Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Tuesday, May 22, 2012

The Eating Post

I remember reading a post much like this one when Joel was very little and on continuous j-feeds.  It gave me home and renewed my energy.  Battling a child's oral aversion is a GIANT battle.  And it's not something that happens over night.  Here are a few things that helped us in our journey so far.  If you know of someone who is going through this too, please pass this on to them. 

COMMUNITY.  First & foremost.  You need a support system of other moms.  Find blogs that you can read up on.  Join the closed group Families for Community on facebook.  Do what you have to do to get connected.  Moms are great for bouncing ideas off of each other.  There will be times you want to cry out of pure frustration, and it will help to cry on a shoulder that TRULY understands what you're going through.  And when you celebrate victories, it's all the more exciting of a moment when you can share good news with someone who knows what the heck you're talking about!  The normal public doesn't always know what we see day in & day out.  Special-needs moms do.  So, go meet some.

GET A GOOD TEAM.  I know resources can be (very) limited depending on your area, but it's important for your docs, nurses, OT/PT/Speech and whomever you work with, to all be on the same page.  Our goals for Joel have always been BIG GOALS.  Big goals don't always fit into statistics...and they don't work for everyone.  I have learned to be a good advocate for my son by experience, it didn't come naturally.  HOWEVER, while learning to be a good advocate and meeting other moms, I learned that the term 'advocate' doesn't mean charging into offices and being that crabby mom no one wants to deal with.  Be firm in standing your ground, but understand that these people you see are doing what they've been taught to do.  We have had to let go of a few people who literally COULD NOT understand that Joel is not a number....but there were no arguments involved.  Keep that 'North Star' for your child at heart, and decisions like this won't have to be heated.  Also, when you find a good team, let them know how much you love them.

ROUTINE.  With as many kids as we have...if there weren't routines in place, I'd be mental.  We do things at certain times every day.  It's just how we work, and I think it's really helped Joel in his eating.  With him, and many other kids, oral aversion isn't just about physically learning to eat.  It is the psychological block that has been the main hurdle.  By creating schedules for him, he knows that at 7:15 we have breakfast together, and at 10:30, we have snack.  He knows that at those times during the day, we expect him to get up to his high chair and eat (or not eat...) We aren't springing something new at's this way every day, and consistency helps here.  Joel is allowed to watch his favorite tv shows while he's part of his routine, and incentive for him to stay in his high chair longer.  (FYI: I have heard positive & negative feedback from therapy about tv watching during mealtimes.  It works for us, so we do it.)

More routines:

-We brush our teeth as a family....together.  (ORAL STIM!)
-We do oral stim before meals...this includes a (very ridiculous) song while we all sit up to the table...the other kids get involved and do it too.  Seriously, our meals are crazy.
-When Joel was still in the 'exploration' stage, I would place his walker/exersaucer in the kitchen when I was cooking dinner.  I think it was good for him to attempt to associate smells with food and hunger...which I have been told is near impossible. (It's not impossible.)
-Be consistent.  There were months of effort to get Joel to swallow ONE measely bit of baby food, only for him to gag, throw it up, cry, and immediately want out of his chair.  I can't tell you how many times I wanted to just let him play instead of bringing him up to the table with us.  It took 10 minutes of getting him and his cords to the table when he probably wouldn't eat, and surely was not hungry.  There were lots of tears at the table from Joel AND his mother.  This time passed.  The effort paid off.  Even if your child does not eat at all, sitting your child up to the table with the family helps them understand society 'customs.'
-Family dinners.  Every night, together.  No matter what.
-Just say no.  Summer get-togethers, Winter holiday parties,....sound like lots of fun, but to Joel, it's a change in routine...and he eats nothing.  We limit the things we attend that interrupt meal times.  It ends up being more stressful in the end, and there will always be parties.
-Speaking of things that interrupt mealtimes, my errands....they don't interrupt mealtimes.  And if they have to, I pack snacks in the car and we eat while browsing the grocery store.
-I keep a ziplock with dry cereal, fruit snacks, or pretzels for Joel to munch on while we're out and about.  Always.  If he's hungry, I do not tell him, 'wait.'  He won't ask me for food a second time.

