Monday, November 23, 2009

"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:

Thursday, November 19, 2009

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 :)

Wednesday, November 11, 2009

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!


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.)
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!

Sunday, November 8, 2009

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!

Saturday, November 7, 2009

Costa Rica Here She Comes!

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

Her proud Auntie!