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!!!

_______________________________________

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. :(

______________________________________

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!

______________________________________

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).

_____________________________________

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! :)

________________________________________

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

_________________________________________

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!)

_________________________________________

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.

________________________________________

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.

_____________________________________

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!

______________________________________

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.

"H-e-e-e-y B-u-u-u-d-d-y" - Meeting Josh Blue!

Saturday I was lucky enough to go to a fundraiser dinner/auction and see Josh Blue perform!  He was fabulous!  Of course! :)  My friend, Angie, came with me.  She also has a son with CP.  It was such an honor to get our picture taken with him.  He was very friendly, signing copies of his CD's and DVD's.  A man in  wheelchair came up to get his picture taken with Josh, and they shook hands....which was funny because they both had crazy hands! :)  And then Josh gave him an autographed CD -for free!  The guy got so excited.  Actually brought tears to my eyes.  It was sweet!

He was on Last Comic Standing the summer of 2006.  Eli was just 10 months old.  I always held Eli, while he ate his dinner feed and fell asleep for the night, and I watched TV!  I've been a fan of Last Comic Standing since the first episode....I pick the winner every season! haha

I was so excited to see Josh Blue use his Cerebral Palsy in his act and not being afraid of it!  I also remember thinking, "His mom must be so proud of him!!"  And....he truly was funny!

I cracked up when I got home and saw his coat on the back of the chair in our picture that says, "H-e-e-e-y B-u-u-u-d-d-y-"  I say that ALL THE TIME (with the same funny drawl that Josh does)...and now that we have my mom's dog Buddy - my husband and I both say it to him everyday!  I just couldn't remember where I picked it up!  Now I know!  haha

Here is the only picture I got of him performing.  They dimmed the lights, so I couldn't get a good shot as I was zooming in!

When I got home that night, here is how I found Eli asleep in his bed:

The great news is the fundraiser was a huge success!  It raises money for Camp Prime Time.

A camp for special needs children, and their families, to be able to go have a camping experience.  Everything is accessible - even a tree house! - and it's all free to the families!

I'm hoping to get Eli on the list....I'm assuming there might be a waiting list? - and maybe we can go camping some summer in the near future.  I was so excited to hear my sister Shiela say she'd love to volunteer at the camp!  I think it would be a great experience for her and her husband! :)

Check out how cool the camp is: http://www.campprimetime.org/

Tablescape Thursday

Well, Eli's been up since 2 am and I am sooooo tired.  As soon as the hubby gets up, I'm going back to bed.
In the meantime, I've been surfing the blog world...and found a new favorite:

Did you know that setting a table could be a sport?  I didn't......and I am soooo excited!!!  I LOVE TO SET A TABLE!  So, I'm joining in this week's Tablescape Thursday blog carnival over at Between Naps On The Porch.

I'm not sure of all the rules for it yet, and I'm so tired I can hardly think - so I'm going to cheat a little my first time and use pictures from last year's Thanksgiving dinner that we hosted at our house.  I hadn't hosted T-Day in 10 years, and was bursting with excitement.

I love vintage aluminum....and gold leaf glassware.  Here you will see pieces from both my collections.  The dishes are from Pier One.  They were on clearance last summer and I was able to get service for 8 for about $200.00.  The colors go  perfect in our new house.  The green bowl you see was my Momma's.  She served green beans in it every Thanksgiving!  When she died three years ago, I knew I had to have that bowl...and I break it out every November.  So, if you ever invite me to Thanksgiving at YOUR house, be prepared for the dish I bring to be in this bowl.  Sorry if it clashes with your table.....but it makes me feel like my Momma is there with me :)

Since Eli is unable to make crafts with me, I try to include him as much as I can.

This is what I came up with for Placecards.

I traced his hand onto cardstock and then had him help me color the "feathers".

Thanks for letting me share these with you.  As soon as I learn all the rules of the game, I'll come up with something original and spectacular to post!

I can't believe I finally found a sport I enjoy!

hahahahaha :)

G-J Feeding Tube Is In! I'm Counting My Blessings!

Blessing Number One:

The forecast on Snoqualmie pass was calling for 3" of snow.

It was sunny and beautiful!

Blessing Number Two:

We stopped in North Bend to get Eli out of his carseat, and he fell asleep in my lap.

Blessing Number Three:

Eli did awesome with all the waiting around we had to do yesterday.  Was even a bit of a cuddle bug at times.  Even through the pain, he's a happy and good boy!

Blessing Number Four:

I caught this face on camera!  :)

Blessing Number Five:

I got some snuggle time with my boy.

Blessing Number Six:

Seattle Children's Hospital

We have had nothing but wonderful doctors and nurses attend to us there!

This is the Interventional Radiology room where the tube was placed.

