Life Starts Now.

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

Saturday, November 26, 2011

Being Thankful

is hard some days.  Our finances are upside down, I'm working while my husband is unhappily home with the kids, we're living in a 2 bedroom apartment when we're used to a house 4x's its size....

But the moment I sit and think about where we are REALLY, without the temporary frustrations of the day, I am so thankful.  This is a season of regrouping.  Re-honing in on who we are as a family, refocusing on the three children that were put on the back-burner for the last 20 months, and the marriage that sometimes hangs on by threads of promises.  We will overcome our tough times.  We love each other.  We are healthy.  Each season is filled with lessons to be learned, and knowledge to be absorbed.

I am thankful for a job that I love.  It's outside of my comfort zone in so many ways, and I'm doing well.  The hours are flexible, and the pay got us a home.  It makes me value the role of a stay at home parent.  I miss doing crafts with my kids, and drinking tea during naptime.  My job has allowed Adam to see what I go through, day in and day out; he is understanding that the difficult part of a mom isn't the same 'difficult' as a job outside the home.  Seclusion and repetition are difficult in a different way.  And although our roles are temporarily switched, I think the process of that has helped us have empathy for one another...and that's really hard for me.

I am thankful for Sparrow Club.  It is a light in so many ways.  It's helped provide for our family and at the same time, made us feel that we're making the difference in the lives of kids in our area.  We purchased a kitchen table with some of our Sparrow money this week (we had to sell our old one b/c we knew it would be too big for a small apartment.)  Having a kitchen table helps reinforce the routine of eating for Joel.  He's eaten more in the last 3 days than he has in a normal week.

I'm thankful for my parents.  They've helped us so much since we've been here.  I can't imagine not living in the same town as them.  They love our kids unconditionally, and they are very involved grandparents.  We lived with them for the first 6 months in Medford, and they were more than welcoming.

I am thankful for the Foo Fighters album 'In Your Honor.'  Music has always played a big role in my life, and it plays a significant role in my coping as well.  It's helped me get through the past year when I needed it most; healing wounds I didn't even know needed healing.  I had to go to the Ronald McDonald house a couple of weeks ago.  I think I had an anxiety attack.  I cried so hard that I couldn't breathe.....why?  I didn't know that staying in a group home for one night would evoke that much emotion.  Thinking of the treehouse right now doesn't make me sad. But that night, listening to that receptionist tell me which locker was mine, how to label my food, and where I could check out books was enough to make me breakdown.  I still have a lot of healing to do.  I'm so grateful for songwriters like Dave Grohl.  He knows just what to say, and every time I sing along, it gets a little easier to uncover those memories and deal with them in a healthy way.

I hope all of you had a great Thanksgiving.  We went to Coquille, where we attend our annual Thanksgiving dinner at Neema's house.  We laughed, we ate, and we watched our kids do the same things we once did.  It's amazing to me being in a house with so many memories.  My dad grew up there.  I grew up there.  And now our babies are playing there; eating up to the same table we once did.  Riding bikes around the same sidewalks, swinging on the same swings.  <3  Love it. 

One of my favs.  Luckily we go with professional pictures every year, or this is what we'd end up with. 

HAHA  He may have liked the sweet potatoes, but he's still unsure of aunt Tana!

Sunday, November 13, 2011

The Boy With A Bottle

To set the scene, let's start by saying that I've had someone recently tell me that "kids like Joel don't comfort eat.  There is nothing comforting about putting something in your mouth after you've been intubated for long periods of time."  And: "He doesn't understand the correlation between being hungry and putting food in his mouth.  That was interrupted when he got his feeding tube."

That just didn't seem right to me.  (Now I'm not trying to pat myself on the back here, but I'm just trying to prove the point that mothers know their children best...)  I know that there are some very true facts up there.  I'm just saying that they don't apply to us.  I believe that with hard work and prayer, we can overcome that.  This woman did not.  We have been faithful to keeping Joel with his binkie.  At 20 months old, he still can't keep it in by himself, but he definitely uses it for comfort.  He is able to drink from a sippy cup, a regular glass, and he can suck out of a straw....but he'd only tried a bottle once, and it was months ago.  When we were unpacking the house, I found his bottles in a kitchen box.  Immediately it stung like a bad memory....they were things I remember purchasing while he was in my tummy.  Just preparing for our new baby, not realizing at the time that they wouldn't end up being used.  I've looked at those unused bottles countless times over the last 17 months...

I put some pediasure in one of the bottles and handed it to Joel, thinking he'd have fun playing with it. But he drank it.  All of it.  It took all day.  FOR REAL.  It took him 24 hours to finish that 4oz bottle.  But he did it.  And that was 120 calories that we didn't have to try to get him to eat.

Today, we got 320 calories. :)  I think we're onto something here...



This has been tough.  We have tried every single day to get our son to eat since Joel was 10 months old.  We've gotten creative, and tried new things.  I've read blogs from other moms for inspiration.  I'm continually scanning the grocery stores for new products that are calorie packed that Joel might like.  We try, sometimes to get zero progress for the day.  But THIS.  This makes it all worth it.  This is reassurance that I know my son best, even when I'm told the opposite.

