July 26, 2007

No tethered cord!?

Benjamin saw the neurosurgeon today. The good news is that he doesn't have a tethered cord!!!! The bad news is that he may need tethered cord surgery because he has a fatty filum. We will re-check it with an MRI when he is 1 year old. Here is the medical mumbo jumbo:

Fatty filum (also known as "tight filum terminale" and "thickened filum"): the filum terminale is like a thin elastic band, about 8 inches long. At the top, it is formed from one of the layers of tissue surrounding your spinal cord, and extends from the bottom of your spinal cord to the tip of your tail bone. The outside of the "elastic band" has a few nerve fibres sticking to it. The filum terminale works as an anchor for the spinal cord. For people with normal anatomy, the filum stretches when they bend over to allow the spinal cord to move up in the spinal column and then goes back to normal length when the person straightens up and gently pulls the spinal cord back to its normal position. When the filum is fat-filled, fibrous and tight, it will not allow the spinal cord to move up and down within the spinal column, and so the spinal cord and the nerves end up being stretched instead of the filum. In most people this causes nerve damage.

As we like to say these days - there's a surgery for that! The surgery to fix the fatty filum is the "simplest and least risky of untethering procedures."

We also learned that he has fused vertabrae at L3/L4. This just came up as an aside...we will follow up with the orthopedist.

July 25, 2007

Stood up by a neurosurgeon

Grrrr. We just got a phone call from the neurosurgeon's office and they've canceled our appointment on Thursday. They will call back to re-schedule. We told them we'd come at 2:00 a.m. if that's what it takes to find out about Ben's spinal cord sooner rather than later.

What's so great about knowing? Either it's tethered or it isn't. Either he needs surgery or he doesn't. It's not like it's bothering him now or anything.

So, why do we HAVE to know NOW? We just do. It's totally irrational and illogical, but we do.


UPDATE: Just heard back from the neurosurgeon's office and we're back on for Thursday! Yay.

July 24, 2007

Play time

When Ben isn't doing the weird stuff like MRIs, he's just a normal little 10-week-old. He wanted you to know what he looks like when he's jamming out to his Peek-a-Boo Piano (thanks Linda!) and his most favorite Sassy Mobile.

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July 23, 2007

Ehm! Argh! Aye!

We're back from the MRI and things went well...always an adventure, of course. We won't have the results about the possible tethered spinal cord until Thursday when we meet with his neurosurgeon.

Today didn't go quite as we had planned/expected/feared. Instead of making the infinitely-long drive from McHenry to Park Ridge we stayed with Ben's grandparents in Evanston which is about 20-minutes from the hospital. This meant we could leave at 6:00 a.m. Ben, who hadn't eaten since 2:00 a.m. slept the whole way and didn't fuss a bit. He got to travel in style - in his brand new car seat!

...which is now soaked in poo.

Yeah, that's right. Poo. When we got to the hospital and took him out of the car, his dad noticed that he was completely soaked in poo. Poor little guy. And he didn't even fuss!! So, we laid him out on the hood of our car (our rental car, that is...still no sign of our stolen car), changed his diaper and replaced his bag. We got to the check-in desk promptly at 7:00 a.m.

As we worked with the nurse on various paperwork, Ben fell completely asleep. This gave us the crazy idea that maybe we could get him through the MRI without a sedative. Crazy, we know, but why not try? So, we hurried off to the radiology department. Ben got earplugs (adult plugs cut in half) and then all snuggled into the collar and wrapped in blankets. So far so good. They slid him into the tunnel. His mom got to stay in the room with him to keep an eye on things and talk to him and stuff. His mom will tell you that MRI is loud! He stayed asleep through most of the tones, but when the machine started making these really low tones, Ben woke up and started kicking. MRI #1 over. Ehm!

They slid him back out of the tunnel and gave him the oral sedative, chloral hydrate. This drug, for the record, is known for the Mickey Finn - a drink laced with a drug for the purpose of incapacitating someone ("slipping a Mickey"). He drifted back to sleep and got slid back into the tunnel. The test started again and things seemed to be going well. He got much farther along this time than last. But, again there was a problem. The technician said something on him was interfering with the image. The gosh-darn colostomy bag! It seems something in the adhesive was causing a problem with the images. So, off the bag came...just three hours after it had been put on. Boooooo. MRI #2 over. Argh!

They "slipped him a Mickey" and back into the tunnel he went. The technician said, "Third time's a charm!" He was right...thank goodness. Everything went smoothly. MRI #3 did the trick. By the time it was over (4-hours later) Ben was once again covered in poo. At least this time it was all over the hospital blankets and not his super-cute outfit. Aye aye aye!

It took about an hour for him to wake up and eat, at which point we were allowed to leave. Our discharge instructions were to...get this...watch him sleep. You know, to make sure he keeps breathing and all. Like we're not paranoid and wound up enough as it is. Well, Ben is at home, well fed, snuggled on the couch, breathing in and out and looking good. His parents just devoured a fabulous dinner dropped off by one of the church folks (talk about much-needed nourishment).

We'll see on Thursday what comes of all of this. In the meantime, we have the images on a disk and can't help but pour over them trying to see if we can find anything. (Hey, are those the car keys??)

July 21, 2007

Ben is grounded

As we were getting ready this morning for our nephew's birthday party we discovered our car missing from the driveway. That's right -- our car was stolen right out of our driveway!

