Friday, May 20, 2011

Powerful beyond measure

If there is nothing else you look at on the internet today besides one blog entry, do not let it be this one. Venture over to my truly amazing friend Ally's blog, Trashy Decor, and read todays message of inspiration.

Powerful Beyond Measure

Be inspired on this spring weekend of renewal and hope.

Tuesday, May 17, 2011

Survival

One year ago today, Paul called out of work because he felt "off", I was headed to the Phoenix Ronald McDonald House with paper towels and toilet paper and it was another manic Monday of waiting.

Until 1147am on May 17, 2010, the same time this is entry is posting, I entered a blog entry that changed our world. Gabriella got her heart call, and we were on our way to California for a life saving 4.5 month stay.

Today, Gabriella is stronger, bigger, smarter, older and happier because of her sparkly new heart. That heart sparkles not only because of the life and health in it and the spirit of Abbie that resides inside, but because of the external love and support all of our family, friends and even strangers gave to us.

And do you know what this also means??? I can say we successfully got through, with minimal effort, the "critical first year". In transplant living, this is monumental. Statistics show nerve wracking numbers, but statistics do not apply to us. God does not operate by statistics, and we remain faithful to His plan. We give all control up to Him and praise Him for his miracles.


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Sunday, May 15, 2011

You live on, Princess

May 15, 2010, heaven gained an angel. Precious Abbie gained her wings too soon, but not without leaving an unforgettable footprint on our lives. Her heart continues to beat on in Gabriella, and we will never forget.



Sunday, May 8, 2011

Proud to be their Mommy

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I tucked her into bed tonight

(And adjusted her pillow and blankie)

It's been a long exhausting day

(And she sure has been cranky)
She threw every toy from her toy box
And she tossed all her lunch on the floor
She begged me to go out to play
(She just wouldn't let go of the door)
Most people cannot comprehend
The things she has been through

They tell me... "I just can't imagine..."

"How you do all the things that you do."

I sigh... just because they don't realize

How could they ever know?

Just what a precious gift it is

To watch my child grow.
I still remember clearly
Our days in ICU
Hoping, praying, wondering
What were you going through?
Stroking your hand...feeling helpless
Whispering words in your ear
"It's alright my baby"
"Mommy is right here".
Helpless...scared...bewildered
Wanting to just see you smile
Thinking..."I"m not strong enough"
To make it through this trial.
Knowing that... not all children
Survive these surgeries
Day by day...with patience
Constantly praying...for peace.
And so...that is the "secret"
To doing the things...I must do
There is no perfect...inner strength
I guess God brought us through.
And so...when I see... footprints
All over my freshly mopped floor
Or gooey dried banana's
Smudged on the living room door
I wipe it off...with just a smile
Just praying for more to appear
These are my reminders
I'm blessed to have her here.
I tucked her into bed tonight
And as I walked away
I looked up for a moment...and said

"Thank you...for "today".

~Stephanie Husted

Friday, May 6, 2011

Nearing one year

 A couple weeks ago we went back to Loma Linda for a clinic appointment with our transplant team since we are nearing 1 year post transplant. Gabriella's ECHO function was great and her growth is fantastic! They decided to change all of her immuno-suppressants to new ones. For all those transplant people out there, she was on Neoral Cyclosporine and Cellcept, and now on Prograf and Rapamune. Her clinic doctor said that he is finding this medication combination, introduced later post-transplant, yields better long term results in terms of her coronary artery health, mouth/gum issues and kidney function. They also lowered her target levels, which means they have brought back her immune system to the highest it will ever come back. I feel I can safely say without jinxing myself, that she successfully made it one whole year with a suppressed immune system and no major illnesses! Makes me feel like all of those times we either stayed back, were "overly" cautious or went out of our way to keep her away from germs was worth it! And even then, we still let her enjoy so many things.... finding a healthy balance. Of course, it's still not 100% clear now. She still has a suppressed immune system for the rest of her life, but we are out of the harshest part of it and I couldn't be happier!!

We took the opportunity while going there to enjoy the beach, naturally. My kids are such beach babies!!!


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And we also got to spend Easter with our friends at Restoration Covenant in Redlands, CA!



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And have lunch with our previous Loma Linda Ronald McDonald House neighbor and fellow heart recipient, Logan!


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We are returning in June to Loma Linda for quite a few appointments and tests. Paul, PJ and I all had our genetic testing done and submitted so when Gabriella and I return to Loma Linda, we will meet with the geneticist and go over the results in detail with our geneticist. Gabriella will also have a clinic appointment with our transplant team, a kidney function test, and her sedated biopsy to test for rejection. It will be an overwhelming few days of appointments, information and testing results but we are faithful in the results.

Life continues to throw us curveballs of different kinds, but we continue to move forward. Remembering how blessed we are is never forgotten, no matter how clouded the earthly problems or human judgement tries to make it. 

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