July 31, 2008

Spinal cord lookin' good

We just got back to the Ronald McDonald House from our appointment with the neurosurgeon. Gracious this has been a long day!

Good news all around!

The spinal cord is now ending much higher than it was before the surgery. This tells us that it was indeed tethered and being pulled and stretched significantly. The surgery has healed perfectly, so this is very good news since re-tethering is/was a possibility.

The cyst inside his spinal cord has not grown significantly, if at all. It's a very small cyst so it's difficult to measure, but it's good that we can't measure how much it's grown (if at all). It's not smaller, but as Dr. Frim said, "Maybe this is just how it is."

Sort of an interesting philosophy for our Benjamin, eh? Hee hee.

We're to follow up with him again next summer. No need for an MRI! We'll keep following up every year until Ben is in grade school and there are more "professional" eyes watching him.

It was such a good appointment that Ben and Dr. Frim spent most of the time blowing kisses to each other. I finally had to tell the doctor, "Look, he's not going to stop. In fact, he'll keep blowing kisses to you long after you've left the room, so if you're waiting for him to stop so you can leave you'll never get out of here."

Sayonara till next year neurosurgery people!

Time warp

Yeah, so we're still waiting!

We checked in at the clinic just before 10:30am and we just now got called back to an examining room. It's nearly 2:45pm. We still haven't seen the doctor yet, but at least we're in a room.

Ben is definitely back to his good old, happy self. Eating up tons of fruit and crackers while toddling around all over the place. He even blew a girl a kiss in the waiting room.

Ben in his sling

Posted by Picasa

MRI is done

Ben's MRI only took an hour! We were shocked because it took 3 hours last time. He was pretty agitated when he came out of the sedation. Shocking, too, because last time he was suuuuper groggy. He put on a good, loud show for everyone to let us all know just how dissatisfied he was with everything. Hee hee. Basically, when he was awake enough to fuss, he fussed big time and then he would konk out again. We kept rubbing his face with a cold, wet towel to wake him up. He finally woke up calm enough to request a cracker...it was the most pathetic little sign (yeah, he signs "cracker") you ever saw. But cute!

So, he's been released from the radiology department and he's tucked into his sling carrier and he's snoozing while we wait to see Dr. Frim. Hopefully when he wakes up he's in a decent mood and ready to eat and drink something.

Oh and by the way he's practically a celebrity in the radiology department now. I swear the whole staff - at least 8 people - stood around him and clapped when he blew them a kiss goodbye.

He's in the tube

Ben is getting his MRI now and they said it should take about 1.5 hours.

He was soooo good this morning. He woke up in the best mood and got up early enough to have some clear liquids for breakfast. It was hilarious. Grandma Linda put him in his high chair and gave him a sippy cup with apple juice and then chopped up some pedialyte popsicles and put them out on his tray. He just sat there and happily ate his breakfast like it was normal! Hee hee.

He only asked for something to eat once and didn't make a huge fuss when he didn't get it. He was even his charming, cute self when we got to the hospital and he put on a good show for the nurses and doctors. He did "THE HULK" and "TARZAN" - promise we'll get videos of those up on here eventually so everyone can see. Soo cute! Oh my gosh, those nurses made him do THE HULK about 50 times. I swear they wanted to show everyone who walked by.

The IV didn't go in so great, but it could have been worse. They tried twice on his wrist and then eventually got one in on his ankle. He absolutely howled. I'm sure there is at least one sedation nurse who will popping an extra zanax or valium tonight because of how sad it was. Awwwww.

Somehow I remembered this time to dress him in clothes with no metal snaps so he didn't even have to put on a hospital gown. For those of you parents out there who are in-the-know, well you already know how nice that is, but I'll explain it anyway -- probably one of the saddest parts of handing your kid off for something like this is that you're left holding a bag of clothes. So, when your kid can just wear his or her clothes you can avoid that dreaded bag!

Grandma Linda and I just grabbed some breakfast at the ABP - that's what everyone at Comer calls the Au Bon Pain. When Ben is done with the MRI we'll be able to be with him as he wakes up. Once he's released from there we'll take him over to the clinic and hunker down with some lunch while we wait to see Dr. Frim. As any Frim patient will tell you, that could be a LONNNNNNNNNNNNNGGGGG wait.

We'll update whenever we get a chance.

July 30, 2008

Yet another MRI

Ben is scheduled for yet another MRI this Thursday. They will be checking to see that his spinal cord surgery in April has healed properly. They're also going to check on the progress of this syrinx (cyst) inside his spinal cord.

Hopefully, the tethered cord was causing the syrinx so now it will not be any larger or heck maybe it's even become smaller. (Seriously, it still sometimes strikes me how totally cucukoobananas things are when I type sentences like this one and actually mean the "Hopefully"!!!!)

Calling on the FOB (Fans Of Ben...hahaha) to send out your best hopes, prayers, wishes, karma, vibes - or whatever it is that yousall have been doing all along - for...

...Ben not to be too grumpy in the morning about the whole not-getting-breakfast thing.
...the IV to go in easily and on the first try.
...the sedation to go smoothly.
...the MRI to go perfectly, getting all the images we need.
...Ben to wake up from the sedation peacefully.
...the syrinx to have become smaller.
...the surgery to have healed well.
...this to be the last MRI he has to do for a while (because, really, aren't FIVE enough in 14-months?!?!)

Thanks a million.

July 29, 2008

This time last year

Boy have things changed in a year. I don't want to jinx it or anything, but nearly every day lately I've had this feeling like it's over. Like all of the drama, chaos, uncertainty, stress, fears of the last year have finally come to an end. Maybe we're just used to it now or maybe things have really, finally simmered down.

