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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, April 30, 2009

Calling all Botanists

This is my rhubarb plant. With some strange flowering thing growing out of the center. I have seen and eaten rhubarb most of my life, I have never ever seen it flower... So is there any Botanists out there to help me with this?

Looks like Broccoli

Will this be another?
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Wednesday, April 29, 2009

Yummy/Oopsie



Dang!

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Gator Turned TWO!!!

His official B-day is the 21st. But, he won't care that we celebrated a week later. We went to Chucky Cheese. He loves it there. My cute little sisters built his gator cake. It was so dang darling. Thanks guys... I forgot to get any pics with Marc and Lisa... Happy Birthday Gator. You are getting so big and we are so happy that you have fought so hard to be with us.

P.S. I know he looks abused. The ped says he is just a normal little boy with bonks on top of bonks... Poor little man.
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Friday, April 24, 2009

It's all in the way you say it...

Mom- It has been a really big day!
Ry- I know we had lots of fun!
Mom- Gee I am just pooped.
Ry- What, you pooped? EWWWW
Mom-No- I am pooped!
Ry- you mean poop, like poo poo
mom-No, like I am really tired, I am so pooped out!
Ry-(silly grin)(walking away) hahahha pooped!

Ry- what is this place?(referring to the Mayan Restraunt)
Ohma- It's kinda like a jungle
Ry- Oh, I love jungles, I have been on a jungle gym before.

Ry- I turned in my conference packet to the Bishop and he gave me this huge candy bar
Mom-wow, you are so lucky; High-five!
Ry-(slaps mom's hand) I know I am, I am the best, I am Like Amazing!!!! Squeals!

Thursday, April 23, 2009

Sunny Days

In action at the park..



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Healing Field

Each flag represents a lost life.

It's not fair.

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Color me!


I am sure it will spill

Some very serious coloring going on..

One patient little man.
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Wednesday, April 22, 2009

So sassy

Have you seen that commercial when the guy says "Who's good look'in? THIS GUY!!" well this is my little sister Preslee Jayne. She should be responding to that as "THIS GAL". She asked me to shoot her senior pictures... It was very fun and a little crazy all mixed up into one. I am so proud of her. She has really accomplished a ton. Overcoming epileptic related seizes, just graduated from Aesthetics School (Last Tues) as a Master, going to graduate from OHS and Seminary in May... and being so sassy too. What a gal.. We love you so much belbo/puff!!!! Congrats. Ry acted as my assistant and held my reflector which ended up not EVER being in the right spot. O-well you can't ask too much from a four year old. Thanks Amanda for shooting some seniors by the water tower spot so I could use it too..

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Monday, April 13, 2009

N-style ID

I have posted about Gators cute ID bracelet.. Well, he lost his scull and crossbones bracelet at Kiddie Kandids when we did the kid's recent shoot. So I needed to order another one. This time they didn't have the scull and crossbones in the same style so I ordered a different one that glowed in the dark. (cool I know) The little parts rubbed off so I emailed the company and I have to tell you... They are so WONDERFUL... They gave me the old style, I didn't even have to pay for it.. They were super fast. They even emailed me the same day... It has been a complete joy to work with this company... So, If you need a med-ID I HIGHLY recommend N-Style ID. They even have a few new products I am eyeing. In the mean time Gator is sporting the catch a wave bracelet and I am going to take a picture to post as soon as he wakes from his nap...

If you want the link to this company again... just go to the right hand side...
OOOHHHH SOOOO AFFORDABLE

Saturday, April 11, 2009

Are you getting ready?

Ever since I was a little girl I have loved being in the garden. Gardens mean LIFE. Gardens mean that I spend time outside in the sunshine, rain, dirt, and plants. My grandparents have always had a beautiful garden full of the yummiest things. Corn on the cob, fresh raspberries, green apples with salt, rhubarb, beans to snap and pickle into dilly-beans. Also even though I moved a bunch as a child (around 21 times) We have almost always had a garden. But, they are soooo time consuming. I got started today. The plot we have for my garden is rather large and last year I planted way too much. It was a shorter summer (meaning it frosted late)and many of my vine plants did not survive. This year I plan on minimizing and making it quality over quantity. I might even leave half of the garden empty to just maintain. I added two huge garbage cans full of sawdust, it still wasn't enough.

Also have you started your spring cleaning???? I made my list yesterday and I am not sure if I will be done until next spring... One day at a time right! Good luck to you if you have started or have a huge list like me...

Friday, April 10, 2009

The things you learn


So I wanted to keep practicing my photo stuff... So I went to walmart and purchased some of their cheap flat sheets. I think they are around $3.50 each. This makes a simple background. I have even thought of using paint on one... I haven't gotten that far yet. I threw them up using some mini clamps. I noticed later that I do, in fact, need to press them. Learning curve I guess. Or maybe I will chuck them in the dryer for a few minutes.

