A Never-Ending Journey

     Today, Melanie over at Better Than Normal posted "Everything Out On The Table".  She's overwhelmed, depressed, and coming to the realization that she's "not the super mom she wanted to be."

     Last week Katy over at Bird On The Street posted "Jealousy Jane".  Sharing the difficulties of seeing other families with multiple children, all healthy, and we don't even have one healthy kid.  She quickly followed up the next day with "Counting My Blessings" because she is not about being negative.  Just real.  Admitting the struggles we all face as the moms of special children.

     It made me realize I need to start pouring my heart out more - because that's kinda what a blog is for (and my big sister always wants to know 'what I'm really feeling') - and being more transparent in my writing.  Which is gonna be hard for me to do!  We are very private people.  We don't like to let everyone in on our problems.  We'll figure them out ourselves thankyouverymuch.  It's easier to pretend everything is fine, than to tell someone you feel so overwhelmed with life that you want to just run off and join the circus.

     But, Eli is going to be 5 in August.  Five!!!  Seriously.  Lonnie and I are amazed at how fast the time has gone by, and we know it's not going to slow down any time soon.  So, here is my attempt and putting it all out on the table and telling you how I really feel....

WE ARE:

• On a Never-Ending Journey.  Most parents have a destination with their kids.  The kid graduates from High School, goes to college/gets married/has kids/buys a house/visits occasionally.  You get your house and life back.  You get added family members.  New experiences, etc..    We don't have a destination.  We just have a journey.  Living day by day just keeping him alive via tube feeds.  We worry who will care for Eli when we are too old and/or gone from this earth.  And that's assuming he'll outlive us.
• Disappointed that he's had such health struggles that we weren't able to do all the amazing therapies we wanted to take him to. 
• Sick to our stomachs that he has NOT gained weight in THREE YEARS!!! 
• Overwhelmed at the thought of how school is going to work for him.  A simple cold just put him in the hospital for two nights.  How will he ever handle all the germs at school?  We've quarantined him every winter.  He stays healthier that way.  But he needs to be around his peers.
• Feeling like the world is very small because we only leave our town to go to Children's Hospital in Seattle.  We haven't had a vacation in 5 years.  Eli and I have gone to my Aunt's house to visit for long weekends....and for those I am incredibly thankful!!!  But other than that, we have done nothing fun as a family.  That sucks.  A lot.
• At our wit's end because no one can figure out what is wrong with Eli.  Did I mention he hasn't gained weight in 3 YEARS!?????

HOWEVER, WE ARE ALSO:

• So madly in love with Eli that we can't imagine life without him.
• Thankful for every day God blesses us with his care.
• Enjoy his laugh more than anything else in the world.
• Positive that he is THE BEST kid in the whole wide world.  Just try taking his blood while he's sleeping....he'll let you!  Because he's awesome like that!
• Thankful to have a house with a huge paved driveway where he can run in his Bronco.....his biggest accomplishment in life!

"I LOVE YOU MORE TODAY THAN YESTERDAY. 

BUT NOT AS MUCH AS TOMORROW."

So, how'd I do?  Did I get real enough for you Sis?  :)

Eli's In the Hospital

I've been sick about 10 days. I could tell Eli was getting it...but seemed to be doing ok.

All that changed Thursday!

He went quickly downhill that afternoon, and we ended up in the ER by 6 pm. They admitted him and we've been here 2 nights. They ran all the required tests, bloodwork, x-rays, etc....and everything came back fine.

VERDICT: a simple cold kicks Eli's butt!

(First hospital stay in a big bed! No crib! Yahoo!)

The congestion gets really bad because he has such a floppy airway, and doesn't swallow well. He can't manage his secretions and gets congested. Then he has a weak cough...so it takes lots of coughing and sneezing....and tons of suctioning...to help him get better.

(he slept great both nights)

They've had him on blow-by oxygen (see the cup above his head) while we're here...his sats were hanging out around 94-96, but this morning he's mainting 97-98. I think we'll need to turn the O2 off soon and see how he does on his own.

He was Mr. Mellow most of Friday...making this face alot:

(this is the "why does it hurt every time I swallow" face)

Then, Friday afternoon, he started to 'wake up'...and get his personality and energy back.

