Eye on the Baby (and Toddler and Preschooler)

2012-02-11T12:16:00.000-06:00

2012-02-11T12:15:00.000-06:00

2012-02-11T12:13:00.001-06:00

2012-02-11T12:13:00.000-06:00

Vacation from our vacation

2012-02-10T20:12:00.001-06:00

Day 4 of our vacation (or, as we affectionately refer to it - the fake-ation or relo-cation) and it's STILL raining. And Ben got a rash yesterday all over his tummy and back. He was fidgeting all night with it and by morning it had spread to his wrists where he's scratched one place raw. So, considering the body aches he's been complaining about, the red cheeks he had the other day (which we thought was sunburn), the runny nose, coughing, and sniffles, well, we think it's Fifth Disease. Fun! Hahaha. We rented a car and went to the store for some benadryl and that has sure cleared up his rash.

There is a woman staying at our same hotel who is rather obsessed with our kids. And their father. I ran into her alone and in her New Jersey accent she said to me, "Hold on to that man, honey! He is gorgeous! Well, at least keep him until you're done having babies!"

Okay then...hahahaha.

We did see a lot of other really nice people today, but it appears they were all intoxicated...perhaps at Garlic Fest. Yes, Garlic Fest. They have a "family area" at Garlic Fest that we are thinking we might check out tomorrow. Bet it's stinkin' good. Har har har.

The weather report for tomorrow actually has - GASP! - something resembling sunshine in it. Wooo!

2012-02-10T16:59:00.001-06:00

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2012-02-10T16:54:00.000-06:00

Vacation?

2012-02-09T14:50:00.001-06:00

Anyone who has travelled with three young children by car, airplane, and hired car know it's not exactly the journey that is fun. It's taking a while to recover from the journey. Haha.

We spent our first day without diapers. Fun. The kids and mama walked 2 miles to the nearest store that carries diapers and Ben got bleeding blisters on the backs of his feet. Poor guy, but nothing some bandaids and new crocs couldn't fix.

This isn't exactly a kid-friendly destination. There are many very lovely, kind people who adore our children for no other reason than they are young and gorgeous. Unfortunately there are many people here who apparently hate our children because they are small and in the way. Someone actually GLARED at the stroller. We are hoping there is a secret handshake or something that will tell us if someone is a child lover or a child hater.

It has been raining or cloudy or pouring rain ever since we've arrived. I think we've seen sunshine twice. BUT, it's warm! And the kids aren't bummed out by rain. Nope. They just wanted to know if they could jump in puddles.

Ben and Olivia have been happily sharing a bed and were overhead the other night telling each other "I love you."

Yesterday, Ben and Olivia were playing and Ben told her, "I know about lots of things. Like I know about building sandcastles and I know about outer space and I know lots about what doctors do to me."

Ugh. Gulp. Sniffle sniffle.

Mike randomly mentioned that his new goal is to get Ben eating more and I knew he was seeing what I'd been seeing. It's hard to see our little guy in a swimsuit that falls off his skinny little body covered in scars. He has been complaining about his legs hurting more. So, there isn't exactly a vacation from cuckoobananas unfortunately.

He's also absolutely handsome and marvelous which is completely heartwarming to see. All three kids have been having a blast. Hopefully the grownups will recover from the relocation soon. :)

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2012-02-08T10:06:00.001-06:00

How Ari has weathered

2012-02-07T17:00:00.001-06:00

Little baby girl has fallen asleep during two rain-soaked outings today.

The wet forecast

2012-02-07T16:58:00.000-06:00

Tucked in

2012-02-06T20:52:00.001-06:00

Up up and away!

2012-02-06T13:57:00.000-06:00

We are on our way to Florida!

2012-01-24T16:42:00.000-06:00

On the wall

2012-01-13T15:03:00.001-06:00

The writing is...

2012-01-13T11:24:00.001-06:00

Muggles don't get "that orange stuff"

2012-01-04T18:17:00.001-06:00

I was recently reminded about "that orange stuff" in one of the support groups I'm involved in and it left me wondering what happened to ours. For those of you Muggles out there who don't know "that orange stuff" (which must not be named), let me tell you it is AMAZING. I can't remember where we got our bottle - maybe it was our NICU ostomy nurse, maybe it was a freebie through our med supplier, maybe we picked it up at the UOAA conference, maybe we got it from another parent ditching their old supplies at a Ronald McDonald House. Who knows. What we magical (medical) parents do know is this stuff is awesome. Why?