A Postponed #13

means many things.  On Thursday, Joel was scheduled to go in for his 13th surgery: closing up his trach stoma.  It was different that the other surgeries in that it was supposed to be his final surgery.  FINAL.  As in no more.  I can't put into words how momentous this surgery was to me.  I want so bad for the next chapter in Joel's book to be one that didn't involve checking into hospitals, and I thought we were there....

But we're not yet.  Joel had a cold, (which he has now given to me...) and it prevented them from feeling safe performing the surgery at the scheduled time.  And it makes perfect sense; who wants to have their neck sewn shut and then have a cough on top of that?  Ouch.  The risk of him blowing out his sutures was high, so we went back home.  (On a side note, I called in advance to let them know he had a cold, and they said he would be fine...that was before we drove 5 hours to get there.  That's another story.  One in which I yell obscinities about OHSU, and I don't have the energy to do that today.)  So we're waiting until cold season is over to have his lucky #13.  And until then, we wait.  I mean, what's another 6 months with a hole in your neck, right?

Thursday, October 20, 2011

#12

"Before"

First "after" pic.  Still needing a little O2.

Resting up.

Just got home this afternoon from Portland.  Joel's surgery went amazing.  His doctor, Charles Bock, even came into an unexpected challenge, and did the correct thing interventionally, that prevented us from having to go in for an additional surgery later on.  We were super pleased with the bedside manor of all parties.  His eyes are parallel!  They are red/bloody, so I won't be posting any pics until they're healed up, (they look pretty bad.)  He's starting to act more like himself, and today on the way home, he ate some McDonald's french fries. :)

Thanks for all of the prayers and good thoughts, and wonderful encouragement!  I don't know what we'd do without all of you.  XO

Thursday, October 13, 2011

Perfect Sense

I've been agonizing over Joel's feeding issues since he started eating.  We beat the odds in the hospital.  We beat the odds and got his trach out in March, when they said it wouldn't happen.  We got a g-tube by our goal date.  I push and push, and we work so hard to get to our goals, because knowing that I have a kid that beats odds, there are no limits for us.  Everything is fair game.  Joel's calorie intake literally has me up in the night worrying....it's making me crazy. 
I called my friend the other night.  She lives in Spokane, and has a 17 month old.  She's also a physician, and it's so nice to be able to talk to her on a level that most people don't understand.  But she's also a mom.  A great mom.  And I talked with her for over an hour, crying about feeds.  Crying about what we may not know.  Wondering if I've been in denial during parts of this.  (To backtrack a bit, someone told me that feeding tubes typically come out near kindergarten.  KINDERGARTEN.  This added to my obsession with making goals.  Beating odds.  My child is not going to Kindergarten with a feeding tube.)  She helped so much.  When we compared the two kids, Joel sounded more and more like a typical child.  I know I go over this over and over....wondering if he's ok, developmentally...  Her daughter ate tartar sauce for dinner that night.  Just tartar sauce.  DUH.  Because she's a toddler.  Just like Joel.  They're meant to be difficult and have a gap in communication with us, that's where they're at. 
After hanging up with her, I went through some of J's old pictures.  Looked at where we've come from.  Where the other kids were too....we've gone through so much, come so far.  This is a victory even when it doesn't seem like it.  I got my thankful back.
This week Joel has:  Pointed to three body parts- feet, eyes, nose.  Learned new words: Thank you.  I love you.  Bathtub.  Bye Bye.  Please.  Walked three steps from mommy to daddy.  Tried putting shoes on his feet.  :)  It was a great week.


Saturday, October 1, 2011

A Frustrating Perspective.

Imagine this:

Fix someone food 4 to 5 times a day.  Different foods from what everyone else in the family eats.  Special foods.  Interesting foods.  Expensive foods.  Foods that are easy to swallow.  Tasty foods that may spark a toddler's senses.

And then on top of that, you have to worry about calories.  You count how many calories are in each tablespoon of butter (100,) or in 2 tablespoons of peanut butter (190,) and you try to calculate how many calories are actually taken in....because if he doesn't eat enough calories, you're going to have to push food through the tube in his belly.

And then the little precious that you fix the food for- doesn't eat.  Not one bite.

Repeat this.  A billion times.  And then wonder how this tube is ever going to come out.

Saturday

It's a typical Saturday morning at our house.  Mia's up to the bar, naked, watching cartoons with food all over her face......Connor's there too, tattling on her for getting into the truffles on the counter.  Jojo's in bed with Adam, after being up in the middle of the night for some odd reason.  He was saying "HIIIII  HI HI HI HI PAPA PAPA PAPA...." for about 15 minutes at 4am before being coaxed back to sleep.   It was so cute hearing him, even though I was half awake.  I need to make coffee.

