We believe in miracles.

"Call to me and I will answer you.  I will show you great and mighty things."-Jer. 33:3

I'm reporting to you tonight, from my bed.  Where I sit with a laptop and a pepsi,...and a belly full of this:

Yeah, I skipped Zumba tonight...I had more important things to do.  Like CELEBRATE. 

So, Joel had roto virus a couple of weeks ago.  We thought it was the flu....but it just didn't end.  The poor kid lost a pound, which in his case, is really not good.  He's 2 1/2 and he barely tops 25 pounds.  Our pediatrician asked that we come in, and while we were there, I told him I noticed that Joel's testicles were looking as they did pre-surgery four months ago.  So he checked them.  Said it looked like a hernia.  AGAIN.  I held the tears back until I got to my dad's work down the street.  When we were in the hospital last, I told Joel we were done with surgeries.  That it was his last.  I wasn't about to break my promise to him, even though it wasn't my promise to make in the first place.  No more surgeries.  No more hospital stays, and hospital beds, and strangers.  No more OHSU, cause we hate it there anyway.

Joel's sickness finally left this Monday.  As in 14 days of flu-like symptoms.  ACK.  You don't even wanna see the laundry piles, and the things I've neglected.  We had an ultrasound yesterday at Providence.....on his balls.  Wanna guess how he liked having his balls mutilated by that ultrasound tech?  He hated it.  And her.  So I took that little precious to Starbucks when we were done.

The ultrasound tech mentioned that she saw a tear in his tissue; took pictures of it to send off to the radiologist.  We discussed theories as to why his right testicle would be so swollen and painful.  His shunt drains near the area of the last hernia, and it's possible that the fluid passed through the tear. 

    {Side note}: The shunt fluid theory is a little disappointing.  Even though Joel's shunt is to stay in his brain for life, our hope is that he doesn't need the shunt.  His hydrocephalus was obstructive, caused by a clot from his brain bleeds.  He went through a blood thinner treatment that 'possibly' could have cleared up the clotting throughout his body....there's no telling if there is still an obstruction or not.  Shunts malfunction.  Quit working.  There are lots of problems that can happen with shunts....which lead to surgeries to replace them.  Still following?  We said no more surgeries.  I need hydrocephalus to miraculously clear up, even though that shunt is staying there for good.

So, we left Providence yesterday, not sure of what to hope for.  A miracle? I don't know.  I just know that I promised my little Ironman that we weren't going back to the hill. 

We got the call this morning.  The ultrasound showed no abnormalities.  No surgery.  Nothing.  What about the tear?  What the heck?!  I honestly don't know what she saw yesterday.  I don't care.  I just know that as of tonight, we may not have to have any. more. surgeries. 

I was able to keep my promise tonight.


Connor and I baked a cake, and while dinner was chaotic as usual, dessert was not.  Adam and I sat on the couch, shared a piece of cake, and watched the kids laugh, and joke, and eat theirs.  I couldn't help but just sit back and watch the peace over our family.  Joel had no idea why we were celebrating, but the rest of us did.  Is this the end of surgeries and procedures?  Not sure....but it sure felt like it tonight....and I'm a blubbering mess.  I'm so thankful.....I'm so thankful. 

Lord, Humble me.

So often I am reluctant to post about myself.  I started this blog as means update our family about my sick son, and he's better now.....but I still like to write.  If you want to stop following me because things get too personal, or not up your alley, I understand.

I'd like to talk about being humbled.

This has been on my heart for over a year now.  And there are times when I want to take back that thought.  That prayer, where I asked God to humble me.  It was April.  Joel had just gotten his trach out and things were finally looking up.  We were living in a big house.  It wasn't ours, we were renting it....but suddenly, it seemed too big.  Too much.  Not us.  Our in home nursing was coming to a close, and something clicked inside of me.  I just wanted to get rid of the crap.  All of it.  My husband's job wasn't what we came to Washington for, and we were far away from our family.  We dreamed of living smaller.  Downsizing.  And pursuing our dreams, whatever they were. 

I knew that was going to take some getting used to....I'm not exactly one for budgets, or roughing it.  Adam and I sat down and prayed together (which was uncomfortable for us at the time...but we did it anyway.)  We asked to be humbled.  The thought of downsizing in a matter of just a few days became engulfing.  It's all I could think about.  I went through closets full of blankets, closets full of clothes, garages full of junk....it was just STUPID.  Why did we need all of this stuff?  I don't know what hit me.....when Joel got better, and we were able to breathe again, I looked back at everything that used to be important, and it just WASN'T.  It had to go.