First off it is orange. A really nice orangey orange.

Second, it smells fantastic! When you spray it you might as well be peeling back the peel of a fresh, plump orange. I swear it smells like the real thing.

Third, it appears to be somewhat natural with ingredients like natural oils, aloe vera and organic wetting agents. Organic!

Fourth, it works. And by works I mean it takes off EVERYTHING. Colostomy bags stand no chance. Bandaids tremble in its presence. Monitor lead adhesive is history.

And fifth, it works in non-medical situations, too. Like when your kids have put stickers all over the pretty wood floors. A couple of sprays and a few minutes later those stickers peel off in one piece no problem.

Can you tell how excited I was to rediscover this wondrous tool of the wizarding world in the back of our medical cabinet?

There are precious few things to brag about in our world of medical magic. That orange stuff (which must not be named) is something I really do feel sorry the muggles must go without.

More cat love

2012-01-03T10:07:00.000-06:00

2011-12-26T18:31:00.000-06:00

See ya next year!

2011-12-21T18:13:00.000-06:00

That's what Ben gets to say to his orthopedic surgeon! His spine is a mess, but it's a surprisingly stable mess so the orthopedic surgeon feels comfortable going to yearly follow-up appointments unless problems come up. Woohoo!!!!!

I made the classic mistake of speaking to a resident and while he was reviewing the X-rays and MRI he thought it would be nice to tell me there are excellent surgery options for dealing with chest wall deformities, but they are risky. And then there was the classic "He really has VACTERL? He looks really good!" Okay, thanks, now go away. Then the real doctor came and told him that although Ben is a disaster on paper he's actually doing well.

Now we only have urology follow-ups on the 6-month marks and everything else is yearly. We won't get the kidney test results back for a few weeks I imagine. Ben was super good for all the testing. The kidney stuff took forfreakingever with them trying to get the perfect picture or something. But who cares when you can watch Toy Story 2 ten times in a row? He chased down a resident to make sure he knew "No shots for Ben!" And Ben earned two AngryBirds for slamming down 12oz of juice in 5 minutes. I hope this doesn't come back to haunt us when he's in college.

See ya NEXT YEAR Dr. Sturm! :)

Nutella

2011-12-15T17:37:00.000-06:00

Olivia's first Nutella spoon! I told her we girls will be doing this the rest of our lives. :)

Sick, disadvantaged children granted early holiday wishes - Chicago Tribune

2011-12-14T21:57:00.001-06:00

http://articles.chicagotribune.com/2011-12-12/news/ct-met-holiday-charity-20111212_1_sick-children-holiday-songs-holiday-rush

Metra takes kids fighting illnesses to Des Plaines 'North Pole' | abc7chicago.com

2011-12-14T21:47:00.001-06:00

http://abclocal.go.com/wls/story?section=news%2Flocal&id=8463143

Operation North Pole makes a magical day for sick children - DailyHerald.com

2011-12-14T21:13:00.001-06:00

http://www.dailyherald.com/article/20111211/news/712119862/

Spwed Kwismis Chair

2011-12-14T08:00:00.000-06:00

2011-12-13T13:41:00.000-06:00

Two days since we got back from the North Pole and I think we are still recovering from the experience. What an experience it was! Ben is telling everyone about how he met Santa and got presents, Olivia likes talking about "Princess Misses" (Mrs. Claus), and Ariana is constantly playing with the Santa hats they handed out on the train.

I have such wonderful memories flooding my mind, too. Memories of Mrs. Claus who was so incredibly kind to our children - and gave extra special attention to Olivia - and stayed completely "in character" for the WHOLE day, of Ronald McDonald who helped me carry 5 plates of breakfast to our table of kids, of an official police escort to the train station, of swarms of firefighters helping out with everything - lifting the kids in and out of the train and buses, carrying our stuff, chatting it up with the kids, everything, and of all those firefighters, their trucks, all the the things they passed out to the kids on the train - Santa hats, stockings full of goodies, lunch, stuffed animals (Olivia is sleeping with them), games, goodie bags and water bottles from the fire department, fire hats, and all those people standing outside in the freezing cold just to wave as we went by and point the way to the North Pole.

