"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!

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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!!!

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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!!!

Eli's Elusive Laugh - VIDEO

I FINALLY GOT IT ON VIDEO!!!!!

It's my absolute favorite sound in the whole wide world!

(The ocean has been moved to second place.)

Reflux Revisited

Eli is struggling with reflux, again.  Well, he always has....but...

Last year in November 2008 started a four month journey through h#!! with him being so sick we ended up driving 2 1/2 hours to the ER at Seattle Children's Hospital to try and get it figured out.

Finally, in March of 2009 we got him on a new formula, new feeding plan, and started giving him Ativan to help his body stay calm.

We had the best Spring and Summer ever!  But all good things come to an end I guess. :(

Then the reflux showed back up again about 2 weeks ago.  His body starts arching, and twisting and contorting into shapes that aren't normal for him or anyone for that matter!  He can't relax to go to sleep, and it's awful to watch.

We are working with our doctors to try and figure out what to do next.  Looks like we might be changing to a G-J Feeding tube.

It's emotional exhausting to see him in so much pain.  It's mentally exhausting to try and figure out what we need to know to make good decisions for him.  It's physically exhausting because he is hard to hold.

I just don't have a lot of energy right now....and blogging has taken a back burner.  I'll be back as soon as I feel up to it again!  Thanks for stopping by :)

The Coat Arrived....And It's Going Back!

Well, you guys know I love Giraffes...but as my friend Nicole said, "that's not a color in the crayon box."

ORANGE is our favorite color around here!  So, of course I chose a coat with orange in it!  Here it is:

Unfortunately, the 3T is HUGE!!!!!  So, we'll be sending it back.  It's probably a good thing because we've pulled Eli out of pre-school while the swine flu runs it's course....so he doesn't really need a coat now anyway.  Next year!

Anyway - the winners of my contest, for guessing the correct color, ORANGE, are:
My dear local friend from MOPS:  Nicole!  
And because my sister and I are so generous....we are giving a pair to the only other person who guessed right, my dear bloggy friend:  Katy, from Bird on the Street.

So, Girls - tell me YOUR favorite color and email me your address at:  3berks (at) fairpoint(dot) net and you'll get a fabulous pair of homemade earrings from my sister Shiela at From Shi's Garden.

Thanks for playing along!!!

Dressing Up

Halloween is around the corner!

Oh, how I loved Halloween as a kid. FREE CANDY! I was never too proud to beg! I loved Trick-Or-Treating. I lived in an apartment complex, so me and my neighbor friends would get together and hit all the apartments....then start down the road knocking on houses. I grew up in a VERY SMALL town in Eastern Oregon and it was still safe in the early 80's! Sometimes, if it was really cold, we'd pile in a couple cars and our moms would drive us around to hit some of the "good" neighborhoods.

No. Not the rich one's.

The "good" one's! The middle income people who spend a day's wages on chocolate bars to hand out to begging goblins! :) You KNOW what I mean, right? People in the rich neighborhoods gave out Dum-Dum suckers. Yuck! Why do they even make those things!?

Eli hasn't had a great experience with Halloween yet. Someday he'll party like the Great Pumpking gang!

His First Halloween he was 2 months old. I took him to visit my former co-workers and to show him off in his pumpkin pajamas:

His Second Halloween, I donned his Giraffe costume (gift from a friend) and we went to lunch at Olive Garden with my two friends and their kids....Elmo and a Kitty Cat.

His Third Halloween, I dressed him up like "Old MacDonald" ... who had a farm...and as we say around here .... "E-li, E-li, Oh!" I took him to our church party and he screamed for about 20 minutes. Guess he was over-stimulated. We left his friends Cookie Monster and Puppy behind to play in the jumpers....and we went home.

Last year, Eli's Fourth Halloween, he had Swim Therapy that day. So, we dressed him up in his Pirate costume and I got to show him around the Therapy Center. He wore his costume for about 30 minutes. That's why I won't pay more than about $5 for a costume!

This year was supposed to be his big "halloween experience" year! Carnival party at the Civic Center in our small town. A night out amongst his peers. Maybe we'd see kids from his preschool. He'd get to watch all the kids run around and play. I was excited.

Then a stupid Oinking Flu had to hit our world! Grrrrr!!!!

But thanks to some of my awesome friends, I have a fabulous costume planned for Eli and his Dad - but you'll have to stay tuned to find out what they might be! Only two more weeks to go!

Do You Think We Could Market This?

Doesn't EVERY dog need their very own

PLANTER as a PILLOW!!!???

Catching Up...and a Give-away!

Lonnie took Eli out to the car for preschool last Tuesday...he looked like such a big boy with his hoody on.

This is the first year we've used a jacket for him! He's always been such a hot kid, he's never needed one in his carseat! Preschool and recess have made it a new necessity.

