Flaws

So I had a little dental work done today.....

5 hours of being in a dental chair little.  

When I was 8, my newly permanent front tooth was knocked out completely courtesy of my big sister Kim pulling me off a bathroom cabinet. I hit my open mouth on the hard counter top and it split it in half. Long way. The next day the other half fell out in my breakfast cereal bowl. 

Needless to say, I have had years of dental work. From a partial flipper of just that one tooth until it was permanently placed in high school. Then a bridge placed 2x through my adult years. 

And I've never been completely happy with how it looked. Don't get me wrong-each change was an improvement over the previous one, but I still hated the way my smile looked. It bothered me in all my pictures. 

Most of you have no idea my 3 front teeth have been fake for the last 36 years of my life. And until I post the pics and point it out, you probably have never even noticed. 

But I knew it. And they bothered me. 

It was a flaw. 

One, that to me, stuck out as big as if it were a third eye in the middle of my forehead.  And I longed to have it fixed. So today, I did. 

And Dr Erica Fisher and her staff at Family Dental Care did a fabulous job!  I am ecstatic at how it turned out. 

Here is the smile I've had for the last 9 years-which is the last time I had the bridge re-done. And you will probably not notice what I hate about it-but if you look, you'll see how my 2 front teeth are HUGE compared to the teeth on either side of them. I feel like I look like a chipmunk.  

See-chipmunk teeth. 

Today-in stages:

Carbocaine injected in my gums pre-pulling of the old bridge. 

And this is your mouth on meth...lol. 

No seriously-the missing the middle tooth is where my permanent one was knocked out. Over the years, I've had the other two shaved down for bridges. 

Nice huh? 

Finished product!  I love it!!  

See how perfectly lined up they are?  

I seriously am over the moon with how gorgeous they turned out. 

Now, I'm sure some of you are thinking I'm a vain bitch complaining about a few uneven teeth. But inside, it really bothered me every time I looked in the mirror.  

It was a flaw. 

A superficial flaw. 

A cosmetic flaw. 

And I hated it. 

And now it's fixed. 

And I can't stop smiling. 

(Or running my tongue over them because they are so smooth and even now!)

So let's talk flaws. 

We all have them. 

Some are cosmetic, like this one. 

And I'm sure nobody, not even my husband, can understand how much it bothered me. Or that it even did. 

But it was my flaw. 

My crack in a perfectly smooth surface.

My third eye. 

And I took the plunge to fix it. 

To make it prettier, better, to make my smile what I've always wanted it to look like. 

Some flaws are not cosmetic like this one. 

Some are character flaws. 

Being judgemental. 

Big flaw. 

I've got that one too. 

I jump to conclusions when I see people. 

Heck-when I see a person with a mouth like mine in that picture up there, I automatically assume they do drugs. 

Or don't have good hygiene. 

I don't stop to think that maybe their sister knocked their teeth out and they haven't been as fortunate as me to have parents who could afford dental care to fix them. 

Big character flaw. 

And one I am working to fix. 

Every single day. 

One that we all have. 

And one that we can all work on. 

That cheesy saying about  "be kind, for everyone you meet is fighting a battle you know nothing about"  Wendy Mass the Candymakers 

Well, I've always tried to live like that, but I'm not perfect and I've been judgy and condemning. 

Flaw. 

And only I can fix that flaw. 

It was easy for me to fix the cosmetic flaw I had. It will be harder to fix the character one. 

But every day that I look in the mirror and smile and see that one thing that bothered me was fixable, I know that is one more day I have to work on my other flaws. 

That I have another day to be less judgy. 

Less condemning. 

Less assuming. 

Wouldn't the world be a wonderful place if all our flaws could be fixed in 5 hours?

With each smile, I know that it's my opportunity to continue working on my personal flaws.   

And my opportunity to be kinder. 

And my opportunity to help someone else fight their battle I know nothing about.  

I encourage everyone to think about their personal flaws. 

Cause we all got 'em. 

And if we all worked on them one smile at a time, this world would be a much better place. 

Thanks again Dr Erica and Jenna and Kim and everyone at Family Dental Care!  

Rawley Re-cap

While Hailey is back in the OR having her tonsils taken out, I figured I would do a little update. 

Rawley life is as crazy, hectic, hair-on-fire, hot mess express normal as usual. 

In a nutshell: 

Ethan had two admissions so far this year-doing awesome now. Asthma under control.   Endocrine has decided his little testes have not dropped enough and stayed down-so off to urology surgeon Dr Murphy in October for probable surgery.  

Parker finished his sophomore year (barely) just turned 16 and just got his driver's permit. He has decided not to play football this year, but focus on his grades and choir and is working towards raising money for a choir trip to Austria next spring. Starts his Junior year in about a month. 