Adam's been interviewing for a job at the bank.  It sort of fell in our lap.  We weren't looking for a job for him.  The plan was for him to go to school.  It was his first week, and he's been stressing about Spanish, and then BAM.  He gets an interview.  And next week he has interview #2 and #3.  And by the end of next week, we find out if we get to live in an apartment, or a house.  I'm praying for a house.  This job feels right.  Like SO right, like finding a puzzle to Adam's puzzle piece.  I can't imagine them not offering him the position.  We found a house yesterday off a craigslist ad, and put a few dollars down for an application fee.  They know it's pending the job which we'll find out about before next Friday, but we want to reserve it in case.  It's an older home, remodeled, near our church (that I'm hoping to attend again soon,....) and it has everything we need.  We can't raise chickens there, but I'm ok with that.  There's room for the trampoline, and there's actually an outbuilding/shed that is pretty perfect for my pottery studio.  I'm thrilled.  Adam's acting his usual non-emotional self....  Everything seems to be on the line, but really it's not.  We came here for Adam to get back in school, and to be near our family, which we are.  I wish I had a picture to share, but I don't.  Please pray for this fabulous stuff to come into fruition!  PAH-LEEEZE!

Tuesday, September 13, 2011

18.

You are 18 months old.  For eighteen months, my Father has been exfoliating what I once was, into a mother, who will one day be worthy of the precious little person you are.  Saying that I'm thankful for every day is so much of an understatement that it doesn't even seem right to be putting it out there.  But I am.  I'm so thankful.  And HONORED, to be the mommy of a special-needs child.  Somehow, I knew I had it in me.

A few cool things about you right now:

You love to dance.  To everything.  And you have great taste in music.  You've had music playing in your room almost every night since the day you were born, and you have a mommy who sings, so...I hope that music is as influential to you  one day as it is to me.  It's looking that way.  You can snap your fingers, and kick your feet to a beat, even when we don't notice that there is music playing. You find it before we do.

You have a temper.  (Like we didn't see this coming... ;)  I love it.  A person with opinions makes things happen, and you above anyone I know, can definitely do that.  You're at an age where your lack of vocabulary frustrates you, but we're working really hard to get past that.  You can say: No.  Mama.  Dada.  Papa.  (Mimi comes out 'meh,' but we know you're trying, and I had to give you something for the effort,) All done.  Molly-Molly (moy-moy), Dog.  More.  Up.  Hat.  Yes.  :)

You are snuggly.  We were so sad to say good-bye to duckie, the poor binkie that died, twice.  We've moved on to the froggie-binkie.  You don't seem to notice the difference, but lately, you want to snuggle more.  You plop down in the middle of the room when you touch a soft blanket.  When I come home, you give hugs, and you miss people when they're gone.  It impresses me, because I think I look for something to be wrong with you....like, waiting for you to not progress or something....and then you do.  Continually surprising me.  Continually melting my heart in ways I never thought possible.  All props pointed to the sky.

Happy 18 months, sweet baby.  Thank you.  For all that you've taught me.  Over and over.


Friday, September 9, 2011

My baby, the Sparrow...

A couple of weeks ago, our nurse Debbie suggested that we connect with Matt Sampson of Southern Oregon Sparrow Club.  She thought we would be a good match for the Sparrow program and so did he.  Here is the program in a nutshell: Local schools pick a child from the area and "adopt" them.  The school is sponsored by a business, and that business pledges to pay students $10 for every hour of community service they do.  They money they raise goes to help families with special-needs children.

This is an amazing organization.  It started with one child, donating $60 to his teacher who had a son with Leukemia.  What an incredible way for kids to learn compassion and empathy for others.  You can learn more about Sparrow Clubs at  http://www.sparrowclubs.org/

We were adopted this afternoon by Hedrick Middle School, at an assembly with 900 students.  It was an experience I will remember for the rest of my life.  I don't even know what else to say.  So moved.  So inspired.



 

Thursday, September 8, 2011

FIRST GRADE!



School started this week.  Connor woke up before six on his first day of school, had cheerios for breakfast, and put on his favorite new shoes, and the essential- the Ducks' jersey.  He was pretty nervous by the time we got to his class, but I have all faith that he's going to do great this year.  I can't believe the time has come for me to have Connor in all-day school.  Wow.  Time has flown.

Well, what the heck are we supposed to do now?

So, I've tried to stay away from the monotonous feeding posts, because really, it's boring.  And things are changing so fast with Joel that I could keep a blog just for the dang tube news.  We went down on his bolus feeds because he was eating so well by mouth.  And now he won't eat.  Again.  I thought by going down on his boluses we would increase his appetite....RIGHT??!!  Wrong.  He is being a picky toddler.  Now the micro-managing mother in me wants to make him eat.  Because that is what I would do with my other children.  Consistency would theoretically be a very key thing here.  But what about oral aversion?  Would forcing a child to eat be harmful to his tube wean in the long run?

He won't eat anything with calories, and we've actually had to supplement with another bolus feed tonight because he's not meeting the daily 300 calorie minimum.  I'm so bummed.  And feeling stuck. I don't want him to lose weight, and I really want us to meet our goal of him getting his tube out by next March. :/  Why didn't this kid come with a manual?!!

Monday, September 5, 2011

STUD!

video
So it's no big secret that we punish Connor with push-ups.  It works great for a little guy with a temper.  When we got him started in Tae-Kwon Do, they were pretty impressed when he did all of his push-ups with his ankles crossed.  After the older kids found out they showed him how to do them one-armed and "clap push-ups".  He's a fanatic now.  I'm proud....and a little embarrased, as I can barely get out ten!  Go Connor!

