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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, March 26, 2009

Shoe Love

My shoes... He loves my shoes. He likes walking on the hardwood floor with these shoes because they tap and clump LOUD!!!! He trys to wear my flip flops too. Not such a good walker with those on. Yesterday he had his last synigis.... WHOOOOO HOOOOO.... The tricky part is he is loosing weight. Not enough to alarm the ped but enough for me to be mad we are still going to be stuck in 12-18 month pants and I bought his Easter outfit in a 24 months.... Crud, I will just have to take it back.

p.s. don't ya think his A-gator shirt is cute.. I love finding Gator shirts for this boy. What a find $3.50 at walmart. Ya can't beat that.
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Saturday, March 21, 2009

Five little monkeys

We have had some nice weather, and lots of friends to enjoy it with. I was watching these three little girlies so we went to the park. It was so fun for them to play. I was a little nervous to watch two almost two year olds and three four-ish year olds.... I just kept counting all of them.... If I got to five things were fine. Poor Gator was way out numbered... I am almost sure I only need two kids right now. It is hard to keep track of all of them. Lucky for me the big girlies played well and the two little ones snuggled me after we got home.
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OCD Overboard

I feel I must throw my OCD overboard, grab my camera, and blame one person. MYSELF! I left it low, I know better and he doesn't. That bright red powder that stains like crazy is a water bottle mix-in. A cranberry flavored one to be exact. I counted to ten, clenched my teeth, and looked at his little smile on that one. Good thing, it is on my black leather (wipe able) couch not on my carpet. Bad thing, it got on his "Ache-y Brake-y Heart" jammies. Good thing, Pure Solutions brought it all out of them. Bad thing, it stained his hands, feet, and mouth a lovely shade of red for a couple of days. Good thing, He never looked pinker.
He is totally in that mess making stage. He loves to dump out everything, and anything. Or tear it to tiny shreds. Like my helpless magazine. The good thing, it was just an old magazine. The bad thing, it was a mess to clean up. The good thing, I needed to get rid of it anyway.
Stay tuned for more messes... You should see how nicely the dirt from my potted plants look all over the floor an carpet. (if anyone wants to rescue a few of them from utter destruction. I need to find some of them a good home away from a toddler)
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Monday, March 16, 2009

More Irish-ness

This little prayer is called

A wish for a Friend

Wishing you a rainbow
for sunlight after showers-
Miles and miles of Irish smiles
For golden happy hours-
Shamrocks at your doorway
For luck and laughter too,
And a host of friends that never ends
Each day your whole life though!

And this one is called:

Remember Joy-

Don't grieve for me, for now I'm free!
I follow the plan God laid for me.
I saw his face, I heard His call,
I took His hand and left it all......
I could not stay another day,
To love , to laugh, to work or play;
Tasks left undone must stay that way.
And if my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss...
Ah yes, these things I, too, shall miss.
My life's been full, I've savoured much:
Good times, good friends, a loved-one's touch.
Perhaps my time seemed all too brief-
Don't shorten yours with undue grief.
Be not burdened with tears or sorrow,
Enjoy the sunshine of the morrow.

(For Mercydez a little heart friend who passed her test of this life)

Friday, March 13, 2009

pictures to post

bootie man

The tree

Tractor

Engine...WOW!
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St Patty's

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Thursday, March 12, 2009

What THE VIRUS!!!!

I our computer has been battling a nasty virus....It is lucky that our neighbor,bishop, and friend, has some mad computer doctor skills because he came over with his little USB full of meds and fixed it all up.

I wasn't able to post all the info about Paul, I tried to steal it off of someone elses blog(thanks Heidi) and post it to mine but it didn't work so good so I will just give you the link to his amazing bloggity. http://mytricuspidatresia.blogspot.com or you can check out the event page at livingforeden.com

Sadly my pictures from Richfield didn't show up either so I will be posting them above. You already know that because you see them..

I once posted about all the incredible holidays and how I wanted to participate and learn about each. I would try my hardest to make each holiday important. I have been very interested about St Patricks and it has been fun to learn about the history. St. Patricks is such an under appreciated holiday. I have really loved reading the Irish prayers. Here is my favorite.

May God give you......