Hailey graduated from Staley with the Gold Medallion degree-the highest honor in the NKCH District.  She is off to University of Arkansas in 30 days to major in Biology with plans to attend Medical School and become a Pediatrician that works with special needs kiddos like the bald kid. She is also enrolling in the Air Force ROTC program through UofA. 

Brian is still working days with the KCPD at the Shoal Creek Division Station and it is his 21st year with the department.  He is also working with another company doing fraud investigations and claims cases-which is setting him up for his retirement job. 

I am working full time again at NKCH and love being back with all my awesome co-workers!  I am 3 years cancer free and counting. 

We took a fabulous family vacation in June to Florida. Spent a week on Universal property and had an absolute blast at the parks! I rode more rides than I did the last time we went because I figured it was 'now or never' and I'm living and looking forward with no regrets and no missed experiences. Even if that experience was only Dr Doom's Fear Fall!

 And I loved it!! 

Parker even took on some rides he wouldn't do last trip!

Spent a few days in the Tampa/Clearwater area-gorgeous beach BTW and had the best seafood ever at Frenchy's! 

Most of all it was a whole lot of family time spent laughing, and fighting and just being crazy weird together before Hailey is off to college. 

Awesome memories were made!

Perfect timing because the Surgeon just came out and said Hailey Jayne did fantastic-tonsils were huge and full of holes and puss pockets and it was a good call getting them out before school. 

Now to get my loopy girl home and settled before I head to the cancer center for a shot. 

I promise, pinky swear, swear on my children's lives I will update this blog more often.  

As a matter of fact, I will be updating again later today or tomorrow, so stay tuned!  

 

Summer Vacay 2015

I wish I had better service to blog, and when I get sat down somewhere with some time and the ability to load all my photos I will bore you with them all. 

Long, long, long story short: we made it to Florida via car with few issues. I mean, after all, would it really be our life if there weren't some sort of drama???

I'm just happy the tray attached to the Pilot hitch holding all our luggage and E's new $10K wheelchair didn't fly off on the highway somewhere. 

We've run around a lot since we got got here and today me and the boys are enjoying Islands of Adventure. I'm blogging in the child swap room of the Jurassic Park River Adventure ride with the bald kid while Brian and P get all wet first. 

Hailey came down with strep-I'm sure all her "I'm all graduated, 18yrs old, outta high school, almost to college, working enough to have a little spending cash, staying up late" days have just caught up to her and she's worn out. 

Needless to say, she will join us tomorrow as we probably hit Magic Kingdom. All I can say is that I cherish having these days with my family, and appreciate all my hubby's hard work to get us here. 

Now it's my turn to get wet!  

This little bald boy of ours.....

It's been a whirlwind of weeks around the Rawley household. Days run into nights into weekends into weeks and then this happened:

A note came home from school that Ethan was standing with very little assistance from his OT. 

What!?!?!  

Gotta see it to believe it, and this picture came home the next day. 

I cried. And cried. And cried. 

All happy tears. 

10 years 11months we waited for this day. 

We listened and nodded and smiled as educated people told us this day would never happen. 

And now I'm nodding and smiling watching this boy prove them wrong. 

He totally takes after me in the stubborn department. 

And here he is being silly with Hailey at home.  

First he wouldn't put his feet down and support his weight. 

See how his feet are crossed and he's letting Hailey do all the work?

Then he decided to lock his knees and stand up. With little support from Hailey. 

Then I think we all cheered and he started laughing and buckled those long legs into a heap on the floor.  

Fast forward another couple weeks and this note came home from school on Thursday. 

4 days before his 11th Birthday. 

And I know you probably can't read this, but it basically says Ethan communicated pain and its source to his teachers today at school. 

He answered a series of Yes and No questions on a program on the iPad and he was able to tell them his head hurt from his glasses and that he wanted them off. 

10 years, 11 months, 26 days. 

And the bald kid told them what was bothering him. 

Again, 10 years, 11 months and 26 days of us using our best guestimates at figuring out the bald kid came down to his eyes/head hurt from his glasses and he wanted them off. 

Guess it's time to take the bald kid to the eye doctor for some new glasses. 

I suppose this time we will let him pick out his own. 

Back in the routine!

Ethan was discharged Wednesday afternoon after a good night on Tuesday. He was able to stay off his oxygen most of the night, dipping down to 90 occasionally at which point his nurse would go in and reposition him. Once he was awake, he was hanging solidly at 95 with no oxygen!  

The team came in and decided to cut him loose!  

So we bundled him up and masked him up so he wouldn't get any germies and left as soon as we could! 

He went back to school on Friday and did great, other than a nap on the bus on the way home.  Being back at school wore him out!

He's still doing well at home, and we have a follow up with his pediatrician on Monday. 

Thanks for all your prayers and good thoughts our way. This was a long admission for him at 2 weeks and a day, and an exhausting one.  

Hopefully it's our last one this year! 