So, I got to order him a really cute coat, hat and gloves on Old Navy.com. 

I can't wait to share them with you! 

Guess what color they have in them? 

Leave a comment with your guess, and IF you guess correctly - you'll be entered into a drawing for a beautiful pair of earrings made by my sister Shi. 

Check out her website, she sells earrings and Tamari's to raise money for Sabu Help.  My niece's husband started it to help his village back in Ghana West Africa.  It's a wonderful project I've been very happy to be supportive of!  I hope you take a look, too!

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I honestly can't remember if I've shown you guys Eli's new carseat cover!  Giraffe 'skin' :)

Anyway, here it is:

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Bought Eli a real towel for bath time.  Had to take pictures!

Why does the blurry picture always have to  be one of the best one's?

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It feels like Winter is setting in.  I guess we don't get Autumn this year!?

Buddy melted his way into my heart...he slept in the house last night!  He likes to lay by Eli :)  He gets as close to Eli's mat as he can without being ON it!  Good dog!

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I haven't posted about my great nephews in a while.  Here is my new favorite picture of my nephew Adam and his son Asher, age 4 months:

I haven't met him yet, but don't you just want to eat him up?

..........

And here is my nephew Matthew's son, Ashten, age 2:

He lives far away, and I don't even know if my nephew is still with his mommy.  Thank goodness for MySpace...I can go in once in a while and see how he's grown and steal a few pictures!  What a beauty - look at those blue eyes and toe head!  Just like his daddy!

..........

Next is by niece Montana's son, Anongba, age 1 1/2:

His Daddy is from Ghana West Africa, that I mentioned above!  I've only got to see him twice, and it's NOT enough!  I need some kisses from that baby!

..........

Here is Elisiah, age 10 and 3/4.  The 3/4's is important at that age right?  Or is that just a girl thing?  hee hee

I don't get to see him much either, but he is like an old soul.  You forget he's a kid when you talk to him!

..........

I'm so lucky to have such a beautiful family!  I just wish they didn't all live so far away!

Bathing - Leckey vs. Otter

Bathing has always been hard, but as Eli gets bigger and stronger it's getting worse.  He wants to roll over and drown himself, and I get a little freaked out at the idea!


We are now trying to decide if we should get a bath chair. I was thinking of the Otter Bath Seat - as it's less expensive, and seems to have enough straps to keep him safe:

But our DME supplier is recommending the Leckey Advance Bathing Seat:

I like the leg support....but it's over twice as much money.  And it seems bigger.

Of course, for last night's bath, I came up with a fabulous new way to prop his head up so it's out of the water, so even if he does get his face to the side it won't end up in water!  Now we might not need a chair for a while longer....we'll see how it goes for a few more baths.
 
We are thinking having this big chair to deal with in our bathtub might be a bit of a pain in the 'you know what'.
 
ANYONE HAVE ANY ADVICE?

Thoughts of a Mom Poem

In January I wrote a post using a poem I had found online. I wanted to share it again, because I now have many new blog readers who have special needs kids....and this needs to be read by each and every one of you! :) You'll love it!

CLICK HERE

I'd love to have you leave a comment about what you loved in the poem!

Fair-N-Dipity

First, I'd like to apologize to those of you who are Facebook friends and you read my blog, because you have to see the same pictures in both places. But, as I have different readers here, I like to share with them, too! Plus, my blog is my journal. I hope to get it printed in book form someday. (but everytime I try the website doesn't work for me! Anyone have success anywhere printing your blog in a book? Let me know!)

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Eli went to the fair when he was 1 month old and again when he was 13 months old. But, we haven't gone the last two years. With him doing so well these days, and loving to watch kids, we decided to give it a go this year. Eli did really well, even with all the crowds. Our valley doesn't have school on the Monday of our 10 day Fair so the kids can go....since so many used to skip and go anyway. It's "Franz Bread Day"...if you take a specially marked bag from Franz bread you get fair admission and a ride bracelet for only $25! It's a steal....and the fair is packed!

Here we are after arriving at the fair:

Eli rode the carousel for the first time:

...round and round we go....

We keep trying to figure out the best hat for Eli to wear in his stroller. So he got a new baseball cap. Spiderman, no less! :) I can't tell if he looks like a "gangsta" or a "hick". hahaha!!

There was a very friendly goat that let Eli pet him....and then he nibbled on Eli's fingers. It was so cute!

And the splurge of the day was getting a caricature drawn:

The artist was great!

...and here is the finished product! I love it!

We took Eli's caregiver, Tina, with us...but then Lon and I ended up not riding any rides or anything.

Oh, well. Maybe next year!