Arriving at the North Pole was intense. Probably 100 people outside waiting to welcome us and cheering like we had won the World Series. I don't know why, but that was incredibly intense and moving. I hate to say "too much" but I wasn't the only one sobbing in the bathroom...it was wall-to-wall women leaning up against the walls and some on each other's shoulders. I can't even type this or go back and review it for editing without getting emotional. It was THAT moving.

Inside Santa's house there was everything - probably a dozen magicians, a princess, Frosty the Snowman, the mayor of the North Pole complete with top hat, a walking-talking Christmas tree, therapy dogs (unfortunately our Lucky wasn't among them), face painting, airbrush tattoos, photo booth, cookie decorating, sundae bar, headband making, nail painting and everyone was just so completely nice and helpful. It wasn't just oh-here-are-some-cookie-decorating-things-help-yourself...nope...it was more like as soon as Ben showed interest in cookies someone was pulling out a chair and someone else was grabbing the supplies and someone else was sitting down with him and helping him decorate. The kind woman painting Olivia's nails fulfilled her every request even though it meant about a dozen different colors of nail polish, polka dots and stripes. And the place was decorated to the hilt. Even the hallway to the bathroom was decorated floor-to-ceiling.

And when it was time to visit Santa it was so special. When we were ready to leave we put our name on a waiting list and they called up a few minutes later. The entrance to his room was decorated like Candy Land. They had adorable stuffed polar bears with ONP branded scarfs around their necks. The scarf fell off Ben's and even though I - his adoring mother - was standing right there he wanted Mrs. Claus to fix it for him...she was that wonderful! We were led back to Santa's room where he was waiting for us in a big chair sitting next to a roaring fireplace. Something about that room was so special. Maybe it was because it was the first time in about 6 hours we were relatively alone, maybe it was the quiet relief of being out of the big crowd, or maybe it was Santa magic. Whatever it was, it was special.

Then we were brought through another door where our coats were waiting. It was a little hectic getting the kids in coats and assembling all our things so when a woman said, "Don't worry, we have some people who will help you bring it all out to your car" it didn't quite register what she was talking about. When we pulled the car up there was a mountain of gifts waiting. A mountain. It took some creativity getting it all into our van. We have an Odyssey. It's not like it's a small 4-door sedan. It seats 8 passengers. We were STUFFED in there. I had to sit crossed-legged in the front passenger seat because gifts took up the foot well. It was another overwhelming moment. I confess I did one of those ugly crying/laughing jags.

When we got home and unloaded everybody and everything the kids started ripping open presents. Olivia opened her first present - a baby doll - and she was done. Not interested in any more presents because she had a new baby doll to play with. Hahaha. Ben was tearing through them like it was a race. Two remote control cars, a HUGE fire engine, clothes, and all sorts of other stuff. Ariana got her phone, and tons of other toys, books, and a princess couch that folds out into a bed with sleeping bag and a HUGE, pink teddy bear about 4 times her size which she loves to scream and tackle. I can hear her happy screaming across the house and I immediately know she is attacking that bear. Olivia has been diligently attending to her new baby and has requisitioned the princess bed, which Ariana has already barfed on and caused much uproar. Hahaha. All three kids have been pushing that firetruck around the house. Ben has been driving his cars all over the place and wore his new BuzzLightyear shirt and matching socks to school yesterday. It's pretty much been non-stop joy around here.

Joy.

I think that's the take-away we will have forever from our experience with Operation North Pole. It's been a rough year in many ways in our life this year and especially recently. We have certainly had some terrible Christmases in the past. (Remind me to tell you about the "Manger Rage".) As usual, pictures often speak louder than words -

Christmas Past...

Christmas Present...

Ari playing with her new bear from ONP

2011-12-12T18:06:00.000-06:00

2011-12-12T16:37:00.000-06:00

Signed...

2011-12-11T20:51:00.000-06:00

After

2011-12-11T17:20:00.000-06:00

Before

2011-12-11T17:19:00.000-06:00

2011-12-11T17:01:00.000-06:00

Wow!

2011-12-11T16:43:00.001-06:00

Wow! That just about sums it up. Too much to write about with my thumbs on my phone, but it was crazy fun. We are on the way home now and the only one with leg room is the driver...we are crammed into this van with presents. Ridiculous amounts of presents.