This time last year we were told Ben didn't have a tethered cord and it was the first time we heard the term "Fatty Filum."

This time last year, Ben looked like this and our car got stolen out of our driveway.

This time last year, we were well on our way to making one of the most important decisions about Ben's health care. We had attended the VACTERL Network conference and had met Dr. Pena and were seriously considering traveling to Cincinnati for surgery. It seemed so crazy at the time...What? Go all the way to Cincinnati when Children's Memorial is practically next door?! Yes, and it was one of the best decisions we've ever made. Most importantly, it was the impetus for us to really start shopping around for Ben's medical care.

July 28, 2008

Pool boy

Benji's grandparents' neighbors have been so generous with their pool. Ben LOVES it.

July 27, 2008

July 26, 2008

Blennerhassett Broom

Here's another picture from our Ohio vacation. Ben is absolutely obsessed with cleaning implements now. Vacuums, Roombas, and small sweepers are his favorite but he is also quite fond of brooms and swiffers.

Here he is checking out the brooms at Blennerhassett Island's gift shop.

July 25, 2008

What Ohio fun looks like

Yeah, so obviously we haven't updated here in a while. We're too busy having fun and sleeping in. Haha. Part of "the deal" for Ben and I to come to Ohio for so long was that we promised tons of pictures for his daddy to look up on the blog.


Maybe I haven't complained loudly enough about my parents' crummy dial-up internet. (Who even has dial-up anymore, right?!) Haha.

Well here it is. Keeping up our end of the deal!

This is what Ben looks like when he's talking on the phone with his daddy.

And this is what he looks like when he finds an open container of creamer.

Ben loves a good ball pit.

Ben made a trip to Blennerhassett Island on a boat! But what really impressed him was the abundant supply of balls...erhmmmm...black walnuts, rather.

Running around Blennerhassett Island.

July 15, 2008

Ohio fun

Ben and his mama have been living the good life in Ohio these days...it's also the land of dial-up so it's hard to post here. We're staying with Ben's Grandma Linda and Granddad Richard and having a blast. Mama is catching up on sleep and Ben is getting so much attention. We've been spending a lot of time with our friends here, too...and Ben's best friend, Owen. Here are a couple pictures from Owen's house.

Oooo...tough guy!

When it was time for Owen to have a bath, Ben just had to be in on the fun.

July 03, 2008

NICU Developmental Clinic again

Ben went to the NICU Developmental Clinic again this morning. This is where we see a bunch of specialists who evaluate Ben for any developmental delays. We haven't had the greatest experiences at these clinics in the past...you might remember the helmet incident or perhaps the h-word?

This time it was totally different.

First of all, Ben is simply doing awesome. No, really...like SO AWESOME. So, if you don't like bragging, stop reading now. Hee hee.

The occupational therapist we saw was the same one we saw for the previous two clinics and she was going nuts about how well Ben is doing. His gross motor skills are at the level of a 14-month-old and his fine motor skills are testing at the level of an 18-month-old (wow!). She went on and on about how amazing it is.

Then we saw the clinic nurse who, again, we've seen at the previous clinics and she was so excited to see how much Ben has grown. She immediately remarked how much more at ease I was now versus the previous visits. She was going through a routine list of questions - Does he sit up on his own? Does he pull up on things to stand? Is he cruising furniture at all yet?

"Uhm, well, yeah...I mean, he's walking."

I swear she nearly dropped her pen she was so shocked. Then she wanted to know how many steps he could take and I told her, "Well, as many as he needs to get wherever it is he wants to go."

She said, "Sooooooooooo, he's walking now?! That's so wonderful!!! I think I might cry."

I thought she might, too, but she didn't. We reviewed his medical history since the last time we were in clinic and updated all of his new surgeons (geesh, sometimes it still strikes me as cuckoobananas that my son has surgeons). I told her about the neurogenic bladder, but the good news about his kidneys. She said, "Well, THAT's why you look so relieved and happy - all of the life-threatening issues are over!" So true. We then talked a bit about concerns for the future...a formidable list, but and easier one than we had a year ago for sure.

Next was the speech-language therapist to evaluate his eating and communication skills. Ben is a little behind in this area as he doesn't really say any words. But, whatever, he's had a lot of other stuff (like...ohhhh...his spinal cord and intestines for example) to develop and heal. He's not far enough behind now to warrant therapy, but we'll go back to see the speech-language therapist again in 3 months.

Next was a trip to the sound booth for a hearing test which he passed with flying colors. I, on the other hand, failed. It was pretty funny really. I was sitting in there with him during the test wondering why they only tested his left side with one tone (they play 4 or 5 different tones). On the right side they played them all, but on the left side they only seemed to play one tone. It took me a while to realise - later that night, actually - that it was MY left ear that had the problem. My ears have been bothering me for about a week and now I'm thinking it must be an ear infection. (I know...am I 8-years-old or something?! Sigh.)

We went back to our exam room and who should walk in the door but Dr. Boxwalla, the NICU Fellow, the infamous he-may-never-walk guy himself! It was kind of...well, shocking really. I actually jumped. He was there because I had asked the nurse about something we read in the echo cardiogram report from when Ben was first born.

Dr. Boxy explained that Ben was born with a heart defect (don't freak out) called Patent Foramen Ovale. It's actually very common - about 25% of the population has it. It is usually symptom-free and doesn't need any sort of treatment. We would never have known if it weren't for the barrage of tests Ben received. Still, isn't that NUTS?! Oh, I mean CUCKOOBANANAS?!

So, all in all it went well. They were so impressed with Ben's progress and abilities (not to mention charm). We have some speech-language catching up to do which I'm sure Ben will knock out in no time. And we have a heart defect to add to our list.

Just another day in the life of Super Ben!