And his laugh:

To top it all off, though, his stoma is still bothering him. I can see granulation tissue....we're hoping that someone from the Wound Care dept. can see him before we get released...but we are quite eager to go home...so if they can't come early this a.m. .... we'll just go without seeing them.

We want outta here!

:)

Just Chillin' at the Motel

On January 3rd our power went out at 5:10 pm. It was off until 3:55 am. 11 hours! Luckily, Eli goes to sleep early, so it wasn't a big deal. Once he was asleep, we put 7 layers of blankets on him. We also went down to the neighbors (as they had power) and heated some corn bags in their microwave, and we put those under the covers to keep him warm. He stayed nice and toasty - even as the house cooled down to about 50 degrees!

This was the culprit - it took them hours as they had to dig three holes....until they finally found it. Like a needle in a haystack!


Pacific Power came back on February 3rd and dug up our driveway, again, and laid all new lines.

Today they came and installed the new junction box (or whatever it's called) and connected the wires. So, Eli and I checked in our local motel and hung out for the day. Being without power, water, etc, for about 6 hours, with him awake, didn't sound like fun.

We've had a great day..."just chillin' at the Motel"....

...AND THEN....

Lon came down to visit us, so I ran to get some lunch. Pizza Hut has the greatest vending machines in the lobby...so I spent the best 50 cents ever....for THIS:

Seriously. This was the hardest I've laughed in a long time. He kept doing really funny things trying to get it off his lip! I think I just found his new "therapy". I've never seen his mouth and tongue get such a workout! :)

Time to pack up and get outta here.

But, I just might come back tonight after Eli goes to sleep......and swim, or go tanning, or play in the arcade, or watch cable TV.....or sleep!

Osteopathic Manipulation

Last week, we started a new therapy for Eli.

Osteopathic manipulation.

Yesterday was his second visit...here he is waiting to see the Doctor.

This new therapy is a gift from God.

I met a gal named Heather, in my bible study, that is going to the new medical school in our town, that trains Osteopath Doctors.  I've been having my group pray for Eli, of course, and one night after class she asked me about him.  She told me how their therapy can help with pain and digestion....which seem to be Eli's two biggest issues.  She offered to talk to her favorite professor, Dr. Woods, and ask if he'd see Eli - for free.

Well, last Wednesday, they came to our house and did their first therapy on him.

They came to our house!!

Yesterday, we went to the college and he did the therapy in front of her entire class of about 80 students.

It was awesome.  At one point Dr. Woods asked me if I had anything to say.   I told the students,

"If meeting Eli makes any of you want to help kids like him, that would be awesome."

We've now been referred to a local Osteopath to continue his manipulations.  We'll see how it goes :)

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 Eli hasn't been in the greatest moods lately, so I haven't been taking many pictures. But, the other night he and his Daddy were hanging out together, and he was laughing - so I grabbed my camera and got these gems:

 

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Eli has been spending a lot of time on his tummy lately.  We're not sure why.  He drools alot so we keep dry burp cloths under his face.  Unfortunately, when he's ready to roll over onto his back....we end up with this: 

"Hello!  Somebody help me out here!"

I get a giggle out of it....how about you?

Yesterday, his Tigger toy was in his face - and he grabbed it and pushed it away from him!  His caregiver and I were sitting there talking, and we watched it happen!  We were both SO EXCITED!

Maybe someday he'll learn to get his burp cloths off his face!

:)

Oh, and while we're talking about rolling over.  Eli has always been good at rolling from his back onto his tummy by rolling to the left.  This last week, however, he has mastered rolling to his RIGHT!

Sweet!  He can pop his arms out from underneath him like nothing now!  I'm so proud of him!

Cute Bibs!!

We are always on the lookout for cute bibs....big bibs....not baby bibs.....

so if you are in our boat.....check these out!

http://www.etsy.com/shop/colbylanedesigns

Just a Little Something For You

Still not feeling like writing, but I thought I'd share some of my digital scrapbooking layouts with you:

Here is a LO using a free mini-kit called Apple Cider from http://raspberryroaddesigns.blogspot.com/

This LO is using a kit called Fly Me To The Moon by http://justsoscrappy.blogspot.com/

She has great kits for only $1.50 each!