We were ready.  And we decided that we would hope for Medford.  If God was going to provide Adam an opportunity to go back to school, or take another job, we would be ready for it.  Where was He going to lead us?  We were stirring with excitement.

And two days later, my husband is let-go from his job.

Seeing as I'm not so logical, and my husband is, it took some convincing to show him that this was from the Lord.  He doesn't always work in ways that are logical.  Sure, we'd like to have a job in place before a move, but we didn't.  And my parents were happy to take us in....in Medford, Oregon.

Living with my parents at age 28?  Not what I meant when I said 'Lord, humble me.'  Did it work?  Yes.  We were able to fit into two bedrooms of my parents' home.  SHARE the kitchen.  Share cleaning duties.  Get rid of 2,000 sq. feet of furniture.  (OUCH.)  Live on next-to-no money.  Give up salon appointments and shopping trips.

We aren't living with them anymore, and a lot has happened since then...but this has been an extremely humbling experience for my family; myself in particular.  It's comfortable for me to follow God in the comfort of my squishy, well decorated home in a nice neighborhood.  It is.  But I'm tired of it.  I want to follow him in ruins.  In storms.  In good times and bad.....and I don't want that, "I have to have a new suburban and a fatty house and new boots and MAC makeup" mentality anymore.  I haven't completely let it go, no...I struggle with it.  But I don't want those things standing in the way of my pursuit for Jesus.  I want to follow him freely. And I really feel like I'm on the path to do that.  Letting go of idols is a tough pill to swallow. 

This needed to happen so we can be who He created us to be.  In Him.

What are your idols?  What do you struggle with?

Recipes from my arsenal. (Tubie-kid meal stuff)

When we started feeding Joel by mouth, we were told to experiment.....which to me, meant shop.  Shop I did.  I bought everything in the dang grocery store, and it added up quick.  Everytime I went in for one item, I left with $40-$60 less in my bank account.....which quickly became $200/month in experimental foods that Joel really didn't like anyway. 

This is what worked better for us....we used basic foods that we already had, and boosted them in calories.  Sure, we still go for the occasional $5 cupcake, but for the most part, I don't have the budget for half most of the meals on pinterest.

Here are a few examples of some of Joel's meals that we make for him:

Breakfast:  Scrambled eggs- 1T. butter, melted in the pan. 
                                              Beat 1 egg + 1 yolk. 
                                              Add 1.5T of heavy whipping cream. 
                                              Add 1/2 of a sausage patty, finely chopped. 
                                              Season. 
                                              Top with shredded cheese.

Regular calorie count of 1.5 scrambled eggs: 120 cals (w/o butter)
Joel's scrambled eggs: 420 calories

Is Joel getting 420 calories for breakfast?  No. Not usually.....typically he'll eat half of what I put in front of him.  However....half of 420 is bigger than half of 120.  (See how smart I am??? ;)

Another easy way to boost breakfasts: buy high calorie bread.  Joel loves Costco's Innkeeper's bread.  Normal loaves of bread are typically 80 calories/slice....Innkeeper's bread is 160 cals/slice.  How many calories are in the bread in your kitchen?  Find out.  If Joel has toast for breakfast, we can easily boost it to a 300 calorie piece of toast by adding a tablespoon of butter, and a smear of peanut butter.

Our goal for Joel is 200 calories for meals, and 100 calories for snacks. Do you have goals?  If not, make some.

Lunch:  Mac-n-cheese:  Add more butter, use cream instead of 2%.  Or you can use olive oil and cheddar cheese...easily 400-500 calories for a 1cup serving.  Mac is an easy way to introduce veggies too....sneak some peas in and see what your child does? (Joel throws his to the dog. HAHA)

Dinner:  We eat a lot of pasta because I love leftovers.  Here's one of my favs, and Joel likes it.
             
              Whole wheat penne
              garlic
              olive oil
              onion
              sun dried tomatoes
              olives
              LOTS OF PESTO
              seasonings
              pine nuts
              top with parm
             (sometimes I add a little butter to Joel's.)

Honestly, I don't know the calorie count on this, but I know it's high.  Olive oil is 120cals/T, pesto is high too, and nuts are generally high in fat....parm too.

We use dinner as a way to introduce veggies.