For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
and a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
and an answer for each prayer.
-An Irish Prayer-

The other holiday (if you will) that I am learning about is Lent. So it is out there for all the world to know I am choosing sweets as the vice I am letting go. It has been a hard couple of days with out my sweets, last night I even gave in, my will power is weak. Today I started over. It has been easier today. I am sure that by the time Easter gets here I won't even want them anymore. Maybe I will continue to forgo them all together.

I know you are all waiting to hear how my kids are. Ry got over her bug really fast. I guess it was just something in the air. Mr. Gator was really weird for a couple of days. I called his pediatrician. Can I tell you again how highly we think of her. She went through many things and finally thought maybe it was a reaction to the Digoxin. He was having all of the same side effects... WHEW! something to hang my hat on. She also recommended placing a call to cardiology to see if they had anything else the wanted to add for fear it could be (HF) I won't even type it because it is such a nasty couple of words. I waited for cards to call back but they are so busy. I started Gator on a pro biotic, for the fast poopies and by the next morning he was a whole new kid. His tummy must just be sensitive to some drugs. Then cards called back and said that we could take him off for a week and see if his output slowed down. I was so happy to say that I had found something that seemed to have worked... he is not all the way back to eating great, but getting better at every meal. He seems to have more energy- not surprised- more fuel in the tank, means more play. So it seems we have dodged another bullet. WHEW! Thanks for always thinking of us... And checking in...

Wednesday, March 11, 2009

Please support Paul Cardall at this wonderful benefit concert put on by some of his friends who care (Kurt Bestor, Peter Breinholt, and Ryan Shupe and the Rubberband, along with other talented artists). I saw some of these guys in concert while at BYU and they were great. This is very dear to me since it is helping a wonderful family who has inspired many heart families including mine. This would be a GREAT FHE activity for students and families. The “Living for Eden Concert,” so named in honor of Cardall’s 3-year-old daughter, will get underway at 7:30 p.m on Monday, April 6 at Cottonwood High. A silent auction will precede the concert beginning at 6:30 p.m.“ Cardall, who was born 35 years ago with a severe congenital heart defect, has been on the waiting list for a heart transplant since last August. He has been limited in his ability to support his family and to meet escalating medical expenses during his prolonged illness. Seeing their friend’s condition, Cardall’s colleagues decided to do what they do best – make music and use their talents to benefit Paul, his wife Lynnette and their daughter Eden.“Each of us wanted to do something to benefit Paul,” said Peter Breinholt. “Coming together as we are is our way of paying tribute to, as well as helping, one of our own. A hundred percent of the proceeds will go to help Paul with his mounting expenses.

Monday, March 9, 2009

A little trip!

cutie little bootie man.

Gator is fascinated with SHRUCKS!!! (Trucks). My grandpa is rebuilding a truck (1932,red,Chevy? I am not sure on any of those details except the that is will be red) and Gator was so fascinated by all the parts. He instantly knew this was a truck even though it is only the engine. What a pretty engine it is too. Gator and grandpa got along real well since they both had a love for shrucks and tractors. Gator needed a little fix every now and then so he would go over to the window to the carport and have someone hold him up to see grandpa's new blue truck. Funny little man.

This is grandpa's tractor. We loved it. But when Grandpa fired it up for a test run, the engine made such noise that neither of the kids would get near it.

It snowed too. We woke up on Saturday morning to all this snow. Jenny will know what tree this is. The best climbing tree in grandma and grandpa Groesbecks whole yard. The apricot tree. It always has a zillion apricots on it and I bet by the time my grandma has canned a whole cellar full and grandpa has picked up enough off the ground to match those in the cellar. Both wish the darn thing would have frozen. (they may have gotten their wish this year)

I am a little worried about both my kids. Ry has some cough that sounds a little tight and hard to clear. Gator man hasn't had an appetite for a couple of days. He has had fast poopies and he seems cyanotic and won't sleep well. I made a call in to the ped. But I just feel like something just isn't right. He hasn't had a temp, or a cough, he seems fine in every other way... My mommy alert is sounding...

Monday, March 2, 2009

Pictures of the Safe Kids Fair


Crazy face painting, sitting in the fire truck, getting really close to the police car, meeting princess Ariel, and checking out the spoils from the race....
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Sunday, March 1, 2009

Baby Eden


These balloons are for Eden on her birthday. We were sorry we couldn't live closer to your family and let them go with them. We know she got them in Heaven just the same. You are not forgotten Eden. You will be in our "Hearts" always...Happy First Birthday.
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