I hope nobody had a fire in the Northwest suburbs because every firefighter, truck, ambulance...EVERYHING was involved in this. Tell ya what, I sure do love firefighters now. Big time.

2011-12-11T16:25:00.001-06:00

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2011-12-11T15:54:00.000-06:00

Nail painting

2011-12-11T15:14:00.000-06:00

Cake pops

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Punched tickets

2011-12-11T12:17:00.000-06:00

Stockings!

2011-12-11T11:46:00.000-06:00

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Tickets

2011-12-11T11:26:00.000-06:00

2011-12-11T11:13:00.000-06:00

Looking at the flashing lights

2011-12-11T10:51:00.000-06:00

Olivia tells Mrs. Claus "you look like a princess!"

2011-12-11T10:48:00.001-06:00

Olivia asking Mrs. Claus where Ronald is

2011-12-11T10:45:00.000-06:00

On the bus

2011-12-11T10:19:00.000-06:00

We have police escorting our convoy of busses...lots of stares from passing cars!

2011-12-11T10:17:00.000-06:00

Olivia loves Mrs. Claus

2011-12-11T10:16:00.001-06:00

On our way to the North Pole!

2011-12-11T08:09:00.000-06:00

The kids were excited as soon as their feet hit the floor this morning. Ben was the first up and came to ask us, "Is it 7 clock yet?"

Fwd: Live Feed for Tomorrow's Polar Express!!!!

2011-12-10T18:41:00.001-06:00

Begin forwarded message:

From: Tim Crossin <tjc9253@gmail.com>
Date: December 10, 2011 6:08:47 PM CST
Subject: Live Feed for Tomorrow's Polar Express!!!!

Hello to All.....
You're not going to believe this but, ...... Santa has just informed me that he thought it would be cool to have a live broadcast of tomorrow's polar express experience.... (He's turned in to such a techie these days!...) Well, he wanted me to tell you to tell all your friends to go to www.santaspolarexpress.com starting at 9:00 am.... you never know what you'll see!
Ho HO HO!!!

see ya tomorrow!
--
Timothy J. Crossin
Treasurer
Operation North Pole, Inc
50 W. Oakton Street
Des Plaines, IL 60018
www.operationnorthpole.org

Going North

2011-12-10T10:02:00.001-06:00

Our family is headed on a trip to the North Pole this Sunday!

The director of the Ronald McDonald House at Comer UCMC has contacted me about participating in this Operation North Pole thing for a couple of years now. Each year we've declined the invitation because Ben has been in the hospital for testing and appointments or whatever. December is one of our months for our 6-month routine appointments, so it's generally kind of busy...oh yeah, and then there is Hanukkah, Christmas, Grandpa Wuhwuh's birthday and Granddad's birthday.

And then there is the whole idea of this thing. It's hard to accept. On many levels. For one, it's hard to accept charity. Maybe it's a pride thing...not wanting to be pitied. I think I could admit that in a small way, but the bigger emotions come when I read what this is for - "...bringing a day of Christmas joy to local children suffering from life-threatening illnesses."

There is a place in my gut somewhere that I feel that. Like I feel an actual physical feeling of strange, dark twisting in my gut when I read those words.

suffering
life-threatening
illness

A big part of me screams "That is NOT our child!" Then again, the reality of what is going on with him isn't any more in-our-face as it has been recently as we have been running the gauntlet, once again, in trying to secure private health insurance for him. It's one thing sitting in an appointment with a specialist reviewing the details of one of his defect areas; it's another thing entirely going over every single little thing in ALL of the defect areas with a nurse representing the insurance company grilling us with questions. Yeah, BlueCrossBlueShield sure seems to think he has an illness.

Life threatening, though? I was talking this point over with another VACTERL mom and her point was, "Uhm, do you even notice any more the 'possibly result in death' part of the consent for anesthesia?" No, I don't, actually. Fine.

But, suffering? He's not suffering. Well, I suppose he suffers a little when I put him in time out for kicking people. He's still just a normal, happy, goofy preschooler whose day-to-day life is normal. And then a topic recently came up in one of the online support groups about pain management and it got me remembering the worst pain I've ever seen him (or anybody) in when he was screaming and sweating and passing out in my arms. The countless times he's been held down on a table by half-a-dozen people to get this or that testing done while screaming "It hurts!" I can't even remember how many times he's been stuck with needles this year, but it's enough that when he sees someone who looks medical he immediately tells them, "No shots!" The front desk people at clinics find that especially humorous. So do janitors. And when I'm awake at 2:00am for no other reason than I can't get these memories out of my head (intubation, blood, tubes, screaming, incisions, doctors frowning, nurses crying)...I can't deny he has suffered. Us, too.

