February 24, 2009

Ezra update

Our buddy, Ezra, is doing well. His surgery went as expected and he is recovering in ICU. Sounds like last night was pretty rough...which is to be expected...but it looks like Mr. E has a high tolerance for sedatives and was pretty difficult to keep calm. To make things worse, the little dude was asking for his parents and "water!" all night. Makes me so thankful Ben wasn't talking yet when he had his surgery. Heartbreaking!

Keep up the good work, Ezra!

(And give your parents a little break, if you can.)

February 23, 2009

Go, Ezra, go!

Ben's good VACTERL buddy, Ezra, is having his tethered cord surgery today...seeing the same surgeon Ben did - Dr. Frim at U of C.

Is he the cutest thing or what?!



You might remember a few posts (this and this) we've written about him before. He and Ben were in the same NICU and that is how we met this wonderful family. It turns out they live close to us and we've become good friends over the past year. It is sooooo great having another family nearby with whom we share so much in common.

Please send out your best prayers and wishes for Ezra and his family on Monday!

p.s. Ben is feeling fine now!

February 19, 2009

Sicky sick sick

Ben is sick with somethingoranother. He was up all night crying and moaning. He has a fever. We have to assume he's feeling chilled because he has brought us his coat a couple of times now. So cute!

Normal parents would probably hope this is the worst of it, but cuckoobananas parents like us anxiously look forward to coughing, sneezing or a rash because that tells us he has some garden variety illness.

Luckily Ben helped us make a HUGE pot of Chicken'n'Noodles yesterday afternoon so we're all set with the perfect illness food.

February 17, 2009

Three strikes you're out...yay for only two!

We heard back from Ben's nephrologist and it looks like he's going to dodge another cuckoobananas.

There are three numbers in Ben's bloodwork that we are supposed to pay attention to:

BUN - high is bad
Carbon Dioxide - low is bad
Creatinine - high is bad

In last week's blood test Ben struck out on the first two, but saved the game in the end with a nice low creatinine level. Big time phew!

It was a rough week contemplating talk of "VERY, VERY MINOR kidney failure" which immediately gets translated by a worried parent's mind into "very, very minor KIDNEY FAILURE."

Which gets translated by Ben as "doodoo dada mama lolo!" (Read: Big whoop!)

So, we just keep on keeping track of his blood work on a regular basis. Such is life.




Wardrobe courtesy of the Schmidt family! :)

February 13, 2009

Wacky Day

First off...Ben's kidneys looked good in the ultrasound. (HOOOORAY!!!!) We're still waiting to find out the results of the urinalysis and culture and find out the nephrologist's opinion on the labs. Now from the beginning...

We had another early start today. In the process of getting everything ready, I ran out to start the car and get it warmed up for our trip. Guess what? Ben can now reach the doorknobs and push the lock button! I haven't used my house key in ages because I just come in through the garage so I was frantically digging through every cranny of the car and diaper bag trying to find a house key. I found three keys and none of them seem to be our house key. I was running around the outside of the house like a crazy person trying every door. Thankfully, somehow one of the back doors was open. Ben thought it was all hilarious with mommy running from door to door jiggling the doorknobs.

We were running late and I'm pregnant and lazy so I decided to valet park. Okay, I confess I always valet park at the hospital. Now you know. Anyway, I hopped out of the car with the diaper bag over my shoulder and took the ticket from the parking attendant. As I was walking around the back to get the stroller out he started driving away. Just as I was saying, "Woah!" I could see him turn to check his blind spot and that's when he noticed the world's cutest toddler was sitting in his car seat in the back. Break lights. Guy jumps out, some other parking dude yells at him in another language, he yells back and suddenly all of the parking attendants are pretty much in tears laughing. They all helped me get the stroller and bags out of the car and one of the guys says to me, "Third time he does that this year!"

Getting into the elevator at the hospital I guess I ran the stroller over some lady's toe and she threw an absolute fit. She wouldn't get over it and I was just about to ask her if complaining made it feel better when the door opened for our floor and we had to leave. Oh well.