List Maker

I am thankful for:

New friendships.
My husband who has new love for me everyday.
My parents
The house we live in.
Joel and everything that he is
My funny kid- Mia
My determined kid- Connor
My sweet to the bone kid- Logan
Valley weather
The girl at the makeup counter at Macy's
Curly hair
My creative side
Jesus.

Summer's End

Today was the last day before Connor starts first grade.  I'm so excited for Adam and my sanity through the next year, as Connor and Mia are in a "Ihatemysiblingsoi'mgoingtofightwiththemeverychanceiget" phase.  They are driving us bonkers.  But also, It's tough.  I can't believe our baby is going to be away from us all day.  It's also a very "time stamping" event.  That means that we've been living with my parents for an entire summer.  Like 3 months without my favorite coffee mugs or my shiney oversized black belt...or my couch or my bed....(I do have a bed....it's just not a tempurpedic ;)

Adam and I have started looking for rental housing in our budget, which is tiny by the way... and it appears that we either need to learn a second language, join a gang, or get our concealed licenses.....for real.  It's that bad.  I'm trying not to get discouraged, but I just don't know what else to do.  Apartment living is starting to become an option, but with 4 kids....ouch.  It's just not a good combo.  I know God will provide for our family.  The waiting is not very fun though. :) Story of my life!  HAHA  I can't wait to see all of our stuff again.  To have our own space....TO HAVE INTERCOURSE WITH MY HUSBAND WITHOUT MY PARENTS OR A NURSE NEARBY....  Oh, the simple things :)

Monday, August 15, 2011

The Neck Fart!

video

I think I've mentioned before that Joel's trach stoma is still open.  It was supposed to close on it's own and didn't.  With three other siblings, and that sound coming from his neck, it was bound to create some interesting moments around the house.  It never fails that most of these happen around meal time. :)  I love my funny kids....we'll work more on manners after the closure!

Whatever It Takes.



Adam and I joke about this quote from a (raunchy) movie that we love.  "Nothin' brings out the flavor of a steak like some Ketch-uuuuup."  And after Joel rejected cheesy scrambled eggs two days in a row, I opened the refrigerator door and looked to see what I could combine with them to make him eat his breakfast.  Ta-da!  The ketchup worked it's magic, and now he's eating and entire scrambled egg in the morning.  AWESOME!  This afternoon I cut up some avocado, which he usually loves, and he snubbed his nose to it.  Tried my latest trick and added ketchup, and he ate them! :)

Thursday, August 11, 2011

The Specks are Back!

Two more appointments down in Portland yesterday.  #1:  The long awaited swallow study.  Joel's been eating for quite some time now, but he needed the swallow study done at some point, and definitely before professional feeding therapy is telling us to give him food regularly by mouth.  He did great.  After a brief battle with radiology about how toddlers work. :)  He immediately refused the toddler chair (duh) and needed to be sitting on my lap.  So we did that.  And then the speech therapist couldn't put anything in his mouth....he had to do it on his own.  We let him have his way on all accounts, and were able to get a good recording of what his swallow looks like.  We were passed to go ahead with feeding him like a normal kid.  YES!

#2: EYES.  Met with Dr. Bock about Joel's eye surgery and a basic eval, which we were expecting.  What we weren't expecting was to be told that Joel has astigmatism....so the glasses are back :)  It's going to be tough to convince him to keep them on his head. Hopefully we'll keep consistent in it and he'll get used to them.  We talked about surgery, and someone will be calling me the beginning of next week to set that up.  I'm so ready for this to be over with.  Until then, I'll be waiting for little guy to get his glasses!  Pics coming soon....

Wednesday, August 3, 2011

I've got joy, joy, joy, joy....

I know I've said this a hundred times, but I don't care.  I'll say it again.  God is so good.  And he knows me so well.  Things have been so tough trying to get our resources lined up for feeding, finances have fallen through the floor in more ways than one...  and not that our set up here isn't completely from God, but it's still tough.  It's tough being 28, having four kids, and living with your parents, regardless of how wonderful and willing they are to have you under their roof. 

I met Debbie today, an RN from the health department.  She came to our home to visit with Joel and I about our feeding regimen.  That in itself was a dream come true.  So much has changed since we last saw dietary, and we really needed guidance there.  That's not all she did.  She managed our WIC care, talked with us about SSI and OHP benefits, and alerted us to things that we qualify for/aren't taking advantage of.  She was awesome.  She talked with us about what Joel is currently eating, gave us new goals, and wants to see us again in a week.  I love her.

What a faithful God we serve, that we get help when we ask for it.  Debbie was the person I needed to talk to today.  She lifted my spirits when I needed them lifted most.  <3

Monday, August 1, 2011

Mommies, I need your help!

Help me get creative.  Joel's refusing all food right now that isn't a "finger" food.  He just started eating graham crackers (he can chew), but he can't chew hard things yet.  We really need to get him eating things with calories.  He's tired of eating puffs and cheerios.  Can you help me come up with some new ideas for foods that are safe for babies to eat?  The higher the calorie content, the better.  He has difficulty swallowing things that are hard to manipulate, and he gags easily.

HELP!

Sunday, July 31, 2011

http://www.youtube.com/watch?v=D58eufx-_4Q

Found this video tonight on youtube.  This describes Joel's heart defect and how it works (worked) before surgery.  Joel also had his pda open, vsd, and asd...which are described at the end of the video. 

