December 20, 2008

Let it snow!

Last week...




This week...



Yeah, that's 9.5-inches of snow outside our house. Ben got to play in it for a bit which he thought was big fun...until he got snow up his sleeves.

December 15, 2008

Victory!

Not only did our friend, Helen, finish the marathon under her goal time, but she also met her fundraising goal of $1,500.00 for The VACTERL Network!!!!!!!!



That's The VACTERL Network logo on her racing shirt...is she the best or what!?

Many, many thanks to everyone who supported Helen with cheers and supported The VACTERL Network (and Benjamin) with donations. It has been overwhelming! Yay everyone!!!!

December 13, 2008

Go, Helen, go!!!!!

Helen's big marathon is this Sunday!

It's hard to express with words how touched we are by her awesome gesture to run for Benjamin and raise money for The VACTERL Network. We have been overwhelmed by the generosity of so many people who have sponsored Helen's run. There is still time to sponsor her if you're interested - http://www.firstgiving.com/helenhutton1

Go, Helen, go!!!!!


*** Would you please leave a message for Helen in the "comments" section here? ***

December 12, 2008

TGIF Beach Style

Ben started off Friday morning with a trip down the street to the fishing pier, park, and local shops. He mostly browsed the sand pail collections while his mom had an Interlochen flashback when she found a Kilwin's confection shop. Mmmm...fudge. Nuff said.



Ben fell asleep in the car on the way back to the condo and woke up to spend the afternoon at the rather windy and chilly beach.





December 10, 2008

Random Tuesday Pics

Here are the boys taking a dip in the condo pool.



Ben lounging on the balcony and giving us "that look."
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December 08, 2008

A day out

We started off the day with a trip to a public park just a mile or so from our condo.



There was a fishing pier with more birds than people fishing. Ewww.



And a great playground with a couple of slides and lots of sand to play in.



We went out for lunch at some seafood restaurant that was really overpriced. A lunch shouldn't cost $50 when you're eating off of styrofoam and plastic. Hrmmm. Got back to the condo in time for a famous gulf-side sunset.



Ben has gotten into the habit of crying and whining and dragging us to the front door whenever we're in the condo. It seems he's figured out it's much more exciting and fun OUTSIDE than it is inside. Could make for a long week!

Beach Breakfast

Nothing like breakfast at the beach! Here is Ben eating his oatmeal and yogurt on our balcony overlooking the Gulf of Mexico. Nothing much to tell...we've spent our time walking around, relaxing in our condo, going to the park, and walking on the beach. We're freeloading off the wireless at the resort next door. Yay vacation!



We're expecting a "cold spell" Thursday with temperature staying in the 60s...brrrr! Haha.
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December 07, 2008

We're at the beach! But the internet doesn't work so no pictures. Boo!

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December 05, 2008

VACATION!!!!

This Saturday we're going on a much-needed vacation!!!

We're headed to Fort Myers Beach, Florida for a week on the beach away from the cold of Illinois. Expect some sunny pictures soon.

December 01, 2008

The post-gobble

Thanksgiving was a blast. We got to see all sorts of family, enjoyed the time off and time to spend together, and stuffed ourselves silly of course.

In other news, we're planning a vacation for next week! On Saturday we fly to Fort Myers Beach, Florida for a week in the sun...or at the very least a week away from the snow. Once we get back we'll have about a week before the Fradin family Hanukkah party and then we're headed to Ohio for the Batey family Christmas (and Granddad's birthday).

Somewhere in the middle of all of this I need to do a glucose tolerance test to check for gestational diabetes. Had it when I was pregnant with Ben and, well, I'd rather not have it again this time. Or at least I'd like to get through Hanukkah and Christmas and Granddad's birthday without having to count every little carbohydrate.

We'll be thinking of our friends this Tuesday who are going to get a Level II ultrasound and see the same perinatologist we saw to check on a kidney problem with their little munchkin in the belly.

Gobble, gobble everybody!

November 25, 2008

It's a girl and she looks good!

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Super Sonogram Tuesday!

Today is the big photo shoot for baby No.2!

We are getting a Level II ultrasound at the hospital. A Level II ultrasound is just like a regular ultrasound except it's generally done at a specialty or perinatology office by someone with perhaps more experience and with better equipment. It's also "targeted" meaning that instead of a general scan this exam will be looking for specific things.