By the time we got to clinic I was all discombobulated and as we were being escorted into a room to get Ben's measurements that was when Ben wised up. I suppose I shouldn't whine since we've gotten 21-months out of him being generally pleasant and happy at doctor visits and he has easily submitted to pretty much every medical procedure done to him...and, believe me, some of them are too ugly to write about here without attracting perverts to this blog. So, I won't whine and instead I'll just give you the facts:

-- I had to get on the scale with him and then get weighed without him which didn't stop the screaming but at least it stopped the thrashing around.

-- The radiologist suggested I lie down on the table with him during the ultrasound which didn't stop the screaming nor the thrashing.

-- I was very nearly knocked off of the table by his kicking and thrashing around, but luckily the radiologist was able to steady me (and possibly save our unborn child from injury) by supporting my behind.

-- It took three adults to get the ultrasound completed.

-- He threw a bag of cookies at the radiologist.

Now let's take a break from reading to remember why you just can't hold stuff like this against him...





I know he's my kid and I'm supposed to think the sun sets in his eyes and blah blah blah, but seriously he's really cute.

Okay, back at it...the ultrasound successfully completed we headed to an examining room to wait for the urologist. A few moments later there was a knock at the door and our much-loved nurse practitioner came in and said, "Oh I wasn't sure you were in here because I couldn't hear Benjamin."

I replied, "Well, it's not like he goes around screaming all day!" (He just happens to be terrified of scales, tape measures, lubricating jelly, and black-and-white television screens.)

We went through his medical history and then the urologist joined us. He said, "I saw your friend here yesterday, Carson's mom, and your other friend, Amanda, last week." I told him I'm wildly popular. Haha. No, really, when you find a urologist who is personable, experienced, and not at all creepy...oh and emails...well, you have to tell your friends.

He said Ben's kidneys looked just fine in the ultrasound and he was very pleased to hear that Ben has shown some interest in potty training. He wants Ben to have another urodynamics evaluation once he's potty trained. Normally he would have this test 3-6 months after neurosurgery, but because this test requires a catheter and Ben has to be catheterized in the operating room under anesthesia the urologist wants to wait. He is also deferring to the nephrologist for a reading on the blood work and what this might tell us about Ben's kidneys.

So, now we're waiting to hear back from the nephrologist and waiting on the results from the urinalysis. But, having the kidneys look okay today makes going into the weekend much, much easier. A huge relief.

February 12, 2009

Haircut coping mechanism

You know how you sometimes just need to do something drastic to yourself - haircut, dye, new clothes, etc - just to cope with a situation? We chose haircut. For Ben. Hee hee.

Before...



And after...

We just bought a new, fancy clipper and blade attachments in the hopes we could start doing all of our boy/men haircuts at home. This was the first official haircut with the new clippers (I've done some work with the kitchen shears in the past...it was...uhmm...interesting). I have already learned a few things from this first haircut - next time I'm putting Ben in his raincoat, strapping him into the chair, and providing some treats. Heh heh. I should probably go clean up the bathroom now...

Labs schmabs

The blood work didn't come back so good. Sigh.

Some of the numbers are better, some are the same, and some are worse. It's disappointing to say the least.

It's hard to know how to judge this. If Ben were just some random kid off the street with no cuckoobananas medical history would lab results like these be a concern? How concerned should we be because it is Ben and he has a cuckoobananas medical history? How big of a deal is it? In the grand scheme of things (or at my old boss used to say - "All things being equal") this can't be too high on the freak-out scale because Ben is his usual, happy, fun, healthy self.

But there are the more complicated pragmatic questions - which doctors should be involved? Will any of them take responsibility for getting to the bottom of this (if a bottom is even there)? How do we avoid once again being in the middle of a big game of physician NOT-IT! with everybody wanting this to be some other specialist's problem?

(How will we sleep at night?)

The fun emotional roller coaster that is the third trimester of pregnancy makes this depressing, terrifying, and mind-consuming. Luckily Ben thinks crying is actually laughing so he laughs along. I could learn a thing or two from this kid.

We will head to University of Chicago Comer Children's Hospital this Friday for a renal ultrasound, some more labwork, and a clinic visit with the urologist and nephrologist. And we'll go from there.

At least I don't have gestational diabetes! (Because, seriously, this is a time for lots and lots of candy.)