Nightmarish

A topic I've been avoiding for awhile.  Our home nurses have heard me talk about my reoccuring bad dream.  Almost nightly, Joel dies in my dreams.  It's horrible.  I've been having this awful scenario play out for over a year now, and I thought it would stop after his trach came out but it hasn't. 

I turn around in the car, and he's lost consciousness without me noticing
Drowning in the bathtub.
Falling out of his highchair
Dropping him
Falling out of a grocery cart...

I could go on and on.  My dreams are haunting me.  I don't know if it's stemming from a few scary moments in the hospital, or just the stress of being "the person who knows everything," or what.  It's exhausting.  And sad.  And they wake me up over and over.  Adam doesn't get them.  Why am I?   

A day like today

It was nice.  So nice.  There was a birthday party in Roseburg today that we were all invited to.  I originally thought I had to work and assumed Adam and I wouldn't be attending.  When I found out that I had the day off, we opted to stay home and let the kids go with mom and dad.  BOY am I glad that we did!  We still had Joel, but when you have as many kids as we do, a one-kid-tag-along feels pretty close to a date.  I planned a surprise "day-date" for us.  A drive to a waterfall was the plan.  A hike up the waterfall with some pictures along the way was the plan...
But it didn't go that way.  We just drove.  I packed strawberries, left-over pizza, and generic diet pepsi...(romantic I know,) and we drove for 2 1/2 hours.  Up Highway 62 to Prospect, stopped at Lost Creek Lake, visited the marina, took a few bolus breaks, checked out the yurts and cabins at Willow Lake,...yada yada,...and eventually made our way home.  IT WAS FABULOUS.  Unfortunately I was having such a fabulous time that I forgot to even take my camera out.  I can't remember the last time I had 3 hours of straight company with my husband without being interrupted by a child, a tv show, a phone call....my parents...you name it.  It was absolutely what the doctor ordered.  Thank you mom and dad for taking them!  I love you long time!

Saturday, July 30, 2011

Therapy.

We had a little sit-down with Corinne and Nancy this week.  Nancy is a family teacher and Corinne is our OT, (occupational therapist.)  It was our first time meeting with Corinne, and Joel pulled out all of his new dance moves for her (he has two. :)  I can't express enough how much I love therapists.  Besides the fact that I love our Washington crew, they are great people.  They want what's best for your child- to thrive and excel, they celebrate your victories with you.  It's exciting for us because it's reinforcement that we are actually making progress when it feels like we're in the middle of a plateau. 

The ladies dropped me a name of a Community Health Nurse, Debbie, who I am meeting with next week to discuss Joel's dietary needs.  Things have gotten worse in that area, and he's gone to eating little to nothing at all....part of which is from a change in formula, and part because he's stubborn.  I'm putting a lot of faith in a woman that I haven't met yet.  I'm hoping that she can help us resolve this issue, and make our child eat.  I want him to eat desperately.  Watching him refuse food all day long is really getting me down.  Some prayers would be great. <3  XO

Sunday, July 17, 2011

Life Starts Now.

"A Day in the PICU" was such a great outlet to me during the time that I needed it.  There's only so many updates in the changing world of a sick baby via facebook.  Much of it is sad at times and for the thousands of "how are you" questions, this seemed to be the right answer.  But that was then, and this is now.  We're in a different place in Joel's recovery, and if you're a parent of multiple children (one of which being special needs,) you know that the stress of rehabilitation takes it's toll on the entire family.  Our other three kids need recognition in more ways than they used to.  This blog is for them too.  'Life Starts Now' is dedicated to my husband, and our four kids....so that we can document the aftermath of CHD on a family that refuses to do anything but cling to each other, and our Creator.  Feel free to follow our journey.

For the love of all things green




I absolutely love gardening.  Fortunately, my parents' house has a large area for that.  My mom and I have worked so hard this Spring on building a large one, and it's starting to pay off.  With the additional stress of Adam's summer term, me working, and Joel's "entourage," it's nice to have a little sanctuary to retreat to once in a while.....or every day. :)

Saturday, July 16, 2011

Let's Talk About Food.

Food and the tube.  Uuugh.  This will get better.  We're at the start and it's going to get better.  So a week ago, Joel was eating up to 11 ounces of baby food a day....around 100 calories.  I was stoked.  Something changed when I went to work.  Daddy feeding him was apparently the trick.  And then we had G.I. a week ago.  Until now, Joel's been on a formula that is basically broken down for him.  His body didn't need to do any work to retrieve the nutrients from it; and there was a reason for that.  He was getting all of his food directly into his small intestines.  HOWEVER, now that he's the cool dude that he is, taking foods in his stomach like normal people....I thought we should push for pediasure. It's normal for kids his age, it comes pre-made, so I don't have to be making pitchers of formula everyday (YAY,) and it's what his body needs.  So we made the switch.  La-de-dah.  And guess what?  The kid doesn't want to eat now.  Not at all.  He's figured out the sign for "all done" and "yucky/don't-put-that-in-your-mouth" and he does both when I offer him bites of my food.  Going from 10-11 ounces to maybe 4 is disappointing.
Here's what we think is going on:  Pediasure is more filling.  His calorie/ounce has increased, there is more fiber in his food, and his body is having to do a lot of work....(normal for you and I, foreign for him.)
So now we wait.  We've been given the advice to wait it out, watch for normal bm's, and hopefully his appetite will increase.  Let's hope so.  We don't want to start back at square one.  Pray for Joel to eat!