I was explaining to him the other day what Operation North Pole is and why our family is going. I explained it was just for families with a kid who has to see the doctors a lot. He exclaimed, "Hey, I have to see doctors a lot!" True.

So, I am sucking it up (my pride, my fears, my denial) and we are going to the North Pole this year!

When Ben and I were staying at the Ronald McDonald House Comer this fall for his MRI they gave me the application forms again and I finally got them filled out and sent in. One of the forms was requesting a list of toys the children (yes, all three) would want. Ben was easy - Lightening McQueen anything. Olivia is easy, too - anything related to baby dolls or Dora. Ariana, well, she's a baby so I just wrote down "phone" because she loves talking on the phone. I didn't really know what to expect from this Operation North Pole thing other than what the RMH director has told me...something about taking an airplane or train ride, someone playing santa, but not much else. I started to get an inkling when the ONP president emailed me...

"I did notice on Ariana's list you only put down PHONE .. I am assuming
that is a child's play phone. Could you provide a few more items that
she might need or want. Clothes and sizes, favorite types of toys etc."

To which I replied: "Thank you so much!! Ariana is just a year old so she won't really notice or care about gifts and as the youngest of three there isn't anything she needs...but then I felt bad not writing down anything for her hahaha. So I wrote "phone" because she loves playing with phones or anything that resembles a phone. Wrapping paper would be just as entertaining to her so please spend the time/money on the other children there. :) "

Then she replies: "I wanted you to know that it is our policy to treat each child the same and spend
the same amount of money on each. Maybe Ariana needs some clothes as she grows bigger each day. I know being the mother of 5 and thegrandmother of 8 they grow like weeds. Unless of course she wants that new IPhone..."

WHAT?!

I relented and sent her clothing sizes. Then I started researching (stalking) ONP on the internet to get some more info about what this day would be about.

There is the Operation North Pole (ONP) website.

Then they emailed me a schedule. We are supposed to arrive at the IAMAW hall in DesPlaines at 8:30a.m. where they will register our family and then a bus takes us to the train station. We take a long train ride on the Polar Express with games, activities, and lunch. Then we arrive at the North Pole where we meet Santa.

I found this home video where I can see these ONP people go all out...decorations, food, lots of hamming it up, clown, elves, snowmen, etc. Oh, and uhm Lovie Smith is there.

And I found this promotional video. It is hard to watch, for me, because it's more of that "Hey, we aren't one of those families!" (Although you'd think after a Ronald McDonald House director refers us to this program multiple times I might be able to accept the face that we are.) And then one of the firemen volunteers in this video says "Their ordinary is different than ours" and that hits me to the core. One, because it's true, and two because I'm so struck that other people recognize that about families like ours.

And if these videos didn't make me lose it (they did) the ONP facebook page put me over the edge. Over the past year they have been requesting donations, recruiting volunteers to come build parts of the north pole set, asking "elves" to go out shopping for the kids' wish lists, organizing wrapping parties. Here are a few of the status updates for the group -

"Chris Van Allsburg the author of the "Polar "Express" will be autographing books for each of the ONP families... Everyday something new happens here at the North Pole. Always GOOD !!!!!"

"I wonder what great things will happen today............For all of you Metra riders you will find a small story about ONP in the Metra Newsletter on each and every Metra Train in December !!! THANKS METRA !!!"

"Today our visitors to the North Pole are the Scahumburg Sluggers Girls Softball Team and their parents. They are here decorating for our Polar Express event.. What a great group of girls.. THANK YOU !!!"

"ONP found out today that over 100 confirmed firefighters will line the route from Harvard to the North Pole on our journey Sunday.... That does not include the general public that will be out cheering for our precious riders...Thank you to ALL!!!"

Earlier this week I got this email - "Santa ask that I send out notice to you all that you should make sure that you have empty trunk space..... just in case your children made the "Nice" list. Santa can get carried away sometimes... "

Soooooooooo, looks like tomorrow should be...NUTS! Hahahaha. I think we are excited and nervous at the same time. It's both comforting and difficult to be in the presence of other medical families. I have a feeling, though, the day is going to be so exciting we won't have time to think about it. :) I will do my best to take lots of pictures, of course.

