February 28, 2008

Random photo - Napkin?

Nothing to really write about, but gosh it's been a week since the last post, so how about a random photo?

This was taken around Christmas time at Ben's Ohio grandparents' home. This is what sometimes happens with prunes...

February 22, 2008

Neurosurgeon nuts!

Phew! Yesterday was exhausting! Two neurosurgeons in one day and two different hospitals is really not the best idea. Ha!

Both doctors were very nice and pleasant. I'm still so overwhelmed by the day that I think I'll just have to go into more detail later. The basic gist is Ben is going to need a new MRI to really be sure about what's going on with his spinal cord. Both doctors agreed that his last MRI, in July, showed just a tiny bit of fat in his filum and it wasn't causing a problem. So, a new MRI will give us a better picture of what's going on now.

It's good news for sure and hopefully better news after another MRI.

My Aunt Barbara was our hero this week. She came with us to every appointment. She entertained Ben so I could talk with the doctors and she was my perfect sounding board - helping me sort out my impressions of these various doctors. Needless to say, Ben was just in heaven and his mama was way less stressed out.

THANK YOU, Aunt Barb!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

February 20, 2008

Urologist plans

Today we met with Dr. Kaplan, urologist at Children's Memorial, and we came up with a plan for evaluating Ben's urinary system. He was a very nice, patient man and was pleasantly sarcastic. No, really! Ben's mama digs sarcasm. Hee hee. Well first of all, he actually saw us early. Yes! Early! He took a very detailed history and asked a lot of questions about Ben's prior evaluations. He pretty much said he wouldn't give an opinion until he saw a good urodynamics evaluation. Fair enough.

For the first time that I can remember we actually had a doctor get excited when he heard we went to Cincinnati for Ben's surgeries because he actually knew about Dr. Pena and the whole program there. Dr. Kaplan said, "Oh wow! Well you guys really go for the best then!" That's right we do! (On Monday the orthopedic surgeon thought maybe we lived in Cincinnati...heehee.)

A couple other things impressed me about Dr. Kaplan. He said he didn't "want to go shoving a catheter in there blindly" (yay!) and instead wants to sedate Ben, do a cystoscopy, and then insert the catheter. Ben would then need to wake up in order to complete the evaluation. I asked if we could possible piggy-back the MRI onto this so he wouldn't have to be sedated again for that. Dr. Kaplan seemed dubious, but he made some phone calls and actually got it set up! He said it's going to be a little goofy because he's basically going to have to travel between three different locations, and two buildings, to do all of this. It's pretty much going to be an all-day sort of thing, but YAY for not having to sedate him twice.

Honestly, what I worry about most with any of these surgeries and stuff is the anesthesia, so I'm a very happy mama right now.

Tomorrow we will see Dr. Tomita, neurosurgeon at Children's Memorial, and then we're going down to University of Chicago Comer Children's Hospital to see the neurosurgeon there - Dr. Frim. I know it's crazy. I mean, only in cuckoobananas land would someone see TWO neurosurgeons in one day. But, that's where we live! It's kind of just a fluke. When I first tried to set up an appointment with Dr. Tomita they told me he wasn't taking new patients. Grrr. Ideally I'd like to get at least the neurosurgeon and orthopedic surgeon under one roof, so that's why I wanted to see Tomita. Well, finally, at the advice, of a quasi-family-member I called the appointment line and somehow, miraculously got an appointment with him. However, before I got that squared away I had made an appointment with Dr. Frim, who is really really hard to get in to see. They told us to plan to be there for THREE hours for god's sake. Anyway, I didn't want to give up that appointment because Dr. Frim is really, really experienced with spinal cord issues. So, we're seeing two neurosurgeons in one day. Ta da!

February 19, 2008

Physical therapy today

Today Ben had his very first session with a physical therapist. We're giving Lutheran General a shot for this and so far haven't been overly impressed, but they get a second chance. We got there very early for our appointment and the receptionist made the mistake of telling us our therapist was out at lunch. Well, she turned up about 15-minutes late for our appointment. Hrrrrmmmmm. BUT, she seems to know her stuff and showed us lot of exercizes to strengthen Ben's abdominal muscles and such. So...we'll give her a second chance next week and if she's even 5-minutes late we'll just leave. It would be as annoying if it hadn't take nearly a month to set up this appointment in the first place. She kept calling me and saying she didn't have her calendar with her and would call me tomorrow. Turns out "tomorrow" ended up being a week later. Grrrrr. Considering how far we're travelling for this stuff, we're just not going to put up with silliness like being late from lunch. Hee hee. Can you tell I was a little irritated?

Tomorrow we have an appointment with a new urologist, Dr. Kaplan, at Children's Memorial. Ben has never seen a urologist before; his hydronephrosis was being managed by a nephrologist. We're thinking a urologist makes sense considering he had/has a defect in his urinary tract and he'll be getting a urodynamics evaluation soon, too. We're hoping we get some more good news tomorrow.

February 18, 2008

Good news about the back!

We had an appointment today with our brand new orthopedic surgeon (that would be our third ortho, for anyone who's counting!). This is our marathon week of appointments. We're testing the local waters for some new health care providers for Ben and we've lobbed all the appointments together into one week.

So, today was our first appointment with Dr. Erik King at Children's Memorial. He was very patient and thorough. We picked him because we've been asking around and rumor has it he's a "great surgeon who also happens to be an exceptionally nice guy." Fits our bill! I told him so, too, and he thought that was pretty funny and said he'd pass that along to his wife. Hee hee.

