Monday, April 14, 2014

Welcome Wayne State!

Hello Wayne State Doctoral Students! 
As promised - here is an updated post to my blog.  The first in years, just for you! 

As expected, much has happened in Owen's life in the past few year.  Just like an average height kid's would, his childhood has had some ups and downs.  Generally in our day to day life, Owen's dwarfism doesn't cause us a second thought, but there are times when it does play a role and when it does, it plays a BIG role (pun intended?).

One of the most notable affects of Owen's dwarfism was foramen magnum stenosis which after years of careful monitoring was corrected with cervicomedullary decompression in 2010.  Before his surgery, the narrowing put him a greater risk for paralysis (or worse) should he fall the wrong way or get into a car accident.  We were constantly watching Owen - fretting over every little trip or fall and worrying that one accident could leave him severely even fatally injured.  That being said, the decision to proceed with the surgery was agonizing and not taken lightly.  It was a major surgery that involved weeks of recovery and a saw mere centimeters from my son's brain.  He was a happy and otherwise healthy 4 year old who we though would be quite disrupted by this major medical venture.  However in the end, it was the option of our trusted neurologist, who always erred on the side of caution while keeping vigilant watch with bi-yearly MRI's, that swayed to move forward with the decompression.

True to form, Owen surprised everyone.  He handled the surgery beautifully and recovered quickly.  In fact, despite preparing to stay in the hospital for 4 days, we were discharged after just 36 hours. 
The surgery was a huge reminder that I don't have an "average" child. 

*A little side not.  The "we" I refer to in the above story is myself and Owen's dad Dan.  We have since divorced.  Each of us are happily recoupled - he and his wife Kylie were married in Sept 2013 and Kelly and I welcoming baby Liam in Jan 2013.  We co-parent amicably and share joint custody. 

Here are some pictures from the surgery!

Monday, May 17, 2010

I don’t suppose we could skip the explanation part could we?

I guess after abandoning my blog for almost 10 months you’ll probably want some answers huh?  IMG_1872

IMG_1689 IMG_1825IMG_1809   IMG_2010IMG_1883IMG_1785  I think the biggest thing was….I got really busy with work, Owen, and life in general.  Once two weeks went by, I knew I’d have to write a big post and it was daunting.  After 4 weeks?  It got even bigger and I was just plain procrastinating.  I just ended up saying screw it and moving on.  I will say – there was a bit of freedom in not feeling like I had to keep up the blog.  Plus Facebook seemed like a much easier way to update everyone.  On the other side, I felt guilty every time I thought about my poor, cold and lonely abandoned blog.  As long as we are on the honesty train, I will honestly let you know that I make no promises that I will keep frequently posting! 

So now I suppose it’s a Special Edition post of the How Life Is Measured Blog:  Where Are They Now?  If I post more, I fill in bits and pieces of the past year, but for now – I’ll focus on Owen.

IMG_22052 Owen is a total chatter box.  The kid cracks me up!  He’s always jabber jawing about something.  When he’s not actually talking, he’s humming or singing and I’ve gotta tell you, this kid’s got talent.  Maybe he can someday fulfill my unrealized American Idol dreams!  I can see it now his audition song “The Little Einstein Theme”.  Randy would call it “Hot baby!”, Ellen would tell him he’s “adorable”, Kara would tell him she really felt how much passion he had for the song and Simon would tell him he had just had a “moment” and that he will see Owen in the finals. 

But I digress….

Speaking of Little Einsteins, he’s pretty much one himself.        *** SHAMELESS BRAGGING ALERT***                                             He can count up to 25, an read about 20 words and adding more everyday (In fact as I am IMG_20022writing this, he just read “Lions Gate” off of the video he is watching), can spell about 10 works (Owen, Thomas, open, toy, mom, dad, go, cat, dog, Percy, train), and understands concepts like opposites, matching, memory.   That’s not even the best part.  I think I’m most impressed with Owen’s sense of comedic timing.  For example I’ll say to him “I think no Owen”, he’ll look right at me, bat his eyelashes and sweetly say “I think yes mama.”   He loves to sneak up on his Grandpa while he’s sleeping and “charge” him.  Dan and I were talking about money the other day and he walked right up to us and said “No money – no ticket!”. Where does he get this stuff?!

IMG_2114 I love when he change the words around in songs to include his favorite  things like “Thomas the Blue Steam Engine” instead of “Rudolph the Red Nosed Reindeer” or “5 Little Owens Jumping on the Bed” (which of course he sings while jumping on the bed). 


He loves chocolate milk and PANCAKES!!! This kid and his breakfast food.  First it was Cheerios, then eggs, now pancakes. My parents have actually based their restaurant choices on whether or not they serve breakfast at dinnertime.  