Snacks:  Peanut butter on apples. Peanut butter on cheez-its, nutella with graham crackers... Our snacks are usually fruit and crackers and dip....My dips are not usually nutritious.  They're good though, and I totally use them to bribe Joel into eating something he may not like.  Joel isn't a big chocolate fan....but if I smear Nutella on a graham cracker (LOVES grahams,) then he'll at least try it to get to the cracker.  With the amount of dairy Joel gets, fiber is a MUST in his diet....so we try to get him as much fruit/veg in his snacks as we can. Did you see the pinterest pin on making your own popscicles?  You can sneak a TON of stuff into popscicles.

Here is one of Joel's my favorite dips:    Mix homemade whipped cream (heavy whipping cream, sugar, vanilla) with berry flavored cream cheese.  Serve with fruit.  Heavy whipping cream (depends on the brand) can be 60cals/T.  100 calorie snack? Goal met.  {Side note:  This fruit dip will win you major points at any baby shower/MOPS meeting.}

And one last pointer:  Drink your calories!


Next post:  Exercise tips for mommies.  HAHAHA

Fall.

Hooray for Fall!  As much of a gung-ho gardener I am in the Spring, by late August, I yearn for cool mornings and evenings.... because I just. don't. want. to water those plants anymore.  In fact, many of them just turn brown from neglect by the middle of September. 

I stopped working for Harry & David, (my favorite store,) in May.  And it near broke my heart.  I loved working there, but we literally had a signs too big to ignore....my place was at home.  My job is the kids.  And Joel.  I needed to be there to feed him....(a task much bigger than it sounds.)  We worked on feeding therapy all day, everyday.  And worked on building those feeding habits into our everyday lives.  I'm going to be completely honest..... it was exhausting.  I feel like I run a one-man-show of a restaurant sometimes. 

But it worked.  Joel gained A POUND over the Summer.  His 'skills', moving food from side-to-side in his mouth, and getting food from his mouth to a swallow, improved dramatically.  Another giant factor in his summer's weight gain was drinking his calories.  Any dieting adult knows this is a big no-no, but for him, it's crucial.  I'm so glad he finally started loving pediasure. 

The result from this weight gain:  No more bolus feeds.  This last week, Joel ate his daily allotment of calories on his own FOR THE FIRST TIME IN HIS LIFE.  We couldn't be prouder of him.  Writing 'we couldn't be prouder' doesn't even seem to do it justice.  This is major.  Our previous feeding person told us it couldn't be done.....only 'somewhat' set goals for us for September to appease us.  If you know your child is ready to wean off something, stick to your guns.  It's only because of my instinct and persistence (and obviously Joel's hard work) that got us where we are.  They weren't thrilled about taking steps to his recovery on our timeline.  And I'm not trying to pat myself on the back here....because even if you don't have a child with feeding issues, if you have a 2 year old child, do you know how to feed him?  Do you know what he likes, dislikes, is capable of?  Of course you do.  Because you're his mother.  That's in our DNA to just KNOW this stuff.....and somewhere in the land of hospitals and feeding clinics, that knowledge gets lost, or forgotten, and insecurities set in.  Don't be that crazy mom that clinics hate.....I'm not saying to be aggressive....but mommies know how to feed their babies.  You know how to feed your babies, and I did too.

Ok, enough of my soapbox. 

So, the plan is for Joel to keep his feeding tube in until Spring.  Cold and flu season is rapidly approaching....(actually I think it's already here.)  When Joel gets a cold, he immediately gets dehydrated, and goes into his 'safe mode', refusing to eat.  It is our 'safe mode' to have access to his tummy to get him fluids/cals if need be.  Hoping it doesn't come to that, we're ready.  I can't wait for Spring. :) 

My Freckle-Faced Boy

Connor started second grade a couple of weeks ago.  When August hit, I could have drop-kicked this kid into school.  The house was feeling too small, too hot, and him & his friends were needing some space from each other.  I was at the end of my fuse when we recieved a letter from his teacher...welcoming him & the other students to drop-in for a visit before school started.  And that's when I shed a few mama tears. :)

This little guy is on cloud nine!  He LOVES his teacher.  He LOVES riding the bus with the new friends he's made.  He gets up early for school without an alarm clock to wake him up.  He's enthused to read after school so that he can go out and play.  This is a 180 from where we were last year.  It's incredible what a great teacher, new friends, and a little stability can do for a seven-year-old.  I'm so proud of you, Connor!  I love you!