See the two blue rings on top of the table?  Those are the head and foot of the 'papoose board'.

(It wasn't quite long enough and added a little extra complication.)

I was holding Eli's arms up and shoulders down with the help of an X-ray Tech, while Lonnie was holding his legs down.  There were two doctors placing the tube.

It took 20 minutes.

It was the loooongest 20 minutes I can remember since his birth!

But, it was successful and we are home and feeding him through it.  Turns out you have to vent their stomach often because the air can't escape into the bowels as well anymore.  Once we got that figured out, he was more comfortable this morning!

_________________________________________________

SO, WE WENT FROM THIS:

An AMT Mini-ONE Balloon Button (the lowest profile on the market)

(We always keep the extension attached because we use it every 30 minutes to feed him.  We used to cover it with an Ace Bandage.)

__________

TO THIS:

 

The Mic-KEY G-J Feeding Tube.  It's a monster on his skinny tummy!!!!!

This summer after his Stoma Infection, we started covering it all with Spandage.  (It helps it breathe easier)

We were worried about how comfortable it would be for him to sleep with this big new button, because he sleeps on his tummy....but he slept through the night....and even slept in a little bit! :)

We're not seeing a total transformation in him yet, but we are forever hope-full!

Searching for Answers

Eli has been suffering for about a month now with his reflux....and finally on Tuesday, we are heading over to Seattle Children's Hospital to switch him over to a G-J Feeding Tube.  It's a fairly simple procedure because Eli already has his G-tube.  They use the same stoma (hole in his abdomen to stomach) and put in a different kind of button.  It has a tube inside that goes into the start of his small intestine (the jejunem - or JoeDenim as my hubby likes to call it! He's a nut...and had me cracking up about it earlier this week!)

We are praying this will give him some much needed relief!!!

It's been a lonely road.  It feels like no one really knows what to do.  When he's having an acute case like this, and you call and want to see a doctor, they schedule for an appt in a month....that just doesn't work for us!  They prescribe meds to calm his body down.  And that's it.  We want to fix the actual problem.

My husband and I have been doing the research ourselves.  We called the doctor and told them we wanted the G-J feeding tube.  Luckily the GI doc agreed  But, still, no one has even seen him for this since February.  It concerns us a little....that we are making the decision for him.  But a couple of our Nurse and/or PT friends agree that it should give him relief.  So, we are going with our parental instincts...and we are hoping for the best.  That's just the way it is for us in this "special needs world".  Don't you wish your child's specialist could come stay at your house for a weekend and really get to know your kid?  We do!

Since Eli has had these issues come up in the Fall for the second year in a row, it made me suspicious.  Then our PT friend said she has seen it before in kids like Eli.  They go to school in the Fall, get exposed to new germs and viruses and it affects their GI tract...and can lead to tummy trouble.  What a bummer.  Preschool was going so well.  We may pursue getting a medical waiver so we can get some services at home.  We'll see...

We just want our happy boy back.  The one who just got done with his best summer ever! :)  Hopefully he'll be back in a week or so!

Costa Rica Here She Comes!

My 20 year old niece left today for a three month mission trip to Costa Rica with YWAM.

(Youth With A Mission)

If you think of her please pray for traveling mercies, good health, and that the group can really make an impact in the villages and towns they will be staying in.

Thanks!

Her proud Auntie!

There's A New Sheriff In Town

A couple of my friends on Facebook  talked about making popcorn balls today...so I thought, "Hey, that would be fun!"  So I parked Eli in the kitchen with me....and cooked up a batch.

WHAT A HORRIBLE EXPERIENCE!

That stuff is HOT.  You should see the blister on my finger where I got burned!  Ouch!

I'm glad I didn't have little fingers wanting to help me out...because I'd hate for him to get hurt.  And to top it all off....I about pulled a filling out trying to eat one of the dang things....and it didn't really taste that great!

What a bummer.

...

Moving on.

...

My darling hubby was kind enough to wear this fabulous costume my friend Erin found for me at Goodwill.  He looked awesome......

....but his horse was having some issues!

So, off came the horse costume and we just had three cowboys!

Aahhh - much better...

Thanks Lon for being such a good sport!!!

--------------------------------------------------

We ended the day by carving a pumpkin.

(Eli was so tired, but I was trying to keep him up until 7:00 pm, in hopes that he'll sleep in until at least 5:00 am tomorrow....which will then be 4:00 am with the time change!!! UGH!

 - - - UPDATE:  Eli slept in until 6:10 (old time) today.  It felt wonderful! - - -

He really enjoyed playing with the guts!

Excuse my deer in the headlights look - but I just loved Eli's mouth in this picture:

And cue the bedtime music....Eli's ready for bed....

I hope everyone had a safe and Happy Halloween!!!