One of my favorite digi-designers is Kristen Aagard.  This is using her kit called Ocean Deep.  Her kits are more expensive, and I was blessed to get a few over the holidays.  Her blog is here: http://digidelights.blogspot.com/

Another kit by Kristen, (http://digidelights.blogspot.com/) called Little Forest:

Have a GREAT DAY!

Winter Blues

I don't know what is going on.

Writer's Block? Winter Blues? But it all equals a Whimpy Blog!

Forgive me while I take a break from BlogLand.....I'll be back when my spirits are back up.

The good news for now is we took Eli to Seattle last week to have his GJ Feeding tube switched out (as it was leaking) and it was THE PERFECT DAY!

The weather was great for the drive. Eli was happy and did great in his carseat! (I could totally get used to that! We've waited for 4 years for him to do well in his carseat!) We didn't have to stop and get him out because he was so happy! We got to the hospital and it was nap time, so he had just started to fall asleep in my lap - when the nurse called us back. Of course!

I had also given him a little extra Ativan - and he was MELLOW and HAPPY and even laughed during...and the procedure went perfectly smooth! Like 5 minutes. It was fabulous!

We then went to the cafeteria to have lunch...and Eli took a 1/2 hour nap in my lap....and we headed home. He did great going home, too! In all - it was our best trip ever.

On the way home we stopped in North Bend at the Outlet Mall because Carter's always calls my name! Hee hee. No, really, Eli needed some new long sleeved onesies....and their 24 month onesies STILL FIT our 4 1/2 year old! :) They are long!

Just a couple doors down is the Rocky Mtn Chocolate Factory - and my hubby had a craving....I told him to get me a caramel apple. It was Eli's first sniff:

But the next day everything changed. He's fighting granulation tissue AGAIN. Ugh. I hate it....

he's miserable, his body is wild, and the days are hard....

Our winter quarantine has so far been successful at keeping Eli - and our whole house - healthy!

But it makes for a long winter.....and add to it the bleak, foggy, nasty, cloudy, wet/snowy weather we've been having....and I think it all adds up to the winter blues.

I'll start blogging again when I muster the energy...

Christmas Catch-Up

Thought I better get my Christmas Day pictures posted before the year is over!!!

We had a fun Christmas morning at home....

Then we went to Lonnie's sister's house with his family, for dinner in the afternoon.

Annual Family Portrait In Front Of Someone Else's Tree:

Next year we are going to set up the tripod and get one in front of our own tree!

Then on Monday the 28th, the sun came out, it was a whopping 36 degrees, so we bundled Eli up and took him outside for his final Bronco ride of 2009.  Good thing, too, because it's been snowing ever since!

I think Old Navy needs a handsome special needs kiddo in their ads, don't you?

I'm going to send this in to them......since he's all decked out in Old Navy gear :)

Merry Christmas

Christmas Time Is Here

December has been busy!  Grab a cup of cocoa...we have some catching up to do!!!

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On December 10th my Momma would have been 67.  I don't know why, but I miss her the most on her birthday each year.  Maybe because she loved getting spoiled for a day?  Actually, she loved being the center of attention whenever possible!  On her birthday I think she didn't feel the guilt!  :)  LOL~

She loved her birthday....and I loved finding just the right gift for her.  It's hard now when I see something I know she would have loved, when I'm out shopping, and I just have to leave it there on the shelf with no Momma to take it home to. :(

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Lonnie and I got to go on a date on Friday the 11th!!  First one since July!  We went to a Comedy Cafe our church hosted.  Comedian Daren Streblow performed and it was great!

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Then, on December 16th, my dear hubby had a birthday.

We celebrated at a lunch with his family on the 14th....and went back to his Mom's house for Kahlua Cream Pie and presents....Lon got new seasons of House and X-Files from his Mom.  I got him the Oswald Chambers Devotional Bible.  His sister got him a nice pullover.  It was a good day.

Then, on his actual birthday morning....he opened more presents....with Eli helping....and laughing. 

(Click on the picture to make it bigger....Eli's smile is worth it!)