SUMMER

Hi.  We're not dead.  We're busy.  Like WAY busy!  This summer has been awesome.  We are living in a new apartment that we moved into the past Spring, and we've literally been living at the pool almost everyday.  The kids love it, I love it, (nap times are a breeze!), and lucky for me, the weather's been cooperative too.

I don't have a lot to update about Joel other than that he's doing fabulous.  He's picking up new words at the speed of sound.  He's running.  RUNNING.  Everywhere.  He's fighting with his sister, like brothers do, getting into things, and trying to drown and electrocute himself daily. 

Adam's been using the computer for work, and work is picking up so much that it's hard for me to get time at the computer to blog.  Plus, I hate blogging on my tough days.  We're not losing.  We're battling.  And when every other blog post seems to be a high or a low....I really don't want my followers to think I'm bi-polar.  I'm not, I promise!  HAHA

As for Joel's eating, we're hanging in there.  He's not losing weight, infact I think he might be gaining, just real slow.....(and really, I don't think toddlers gain weight fast.  Just saying.)

I'm compiling a list of easy meal ideas for moms who need their kids to gain weight.  When I have a chance, I'll post them. 

I hope you are all having a great summer!

XO  Kari

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 him...it's this way every day, and consistency helps here.  Joel is allowed to watch his favorite tv shows while he eats...it'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.

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 appointment....at 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. 

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.

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.

Just a song that gets me through. 

Like Clockwork.

It's the funniest thing how God works in our family.  It is. 

So, on the way back from Tacoma, Adam and I took advantage of only having one kid in the backseat....and got a few heart-to-hearts with minor interruption.  I felt it in his tone, and in mine.  Something wasn't working.  We went over the topics.  His workload.  Mine.  The kids.  Joel.  His school.  Our stress.  Karate.  The housing situation.  This is what we do....go over things.  See what we can eliminate.  And, there was nothing.  Everything causing us stress had to stay, at least for now.  So we prayed for peace.  Just peace.  Because, to be honest, things haven't been to our liking for awhile.  And that's just part of life.  Things are tough when kids are little, and sleep is hard to find (SOOO HARD. *yawn*)

A couple of days later, Adam comes home from being on the road with his boss.  Who offered him an extra $1,500.00/month....so that I could stay home and take care of the kids.  He didn't just offer him money.  He sacrificed his paycheck so that Adam and I could survive without me working.  How many bosses do you know that are willing to give up their monthly paycheck? 

I am at a loss for words.  The kids need me home so badly that it punches me in the gut when I leave for work.  Their needs aren't being met with me gone.  Adam's on the phone all day working, or emailing.  Joel's getting fed, but not to the volume that he could be consuming.  And there's this looming cloud that just disappeared......Joel can now continue weaning his feeding tube during this Spring/Summer's surgeries. 

I'm seriously going to miss working 3-4 days a week.  I loved my job.  And I can't put into words how hard it was to tell my boss that the most unpopular position at the store was available....once again.  I felt like I was letting her down, but she was understanding, and loving,....just as she always is.  I'll still be working events from time to time, but my main priority is at home.  Like it should be.

Jamie's Heart Foundation Gala 2012

We made it to our 2nd Jamie's Heart Dinner on March 24th.  It was so great to see our friends again!!  We stayed with Lydia and Ralph and they watched (and spoiled) Mia when we went to the dinner.  Here are a couple of pics from the evening. I even worked up the courage to give the evening toast in front of 140 people! 

I know I've posted about Jamie's Heart Foundation before, and I'll post about it again.  I love this organization.  As tragic as Jamie's passing was for the Hannahs, they've turned their sorrows into an incredible blessing for other heart families.  They helped our family financially when we were in the ICU with Joel, and that allowed our family to focus on our son's healing instead of our bills.  I will forever work to help and support them extend this same help to other families.  We love you, Tim and Corina!

These are a few of my favorite people.

I miss them.  They are my sisters.

Hernia.

Can I just take a quick 30 seconds out of my life to scream something on paper?  Ok, thanks.

WHAT THE HELL???????????!!!!!!!!!!  HERNIA? SURGERY???? AHHHH!!!!!!!!!!!

Thank you.  Joel's surgery is TBA.  The original plan was to do the surgery locally, and I think I've changed my mind.  I think we need to be sticking with Children's hospitals, because they are designed for children. (Most obvious statement ever.)  I want anesthesia to be used to having complicated children like Joel.  Nurses who are used to advocates such as myself. And surgeons who are performing on little bodies, daily.  SO, our local appointment is tomorrow and I still haven't rescheduled it, but I'm getting there. 