Wednesday, July 13, 2011

Doctor Visits

Just thought I'd post a quick update on Joel's doctor visits.  We saw cardiology at the end of last month, and everything looked great.  He was extremely well behaved for a toddler past nap time. :)  We were cleared to now see cardiology once annually.

Last Tuesday, we made it up to Legacy Emanuel for G.I.  I was a little worried about this one, as we've changed Joel's fluid and food intake dramatically (without permission, and without a swallow study...)
but it went well.  He's a new doctor, but he was professional.  We got the o.k. to see him every six months, a huge step from where we were in Tacoma.  Unfortunately, Emanuel doesn't have dietary included in their GI appointments, so I have to make an appointment with a feeding team separate from them to talk with a dietitian (annoying.)  Bummer.  So, no swallow study yet.  I've called three times now, routed to different voice mails, with no luck.  I have six days off, starting....oh, 2 hours ago.....so I'll have some free time soon to get to the bottom of the run around.  One cool advantage to Medford is that they have a local feeding team!  Major plus.

Next week we drive to Doernbecker for Respiratory.

Side note:  Joel's trach stoma (stoma is a fancy word for hole) is still open.  It was supposed to close on its own within a month of taking the trach out.  So months later and an out of state move, and we're trying to schedule this surgery to close it up.  This surgery is good because: #1:  Holes in the neck aren't a benefit when you're swimming in pools or taking baths, and #2: It has a striking resemblance to a butthole.  So we knew the cosmetic portion would come at some point, but now that there's some functional issues, we're gonna put a rush on that.  Also, Joel's learned how to "neck fart."  Meaning he pushes air out of his neck....at perfectly inappropriate times.  In public.  And he thinks it's so funny.  It kind of is.  :)

Yes, back to respiratory....we've been having a hard time getting into our Washington surgeon- whom we love so much- because we don't know if they accept our Oregon state insurance.  Still waiting on that, but in the meantime, we'll be seeing a Respiratory doc who may refer us to someone new, or pull strings so that we can see Boseley again in Tacoma.

August 10th we have our first appointment with an OPTHAMOLOGIST.  Yes.  Opthamologist, not optometrist....because by now, I've figured out the difference, and I'm tired of dealing with the two of them, and I want my kid's eye fixed.  A very best friend of mine referred me to a doctor that she personally worked with, and I've decided that if I trust this guy, Dr. Charles Bock, then we'll do whatever he thinks we should do.  Surgery, exercises, whatever.  I just want to get on with our lives.  Of course, Joel is a high risk kid for the corrective surgery not working because of his other issues, so if I end up having him with crossed eyes for the rest of his life, he'll still have lots and lots of pictures taken. :)  And we'll love them just as much.

Monday, July 4, 2011

Dinner Date




With money constraints and our busy schedule, date nights seem to be few and far between.  Adam picked me up the other night after work and we drove to Bear Creek park.  It was a beautiful night!  Adam cooked dinner for us four (we were minus Logan and Connor,) and we sat and enjoyed quality time with one another.  It was the perfect date, plus two. <3
Gosh, I used to be such a blogger, and now I can't seem to find the time to even check my favorite blogs to read.  I started a job a few weeks ago, and they're working me into the ground!  Life is good here.  We have a lot of new things happening, my job for one, Adam starts school in another week, and we've been chipping away one by one on our summer fun list.  Last weekend we made it to Lakeside and CAMPED!  Yes, Joel went camping for the first time.  And it was way fun.  Here are a couple of pics.


Snapping his fingers- the new coolest thing to do!

First Boat Ride!

Joel has come SO FAR in his eating in the last week.  Just when I was getting discouraged, he started eating more than 8 ounces a day in baby food!  He's added feta cheese, and greek yogurt, and watermelon, avocado, and cheerios to his diet. While we were camping, he actually bent over and took a bite of Adam's turkey sandwich when we weren't looking!  We have our first GI appointment with the new doc on Wednesday of this week.  I'm nervous.  Dr. Yuwono was so "tuned-in" to our family.  I just hope the new guy is too.

Also new: snapping fingers and dancing.  :) :) :)

Tuesday, June 14, 2011

It's hot. Let's do summer stuff.
















Insert five million pictures....done!  Summer seems to finally be in full-swing here, and we were so ready.  Our garden is getting large enough to install trellises, and I actually got in the water today (RARE.  SO RARE.)  The last time Adam and I lived in the Rogue Valley, we lived very different lives.  He co-owned three piercing/tattoo shops, I was a party girl, and we were newly dating.  We didn't do much "outdoor exploration."  Now that living back in the area, we're realizing just how wonderful this part of Oregon is.  There is so much to do outdoors.  We've hiked tablerock...(not as fun for the kids as it was for us, :) visited Ashland's weekend art market and Lithia Park, spent some time out in Jacksonville, and today we went to Emigrant Lake for a picnic and some swimming.  We've made our 2nd Annual 'summer fun list' and budget constraints or not, we're going to make this the best summer yet!