We'll meet with a nurse before the exam and review family medical history and, of course, Ben's medical history. Then a perinatologist will accompany us through the ultrasound exam and consult with us afterwards.

That said, there is absolutely no known cause - genetic or environmental - for Ben's cuckobananas. Our chances of having another baby with VACTERL are just the same as anybody else...and, that, for the record is 1.6 in 10,000 live births. Also, for those of you who don't know, we had all the normal and routine prenatal exams with Ben, including countless ultrasounds towards the end to monitor his growth due to gestational diabetes, and not one single problem was ever detected. To say we are suspicious of the reliability of these scans is an understatement. :)

Of course we're hoping for everything to look perfect and we're especially excited to find out if Ben is getting a little brother or sister.

Check back later for an update!

November 22, 2008

18-month Check Up

Ben had his 18-month check up with his pediatrician on Friday and things are good! Here are the stats...

Weight: 23lbs 3oz (20th percentile)
Height: 32.5inches (71st percentile)
Head Circumference: 49cm (85th percentile)

We can't hardly remember the last time he was above the 10th percentile for weight so this is super exciting! (We're thinking it was shortly after he was born maybe?) This is the most he's ever jumped up in the growth curve and we can't help but think it might have something to do with the fact that he's gone an entire 7 months without being NPO, unconscious, and unable to hold down food for days on end. (Well, okay, he was unconscious for a bit in July for the MRI but whatever.) We think this might make him a contender for the best weight-gainer ever in the VACTERL world...we can't help but be excited when pretty much everywhere you look up VACTERL you read about "failure to thrive." (Mean term, isn't it?)



Failure my hiney!

He got a couple of shots and took it like a man...boy...toddler. Haha. We talked about scheduling his next speech evaluation for early December. Our pediatrician got a nice letter from the gastroenterologist giving Ben the all-clear. She is still waiting to hear from the urologist and nephrologist about what they've decided regarding Ben's kidneys. Kidneys schmidneys. Bah.

Once we told the pediatrician Ben is going to be a big brother Ben's health needs were left in the dust! Haha. (Hope it's not a sign of things to come.) She started getting on my case to get a flu shot and how whooping cough is going around and blah blah blah. It was pretty funny, actually. By the time we got into the lobby we were mobbed by the office staff. Very sweet.

So that's a wrap!

Oh, and Mike felt the baby move tonight. :) Oh yeah, and ultrasound on Tuesday so we might know the gender then. Happy weekend everyone!

November 17, 2008

Running for Ben!

Our friend, Helen, is running a marathon in Ben's honor and raising money for The VACTERL Network...and it's less than a month away!

http://www.firstgiving.com/helenhutton1

Please consider giving her your support.

November 14, 2008

Out!

We pretty much spend most of our time in the playroom because this is pretty much what Ben does the entire time we're in our room...



We're waiting for our laundry to dry and then we're headed home.
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Playroom





Edited to add - This isn't OUR playroom at OUR house!!! It's the Ronald McDonald House playroom.

November 13, 2008

Phewwwwww!

As expected it was a long day, but thankfully uneventful!

The gastroenterologist isn't at all concerned about Ben's liver or anything else GI-related having issues. Super! He mentioned the possibility of Rickets (which seems a little outrageous, no?) and recommended putting Ben back on a multivitamin supplement and especially increasing his Vitamin-D intake. No problem.

The nephrologist appointment went well, too. First thing he said when he walked in the door was some remark about what a crazy year we must have had and how much he loved the medical summary I sent him. Does he know how to win over a mama or what?! Haha. He seemed pleasantly surprised at how good Ben's kidney's are...most kids with VACTERL have problems and most kids with neurogenic bladder have problems, but not Ben!

Yet.

The nephrologist wants to more closely track Ben's kidney function with regular blood tests. He seemed surprised we haven't been catheterizing Ben and asked if our urologist had talked with us about doing the Mitrofanoff procedure...or if it was even possible after all of Ben's surgeries. Yes, we have talked about it and yes it's possible. We just haven't started catheterizing because there hasn't been a serious reason to - no infections and no kidney problems - so we're waiting and hoping that he grows out of this bladder problem. The nephrologist seemed to agree with this approach. He said he doesn't need to see us on a regular basis unless kidney problems start to show up in bloodwork or imaging and we can continue to follow up with the urologist.