These gifts aren't as exciting.  A clip-on book light (for aging eyes!!) and some McKinney Auto Glass Window Cleaner (a coveted item in our valley).

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We had a "Christmas Card Photo Session" on the 11th.  Hurried and designed my cards and got them ordered from Shutterfly.  Finally got them mailed out on Friday, the 18th!  Yikes.  I've never been so late!  But, Eli hadn't been feeling well, so I was just waiting for a day that he seemed calm and happy.  I'm VERY thankful for the fabulous shot I got for the card!  (Will post it soon!)    Only took 52 pictures to get the great one! :)  All you Moms of special needs kids know what I mean, right?!!

Here are the out-takes:

 

Yup - the OUT-TAKES - wait until you see the best! :)

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Yesterday, our local children's therapy center had their annual Christmas party.

Eli got his picture taken with Santa.

I don't think he likes Santa's fur on his face!  haha

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We got our first big snowfall on the 15th.  Almost 3 ".  Yuck.

(I know my sister Ricky is cracking up right now!  She lives in Montana and lives in below zero temps and massive snow banks all Fall, Winter, and Spring!)

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I've been quite the social butterfly this month!  Three lunches with my former co-workers, dinner with my small group from church, party with friends, Scrapbooking night, Scrappin' at the Village, decorated bulletin boards at our local NICU and therapy center........and I'm looking forward to Christmas Eve and Christmas Day to have more get togethers with family!

Me and Erin - the friend I organize the Selah scrapbooking event with each month, 4th Fridays at her church.

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I told you've I've been busy!  And I haven't even mentioned shopping, wrapping, and baking!

HUGE THANKS to my dear hubby who has been supportive through it all....and enjoyed lots of quality time with his precious son, so I could be so busy this month.  Thanks, Babe!  I love you!

Oh, Christmas Tree.....How Lovely Are Thy....Giraffes!

Life has been a little busy around here.

It took some time for Eli to get used to his new way of eating....and we finally started increasing his calories....and then the inevitable happened....we gotta figure out how to help him get it OUT! :)

The life of a CP kid:  Calories IN.  Poops OUT.

Alas.

We are confident that we are on the right path to help him feel better, and he's had a few great days in a row :)  Yahoo!  We had to quit giving him his prunes and pears because it doesn't work as well in the J-tube.

We are giving suppositories every 3 days to help him "go" and hopefully he'll get on his own schedule again soon.

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THANKSGIVING WAS WONDERFUL.

We went over to Auburn (South of Seattle) on Wednesday to spend time with my family.  They have cable internet service, so I was not able to get online with my laptop for 5 days!!!  And I survived!

When I got home, I just didn't feel like blogging.....and thats why I've been gone two weeks!

(Thanks for hanging in there with me.)

I didn't really get any great pics...I was so happy visiting with my Aunt Shiela and cousin Love'e....the camera just didn't even come out much.

I know.  Imagine that!

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Thanks to Emmett - our spirited cat - we have not had a Christmas tree since 2003 -

the year this picture was taken:

 So, this year I decided to try it again.  I put the tree up on a table than none of our cats seem to be fond of....and so far they have left it alone! :)  It's in Eli's dayroom, which has a pocket door - so I figured we could keep the cats out  if needed.  I am thoroughly enjoying the glow of a Christmas tree in the evenings!  I'm also happy Eli gets to enjoy it this year, too.

Here are Eli and Piper hanging out while I untangle lights....

After decorating the tree, I decided to put all of Eli's small giraffes in the tree...

LOVE, LOVE, LOVE the way it turned out!

It looks just perfect in his Giraffe themed day room.

See the Toy Story ornament in the bottom of this photo?  It's his 2009 ornament.

Can you believe I found this cool Carousel Giraffe for his FIRST Christmas?

Last night and into today we had the most wild and crazy wind storm I've ever experienced.

ALL.NIGHT.LONG. The wind blew so loudly - I felt like I was at the beach with airplanes flying overhead!

It started around 9 pm last night - snowed a little - then just kept whipping until about 3 pm this afternoon.

Lon just finished getting all the leaves picked up yesterday.

Now we have to go pick up branches from our Weeping Birch trees.

It's never ending yard clean up around here!

But I wouldn't trade it for the world.  I love our home.