Sunday, June 5, 2011

on surgery

Harder to put on paper than it is to bring up in conversation, I know nothing about eyes.  I know what doctors have told me about Joel's, that the first doctor we went to badly needed to retire, and that Dr. Baxstrom is an optometrist and not an opthamologist...and there is apparently a difference.  A big difference.  And after moving down here to Oregon, I'm finding out very quickly that some doctor's offices treat OHP patients differently than those privately insured.

The original plan was to continue with the eye therapy that Baxstrom laid out for us.  His progress as of now is at somewhat of a plateau.  Our time spent doing eye exercises has decreased.  Our time spent wearing the glasses has decreased.  And other areas of his physical development have gone through the roof....sometimes kids only want to work in one area at a time.

After being referred to a local Opthamologist, we were told once again that Joel needed surgery.  Most of what this doctor said contradicted what Dr. Baxstrom had discussed with us.  When I had questions, I tried to keep emotion out of it, but I think it was obvious that I was frustrated.  I want Joel's eyes to be fixed.  I don't need a pissing match between doctors.  During the question/answering session, I caught a few snide remarks from the assisting nurse in the room.  At one point, she literally laughed out loud when I asked a question about info that didn't sound right to me.  I asked her to leave the room, and the doc and I had a one on one conversation about the nurse's behavior and the differences in information I had received from the other two eye doctors we've seen.  Before I left, Dr. Schultz made the remark, "She was only reacting that way because she sees these questions every day.......She doesn't understand that you're not the typical OHP mom.  You're beautiful, and you're a great mom for Joel.  Thanks for being patient with us." 

Umm, was that supposed to be a compliment?  At what point in my appointment was any of our conversation about my insurance?  What does my insurance have to do with the way I am to be treated by health professionals? 

I scheduled the surgery for Joel.  And I'm cancelling it tomorrow morning.  After talking with a friend I think it's pretty obvious I need yet another opinion on Joel's eye...and if this new doctor decides Joel needs surgery, then so be it.  I just want this over with, but I'll be damned if I'm going to let someone operate on my son who can't even conduct himself or his office in a professional manner.

EAT THIS!



Our little boy wants to eat EVERYTHING!  He doesn't know his boundaries....he doesn't understand that he can't eat pizza yet, or that a drink of milk may go down the "wrong pipe" and lead to a possible aspiration at noon on a Friday, scare the living daylight out of his parents and end up in the ER for 4 hours. 

And while we're on the subject, that did scare the crap out of us.  We're in a weird spot right now....Joel hasn't officially been cleared to eat normal foods....just "tasting"...but his appetite is big, and he's figuring it out, and we're not able to see a GI doc or their feeding team for another month.  It doesn't feel right to hold him back on foods until then, but we have seen what can happen when we try something new.  So, we won't be attempting to drink milk out of a cup for the time being.  Not yet.  But it will happen!  Soon!

Friday, May 13, 2011

We're Doin' Big Thangs...

I don't know if I've shared this yet but the kids have been...acting up.  For the past two weeks.  Connor is "too much"....as in, consistently too loud, too expressive, too obnoxious, too physical....  Mia pees her pants on average 3 to 4 times a day (she's potty trained.  Or supposedly.)  And Joel, will not let me walk out of the room without crying.  Yep.  That pretty much sums it up.  The worst part is that there's nothing I can do about it.  It's messed up for them.  Our home is gone, and now we're on a perma-vacation with Mimi and Papa?  I can only imagine what they're feeling.  I try to be sympathetic, but I can't let them run us into the ground either.....sitting Mia on the toilet only to have her piss on the carpet five minutes later will get my desired reaction.

But somehow, SOMEHOW, amidst all of this chaos of insurance, switching things over, and registering for school....our son has morphed into a big boy.  In the past three days Joel has become completely mobile.  Now Connor was a pretty typical boy when he was learning to crawl.  He went for it.  But Joel surpasses this by 500%.  When he figured out how to crawl, he immediately figured out how to pull himself up onto everything in his path, walk with support, fall with grace.  He has found the freedom I know he has wanted for so long.  It's an amazing for me that I can't even begin to describe....I can only wonder how happy he must be right now.

Feeds have changed too.  We're all g-feeds now.  Originally an accident, we had hoped to hook him up for a g-feed in the evening, but it didn't happen, and the extension was left on the g-port.  (I'm sorry for those of you who don't understand this)  When we hooked him up for night feeds, we hooked the bag up to the g-ported extension by mistake.  But he tolerated it!  To make a long story short, transitioning to g-feeds has affected his appetite, and it's a big step toward Joel getting his feeding tube out.  He's disconnected from the feeding pump for longer during the day, and he's able to get hungry, which is dramatically helping our daily feeding therapy.  So, in addition to potato salad, we now have puffs, and stage 3 baby food, and pirate booty....AND WATER OUT OF A SIPPY CUP!!!!!!!!!!!!!!

Monday, May 9, 2011

They Call Me Tater Salad...

video
We're doing lots of fun, new things around here.  Joel's found a new interest in any and everything we're eating.  Last night we had potato salad, and he whined when Adam would forget to give him another "bite"....Who knew that a little mayo, mustard, pickle juice, and vinegar would capture a little boy's heart. :)
(Ok, so this isn't the greatest video of his eating talents...there were two.  The other one involved talking and coughing from the other people at the table and this one had waving in it.  I went with the waving.)