So all-in-all it was a good day. Unfortunately the nephrologist didn't give us our ultimate wish -- the "why-are-you-even-here?" look like the GI did, but at least he didn't give us the "sorry-but-your-son-is-in-renal-failure" look either...thank goodness!

Before: Playing with trains on the kitchen floor.


During: Reading a book in the clinic office.


After: Zzzzzzzz.


And this mama needs some zzzzzzs now, too. Thanks everybody for the sweet wishes and all that...always much needed and appreciated.
The nephrologist says he wants to track Ben more closely, but things are OK now.

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The GI says Ben's liver looks just fine! :)

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November 12, 2008

Ben's Big Day Tomorrow

We are all tucked into the Ronald McDonald House at University of Chicago Comer Children's Hospital (no really, this is the actual name of the house...annoying isn't it?). Ben's big day of appointments is tomorrow. Here's the lineup -

10:50a.m. - Dr. Guandalini, Gastroenterologist - This is the guy who should be able to tell us if there are problems with Ben's liver or intestines. We've never seen a GI doctor like him before, so we're not sure what to expect.

1:00p.m. - Dr. Clardy, Nephrologist - This is the guy who can tell us if there are problems with Ben's kidneys. We've seen a nephrologist before, but not this one.

TBC - Dr. Gundeti, Urologist - This is our urologist and we love him. There I said it! We love him. Hee hee. His nurse (and/or him) will be chasing us down during one of our clinic appointments to do a bladder scan...which is a fancy term for an ultrasound of the bladder. We've kind of fallen in love with his new nurse, Beverly, too and that's just over the phone.

So, as you can see the only test we know of is this bladder scan, but we'll be shocked if we get out of there without at least another blood draw and who-knows-what else. Probably the biggest gripe will be having to go over Ben's medical history with two new people...and their residents...and their nurses. Well, that and it's probably going to be the longest day ever in the history of mankind.

We'll give updates here as usual...and thanks in advance for thinking of our son tomorrow.

November 07, 2008

Superben!

Superben bidding farewell to his daddy this morning


Superben's super smile


You mean this cape should stay on?


Superben and his super sippy cup


Happy Friday everyone!

November 05, 2008

Quick update

Ben is still his usual, happy self. We finally heard back from the urologist, who heard back from the nephrologist, who says it would "be in Ben's best interest to see him in clinic." We've scheduled that for next Thursday, Nov 13, and this morning I went ahead and scheduled an appointment with the gastroenterologist for the same day.

Now I'm trying to figure out if a repeat of these tests is in order. I think I'll run it by the pediatrician today.

So, at least we've made some progress!

November 03, 2008

Little updates BIG pictures

Not too much to update yet. We heard back from the general surgeon who did 4 of Ben's surgeries and he doesn't believe these symptoms are related to his intestines or urinary tract. He says we should follow up with the pediatrician, but keep him informed. Still waiting on the nephrologist and gastroenterologist.

But, in the meantime, further proof that Ben is feeling good...pictures!

Today has been so beautiful. You couldn't ask for a better Autumn day. It's been warm and sunny and the leaves are beautiful, so we got a lot of time outside today. First thing this morning we went to playgroup at the Johnsburg Library. They basically just fill a room with tons of toys and let the kids have at it. When we came home we had lunch and then played out the back yard.









I realized today that one of the reasons we have not been sharing photos like we used to is because photos are so much harder to take now...he's all over the place!

Lately he's taken to counting. It started with the "Take Me Out to the Ballgame" song and got reinforced while counting the Three Little Pigs and Goldilocks and the Three Bears. He usually gets to 2 and quits but sometimes he gets to three. Notice the hand motions...heehee.


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November 01, 2008

Happy Halloween!

Ben got to trick-or-treat with his cousins last night! It was so cute. At first he insisted on being carried and was wary of the strangers (FINALLY!) holding bowls of candy. But, once he got his first taste of a KitKat his attitude quickly changed.

He dressed up like Yoda thanks to a hand-me-down costume from our VACTERL friend Amber.