GET CREATIVE & DO YOUR HOMEWORK. We are always trying new things.  New snacks, new foods.  This can get spendy, but it doesn't have to be.  If you're still exploring: Let your kid try EVERYTHING.  Random stuff seems to be the best.  Joel liked pesto, hummus, sour cream, salsa, zucchini, pepper & onion relish....things my other kids hated.  These kids don't know any different, and really, the wilder the flavor, the easier it is for their mouths to recognize food inside of it.  If you're calorie boosting:  check labels on everything in the damn store.  We add butter, olive oil, peanut butter, cheese, heavy whipping cream, or pediasure to MOST of our meals in some way or another.  Dips are a great way to boost cals, and toddlers think it's fun.  Making food from scratch is the easiest way to alter it to fit his/her needs.  When I say creative, I even mean: buy crazy plates from the dollar store, shop at garage sales for silly cups and cookie cutters for sandwiches or slicing fruit.  We have a kazillion sippy cups at home, and I have LITERALLY had Joel say no to one cup...and he watches as I pour the liquid from the rejected cup to a new one...and then downs the whole thing.  They are toddlers after all. :)  Make things fun and exciting, even when you really just wanna shove food down their sweet little throats!

We live food and drink.  If your child is age appropriate or willing, get them to watch Sesame Street!  There are lots of clips of food, diet, and kids eating....yep, that's right....I'm using peer pressure to brainwash my child into thinking eating is 'cool.'  HAHA Whatever works!

DON'T STRESS.  When I'm watching over Joel's shoulder, secretly calorie counting, he stops eating immediately.  Kids feel our stress as much as we do.  Hard work pays off, yes, but at the end of the day, there's only so much we can do.  We have meals where we just try to get Joel to SMELL the food.  TOUCH the food.  LICK the food...etc.  And when meals like this come up, and I want to cry, instead, I try to praise him for saying YES to one of my requests..... "YAY JOEL!  YOU SMELLED THE FOOD!  MMMM!  SMELLS GOOD!"  Sounds dumb, but he's two.  Most of the food he likes has a lot of flavor, so the smelling of the food many times leads to licking the food, which ends up in TASTING food! 

I hope some of these things were helpful to you.  This will get better!

XO, Kari.

Monday, May 21, 2012

Goodbye, Golden Retriever

I'm sitting up to my computer, tears running by the bucket full, wads of kleenex, and a near-empty box of truffles.  HAHA.  What a sight to see.

We had planned on making a trip to Tacoma tomorrow morning.  Our cardiologist is moving out of state, and really, I think the plan was probably for us to say good bye.  We've reached the 'once-a-year' stage, and Joel won't have any lasting heart issues.  It's easier for everyone for us to pick someone closer.  We got a call first thing this morning to let us know that our insurance denied our visit.  So we're not going.

Now, when I make trips to Tacoma, I usually try to fit as many visits in as possible.  I see friends, family, hospital staff that we've grown close to.  This trip included a visit with our favorite intensivist, who happens to be moving to Grand Rapids, MI.  He invested his heart into the care and recovery of my son through our hospital stay.  He sat me down during the wee hours of the morning and told me to prepare for my son passing that day.  He watched, as we waited, and watched him slowly recover.  I saw his enthusiasm in our victories.  Still to this day, he keeps track of Joel's progress.  It means the world to us.

I didn't think much of the cancelled heart first.  Until I realized who we'd be missing.  And now, here I am...a mess, seeing a chapter in our life closing.  We have no more obligations in Washington. 

Monday, May 14, 2012

Because I have to say it before I explode.