This week he started crawling!  We're only up to 3 "hand-knee's" at a time, but we're getting there.  He's teething, so it's been tough getting him to have the motivation to work on PT.

Waving is another big thing.  When we enter a room, he knows to wave to everyone.  Over and over and over. :)

Drinking.  He wants to drink from a cup.  I'm not sure if this is ok for him to do, but he's getting little mouthfuls of water, and doing a great job.  Water is SO MUCH FUN....or so he thinks.

Meddling.  He's getting into everything.  Last night, he knocked over a giant stand of cd's from his highchair.  He's learned to open and close cabinet drawers...(which sometimes includes his fingers.  Ouch!)  He rolls to Papa's dvd's in the tv stand and throws them all over the living room floor.  With the other kids, this would have drove me insane.  I'm still applauding, because with every new thing, it's just one more miracle we're witnessing.  We'll see how I feel about applauding these fun "messes" by next week. :)

Monday, May 2, 2011

Mommy Needs Peace

My day started out bad.  I mean REAL BAD.  Moving isn't fun anyway, besides the thought of a new adventure, and that wears off quick.  Switching Joel to Oregon services has proven to test my sanity, and sobriety.  (The last one was a joke...kind of.)  Washington state insurance was a piece of cake once we got him on straight medicaid, and during that battle I had a care manager to help with EVERYTHING.  Want to see a specific doctor on market street?  No problem.  Any doctor will take you.  Oregon isn't as easy.  Oregon providers only take a certain number of OHP patients.  And when I called around today, I got rejected by pediatrician's offices....and it left a bad taste in my mouth.  Why isn't Oregon medicaid accepted in all offices?  Anyone know the answer to that question?  I don't.

And then there was the getting Joel ON Oregon insurance.  Which requires a social security card and a birth certificate.  Anyone want to guess where that birth certificate is?  Either in storage container #1, or storage container #2......not enthused about digging through boxes for that piece of paper.

Oh, and then there was the GI doctor from dornbeckers that apparently doesn't have any openings for three to four months, and won't be referring me to anyone closer than Portland because there aren't any pediatric specialists outside of Portland.  Grrreeeeeaaat.

BUT, (this does get better, I promise...) I was driving down Stewart Avenue today to sign a release form at the PT office, and I was so worked up from my morning of aggravating rejection calls.  While stopped at a red light, I felt an overwhelming sense of peace that I haven't felt in months.  And I was reminded of one simple statement.  "You were made to be Joel's mom." 

Instantly it didn't matter what people wouldn't make appointments with us.  It didn't matter what specialists said about wait time, or what obstacles were in our way.  My God is bigger than that.  I am Joel's mommy because I have the ability to persevere through seemingly impossible situations.  I'm not supposed to take no for an answer; I just need to find the right people and ask the right questions.  I am a woman of FAITH.  Thank you, Holy Spirit for guiding me through my day.  One day at a time.

Thursday, April 28, 2011

Oregon.

Wow.  I don't think I can sum up the last three weeks into a blog post.  Here's a (very quick-like) summary...

-Adam and I start talking about going back to school....which was pretty impossible with his income and our schedule, and large monthly payments.  Which started another talk.  About downsizing into a smaller home.  Which fueled another talk....why would we be moving if it wasn't moving us closer to Logan?  And another talk....we can pretty much move anywhere we want now that Joel's trach is out and appts are farther and farther apart....

-A few days later, after working on A's resume, and making some connections down South near my parents, the talk of school comes back up again....and Adam said he felt like we needed to prepare for this move to happen...wherever and whenever that may be.

-Two days later, out of the blue... Adam was 'let go' at work.  Just like that.

So, school is coming sooner than we planned.  We sold half of our home's furniture, our gas-guzzling POS suburban, packed up our things, and moved to Oregon.  Like that.  And that was three days ago.  Our lease on the house was "coincidentally" set to end at the end of May.

It's great I guess.  We're going in the direction we were wanting.  Furthering our education.  Doing whatever it is that we want to do in life.  And as hard as it was for me to let go of my beautiful furniture, and say goodbye to many of my favorite things, that's all that it was.  Stuff.  It means a lot to all of us to stick closer together to my parents.  Adam's dad is 74 years old....we're not sure how great his health is, and maybe it's about time we get a little closer to him as well. 

It's just not happening like I planned.  Go figure.  I didn't want to be temporarily living with my parents until financial aid and part time jobs get lined up, but that's how it worked out, and I'm incredibly thankful that my parents are able and willing to help us out in that way.

We're exhausted.  We moved a house, had a garage sale, and set up most of the changes that come along with moving and unemployment...in 9 days.  I didn't think that was humanly possible.  I continue to surprise myself.

Here are a couple of pictures of the kids from the past two days.  PS- We have sun.  Neener neener!


helping mama plant flowers

His new love...as long as they're not all the way ripe...

Loving the outdoors! 

Nice socks, Connor :)

Stuck!



I forgot one thing....I miss you Washington people.  Terribly.