Thursday, 15 August 2013

Things Adults Should Learn From Kids

I am so far past tired that I can't sleep, how much does that suck?  It also doesn't help that it is stinkin' hot, B's unsettled and crying out and my darling husband is a-snorin' away next to me (shh, don't tell him I said that!).  I managed to get a wee sunburn at the Splash Park today on the back of my neck to just round things off in the wanna-sleep-so-bad-I-could-cry category of this evening.  Oh, AND we're losing our Aide Heidi to bigger and better things (yay for her, boo for us), and apparently the need to hire someone new (again) is a stressing me out a wee bit.

So what does one do when one can't sleep (aside from singing Fire and Rain by James Taylor over and over in one's head)?  Write a post of course!

Mr.B's been up to some new tricks in the past few days and I just have to share (brag about) them with you!  He has discovered (quite cleverly) that he is now able to pull up on, well, everything!  He just vaulted himself into toddler-hood when I wasn't looking!  His newest nickname (to add to the growing collection) is Mr.Trashy-pants as he pulls up onto whatever and proceeds to clear it off in one or two fail swoops!

Lemme just help you with your recycling mess Momma!

Oooh, new toys!

I'm not doing anything...

Forget toys, I've got a broken toy bucket instead!

Hi Momma!

I love that this kid has no patience for some things, when he wants an area clear or no longer wants a toy, it physically has to be out of his sight or he'll just keep persevering until it is gonzo (yes, I'm tired I said gonzo).  Of course you might see the issues that we are now encountering because of, my entire stack of paper recycling, the boys toys (that they thought were safe on the couch, etc.  Nothing is safe!

Of course what I can also say is that it thrills me to no end, he's being a 'typical' toddler, attitude at times and all!

Another of Mr.B's latest thing is that he completely loses it when I put him down to change his bum, loses it.  Screaming, crying, breath holding (turning blue) and back arching...hmmm, this one might not be as 'cute'.  The crazy thing though?  If I distract him with something, usually a syringe, he's FINE.  I'll be happy when this little 'stage' passes!  **Please note whenever I talk about syringes in my posts these are for putting meds/water into his g-tube, there are no needles involved, ever.  I swear I'm generally a bit more of an attentive Mother then that!**

Just checking stuff out...

Hey, a new drum!
His new 'funny' thing he likes to do?  Smack and scratch Mommy's (that's me) face when she's holding him, again, this one can end soon.  I NEVER thought that I'd be setting boundaries for this child!  It's kinda cool (in a getting-my-face-slapped/scratched kind of way).  Each time he hits he gets told 'no' firmly and if he hits again (which he always does of course, he's a toddler) he gets put down.  Of course the giggles (his) are immediately replaced by gut wrenching tears (again, his).  I never thought I would ever have a time or day when I made him cry, it's horrible but also just so darn 'normal' at the same time.  Of course he gets picked up again after a short while (while everyone around feels so sad for him) and then we start over again.

It is pretty darn cool to just have some 'normal' (?) times in our lives!

On the 'medical' side of things, his new g-tube is working well but it very sore.  I don't know why but he's making a ton of granulation tissue again like he did the first time he got a tube put in.  I'm not sure why he's got the increased friction against his skin again but it is painful and bleeding a bit which makes tending to it that much harder.  I've got the great job of silver nitrating it tomorrow (yay, ugh) but I've put it off because I've been bathing him everyday to keep it clean(er) and he can't bathe for 24 hrs after a treatment.  There's not too much worse then burning your kid's exposed granulation tissue with silver nitrate, not too much.

However, the tube itself does vent beautifully and we are getting used to having a 'tube' again instead of a skin-level device (removable tube that leaves a 'button' in his skin).  We are certainly having to be vigilant with the valves (closures) on the tube however because we have had several leaks now (where you lose a whole feed because the top opens up and drains).  It looks like we'll be using some of that lovely 'pink' tape to keep him closed again as well as trying to devise a 'belt' of sorts to keep it close to him when he's not feeding.

I did get a message from his Pediatrician that the OR results from the GI are that the conclusion is that the balloon of his last device was most likely blocking off the stomach when the stomach was empty.  No big surprise for us there, I can't tell you how many times I dislodged it from his pylorus (valve at the bottom of the stomach).  Still no other news to date or no call in regards to the edema in the stomach lining.

The other lovely and exciting thing Mr.B is doing is cutting SIX teeth right now, all at once.  S-I-X.  Ouch.  Can you imagine the drool??

Working those legs!
We are off to our therapy team appointments tomorrow with his Physical Therapist, Speech Therapist and Dietician (his OT has gone on Mat leave and hasn't been replaced yet) so we'll get to see what his weight is looking at now.  I'm am really hoping that he's at least getting back to where he was in the beginning of June.  We also get to show off and show his PT just how much progress he's now making in terms of movement and such.  I can't wait to show his therapy team the videos of him on the beach!

ooooh, funny faces
In all other aspects B is doing well, he's back to his usual antics of making all of us laugh uproariously and keeping me on my feet (and shutting baby gates)!

I just wanted to share with you today too how much I love the minds and emotions of children (not just my own for a change).  We, as adults, should stop and just sometimes realize that children might just deal with life better then us in some regards.  

Why frown when you can smile and light up the world around you?
We were at a local Splash Park today with a group of good friends and their kids and I had B on a blanket to change him.  He'd soaked himself with drool (did I mention teething?) so I had him in only a diaper and the kids had gathered around (they all adore him).  I LOVE the questions that kids ask about B, they are so direct!  I love that they ask about his feeding tube and his scars.  I love that they don't hesitate to ask me about anything that they see as 'different' and wait patiently while I try to explain it.  Adults need to take a page from kids sometimes when it comes to spotting differences.  Yes, sometimes kids can be embarrassing when the ask (generally LOUD) questions in public about someone 'different' but it is their honesty and openness that I love.  We lose that as adults because we try often for discretion which generally comes across as inadvertent staring.  I urge all of you to be open with your kids about other children (and all ages) with Disabilities. 

Kids are open, honest and genuinely interested in how the world works.  NOW is the time to teach them that we're all not the same, NOW is the time to teach them tolerance of others and NOW is the time to instill empathy and kindness towards others.  I honestly don't think that there is an age too young, as soon as they start asking those hard questions I believe that as their parents we need to start answering them. Honestly, or at least as honestly as we can.  Instead of hushing our kids to avoid those 'embarrassing' questions, embrace them.  From my experience, someone with differences appreciates being asked about them (kindly) as opposed to being stared at or (sometimes worse) ignored.  Encourage them to ask questions!  Take the time to point out our differences and point out our diversities, the world might just be a kinder place with their generation! 

My friends have some pretty awesome kids and I'd like to think that they are going to be even a little bit awesomer (it's a word at 2am) because of knowing and understanding an amazing kid like our Mr.B.  (Getting off soap box now to let you all raise your own kidlets!)

From Our (Sleep Deprived) Home To Yours...

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