerve damage, kidney failure, and other junk instead.) Human nature being what it is, I suppose he'll likely end up being drawn to the things he can't have and want to be a fighter pilot when he grows up. Sigh!