2011-12-09T16:54:00.000-06:00

Life has settled down enough that I've started to get some semblance of a routine going on around here and have, for the most part, been actually cooking meals and stuff. Don't make fun of me, but four recipes have had a big impact around here -
1) Laundry detergent - This is the basic recipe I follow. Yes, it works. No, it doesn't make lots of bubbles. No it doesn't smell like a summer breeze or lilac gardens or tropical paradise. It washes the dirt out of the clothes. And it's CHEAP as heck. Seriously. Now that I have somewhat of a routine I can tell you that I do two loads one day and three loads the next. That is 17-18 loads of laundry every week. Not including the husband's laundry because I refuse to do his since he can't seem to put his dirty clothes in any one spot. 17-18 loads EVERY WEEK. No wonder our septic pumps blew out in the same week.

2) Yogurt - Yeah I've started making our own yogurt using this recipe - she knows her yogurt! Do you know how much whole milk yogurt costs? Oh my. I make a gallon of yogurt every week and it still runs out! A gallon! But at least now it just costs as much as the milk. Making yogurt is really, really, ridiculously easy.

3) No-knead, 5-minute-a-day bread in the dutch oven - I know we are late-comers to the whole no-knead bread phenomenon, but whatever. I use this recipe and then bake it in a preheated dutch oven. And, for real, you mix together the ingredients and do NOT KNEAD and you have a bowl of dough to make fresh bread with for two weeks. Fresh, tasty, chewy-crust bread every day. Cheaper, tastier, and easier than buying it.

4) Salad Dressing - who would have thought that crazy family of who-knows-how-many, the Duggars, have the world's best salad dressing recipe?

Just so you don't think this is a battle tactic in the mommy wars or my trying to show off how clever and amazing I am around the house, I want you to know that on almost any given day at least one - if not all three - of our children are missing an essential piece of clothing...usually pants. Okay, they're often topless, too. (Sorry, granddad, but it's true!)

2011-12-08T17:51:00.000-06:00

2011-12-08T17:50:00.001-06:00

A little explaining to do...

2011-12-08T16:23:00.001-06:00

Where the heck have we been? What have we been doing? Who has been keeping an eye on those babies? Where are the updates???

I know, I know. I've slacked off! It's not entirely my fault. I lost my phone and the ability to make "mobile posts" which have really been the easiest way to update this blog lately. Then my laptop went on the fritz. Woe is me! Now I've finally gotten on the husband's desktop/work computer to make a much-overdue update.

Ready for this? No big news. :)

Which is big news in and of itself don't you think? The last big incident was Ben's weird, and now-resolved yawning thing (tic?). And, yep, he has stopped doing that. Huge relief! His neurosurgeon isn't worried about the radiology report and the last MRI, so neither are we. Phew. Phew, phew, phew.

And...that's about it.

Now that I've gotten reconnected with technology here I will do my best to update at least some photos. Honestly, when I finally got on a computer where I could check the status of this blog I figured people had probably given up on checking it. But, lo-and-behold there were 67 page views yesterday. Freaks! Just kidding. ;) So, if you're still out there (and maybe it's just Grandma Linda checking over and over and over again), I will try to be better about updating.

XXXOOO

2011-12-08T16:22:00.001-06:00

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2011-10-09T13:46:00.000-05:00

Field Trip

2011-10-03T16:23:00.000-05:00

Ben's preschool organized a field trip to a local agritainment spot. He had a great time on the haunted hay ride, the petting zoo (which he deemed too stinky), the spooky house (which he LOVED) and the playground.

MRI results

2011-09-27T15:15:00.001-05:00

Good news - no tumors.

Bad news - the syrinx (spinal cyst) has grown; and apparently the video EEG did catch one seizure-like burst

So, we head back to his neurosurgeon to consult about the syrinx. We leave the yawning and possible seizures alone unless they start disturbing his life, get worse, or other jerky, repetitive movements show up.

Already emailed his neurosurgeon and got an out-of-office reply through early October so it looks like it will be a while until we find out what he thinks.

And you know how nice and patient we are...

Out!

2011-09-27T13:15:00.000-05:00

Groggy and grumpy but finally the MRI is done. They did "seizure protocols" which apparently made it take longer.