Holding steady

Ethan has been in a slowly improving, steady pattern for a couple of days now. Which we are fine with and the team is fine with. Our first year doc, Dr Jeff Lowe, is so awesome and totally gets Ethan and appreciates how fast he can change from ok to crapola, that he has no desire to push him. 

He has come down quite a bit off his oxygen- down as low as 0.12 liters. But he tends to work a little harder breathing so he's been very comfortable at 1/2 liter. 

He's tolerating full feeds, even with some additional water added. We are just spacing them an extra hour apart to make sure we don't overload him. 

He's slowed down from the other end a bit too-but did give the nurses two big surprises the other morning. So big they had to change his entire bed and bathe him each time. We don't call him stinky for nothing. The antibiotic is officially finished-you know-for the pneumonia he doesn't have. So that should help with the stooling. And we are keeping him on the twice daily lactobacillus for a while. 

He got his immunoglobulin infusion on Friday. Which meant vascular access came up with the med and supplies and I primed the pump and prepared it all, but they actually stuck him. Oh well, protocol is protocol I suppose. I'm just glad he got it! 

The IPPB treatments are really helping clear all the fluid out of his lungs and he sounds better and better each day. 

I attended the Asthma class on Friday, and learned a whole lot about the meds he's on and how they work and how long it takes them to work etc. We will have to work harder at keeping his asthma better controlled when we go home. Not that it was out of control, but we kind of lived in the Yellow Zone all the time and I'm gonna work towards keeping him in the Green Zone. My fellow asthma families will get it. It sucks. Especially with a kid that can't tell you he's sucking air. We have all got to be a little more observant with him. So I will be crazy for the next few months.   And they have told us that with his asthma under control and even if he gets no more viral illnesses, this is probably going to take a good month to get him over. 

With that said, we could very well be going home with some oxygen for nighttime and a bipap machine to do our own treatments at home. If that is the case, discharge won't be until Monday or Tuesday. Ahem. At least he will be better!

I'm working overnight tonight and Brian has to work at 5am so the staff is letting Big sissy Hailey spend the night with the bald kid. He's been a little fussy today because he's lonely when someone isn't there to entertain him so I'm very grateful they are letting her stay. 

He was so happy to see her-she hadn't been down all week with school, volleyball and work. 

He was all smiles when she hopped in bed with him:

And then she tried to do some homework, and mr. 'It's all about me' decided the best way to divert her attention back to him was to pull his MicKey button out (feeding tube)

This is him, oh so happy with himself, waiting on the resident to put a new button in. Hailey can do it-but they won't let her. 

Then he decided to poop all over his bed. 

I will spare you that picture that Hailey sent me ;)

It seems now they are hunkered down for the night-Hailey with The Office and Ethan with his light up turtle. 

Gotta get back to work-will update tomorrow evening. 

Thanks for all the good thoughts and prayers. 

And thanks to the Mertz Family for the dinner!  Much appreciated, and delicious!  

Keeping everyone on their toes...

Ethan is pulling his typical 'I don't follow any textbook' routine. 

He got to the floor yesterday afternoon and did so well!  He got a couple of feeds, stayed at 94-96 on 1/2 liter of oxygen, and slept soundly. Then, his witching hour, 7pm, was upon us and he dropped his sats to low 80's and had to be bumped up to 4 1/2 liters to even keep him at 92. His feet got puffy and his skin got mottled again. He also tried to throw up his last feed. Fortunately the resident that came up had some common sense and was wiling to give him an additional dose of Lasix and let us hold his feed off for another couple hours. 

He lost his IV the other day, so we needed to try and get some nutrition in him, but he's walking such a fine line between that and being fluid overloaded.  And some of his electrolytes were getting a little out of whack, so he really needed some formula.  As a compromise to sticking him, we added some free water to his formula feed and just slowed the rate way down. He did ok overnight, but they never were able to wean his oxygen level down much so he's at 3 liters. 

They got a chest X-ray this morning, which is still pretty full of interstitial edema, some patchy infiltrates and a pleural effusion.  This is today's film:

And this is last week's film:

Not a great pic with the glare, but you can see how much more washed out today's film is. That and the flat angle on his left. (My X-ray peeps will understand that!). It leads you to believe he's holding  some fluid, as it should be really pointy like on the film below. 

So, the plan for today is to start the IPPB treatments back up-4 times a day. Try to wean his oxygen down as he can tolerate but not make his work of breathing any worse, so if we have to stay at 3 liters then we do. 

They also want us to go to the Asthma Class tomorrow, as this RSV can continue to cause him some longer term respiratory issues and they want us to be very familiar with his asthma action plan. 

Dr Mann is the attending on this week and weekend, and we think he's fabulous and trust his instincts with the bald kid. But it looks like we won't be going home before next week.  And even then, he may need some supplemental oxygen. 

Slow and steady. 

Slow. And. Steady.