As you can obviously tell, we didn't end up in the hospital after all. Yay! Maybe our curse of holidays has finally lifted...Mother's Day in the NICU, Hanukkah in surgery, Father's Day and 1st Birthday in the ER...well, you can see where we started to feel cursed. But Halloween was spent just like it oughta be...out on the streets begging for candy from strangers!

You can't see it in these photos, but Ben's dad has a huge glob of chocolate smeared on the back of his shoulder thanks to Ben. Hee hee.



And here's some Yoda in action...

video

It was so cute. Ben would go up to the house and get his piece of candy and then run it back to his mama to put in his bag. You won't be surprised to hear he made a killing. After trick-or-treating we headed back to the cousins' home for some Malnati's pizza (the best pizza you can get around here...but NOTHING compared to The Big Red Tomato, of course), play time, and the Halloween essential - a viewing of "It's the Great Pumpkin, Charlie Brown."

We expect Monday to be action-packed. We got a message from the urologist - and his new nurse, Beverly, who couldn't be any nicer - saying that we should get an opinion from the nephrologist on Monday. We got an email from Dr. Pena's nurse who said he would review and give an opinion on Monday. We send the records in an email to the gastroenterologist who will be back from vacation on Monday. So Monday, Monday, Monday it is.

In the meantime, like we've said all along, we're in limbo between freaking out about these lab results while at the same time not being that worried because Ben is just his usual self. He's having a good time, running around, playing, smiling, and giving out hugs and kisses.

Happy Halloween!

October 31, 2008

Cuckoobananas strikes again

Well, we had a couple of months away from doctors and tests so that was a nice break while it lasted. Unfortunately, we're back in the cucukoobananas saddle again.

We took Ben to the pediatrician on Monday because we had noticed some changes - he's been drinking waaaayyyy more milk and water, wetting diapers like he's getting paid to do it, and his hands and feet have looked puffy off and on...oh...and he has this rash on his face. The pediatrician looked him over and thinks the rash is probably eczema and she ordered blood and urine labs just to be on the safe side. For a kid with kidney, intestinal, spinal cord, heart, and bladder issues this is just what you have to do.

OF COURSE the labs came back with horrible results.

But, just so this isn't the downer post of the year we should tell you that Ben seems just fine. He is running around and happy and playing and doesn't seem to have a care in the world. He got to ride in the fancy-schmancy grocery cart the other day. There was even a television in there that played Elmo and Thomas. I have to say, it was totally worth the $1 as I got to grocery shop for an hour without once having to dig out a toy, pick junk up off the floor, or do a clown-act to keep him in the cart.



So, back to the labs. Skip this if you don't want to medical mumbo jumbo details...

His BUN levels are high, his BUN/Creatinine ratio is high, his Globulin is low, his Albumin/Globulin ratio is high, and his Alkaline Phosphatase level is very, very, very high. What the heck does that mean? Who the heck knows!

But, we're trying to find out. The concerns are mainly with his kidneys, liver, intestines, and possibly spinal cord. Gee, we've really narrowed it down, huh?

Our pediatrician is mainly concerned about the liver and intestines. She's pretty much stepping out of the picture now and deferring to our specialists.

Kidneys make the top of the list because he already has a history of problems there. The urologist doesn't believe it's a kidney issue because his creatinine level is okay, but he's still going to consult a nephrologist to be certain. He thinks it is more likely to be his liver (which would be a new organ to add to Ben's watch list) or intestines so he is also consulting a gastroenterologist.

Our neurosurgeon, Dr. Frim, says he thinks it is most likely due to nutrition, kidney function, or liver function. But, if nothing turns up there he wants us to let him know and he'll review it further from a neursurgery standpoint. We have to tell you, once again, how much we love surgeons who email. He wrote us back in less than FIVE hours. So wonderful.

So, that's where we're at. Obviously, we're pretty nervous and scared, but at the same time we can't completely freak out because Ben seems just fine. Here is proof...pictures from a jaunt to Chuck-E-Cheeze -






If any of you out there have ideas or suggestions we're all ears. We're pretty much just waiting to hear back from the various specialists. And we're packing our bags in anticipation of a trip to the hospital in the near future.

Such is the life in cuckoobananaland!