I'm frustrated with this.  How can it be luck of the draw.....my child has terrible luck....but it's not luck.  To me, in my beliefs, this is from satan.  Just as his CHD, and all of the other crap that has been thrown in our path.  But that's not what is frustrating me; because that is satan's job....to do awful things.  I'm frustrated that God isn't doing anything to stop it.  God is good.  All the time.  I know that.  And I also know that he is allowing Joel to be in pain for a reason.  To go through this for a reason.  I just wish this wasn't His will.  For me to have to watch my son be wheeled back into another OR.  I don't want to learn anything from that.  I want to be ignorant parents, like every other parent on the block.  I don't want to be stuck in a multi-bed surg-floor room, with parents getting simple surgeries for their healthy children...while they tell me how 'the world has handed them the shitty stick...' because really, it's everything in me to not unload Joel's history....or tell them some of the stories of Joel's buddies....who didn't make it out of a hospital room.

I'm frustrated, and I'm sad.  I don't like seeing my son this way.  :(  I can't wait until this is all over, & I can remember it like a dream.

Daredevil

For Tiffany :)

Detours

It's crummy here.  The rain is doing what it does in Oregon during the Spring.  My kids are also doing what they do in Spring....they are cooped up indoors and driving me insane.  We're in the process of getting a new place to live, which is exciting and unnerving all at the same time.  I want to snap my fingers and be at our new house.  Away from our trashy neighbors, away from Phoenix, and out of this tiny apartment.  Is this new place going to be any better?  It looks better, it seems better....but I have a feeling this is just me.  I'm not happy with the way things are going.  I'm working.  Our kids aren't being consistently parented.  Adam's working from home, and the kids don't seem to be played with.  Attention hungry when I get home.  He's on the phone or computer all day long.  I don't feel like I'm putting in 100% at work, and how could I?  I work 3 days a week, and what I really want to be doing is making mugs out of pottery.  Making art and selling art.  Being crafty with my kids. 

I know that Joel's birthday was Monday, and I haven't posted about it, because there is so much to say, and I'm just not there yet.  It's a time-stamp.  I've felt off track for 2 years.  Job stuff went haywire, house stuff went haywire, homeschool stuff went out the window, and came back unexpectedly, we moved, got broke...got a sick kid.  What happened to what I wanted?  What we thought we were supposed to be doing?  I know those are completely rhetorical, but really....I guess I'm just tired and worn down.  I've been focusing on what God wants me to be learning from this experience, but frankly it sucks.  I don't want to be living in a f-ing apartment.  I want to have my own home again.  MINE.  One that I can paint, and plant gardens in.  One that we can mark the kids' heights on the door for years to come....  I want to be using my new kiln.  Getting clay under my fingernails.  I just feel like a waste of space.

Almost Two.

You're turning two in just a week, and I'm almost speechless when I realize it's been two years since the day you were born.  You entered with so much fury, so much fight.....and though you've overcame the majority of tough times, that fight is very much still present in your personality.  You're toddler, through and through.  Not quite up to speed on communication, you get frustrated when we don't let you do things that could potentially hurt you....like grabbing my curling iron when it's hot, or getting down a flight of stairs head-first...  You're talking some though, and now your favorite things to say are commands (go figure): In.  Out.  Down. On. Bathtub.  (Bathtub may not sound like a command, but trust me, it is!)  
You have tricks, too.  You can get on and off the couch by yourself.  You can blow bubbles out of your neck while you're in the bathtub....(wierd but impressive.)  You can whistle and snap.  You can open up bottles of pediasure, and stack legos together.  You've figured out how to browse through Netflix with the wii remote.  You can eat 65% of your food...WITH YOUR MOUTH!!
It's been two years that I've had to figure out how to be your mom.  I haven't gotten it down yet, so I hope you'll be patient with me.....out of four kids, you're probably the most like Connor.  Full speed ahead, witty and charming, and the strongest will I've ever seen.  For now, I've definitely got my hands full, but I know all of your personality traits will take you far in life....and I can't wait to help steer you in the right direction.  I love you, Joel.

