September 27, 2011

MRI results

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...


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

Out like a light

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 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.

September 26, 2011

Sleepover with Ronnie

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

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.

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September 14, 2011

Outta here!

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...

...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.

September 13, 2011

All wrapped up and nowhere to go

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

Sticky buttons

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!!!!!

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September 06, 2011

First Day of Preschool!!! (Yawn)

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 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...:(
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