We have these surgeries.  We've (thankfully) combined them into one sedation time for this purpose: More warm weather time to wean Joel off his feeding tube by next Fall.  Also, because we are DONE (did you hear me???  I said DONE!) with surgeries...and this may literally be the last trip to the OR.  The surgery has been scheduled for May 24th, which is next Thursday.  Ten days and counting. 

I've said it from the beginning that I want Joel to be done with his feeding tube by Fall.  I think he's mentally ready.  We're in a place as a family to support him with the resources and "tricks" that we've learned. 

I am scared that we won't make our goal.
I am worried that we won't make it, and I'll be stuck doing feeding tube stuff through another winter.
I feel guilt for the line above this one.
I wonder if I'm pushing him too hard.
I feel more guilt...because this is something God knows is weighing on my heart....and I should have more faith that he can put this together.  I should have big faith.

We've even landed the surgeries in May, like I'd hoped, so we can have a straight 3-4 months of solid planning, and eating, and scheduled mealtimes.  Everything is lined up just how I'd hoped up until now.  And I'm scared to death.  I'm so scared.  There is no fearless here.

Sunday, May 6, 2012

Up on the Hill

We had appointments last week in Portland.  Two pre-ops, and a follow up for Joel's eye surgery.  On the first morning up at OHSU, I managed to lock my keys in my car, and then after being rerouted to another building by the staff, forgot where I was parked.....long story short, I had to meander through 3 parking garages with a tired toddler and a heavy diaper bag before the security guard could get me back into my car.  As I finally buckled a sleeping Joel into his car seat, I sat down and cried.  I called Adam and told him how much I hated this campus.  And I meant every word.

We met up with some friends of mine, had dinner, talked, drank a little wine, and our kids played together AMAZINGLY. Slept well, and woke up the next morning with a new start.  Drove back up the hill to the same campus that had defeated me the day before, and felt the same heartache.

Don't get me wrong, I know I've been spoiled with Mary Bridge.  I love it there.  They were my family away from home, and I mean that.  Even the valet guy got one of our Christmas cards.  They KNEW us, and it felt great to be apart of a 'community' within the hospital.  We fit in there.

But that wasn't it.  It wasn't until I drove back down the hill and remembered this, that I knew my hatred was much deeper rooted.

I have memories here.  An old boyfriend went to school here.  Not just any boyfriend...THE boyfriend.  The one I swore as a teenager I was going to marry.  The one my parents feared and hated.  The one who was pivotal in my destructive years.  He was the spin in my tornado.  I can remember YEARS of thinking of this very hill as a desired attraction...'If only I could get to that hill, we could make it work....'  He occupied six years inside of my heart.

And I'm not going to get into details that I don't want to relive, because to be honest, if you knew about my past, you'd probably crap your pants.  It's shocking.  So, I'll leave it at: I was heartbroken.  By a boy who is now a dentist.  And it led to a landslide of retaliation and addiction.

Obviously I'm not heartbroken today.  I've met and married the man God intended for me to be with.  We have kids and a life that is incredibly hard, and incredibly rewarding,... but Adam and I have had to work IMMENSELY hard to keep things together at times, and I can almost always derive my unhealthy behaviors in our tough times back to when I learned them first.  From the boy on the hill.  People learn things when they're under emotional stress.  I learned bad habits from that relationship, and without guilting myself to death (which I do,) there's a mess to clean up years later.  I made a mess in the love-part of my brain, and time hasn't really healed that....God had to.

It's no surprise that looking back stirs up sadness.  It always does with me.  But I really want for OHSU to not remind me of the actions I regret.  I know God didn't intend for my husband to have to deal with my baggage from past relationships, but as it is, he does.  Thankfully he's patient enough to stand by my side while I work through my 'exfoliating.'

You know, I'm gonna have to go back up there in a few weeks for Joel's next surgeries.  I'm going to bite the bullet, and NOT cry this time, and be that strong mom that I was in Tacoma.  If you're reading this, and you pray, be thinking of us.  Joel will be getting his stoma closure and hernia fixed.  I'll be looking out of a window, over a beautiful city.