Final tally:

Admission Price: $36.00 for 3 adults

Parking: $12.00 for 2 cars

Fair Food: $14.75

($5 Elephant Ear, $6 Curly Fries, $3 Pepsi, $.75 Taffy)

License plate with Eli's name on it: $3.99

Spiderman Hat: $8.00

Caricature: $20.00

Taking Eli to be a part of this huge community event: PRICELESS!

Just To See You Smile

"Just to see you smile

I'd do anything

That you wanted me to

When all is said and done

I'd never count the cost

It's worth all that's lost

Just to see you smile"

~Tim McGraw

These were taken Tuesday taking Eli to preschool....and him swinging during Talk and Tumble OT time. :)

The World Revolves Around Me

Eli started preschool yesterday.  It's his second year, but  he didn't really get to attend much last year.  He started getting sick in November, and wasn't well again until we got his nutrition/digestion issues figured out in March!  We couldn't afford for him to get a cold or flu, and lose weight, so we kept him out of school.

But this year, I was a little excited for him to start.  He weighs 3.5 pounds MORE than he did last year!  He's made so much progress this summer...I hope he enjoys some time around other kids.

Here he is, as we get ready to leave home:

...and here we are at school in the parking lot...

His shirt says, "The World Revolves Around Me". 

Our world truly does! :)

Here he is in his class.  We were 5 minutes late, and circle time was over.  Dang it.

Then it was time for recess...

and there are not paths for wheelchairs, and not ONE SINGLE piece of equipment for special needs kids to play with, on, or around!

Seriously!?

He had fun listening to his music, though....

And so Mama Bear goes into her "something's got to be done about this!" mode!

In the preschool classes, there are three boys with wheels.  They need a place to roll.

Things to touch, hear, and see.  So, I'm working on it!  I'm going to start fundraising and get some equipment for their playground.  The principal is on board, I now just have to go through all the steps.

And raise money!

We will do it!  I know we can.  I have several parents ready to help me!

Back in the class, it was circle time.  Eli still had his music on.  He's laughing.  Again.  :)

Time to head home.  It was a beautiful sunny day!

Eli was the only kid in the class with new clothes and shoes.  Did I over-do it for my 4 year old?

hahahahahaha!

Don't these just make you want a pair?  Rubik's Cube Converse!  Yeah, baby!

Winding Down

I'm not quite ready for summer to be over....but it's definitely winding down, isn't it?
It gets dark so early now.
Pre-school starts tomorrow.
Eli's going further than ever each day, outside, in his Bronco.
He's just been busy playing.....

.....with paper.....


.....and beans.....



.....in his stander.....





How about you? How are you winding down your summer?

And Then There Were Ten

The day I posted about losing Zeke, I saw that our cat Little Girl (I did NOT name her!) had a massive eye infection....again!  It's been chronic for years.  It never really goes away...I'd medicate, and it would go away for a while.  But it always came back.  She always had nose issues.  A funky wheeze with each meow.  Snotty off and on.  (Yeah - she was quite a bag of tricks!)

I took her to the vet on Tuesday, and found out her mouth was horribly infected, too.  She was a cat with chronic "immuno-defiency" issues.  The medication was going to be a crazy regimen and schedule in hopes it would help...then more meds to follow and a dental cleaning.  She was old.  And chronic.  I decided it was time to say goodbye to her.  It was a hard decision, but I feel it was the best for her.

She wasn't the most fortunate looking cat....so I ended up calling her "Scrunge".

She was a sweetie.  Never got into trouble.  Talked a lot.  Loved to sleep.

REALLY loved to sleep. And even when her favorite spot (at our old house) got knocked over by dogs or wind...she stayed the course:

Isn't that a hoot?

So, our cat population is now down to 10.  The lowest we've ever had as a married couple...

our hearts are a little sore right now.

Farewell Zeke

Our cat Zeke, you know the one that was Cuckoo for Canteloupe?, he finally had to give in to his illness.

Two days before Eli's big birthday party - we could tell it was time.  He quit eating.  Then he started having labored breathing.  So, the morning of Eli's party (8/22/09), Lonnie took him in to have him euthenized.  We couldn't watch him suffer any longer. 

Lonnie had Zeke for about 12 years.  We had a wonderful 7 weeks with him while he was sick.  We wouldn't trade that for anything!

We buried our beloved pet the morning of Eli's party.  Our graveyard in our backyard if filling too quickly.  We've had four pets die in the last year.  (We've had 4 others run away since we moved here)  It's been hard for us to deal with.  We love our pets...and wish we knew what happened to them, at the very least!

We are now down to only 11 cats.  That's a big deal to us!  We haven't had that low of a census since we got married!  (Lon had 7 and I had 4)  But, since the dog count is now UP due to my mom's dogs coming to live with us...I guess it all works out, doesn't it?