What's really a bummer is Ben's car seat is in that car. So, he is officially grounded...no more driving for him.

It is sort of amusing to think of some teenagers joy riding in a 13-year-old car with a car seat and diapers in the back.

Ben wants everyone to see how he got all dressed up for Aaron's birthday party at the pool.




July 20, 2007

Leave well enough alone

Over the past 10 weeks we've gotten used to our new lives with Ben. We could teach a class in caring for a colostomy. We're pros at feeding him, burping him, playing with him. We're used to the problems he has.

How about we just leave well enough alone?

Ben's MRI is Monday and I really just don't feel like doing it. We'll leave our house around 5:00a.m. to get to the hospital in time to sedate him for the exam. He will probably either be freaking out or else passed out from freaking out because he won't have eaten since 3:00a.m. On the way we'll remember how we used to drive back and forth from that hospital during those early days and wonder if this would be the last time we'd see him.

When we get there they will hook him up to monitors again. He'll be fed an oral sedative which he'll suck down eagerly and unwittingly. Maybe I'll get to hold him while he'll slowly get sleepy and eventually drift off. We'll put him in a portable incubator and walk with him to the examining room. We won't get to go in with him and we'll wait in a nearby waiting room. Maybe we'll play Tetris on the Nintendo there again. We'll read the old magazines available on the coffee table and we'll pretend for each other that we're not nervous or worried. Mike won't be very good at this, but I'll deserve an Academy Award.

They'll bring him back out and then we'll wait for a few hours for him to work his way out of sedation. We'll watch the monitors again and live and die with every heartbeat and every breath. We'll think about his next surgery and how much harder it will be now that we know him and have fallen in love. He'll wake up eventually and should be so hungry his cries could shatter glass. I'll spend a great deal of energy convincing Mike he's crying because of hunger and not pain.

Then we'll go home and WAIT UNTIL THURSDAY to find out if he has a tethered spinal cord...find out if he has yet another surgery in his future...find out if there is something else to worry about.

Can't we just leave well enough alone?

- becca

July 19, 2007

Little fish / Big ocean

Here's a group photo of all the VACTERLS kids at the conference. Can you spot Benjamin? He's the "little fish" being held by the boy in the red shirt. Such a fabulous group of kids.

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July 17, 2007

Travellin


This guy is such a great traveler. So far, he's made two trips to Ohio (9-hours one way) in one month...a perfect angel each time. In two months he's been in 4 states - Illinois, Indiana, Ohio, and Kentucky. This guy gets around!

July 12, 2007

Friends...

...and they have the matching shirts to prove it.


Owen and Ben

July 10, 2007

2-month check-up

Guess what Ben got for his 2-month birthday?!?!?!?!?!?!

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A bunch of shots!



That's right. Ben had his 2-month check-up with the pediatrician today and got four shots in the thighs and an oral inoculation. The nurse did a huge song-and-dance about how he would get very upset and how awful it was going to be and how we'd probably all be crying and having fits and oh-my-goodness were we in for it. Well, he gave a good scream for about 5-seconds and then promptly fell asleep. We can't say it enough...what a trooper!

Surely for normal parents this 2-month inoculation business is pretty traumatic. We've seen worse, though, so it didn't seem to be such a big deal. Well, okay, Mike did get a bit antsy, stood up suddenly and knocked all of Benjamin's papers on the floor. Benjamin has an awful lot of papers, so by the time Mike was done picking all of them up the action was over with.

An now for the answer to everyone's favorite question - "So how much does he weigh?"

Weight: 10lbs-15oz (25th percentile)
Height: 22-3/4 cm (50th percentile)


July 03, 2007

Play ball!

Ben attended his first baseball game!

It was a Copperheads game - the local team. They won, of course. Ben had a fabulous time sitting right behind the home plate. A local photographer asked to take this photograph and then emailed it to us. We're standing in front of a statue of Bob Wren. If you can believe it, Ben (7-weeks-old) was not the youngest fan in attendance. There was a 14-day-old there!

July 01, 2007

VACTERL Conference - part 2

VATER is pronounced "Vah-ter" (rhymes with "water") and VACTERL is pronounced "Vahk-tehr-el". So we learned something! We learned tons more. It's a bit overwhelming.


Basically, things are worse than we thought, but not as bad as they could be. There are many things we wish the hospital had made more clear to us...or had explained at all. It sounds like the care Benjamin will need after his next surgery will be difficult. It's also likely he will have life-long problems as a result of his intestinal defects. This was really never made clear to us before and is kind of a bummer to say the least. The surgeons presented things to us like they were all fixable. Dr. Pena explained that this is typical of surgeons - not to think past the surgery. It turns out that although the surgeries "fix" the problem, they don't make things perfect. That probably should have been obvious, but you just want so much to believe that everything is going to be okay. It's hard to accept the reality that Benjamin will most likely have to deal with this for the rest of his life - rather than just hear stories about where his scars came from.

Connecting with other parents and kids made the trip completely worth it. It was so nice to be in a room full of people who you don't have to explain yourself to. People offered us wonderful advice about caring for Ben's colostomy and what to expect and prepare for after his next surgery.


Again, it was a bit of an overwhelming experience and we're still processing everything, so this post just sort of scratches the surface of what we got out of the conference. So, so glad we went.