February 10, 2009

Jam-packed Day



Phew! Today was jam-packed full of appointments and junk. I vaguely remember some mom I consider wise talking about how it's a good idea to pack everything into one day so stuff isn't spread out all over the place and it sounded so sensible at the time. Now I'm not so sure!

We were in the car by 8:00a.m. and on our way to Lutheran General Hospital for a speech evaluation. At Ben's last NICU developmental follow-up clinic appointment the doctor wanted his speech re-evaluated in October. I've been blowing it off since then. Bad mommy! It was 1.5-hours for goodness sake and the result was pretty much what I had expected. The therapist feels he is delayed in his expressive speech area - what he is able to communicate. His receptive speech - what he can understand - is just fine. He just doesn't have very many words still, so we'll be setting up speech therapy to help with that. I figure if it's half as successful as physical therapy Ben will be quoting Shakespeare in no time. We're being put on the waiting list for therapy at Lutheran General and we're also going to get things started with Early Intervention because I really can't see us driving down there (it's at least an hour long drive on a good day) every week once Ben's little sister is here.

I guess Ben sensed it was the end of the speech evaluation because we were talking and not asking him to do anything. He suddenly turned to the therapist and yelled at her, "Eeeee aaaaaa oooo-eeeeee!!!!!!" (Remember? Me want cookie?!) She looked at me and I explained that his physical therapist always gives him a cookie at the end of therapy. Not to be outdone, she of course jumped up and headed off in search of a cookie with Ben in tow. I waited in the lobby for them and when she came back she said she didn't even have to ask anybody where the cookies were because as soon as they walked into the office Ben pointed at the tin on the shelf and yelled, "Ooooo-eeeeee!!!!" Hahaha.

Ben and I headed off for lunch in the hospital cafeteria. About halfway through our yogurt and fruit he reminded me about something I had told him we would do after lunch - "Too too!!"



Nice too-too, huh? It's in the hallway between the main hospital and children's hospital. Big time hit. I wonder how often this train is used as a bribe.

Next up was physical therapy with the therapy dog. It seems we've finally convinced Ben that Lucky is actually a dog and not a horse. Lucky is a marvelous dog and if I can ever get his owner distracted for long enough I'm going to try to dognap him.



He gets some love from Ben now and then, but mostly spends his time either leading or following Ben around on his therapy activities. Like through the tunnel, for example...



Ben takes Lucky for walks around the offices...or maybe it's the other way around.



Either way, by the time physical therapy was over Ben was a little tired.



So, we hopped in the car where he took a nice long nap on the way to his next adventure - an ever-so-exciting blood draw at the clinic. That was...errrr....unpleasant. I honestly lost track of how many times they stuck him before they finally filled that *beep!* vial. Ben was absolutely inconsolable for a good 20-minutes afterwards. You know when a Peppermint Patty doesn't cheer him up he's seriously not happy. This blood test is to follow up on the wacky test results he got back in October. Despite the parade of appointments we never really got to the bottom of those test results and technically we were supposed to go back to the neurosurgeon if no cause was identified by other specialists. Let's just say it would be really, really nice if this blood test comes back perfectly normal and we don't have to start looking into neurological junk. Wishes, prayers, karma, crossed fingers and the like are much appreciated.

We are snuggled in on the couch now and watching a Thomas the Tank Engine video and reading books and eating fruit...can you tell Ben is a toddler now? Fun times.

February 09, 2009

February heat wave

It was so warm today that the snow finally melted off the back deck and Ben got to go out and play. Yep, his feet are bare. He insisted. As Grandma Linda says - pick your battles!

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February 06, 2009

February 05, 2009

Lunch entertainment

To say our meals have become entertaining is an understatement. It's more like a song, dance, comedy routine. Behold the typical meal...

video

Not sure what today's lunchtime song was. It could have been "Twinkle, twinkle" or "Baa Baa Black Sheep" or "Three Blind Mice" or even Westminster Chimes (he is a little obsessed with chiming clocks). We've been having some talks about how "uh oh!" is really only appropriate when something is accidental.

Cheese!

Guess who got a brand new camera?!



Stay tuned...
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