Sweet Video Clip

Just found this on the Southern Oregon Sparrow Club's page....this is one of the news clips from back in September, when Joel was adopted as a Sparrow.....and my hair was long!  Why did I cut my hair again??  Enjoy <3

http://kdrv.com/page/223601

1 in 100 isn't so rare.

We're one of them.  This week, February 7-14th, is National CHD Awareness week.  CHD stands for Congenital Heart Defect, and it affects 1 out of every 100 children. 

This is a snippet of Joel's story.  Many of you are very familiar with it.  Some are not.

When I was pregnant with Joel, we went in for our routine ultrasound...at I think 21 weeks...I was so excited to find out the sex, and to double check all of his organs.  Adam and I had miscarried a baby before, and my anxiety level was high as we waited.  We were hoping for another girl to even the score, but when we found out he was a healthy 'him and not a her,' it didn't make a difference.  Healthy was good.  The ultrasound tech even said, "Nice strong heart" during the appointment.

When Joel was born, I was pretty medicated.  It was my third cesarean, and I (unknowingly) was allergic to morphine.  As we planned, we brought a favorite CD, Coltrane for Lovers...which you should purchase if you don't have it.... Dr. Mvundura delivered our precious little baby in just a few songs' time, Adam was light-headed from being in the room, and my mom got the opportunity to cut the umbilical cord!  I got a few peeks at him and was wheeled off to recovery.

More than an hour passed, and I still hadn't gotten to hold Joel.  I 'wiggled my toes'.  No change.  "He swallowed some fluids." "Just waiting for his sats to come up"....More hours, and no Joel.  Things weren't feeling right, and nurses were starting to dodge my questions.  By this time, it had been five hours....and the pediatrician came in to discuss with us.  Joel's oxygen saturations were supposed to be at 100%.  They were at 72% with supplemental oxygen.  This was no ambiotic fluid issue.  Tacoma General was called, and a transport team came to take our baby away.  We prayed over our baby and sent him with strangers, hopeful that they would find what was wrong with our baby.

After a quick chest echo it was obvious.  Joel had heart defects.  Four of them.  The first, the big one, transposition of the great vessels.  His aorta and pulmonary artery were switched.  His heart was getting oxygen.  His body was not.  The second and third: Arterial Septal Defect and Ventricular Septal Defect (a hole between chambers,) and the fourth: PDA.  Patent Ductus Arteriosus is that little vessel that closes when a child is born, once they need to breathe through their mouths.  Joel's stayed open, thankfully, which allowed his body to get 72% sats....we know another little transposition kid who's pda didn't stay open.  He was born with 30% sats.  (Luckily,) his parents had found out about his defect during the pregnancy, and cardiology was standing by.

Joel's heart surgery was performed when he was 5 days old; a surgery called the "Arterial Switch."  This surgery was 7 hours long.  Typical hospital stays for this sort of defect is 5-7 days in the hospital.  It was an open heart surgery.  The Arterial Switch surgery has a 95% success rate.

We were thankful that Joel was born into a hospital that performed routine oxygen saturation checks.  He wasn't born blue, he looked like any other baby.  There are many heart defects that can be missed during routine ultrasounds, but found during oxygen sat. tests.  If you are pregnant, or know someone who is, get or suggest getting a oxygen saturation test done while the baby is still in the hospital/birthing facility.  It can save lives!

In honor of Congenital Heart Defect Awareness Week, we would love to say thank you to everyone who works day-in and day-out to keep hearts healthy.  It's a tough job working in healthcare, and even tougher working with the young & sick.  We had such an amazing experience with the people of Tacoma General/Mary Bridge Children's Hospital.  Nurses, doctors, surgeons, intensivists, lab techs, ultrasound/radiology techs, pharmacy, social workers... the list is long, and the benefit to my family is great.  Thank you for all that you do!  We love you!

A Very Sparrow Christmas

I know it's the end of January and all, but I've been thinking about what to say about Christmas for the whole month....so it came late. 
Christmas was very different this year.  Usually it starts before Thanksgiving, with crafting, decorating, and baking up a storm...(near hybernating) indoors with my kiddos all day...(= bliss.)  This year it started early...like November 1st...because this year I was not home, I was working my tail off at Harry and David.  Trying my hardest not to screw up any orders, pointing the public to 'that perfect Christmas gift'.....and rushing around like a chicken with my head cut-off.  Needless to say, I was not in the Christmas spirit.  AT ALL.  I love my job.  I love what I do....but I do not necessarily love doing it over 40 hours a week...and not during my hybernation season. :)  But I did, and we made it through.