Owen still loves Thomas but he took a back seat to Curious  IMG_2043George for a while. Toy story seems to be creeping up on George and the Little Einsteins are making a big comeback.   Oh yeah – just so you don’t think we let our child sit in front of the TV all day, he loves the playground too! 

Hmmm….well I think that should get us started for now.  Yes, I think that will be plenty to chew for the moment.  I will try to post more soon!



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Saturday, June 27, 2009

And he’s OK

Better than OK actually.  Owen has already eaten 4 eggs (carefully chopped and cooled), 2 bowls of cereal (Rice Krispies soaked in milk), ice cream, rice stew and a banana.   He just won’t do the clear liquid diet so the docs said as long as the food is soft and he’s eating something – we’re OK.  Actually, why don’t I back up?

It’s been a very long two days so forgive me if I go astray…But when I woke up this morning could of sworn it was judgment day.  Whoa!  See what I mean?  I’m slightly delirious from lack of sleep.  In fact….You know what.  I’ve got to go to bed.  I’m suspending this mid – post and getting some well needed rest.  I’ll post tomorrow on his surgery.  You’ll thank me.  I’ll be much more coherent.

For those who have sent their well wishes THANK YOU!!! Owen did great and is recovering very well from his tonsil, adenoid and ear tube surgery!  I will at least give you pictures for now!


We took Owen to the Splash Pad to get a final run in before surgery and a summer full of earplugs.




He was as happy as a little clam going into surgery.  Below are some of my favorite pictures.  Click into the album for more!

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Uh…Owen?  Where do you think you are going?


Somebody catch that kid!




No explanation needed.

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Owen was ecstatic to get out of the hospital!  And when I came home from picking up his prescriptions with 6 rented videos from the library, I’ll really got the feeling that he was thinking the whole thing was worth it if for nothing else but those videos.



Thursday, June 25, 2009

Stress, stress and more stress

F*^k optimism.

Just kidding. I thought that would grab your attention though. Aaarrrrggg….

I’m not gonna lie, it’s a very, very stressful time around here. Beyond the miscarriage which has caused me to be poked and prodded like cattle – there are 3 other major things causing our stress.

#3 – I’ve been extremely busy. It’s just been one of those crazy months that I haven’t been able to sit down, relax and take a breather. I haven’t had a no-kid day off in I don’t know how long.

#2 – Owen is having his tonsils and adenoids out and ear tubes put in on Friday. Set aside the enormous anxiety I feel about the surgery, if you knew what it took to actually get him in, you would understand the stress. We started out with a referred ENT in Flint because we didn’t want to have to drive to Ann Arbor for yet another doctor. He scheduled us for tubes right away but didn’t look at his tonsils while we were there. Well, this oversight escaped me until he had an appointment with one of his (yes I said one of his) neurologists to discuss his mild obstructive sleep apnea. The neurologist suggested we cancel the tubes and have the tonsils, adenoids and tubes all done at once. Good idea. We decided that if we were going to do the T&A, we may as well stick with U of M.

Flash forward to 2 weeks later and we still don’t have a phone call from the otolaryngology department (yes, I Googled how to spell that). After several phone calls and several days, still no one calls me back from U of M despite my notes that it’s urgent and a note from the neurologist ordering an ASAP consultation. They finally get me a consultation date of July 16th. Uuuuhhhh, yeah, not going to cut it. I’m furious about lack of urgency for at least the tubes. Everyday week that goes by, Owen is further delayed and at further risk for permanent hearing damage. I finally had to call the neuro’s office back and have the doc send a personal email . Even then they didn’t get back to us until we had decided to go back to our original ENT. It’s the first problem I’ve had with U of M before (aside from billing naturally), but I hope it will be the last.

#1 – Due to some changes, we will be switching benefits. Unfortunately, these benefits are going to have a major effect to our medical care. We were previously enrolled in BCBS which worked very well for us. With the new insurance co, our out of pocket expenses double and most of our doctors are not in network. If we go to a doc out of network, it will cost us 40% of the billed expenses in most cases. Of our family’s 7 doctors, 4 are not in network including Dr. Pauli, the family doc I’ve been seeing for 25 years, Owen’s neurosurgeon and Dr. Tykocki the wonder OBGYN. Beyond that U of M hospital is not in network nor is the hospital that Dr. Tykocki is affiliated with meaning, even if I could work something out with his office, he couldn’t do my prenatal care because I would have to pay 40% of my hospital stay when I had the baby.

I am literally sick to my stomach over it. I haven’t slept well in 2 days because we are not quite sure what we are going to do. Private health care doesn’t look like an option because of the expense especially with Owen. I don’t even know if anyone would cover him with a preexisting condition and if they did it would be at a huge cost.

On top of it all, we have $1000 that we’ve paid into a flexible spending account that if we don’t use by July 1st, we lose. I don't think that stools and light extenders will be covered but are their any suggestions for equipment/needs that a FSA will cover that Owen could use? Anyone have any suggestions or product recommendations?