Out like a light

2011-09-27T09:43:00.000-05:00

We had a pretty easy morning. Woke up, got dressed, and headed to the hospital in good spirits. The only indication he was missing food was when we were leaving our room and he suddenly yelled, "Wait! We forgot my Lightning McQueen cup!!!!" Although that may have been more a reflection of his love of Disney race cars than his desire for a drink.

Everything was smooth as could be until he saw the gurney. We sat him up there and as I turned to out my ours down in a chair I heard a nurse say, "Where ya goin'?" I turned around in time to see his heel just before it went around the corner. I have to give him credit for making it as far as he did. I chased him down and hauled him back kicking and screaming. Lightning McQueen to the rescue...as soon as I got my iPad out and put the race car game on he was like putty in our hands.

"I'm going to give your hand a little stick now, okay?"

"Yeah soy." (He still doesn't quite have his r sound yet so r sounds like "oy" and darn is it cute!)

Once the tourniquet was on he put up an excellent fight requiring four people and myself to hold him down and get the IV in. Unfortunately the first stick didn't do it so they had to give up and go for the other hand. That is a special kind of fun.

He fell asleep muttering about how he wasn't going to sleep ("I'm not....not.......not......") as he tapped away on the driving game until his little finger fell asleep, too. First time EVER he has succumbed to sedation without a bolus of propofol. Woo!

Random update...earlier this week Ben asked me, "Why does this hand feel different than this one?" When I asked him what it felt like he said "like sparkles" so I'm thinking that means tingling. It was kind of alarming especially since he seemed pretty concerned. He hasn't complained about it since, so maybe it was just a fluke or his hand fell asleep or something.

Anyway...he is back in the MRI now and they told me it would be a couple if hours so I expect he'll be done around 11:00a.

So now I wait. And drink coffee. And eat a cheese danish. And maybe a bagel, too. And some more coffee.

Sleepover with Ronnie

2011-09-26T21:44:00.000-05:00

Ben and I are once again tucked in at a Ronald McDonald House. It's been...gosh...years since he and I spent the night at one of these places.

Tomorrow morning is his MRI of the spine and brain. It will have to be done under sedation which unfortunately means yet another needle for him. No eating until then either. Morning should be uhhhhhhh challenging. I have tried to impress upon the sedation team how resistant he will be. The nurse said, "Oh, we will spray the area with this numbing spray." She couldn't seem to understand that I'm worried I won't be able to get him through the door.

This MRI is being done to check his spinal cyst (syrinx) to see if maybe it has grown and to look for tumors or other abnormalities that could be causing the excessive yawning. We were really hoping it would resolve before now so we could skip this test...but no.

Hey, on the bright side it's been over a year since we last knocked him out. Yay.

Meh. :(

I much prefer to see him sleeping like below (tucked into his bed here at the Ronnie House) rather than the surreal, plastic-like sleep of drugs. I don't know what's different, but it's SO different.

Meh again. :(

More game pics

2011-09-26T14:27:00.000-05:00

It's not a Cubs game if at some point you aren't covering your eyes, ears, or both...

Ariana especially enjoyed the clapping...

I had to bribe Ben to get him to smile for a picture...(totally worth it).

Olivia mostly wanted to "look around" and was sorely disappointed the shops didn't carry any baby dolls.

And here we are! Finally, photographic proof that our children are not motherless.

Take me out...

2011-09-21T13:37:00.000-05:00

Outta here!

2011-09-14T11:04:00.000-05:00

Neurology just stopped by on rounds and said the EEG came back totally normal. Woo! They say this is most likely a tic - although an unusual one. However, they are concerned about the possibility of the cyst in his spine causing this so they are recommending an MRI. That will be done under sedation, but outpatient. In the meantime, we are outta here!

Good morning, good morning...

2011-09-14T09:03:00.000-05:00

...we worked the whole night through! Yep, it was a long night but on the other end of it is scrambled eggs, donuts, and coffee. Haven't heard yet if anything turned up on the EEG, but they should be doing rounds before noon so we will see then. Got the results from the echocardiogram done last week and it was normal, so that is good.

All wrapped up and nowhere to go

2011-09-13T15:51:00.000-05:00

The EEG is all set up so now we just hang out and push a little button every time he yawns.

