Remodeling

Houses take maintenance and when you’re facing increased medical bills, one less income and life with a chronically ill child, things like house maintenance can get behind.  We have finally reached a point where things were looking bad enough that we can wait no  more.  The last of the painters is coming to give us a quote today and we have some moderate landscaping plans.

Just knowing that there is a plan in place and that we are taking back the control of our lives…that’s pretty big.  It’ll be several weeks before everything is done, but today, Owen and I made our first home improvement.

Some would say it’s a small improvement, but I know ANRC readers will think differently.  Here is the Before & After.

20130711-120825.jpg

 

Do you notice something different on the right?  The lack of this something, perhaps?

20130711-124037.jpg

That’s right!  PHS took all of our oxygen supplies out of the house today.

I insisted on helping carry everything out to the delivery  pick-up van.  It felt like I was taking some control.  In truth, the real control that I showed was the resistance of not taking a baseball bat and going a little Office-Space on that evil pulse oximeter (monitor) that kept me up at all hours of the night for the last 1.75 years.

I definitely have some nervous apprehension about this (literal) life-line leaving our house, but mostly, I feel like it’s a wonderful step forward.  It shows how far Owen has come and maybe it’s not as obvious on the outside, but also how far the rest of us have come.

Peace out, oxygen.  Don’t call me and I won’t be calling you.

 

Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.

Owen’s (Second) Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

Well, here we are…still.  I wrote you that letter way back in June letting you know that I really appreciated all that you’ve done for me but this isn’t going to be a long-term relationship.  I mean, I know we’ve been together longer than most, but I made it clear, this isn’t going to be a permanent situation.  It’s starting to feel like we’re Jake Gyllenhaal and Heath Ledger’s Characters in Brokeback Mountain and you just can’t quit me.

Just to be really clear.  I plan to quit you real good.  Well, you know, as soon as the doctor approves it.  Yep, I hear the word and you’re out the door.  Or… at least in the backroom so you can be there in case I get sick and need your help.  I won’t jinx anything by sending you completely away.  (My mom’s really superstitious about these things.)

So, I’ve been thinking about it a lot lately and I came up with an idea.  You know all the stories of people in Hollywood having fake relationships for PR reasons?  They aren’t really dating, but they pretend to date to improve their image?  I’d like to suggest that we take that route.  I don’t want to jinx myself by completely getting rid of you too soon (plus, the Pulmonologist thinks she gets a say in these things) I know you’d like to stick around with a hot number like myself for as long as you can, so for both of our sake, we’ll just pretend to be together for this last stretch.

Here’s how it’s going to work:  When we know we’re going to be around the paparazzi (I really have to talk to Santa about that darn camera he got for my mom), we’ll act like everything is perfect.

Here we are looking happy as can be at the Playroom Premiere.

premier1

Maybe a little off-kilter, but we’re looking pretty great at this show of mine.

show

And I’ll even add in a few of those fake, “No, no, don’t take my picture” type poses (note that perfect placement, wink, wink).

no

 

But when the paparazzi isn’t around, I’ve got some other ideas for us.

This is a really good trick, because if people don’t look close, they might not even notice you’re only in one nostril.  The fact that I’m pretending to eat…and making it look like I enjoy it, is an added distraction to what’s REALLY going on.

eat

 

 

There is also the around-the-neck trick

20130216-102903.jpg

 

Or, around-the-forehead (blurry shot, but the dang paparazzi got it with her iPhone.  Those iPhones are dangerous for people in the public eye)

20130216-102945.jpg

 

Another good one is, just-over-one-ear

20130216-102838.jpg

 

At night when we’re sleeping, there are the platonic cuddles.

20130216-102823.jpg

 

And then, for those moments when the paparazzi just can’t seem to stay away, I’ve always got this little number up my sleeve (dad mentioned that next time I do this, I shouldn’t leave personal artifacts behind – hey, I’m not even two!).

photo (69)

 

So see, I really think this is going to work.  We’ll show up at the doctor’s office and any public outings looking like we follow the rules, but when I’m running the show…just feel free to keep your distance, okay?

Thanks, love-ya (note:  that was not “I love you”, that has a very different meaning)

Owen

A note from the Editor:  As Owen calls out, his mom is very superstitious about these things.  It should be made very clear that the above thoughts are Owen’s thoughts and Owen’s alone.  Mentioning life without nasal cannulas at some unknown time in the future is not reason to be jinxed with an illness that would set Owen back further and extend his time on nasal cannulas…so blogger jinx, stay away!  Thank you.

A note from the Paparazzi:  It should me noted that after taking pictures of the evidence of Owen’s transgressions, I’m always sure to follow the doctor’s orders and replace the cannulas in his nose.  I’m one of those honest, paparazzi.  Paparazzi jinx, also, stay away.  Thank you.

The real meaning of RSV

Kellen had his four-year well visit today.  I asked the doctor if he thought it’d be okay for Owen and I to take Kellen into school again, and I got the, “that doesn’t make me super comfortable, ” look.

Flu is on a downward trend, but still prevalent.  RSV is prevalent and still hasn’t peaked.

Boo Hoo.  Self pity party.

I really need to stay off Facebook for a while.  I get so jealous when I see so many other preemies out living normal lives.  I’ve gotten pretty good at not comparing Owen to the general population, but I sometimes can’t help but look at other preemies who have had tough courses and do a little comparing.  I know it’s not healthy and I don’t dwell on it much, but I have my moments.   It stings a little to see them doing things developmentally that Owen’s not yet, but what really bothers me is when it feels like we are the only ones who have such a tight lockdown.

Let me lick my wounds for a moment.

Owen didn’t even get to go to his brother’s birthday party.  I’m not sure who that makes me more sad for.  Kellen’s first question when I told him he was having a pool party was if Owen would be able to go.  I know he’d love to play in the pool with his brother.  Owen would have liked it too.  He’s such a social guy and the world deserves to be warmed by his sweet smile.

Last week I even canceled a well visit for Owen because I didn’t want to take him into the germ-filled clinic.  His doctor supported the decision.

I know isolation this time of year is the best thing we can do for Owen.  We had even tighter lockdown last year and still had nearly 50 days in the hospital due to respiratory illnesses.  Most of that was RSV related.

Can I tell you how much I hate those 3 little letters?  After seeing blogger friend, Hipster Hausfrau have both of her kids admitted to the hospital for RSV over the weekend, I had enough.  It was the Hasfrau’s birthday the day they got admitted…Happy Birthday, Leda!  So, in honor of the 8 days we are 35 together, I renamed RSV.

Sometimes there is no nice way to say it.

Sometimes there is no nice way to say it.

I also have a name for flu, but I figure there were enough f-bombs slung around during the Office Space clip yesterday.  I want to keep my PG rating.

Tangential thought, wouldn’t it be great if we could go Office Space on flu and RSV?  I’d get some real enjoyment kicking the snot (literally) right out of those viruses.

So, fellow preemie moms sticking to your isolation plans.  Today, I salute you.  This sucks, but we’re in it together. I send you hugs of support and hopefully gave you a little smile today.  Need a space to vent about being stuck at home…my comment section is open.

xoxo

PS – If you’re like me and love statistics (when the math is performed by other people).  Here is the link to the CDC RSV tracker.  Click the state to find your area.