Also, please tell me your T&A surgery stories. I’m completely freaked out. My main worry is that something will go wrong with the anesthesia or which the surgery and we will lose him. Ahh….ease my mind please!

Uuuuggggg….I rarely wallow and I really don’t want to after the last post, but I’m just really stressed out.

Wednesday, June 10, 2009

Optimism: The Right Stuff

The title of this post pays homage to a speech I wrote as a sophomore in high school for an Optimist Club Oratorical Contest.  I actually ended up winning the entire state competition and a college scholarship with that speech.  I’m a natural optimist as is my husband and it’s times like these that we really have to dig in and find the bright spots in tough situations.

Dan and I have very unfortunately lost the baby.  Last Monday I began to bleed and went to the ER on the advice of my doctor.  Although an ultrasound revealed a gestational sac with a yolk, no heartbeat was detected.  I’ve spent most of last week in the Quest Medical Lab getting blood drawn to detect my hormone levels, which have steadily been decreasing.    All my pregnancy symptoms disappeared as well.

I have another ultrasound tomorrow and more blood work to determine weather or not I will need a D and C.  My doc doesn’t seem to think that I will.  Good news.

Dan and I are dealing with it.  The first few days I pretty much just wanted to curl up in a ball and not speak to anyone.  I was devastated.  We were really ready for this baby and excited to give own a sibling.  Furthermore, we are nervous about the implications of this being  our 2nd miscarriage. 

Luckily, my OBGYN seems to be most wonderful doctor EVER and wants to get the bottom of whatever may be going on.  When I saw him last week – remember this is the first time I’ve ever met him – he said, “So it looks like we might be losing this baby huh?” I said yes and he said “That’s bullshit.”  I thought to myself, ‘You know what?  He’s right!  This IS bullshit!”.  I will write more about Dr. Tykocki in another post.  He deserves a full post. 

I don’t want anyone to feel bad for us.  We’re good.  It is a sad situation, but we are optimistic people lucky enough to have an unbelievable network of family and friends.  People have gone through tougher times than us.  Besides, this gives Dan an excuse to “practice” making more babies.  Whatever happens, we are blessed enough to have Owen.  He makes everything better.  He is our right stuff.

Thank you in advance for all of your support and well wishes.  If there is one thing I have learned from blogging, it is that the support system is astonishing.   I know that you are all there for us and it means so much.  

Sunday, May 31, 2009

The Big Boy Bed

  We have had our share of sleep problems with Owen over the past few months.  When Owen wasn’t feeling well a while back, we let him sleep with us.  I know, I know.   I can hear you all groaning and judging me!  I now realize that I made a total rookie parenting mistake.  One that I have been paying for by the way.  As you have probably guessed….Owen has been sleeping with us for about 2 months straight now.

There was a lot of laziness on Dan and I’s part.  At first we were able to get him to bed in his crib, then he would wake up in the middle of the night crying.  It was so much easier to just bring him in to bed with us (clearly what Owen wanted) than to stay up and struggle to get him back to sleep.   On top of that, we liked being able to cuddle him at night, something he doesn’t really allow us to do during waking hours (he does have a reputation to uphold). 

Over the course of his mommy and daddy bed vacation, he started becoming not so fun to sleep with.  He kicks!  Dan and I would wake up in our king  sized bed each on the far edges with Owen sprawled out in the middle.  The last straw was when a rogue toenail left Dan’s back a mess.  I haven’t seen Dan’s back that scratched up since…well…um…I suppose that’s not appropriate….Moving on!

Anyways, we figured a big boy bed may help our plight although we had managed to get Owen into his crib for 3 nights previously. We decided on a toddler bed vs. moving right to a twin just for the transition factor.  Plus the smaller bed means Owen can get in and out all by himself without a stool.  The bed was only $60 at Wal-Mart and uses his crib mattress so we can still keep all his sheets and bedding for now.  One drawback – we just realized that it carries a max weight of 50 lbs. Ooops! I laid in it with him last night to help him get to sleep.  You’d think they’d account for that huh?

Owen’s first night was last night and HE FELL OUT!  I felt so bad!  We didn’t even think to put pillows on the ground because we thought the rails would stop him!.  It’s worth mentioning that I have hardwood floors.  Poor kid! Now come to think of it, I guess he’s used to sleeping on a huge bed with 5 and half foot human guard rails so maybe it’s not that big of a surprise.

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Tuesday, May 26, 2009

Shout out to Katie (Yes that's you Katie Johnson!)

I'm adding Katie's "Polka Dot Pig" button to my site. She does amazing handmade crafts and I want to be one of the ones to say she knew her before she went all Martha Stewart on us (uhhhh...not the insider trading and jail stuff...just the famous crafty home goddess stuff...I hope).

Ahem, anyways...Visit her site The Polka Dot Pig.