Sticky buttons

2011-09-13T15:21:00.000-05:00

We are officially admitted to Comer Children's and Ben is being a good boy getting the sticky buttons (EEG leads). Thank you iTouch and Cars movie on TV! So far he has only made a run our the door four times. They have ordered bubbles STAT. ;)

Happy Birthday, Ariana!!!!!

2011-09-13T09:28:00.000-05:00

First Day of Preschool!!! (Yawn)

2011-09-06T22:07:00.000-05:00

Ben had his first day of preschool today! Look how excited he is!

Just kidding. Sort of. So, here is for real Ben's first day of preschool photo...

So cute! So excited! He loved it. Really, really loved it. Mostly because of the bucket of toy cars, but still he had a great time and can't wait to go back again tomorrow. But, here is why he had to leave early and get the EKG pictured in the first photo...

He has been excessively yawning for several weeks. Yes, it sounds silly. Okay, it IS a little silly. But when you see it happening it's really not silly. He yawns, on average, about every 25-seconds and sometimes more frequently when it's really bad. He yawns himself to sleep. He had a few yawning spells in the middle of the night. And he yawns for several minutes every morning. He yawns when he's playing, when he's reading books, when he's trying to eat, and when he's trying to talk. There are often several hours where he will not yawn that much and we get really excited about that. But then he's back to the yawning.

We started with a trip to the pediatrician who says this is most likely a transient tic disorder. Most common in boys and often in boys his age and exacerbated by stress...and goodness knows the kid has had stress this year. But, of course this is a diagnosis of exclusion so we have to exclude all sorts of lovely things like seizures and heart problems and brain tumor. Funny thing about yawning is nobody really knows what it's about...so it's difficult to say if it's a problem when you yawn too much (or too little).

So, first thing we did was yet another round of blood work. Our boy is a human pin cushion these days I swear. That blood work came back totally normal. GREAT in fact. His bicarb - an indicator of kidney function - was the best it's ever been. So that was pretty exciting. Ben got a Lightening McQueen race car that "goes when you pull it back" for that ordeal.

Then he had an EEG which was also normal. He got a Lightening McQueen race car track from Child Life AND a pair of Lightening McQueen roller skates from his mom and dad for that experience.

This afternoon he had the EKG. Lollipop.

Tomorrow morning he gets an echocardiogram. Bribe-to-be-determined.

And next Tuesday, September 13th...well, he gets to be hospitalized. (@#%$@#$!!!!!!) The neurologist recommends doing a video EEG to try to catch more of the yawning on the test and get a more firm diagnosis. He said the short EEG already done is only 70% successful at detecting seizure activity. So, Ben will get admitted to Comer Children's at University of Chicago Medical Center and stay 24-48 hours for testing. We are trying to talk up the positives - eating in bed, cookies, playing with toys, watching movies, Grandma Linda and Granddad visiting, etc. He actually seems somewhat excited. Finger crossed!

I am in contact with a doctor in France who does research on yawning. It's been interesting. His recommendation - "I thing that the baby needs an RMI to search a brain pathology." Uhm, okay. I've written him back explaining that Ben has had at least three MRIs of his brain that were normal...although they were done several years ago. We aren't in love with the idea of sedating him for yet another MRI.

In the meantime, we are treating this like a normal childhood tic. Ignoring it. Reducing stress in his life as much as possible. Ignoring it. Ignoring it.
Okay, this would be WAY easier to ignore if yawning wasn't so contagious! I swear I've felt like I've had the flu the past three weeks it's so exhausting to be around someone who is yawning all the time.

How is that for a long-overdue update? Bet you weren't expecting THAT. Yeah, just when we think we've heard it all...:(

2011-09-06T11:32:00.000-05:00

Olivia!

2011-08-29T20:56:00.000-05:00

Holy Ben!

2011-08-29T20:55:00.000-05:00

Ben!

2011-08-29T20:54:00.000-05:00

Baby on the road!

2011-08-29T20:53:00.000-05:00

Well, it's a rubberized play road at the park...

2011-08-28T16:20:00.000-05:00

Granddad's slippers

2011-08-18T17:49:00.001-05:00

Don't bite your friends!

2011-08-18T17:47:00.001-05:00

Quote of the day

2011-08-08T09:50:00.001-05:00

"Why is Ariana crying, mama?"

"I really don't know."

"I think it's because she doesn't have very much hair."