As the nation knows, (thanks to ABC & Extreme Home Makeover,) we are a Sparrow family.  I love everything that Sparrow Clubs stand for.  Joel and I were able to go to Hedrick Middle School in early December to say hello to the kids and give an update on Joel's recovery.  It was overwhelming to watch them run up to us, and call him by name.  They took pictures of him with their readily-available cell phones, and gave him high-fives.  I can't describe what it's like to have perfect strangers care about you.  I can't describe it.  It's not something that can fit into words.  We knew that Sparrow Clubs would be blessing our family for Christmas with a gift for each of our children, a project called 'Bless-A-Nest.'  We emailed them a few suggestions of things the kids might like, with no hopes of what actually ended up happening... A CAR LOAD OF GIFTS.  And checks.  And cash.  And giftcards.  There were far more items for each child than we put on a 'suggestion list.' When you hear the saying, "It's the thought that counts," this is one of those times where it means exponentially more than it sounds.  The kids didn't open just loads of toys on Christmas morning, they opened gifts that were specifically picked out for them...by complete strangers.  Someone bought a miniature backpack full of books for Joel.  An art set for Mia.  Perfect flannel pajamas for Logan. All of the kids were blessed beyond what we ever predicted.  My mom and I peeked at a few before Christmas (they were wrapped,) to make sure that there were no duplicates....and we cried and cried together; so touched at the gesture handed our way.  One gift in particular was my favorite....a little sippy cup, placed in a box, and marked "from cyrus"...in a child's writing. 

Of all things, a sippy cup was the one present that had me sobbing my eyes out the most.  Someone was thinking of us over the hectic holiday season.  Having a fragile child can feel so isolating, and while they may not have fully understood the things we've experienced, they wanted us to know that someone out there cares about us. 

If you have ever participated in Bless-A-Nest, or know someone that has, please give them a hug from me.  'Bless a nest' is an understatement.  Thank you from the bottom of our hearts.  The thought that counts, did... more than you'll ever know.

School's Out

We took Connor out of public school today.  It was a family decision, not a parents' decision, and for some reason, I feel like I need to state my case...so here it is. 

We're choosing to home school Connor....

#1:  Because he wants to be home schooled.

#2:  I don't like the talks kids are having at school.  Now, I know I can't shelter him from all of life's bad apples...and honestly, I don't want to.  But at what point is it appropriate for children to talk to each other about sex?  Age six?  I think not....and it's been a subject brought up more than twice, and Connor continues to question me about it (and other things), and we finally sat him down and had an age appropriate discussion...using words and scenarios that he can actually grasp.  This is shocking...and it's not just the 'let's talk about sex' discussion that is inappropriate.  It's the kids' mindsets altogether.  When it's not sex, it's something else.  Daily.  I think today's youth are being exposed to things they shouldn't. 

#3:  I think Connor needs a little debriefing from the last two years.  I think our entire family does.  We need to stick together, and I think he's feeling that as much as Adam and I are.  A move out of state, job promotion, job demotion, sick baby, separated family, in-home nursing, job change, job loss, move in with parents out of state, mom goes to work, dad works from home ....move from big house to small apartment...it's a lot for an adult to handle, and I don't think I've fully processed all of that yet.  In fact, I know I haven't.  So, why would I expect a six-year-old to?  He's needing to be home with us right now; I think that's OK.

#4:  This was the original plan.  Before Joel graced us with his presence, we planned to home school.  I was at home, enjoying my crafting-cooking-cleaning-diaperchanging-life, and Connor was excited to be home schooled.  Then Joel came, and we knew that our house was chaos.  Nurses, appointments, a fragile baby...Connor needed the opportunity to 'show off'.  Have something for him to bring home and say, 'Look what I did today without you, see how wonderful and grown-up I am...'  We had an incredible kindergarten teacher for him, and public school suited him well last year.  But during this last Christmas break, I felt that urge again...that gut feeling, telling me what I already knew.  I am the one who is to be teaching my son right now.  He felt that too. 

#5: We feel like this is the right thing for our family.

Thank you for all of your concerns, opinions (even negative ones), & private messages.  Know that I've taken them all to heart.  I hope that you will respect this decision, as it's a big one.  We've given this a lot of prayer and time to think this over, and we're prepared to do what it takes to make sure our son is getting the education he needs.  We have faith that this is something we will succeed at, and I hope that you can have faith in us too.