On another note. I am always amazed by the complexity, that is Gator. A few days ago he had some more sleeping issues... I decided to take him in for a ear check at the pediatrician. He had yet another double ear infection. Now this is where it gets tricky. We discussed possible treatments. Every time he goes on an antibiotic he gets well from the ear infection but it turns into C-diff. We hate that stuff.. So after many trial and error we found that Azithromycin does not create a c-diff flare up.... So I took the script and headed over to our favorite Pharmacy Jolly's on 89th south and Redwood. They are awesome because they can compound, which most can't and we always had to go to PCMC's RX for refills. Plus they are about three doors down from our Ped. We were waiting when Tad (yes I know his first name) Came up to chat about this particular med. It seems that when we combine Zith and Dig it magnifies the effect of Dig in the body creating an overdose effect. So it took forever to call cardiology to find out how to remedy the situation without causing c-diff or overdosing my baby. The answer= We super dose for three days and really watch him. Three days was all it took for my little guy to feel much better. WHEW!
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Wednesday, April 8, 2009

Living For Eden Concert

Monday night the hubs had meetings... So I decided to take the kids to the benefit concert for Paul Cardall; alone... Can you tell we had an absolute blast... Paul is a CHD survivor of 36 years. He is truly one of our hero's as he proves that one can live and defy the odds. We had a great time celebrating life and hope. Thanks to some ring pops from the IHH table we really enjoyed the concert.

My kids couldn't help but jump off my lap and dance. We loved the music. Every bit. I have been listening to these guys forever so it was wonderful to have them all in one spot. I pulled out each of the albums and I have multiple from most of the performers, now I just need to add Paul. I was surprised to hear David Tolk. One of my very faves. We ended up leaving early (little kids means earlier bed times) I am sure the ladies next to us were happy to see us go. It may have even been Mrs. Bestor, I wasn't sure, she was my English teacher at OHS.

This is the IHH table. I wanted to get a picture with Carolyn, dang it. I met Lynette, Paul's wonderful wife. What an amazing person. She is as nice and sweet as Paul says... He is a lucky guy. I was so happy to run into so many from IHH.. Aimee, Mike, Shauntelle, Jessica and of course the Quinney gang and Melissa who had extra tickets so that we could go...

Closer on the poster...







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Tuesday, April 7, 2009

What a day

When Gator won the diaper derby, one of the many cool prizes was a gift certificate to Kiddie Kandids. I usually like this place because it is special for taking kids' pictures... We must have just come on a rough day because our appointment was delayed an hour and a half. Then our session felt rushed. Then it took another 45 minutes to be able to view our shots.... EWWWWW!!!! needless to say, I am taking TAMN's advice and just doing my own armature photos from here on out. But, what do you expect for $free.99 We won't complain.

Hiding from the camera lady

I made Ry's pettiskirt with help from my momma. A few bad-ish words under my breath later we have a skirt for a fraction of the 85.00$ it cost to buy one.... Jeff looked at Ry and even though she is beautiful he said he thought her hair looked like a polygamist... (humph!)

Cuteness all the way down to his argyle socks.
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Monday, April 6, 2009

Three little monkeys swinging in the tree

This is a great place to store your children for a few.
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Fun fun fun


Do you know how fun Classic Skating is????? On Friday I took a gang of kids and Missy met up with us with her own gang and we played so hard. They have skating, scooter riding, truck pushing, bouncing, jungle gym, blackout, water slides in the summer FUN!!!!! Oh, we need to go back with more time and some snacks.... Thanks Missy for bringing the girls they are darling. Sorry I never got a great single of miss Ellie-bells. Ry had the time of her life. I also recommend bringing some big boys to help your little ones... They were awesome!!!!Thanks dudes...
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Can you

This is our kitchen, I loved it before.....

With this great L-shaped bar and tons of storage...

But.... I love even more with it's new recycled look....We reused the same counter tops and cabinets and just modified the space for a better "flow".

Since the hubs does cabinets for a living our only costs were the tile for the new back splash that I am proud to say, I helped with. And the supplies for the island base.
I love the fresh/open feel to my kitchen even better than before. I love having a hubs with skills. They may not be computer hacking skills or num-chuck(sp?) skills but they are way better.

The best part about all of this... we have only been in this house that WE built, for almost five years and have redone almost every room on the main floor... Just two more to go.
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Thursday, April 2, 2009

Everyone needs a little time.

Whew what a crazy bit of info... I got the emails and comments regarding my last last post so I will contact you. Thank you so much.