Ben finally got a good, complete x-ray of his spine and along with it came some very good news. It turns out the area in his lower back that we thought were some pretty problematic fusions is actually much better than that. It's not a fusion, but rather just another hemivertebra which makes the x-ray from the side look like a fusion when it's not. This is very, very good news in the long run. That fusion business was nasty, but a hemivertebra could be harmless. So, we're back to just keeping good track of things and wait-and-see. We'll have a check-up every 6-months. Dr. King even said he thinks things look really good right now and he really doesn't think Ben will ever end up needing any sort of intervention (casting, bracing, or surgery). What sweet words!!!!!

And, lest you think Ben's good nature has gone out the window I assure it hasn't. This x-ray he had was pretty interesting. He sat in this chair contraption and they strapped him down - a strap across his waist, another under his armpits, and then straps holding each arm above his head. It was pretty shocking, to be honest.

Did Ben cry? Nope.

Did Ben fuss? Nope.

What did Ben do then?

He laughed, of course. He thought it was the funniest thing in the world. He just giggled and squealed with delight all strapped down. I swear it looked like something from some crazy horror movie...with the exception of cute, cute Ben. I'm sorry to say I didn't get a picture - I'm really kicking myself over that one. Oh well.

February 12, 2008

Snowed in and in pajamas

Nothing like a snowy day to give you the excuse to wear your pajamas all day. Here are some random photos from the day...

Time for mom and dad to re-think the location of the garbage cans.

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February 09, 2008

Nine-month pediatrician visit

Ben had his 9-month appointment with the pediatrician today and everything looks great! Here are the stats:

Weight: 19-pounds 3.5-ounces (30th percentile)

Length: 29.25-inches (80th percentile)

Head circumference: 45.5-centimeters (60th percentile)

In other news...he is officialy cutting a tooth. When we got up this morning he had the little top ridge of a toofer sticking up through his bottom gums. Bye bye toofless mouf....boohoohoohooooooo.

Hanging out in my pajamoose.
(Thanks Rick and George!)

Nine months old!!!!!

February 06, 2008

Wow that's snow!

We're supposed to get over a foot of snow by the end of today, so Ben and I won't be going to the physical therapy school in Wisconsin after all. We've had three people come by the house wanting to plow our driveway. Woo hoo!

This mama has been sipping on some delicious homemade hot chocolate today and is getting ready to make a lasagna for dinner. Perfect winter comfort food, no?

Ben is napping. I wish I could explain in words the new way he goes to sleep. He did it last night with his dad and again this afternoon for his mom. You hold him in your arms and he gets all snuggled in and then just looks into your eyes until his little eyelids fall...zzzzzzzz. OH MY GOODNESS there is nothing like it. NOTHING!

February 05, 2008

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Photos are back!

Yep! Photos are baaaaaaack!

We finally got ahold of our camera cable and can now upload photos to the site. Yipee! More to come...
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February 01, 2008

Just a little update

Wow! It's been a week since the last update! Looks like no news is usually good news around here then. Yep, everything is good here.

Ben is just doing awesome and that's all there is to it. He's crawling all over the place and when he gets where he wants he just pulls himself up to stand. Just like that! His personality is just shining through - he is so funny! This boy loves a good laugh. He is waving now and clapping. It's so cute! He'll just stop and clap and check if anyone is watching. His new fun thing is to headbutt himself in the mirror. Hee hee. Yeah, it's pretty darn funny.

*** We'll have pictures for you once we get ahold of our camera cable! ***

Hey, did you notice that you can get email updates about Ben? So fancy! Ha ha. Just follow the link to the right that says, "I want email updates!" When you sign up, you'll get an email version of every new post to this site. Oooo la la!

What's coming up?

Feb 6 - We're going to join our friend, Amanda, on a trip to a physical therapy school in Wisconsin. Ben will do a little show-and-tell and hopefully help educate a bunch of future physical therapists.

Feb 11 - Ben has his 9-month check up at the pediatrician. NINE months! Can you believe it?

Later that week - Becca's good friend from high school will be in the area so hopefully we'll get a nice little visit in and do the Ben show.

Feb 18 - We'll head into Chicago for a visit with a brand new orthopedic surgeon. Dr. Erik King has come highly recommended to us from a couple of different sources. As you probably know, we're looking for someone who is highly experienced because the stuff going on with Ben's vertebra is pretty complicated. Not such a tall order, really, but we also want someone who is NICE because we're going to be seeing this surgeon at least every 6-months for...well, forever! One annoying thing I've learned about the Children's Memorial Doctors is that they won't talk to you on the phone or anything. I mean, it would be nice if we could feel this guy out ahead of time and get an idea of his experience with VATERS Association and kyphoscoliosis. But no. Looks like we'll get the scoop at the appointment. Another annoying thing about CM is it seems NONE of their chief surgeons are "taking new patients" so when you try to get an appointment they try to shove you off any just about anyone. Grrrr.

Feb 21 - We'll head to Chicago again for a visit with Dr. Frim, the chief neurosurgeon at University of Chicago's Comer Children's hospital. We're pretty excited about this one because maybe, just maybe we can rest easy about Ben's spinal cord issue once we hear from this guy.

To be confirmed - We're still working on setting up physical therapy for Ben. Grumble, grumble. We have a therapist in mind, but she seems to be a bit of a flake and NEVER calls back when she says she will. Grumble, grumble. We're also working on scheduling an appointment with a urologist.

And that's a wrap, folks!