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.