September 29, 2008

Random weekend pictures

Here are some random pictures from the past couple of weekends.

Two weeks ago was a trip to the Brookfield Zoo. Ben is a very serious carousel rider...

And a slightly less serious gorilla rider...

This past weekend was the Shades of Autumn Festival at Stade Dairy Farm. They had two pits filled with dried corn for the kids to play in. Sort of like a ball pit, but with corn. Obviously a good time!

And for those of you who've asked...I'm doing great. Feeling good and mostly past the nausea and fatigue part. This baby is having a little fight with my bladder for the timebeing and that has led to urinary retention. Fun times! I figure since we've spent so much time on here talking about Ben's bits and pieces it's only fair to talk about ours as well. Can I tell you how hard it is to convince people that a pregnant lady is having problems using the bathroom?! Once I finally got into the OB's office they had to do a catheter there and emptied 1200cc...that's over 5 cups! Can I tell you how much better I felt after that? Haha. Now I have to self-cath which is an adventure in itself, but the benefits far outweigh the alternative. Because, as Annie said, "When you gotta go, you gotta go!"
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September 26, 2008

Running for Ben!

One of my childhood friends is running a marathon in Ben's honor and raising money for The VACTERL Network. When I say childhood, I mean it...our mothers met at a Lamaze class! We spent nearly every day of summer together - camping, watching movies, swimming - and I'll bet she has the movie Beetle Juice memorized just like I do. Hee hee.

Out of the blue she contacted me about doing this and I am just so...I don't even know if there are words.

Anyway, please check out her fundraising page to see all about it.

How cool, amazing, sweet is that?!

September 24, 2008

Ben's new name

We've decided to give Ben a new name - big brother.

Yep, that's right...we're having another baby and Benjamin will be a big brother! His little sibling should join us some time around the end of March or beginning of April. There's a little ticker in the right-side column (over there -->) that counts down the days.

We can't wait to see what sort of big brother Benjamin is!

September 18, 2008

Orthopedic update

We're back from the orthopedic surgeon visit and everything went very well. Ben did not end up needing any x-rays at all as they could see all they needed to in the MRI from July. The wait was over 2-hours so that wasn't so fun...well, nothing compared to the 4-and-a-half hour wait for the neurosurgeon last time, but still...

When we finally saw Dr. Sullivan, the first thing out of his mouth was, "He's huge!"


Dr. Sullivan said things look pretty stable and there aren't any obvious problems at the moment. Sweeeeet. He said many of his defects compensate for one one defect bends the spine this way, but another bends it back the it's sort of a wash. Haha. We asked him about Ben's shoulder - he tends to hold his right shoulder up. Basically, at this point, who knows. So it looks like we have a reason to keep up the physical therapy anyway which Ben and his PT, Patty, will be happy about. He mentioned that the issues going on in Ben's lower spine are the more significant. His spine curves forward there instead of back. He said that Ben is still flexible there so we'll wait and see. Eventually he might need a vest-type brace if this area gets worse.

He played around with Ben's arms and wrists...which for whatever reason Ben really didn't like. Things look fine there. He said that if there were limb anomalies (up to 70% of VACTERL cases have them) they would be obvious. So, all is clear there.

Best of all, he said we don't need to see him again for another year! Wooohooooooo!!!

(Now to see if we can get the appointments for the orthopedic surgeon, urlogist, and neurosurgeon in the same week.)

September 17, 2008

Our little monkey

Tell me this isn't the cutest sweater EVER? Seriously. EVER!

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Another bed

Ben and I are staying at his grandparents' home in Evanston, IL for a couple of nights to be closer to the hospitals where he has appointments this week. Here is a picture of his other bed.

Hahah. Isn't that a lovely pack'n'play back there behind that dog pen? By the way, his outfit is courtesy of our VACTERL friend Kyleigh, or rather her older brothers. Her mom mailed us two boxes packed full of clothes...and we're talking really, really cute clothes. Oh man. Just wait until you see what Ben is wearing today. A little hint - monkey! Thank you Ky!!!!!

Well, on Thursday Ben has his routine 6-month appointment with his orthopedic surgeon, Dr. Sullivan, at University of Chicago. This will be his first orthopedic check-up since he's started walking and we're really excited to get the doctor's take on his explosion of recent developments. Normally an orthopedic check-up is preceded by an x-ray. But, I emailed Dr. Sullivan to let him know about the recent images Ben has had done (spinal MRI) and he emailed back - in less than 4 hours - and said to hold off on doing the x-rays until we've seen him in clinic and reviewed the images we already have. I wonder if he knows how much this has affected his ranking in the Our Favorite Doctor's list. Hahaha.

We have recently learned that many VACTERL children get a full body x-ray during the newborn period to check for limb anomalies (that's what the L stands for after all). As far as we can tell, Ben has never had this done. We have no reason to think he has any limb deformities - nothing looks obviously abnormal - but it's possible there could be issues that aren't outwardly visible. It's a little concerning. But, we'll have a better idea once we talk with the surgeon.

Thursday is the big day!

Oh, and there is another VACTERL Benji out there who could use your hopes and prayers. I get the feeling his family is getting a landslide of difficult news these days.

September 16, 2008

This time last year

Wow. This time last year we were majorly freaking out about Ben's upcoming surgery. We were so new to it all still.

September 12, 2008

September 10, 2008


Ben has graduated to a toddler bed!

His Cousin Anna has graduated to a big girl bed and let Ben have her toddler bed. Oh man is it cute!

Speaking of cute...

The other night the three of us were playing around and Ben kept trying to stand up in his rocking chair. His mama said to him, "Bottom down! That's not safe!"

About 2-seconds later he did it again and his dad said, "What did your mom just say?!"

His answer was, "Meow!"
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September 03, 2008

Best Moment

Our electricity went out last night. Are we the only ones who think that is sort of fun?

It took us a while to find our flashlights and of course they were an instant hit with Ben. The three of us just hung out in bed together playing with the flashlights and any other toy we could find that lights up. Eventually Ben got tired out and started looking for a comfy place to tuck himself in. He chose his daddy's arm and snuggled in. One big yawn and he was out.

A few moments later Mike whispered, "Could you make sure the TV and lights are off because when the electricity comes back on I don't want them to startle Ben. This is the best moment of my life."

And he meant it. The only problem now is I'm pretty sure Mike is going to try to get Ben to fall asleep like that every night. We'll see if he cooperates.