slide show

Saturday, March 30, 2013

The practice egg hunt

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And as hard as we tried to get Ivy to join in on the hunt...



             She was way to interested in peeling the    eggs!! And wow is she good at it.  



        She peeled and peeled, for over an hour!













Wishing you and yours the most meaningful Easter! May it be filled with Joy and Gratitude. For through His death, burial, and resurrection, Jesus paid the penalty for sin. He has purchased for all who believe in Him, ETERNAL LIFE in Christ Jesus. 
What a beautiful gift!



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Thursday, March 28, 2013

One year ago

Pin It An entire year! Wow!!! 
Be sure to click the link below.
Click here to see where we were a year ago

And here we are today!

Lexi coloring eggs at home instead of at the Ronald McDonald house!
A

 Ivy Joy seeing life through new eyes! Doing life at home rather than in a hospital!


2 girls~2 sisters, HOME!


Remembering the gift of Gods selfless love for us today!  Without Him, we are hopeless!   


But with Him, there is hope! 

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Tuesday, March 26, 2013

Blessed!!

Pin It I love these girls with all of my heart, all of my soul, all of myself!!! 
Lexi, everyone needs a sister like you! Thank you for giving our home sunshine 24/7. So proud to be your mommy!!





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Saturday, March 23, 2013

Jeremiah 29:11

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For I know the plans I have for you "declares the Lord," plans to prosper you and not harm you, plans to give you hope and a future. 




Love bug thought this was the pose of the day?

Whatever? She's a doll, belly showing or not!




We had our appointment with the cardiologist on 

Thursday as you know, and we got the results 

from the blood work done on Monday.

The results of her electrolytes were delightful! For 

the first time ever Ivy's electrolytes (potassium, 

sodium and Magnesium) were within NORMAL 

(or almost normal) range!!! This is very huge for a 

child on so many diuretics for her heart. Blessed!


But the biggest part of the blood test was the BNP.

BNP is a substance secreted from the ventricles or 

lower chambers of the heart in response to changes 

in pressure that occur when heart failure develops 

or worsens. The level of BNP in the blood 

increases when heart failure symptoms worsen and 

decreases when the heart failure condition is 

stable. The BNP level in a person with heart 

failure, even someone whose condition is stable, is 

higher than a person with normal heart function.

A BNP level below 100 pg/ml indicates no heart 

failure.

100-300 pg/ml suggests heart failure is present.

100 to 300 pg/ml indicates mild heart failure.

Over 300 pg/ml would indicate moderate heart 

failure.

600 pg/ml would indicate severe heart failure.




Ivy's BNP left us all speechless.

3800 pg/ml

this in not a typo


What on earth? Who on earth could be there and 

look like this! Her and that big old donut! Our 

fighter! Mini sized miracle. Determined and 

mighty!


Only a super star!


Only God! He knows! He is the only one who 

knows. We are just waiting on Him. We trust Him, 

we love Him, we believe He is in control and He 

has a plan better than we could ever imagine. He 

clearly is protecting our baby girl. She is nothing 

short of unbelievable and it is all because of one 

miracle after the other. Yes, lots of pain and 

suffering, yes, a few big scars, but all this and look 

at her! She is a happy, funny, loveable, adorable 

toddler living and loving life! 

Her echo shows some moderate to severe tricuspid 

valve regurgitation. This could still be from those 

high pressures in her lungs. She was in the 90's for 

pulmonary hypertension 3 weeks ago and she is 

down to the 70's today. So still severe, but 

trending down and we like that a whole lot! We 

have consulted with our Boston team. They are 

blown away too. Her repairs are working well. Her 

heart may just not know what to do with all of this 

newness yet? But honestly, we really don't know at 

this point. An MRI would help... but she has a pacemaker so we can NOT do an MRI. They do 

not want to cath her unless it is absolutely 

necessary and right now they don't even know 

what they would be looking for so there is no plan 

to order that just yet. The less invasive we can be 

while she heals, the better off she will be. She has 

been through so much already. We will continue 

to do echo's and check BNP regularly.

My hope is that everything will trend down in 

Gods timing. I believe in that. It may seem crazy 

but my heart is happy. We have been given more 

than our hearts could ever have fathomed and I 

know God's not done! My life is so RICH! And I 

would never want another. This road we are 

traveling is different than the road we had 

envisioned. But this road is so beautiful and has 

left us so completely full! 




And we press on! 

With Joy!







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Thursday, March 21, 2013

Ivy's healing, mommy's Hope!

Pin It It's time for an update on the happenings with Ivy's healing and HOPE! Some sweet little funnies from the mouths of babes and a few photos.
When I think about the fact that next Thursday marks the one year anniversary of Ivy's first open heart surgery, and then I look at all she endured the rest of her year home... WOW! When you are living it, you just take it day by day and you really don't see feel the magnitude of the big picture because you are still living it.
Now, being home for 6 weeks, and looking back... Thank you loving Jesus for carrying us, for your mercy and your grace, for blessing us, and for granting us this precious time!!!! 
Last Sunday, it had been a full 2 weeks since Ivy had spent more than 5 minutes at a time walking and being active! Oh she had been super happy, funny, giggly, playful, eating as always, but she just would not have any part of any physical activity. We do not push this little tyke! We know how much she wants to be active, how much she wants to be on the move, and we also know how much she knows her body and how good she is at preserving her strength. So we made due and figured it was just the effects of the hypertension. Then Sunday evening while at Target she decided she wanted to walk. A friend of ours was also at Target and was running around with the girls in the produce section playing hide and seek (yep, in Target) and she just squealed with delight. I noticed her lips got blue around the corners right away but I reminded myself how good this girl is at listening to her body and I let her enjoy the moment. She continued to walk and walk and enjoy being active through Tuesday! Today (Wednesday) she slowed down quite a bit but was still active enough to walk around the house and so forth for very short periods of time. She is not walking without help. She still uses the furniture, the walls, the strollers and shopping carts, our hands, whatever is in her path. She is very coordinated, and ever so dainty! She has a beautiful gait, strong, straight, steady steps, but still lacks lots of confidence. She will get there :)



Wednesday morning we see our cardiologist for Ivy's Echo and to hear the results of her recent blood work. The purpose of the blood work is to check her electrolytes, potassium, sodium and so forth as well as to see if the pulmonary hypertension has caused her to be having right side heart failure. We covet your prayers for our mighty girl!



 It is summer here! We have packed up everything with sleeves and we are trying to suck up as much outdoor, bike riding, swinging at the park time as possible because we know we will miss it so much in another month when the sun never stops shining here! I read today that Az was expected to have a very hot spring.... that means what for summer? My girls already have tan lines! 



                                  Funnies :0)
Lexi ~ Jesus is doing the best he can to fix my baby sisters heart, and he's not done yet, but he's still doing the best he can!

Ivy is obsessed with peeling oranges. She is so good at it and she is fast! So we let her peel them and we put them in baggies for the kids lunches. She had peeled 5 the other night so I said no more..... She threw a fit that would put a healthy toddler to shame lol. She was MAD! When she finished (it was very short) she crawled up on my lap and kissed me. Then she said, You forgive me mommy? I kid you not, this child just continues to blow my mind. She knows forgiveness. Oh baby, there is nothing to forgive! You did something healthy! You got mad and then you moved on! 

Lexi tells me that she was bald like her daddy when she was a baby in China. And that is how we knew she was our baby! She says we saw the bald baby and said, yep... she looks just like her daddy!!! 

Ivy and Lexi at bed time~ 
Lexi: I love you Ivy, good night. 
Ivy: Good night Lexi. I love you. You ok Lexi? 
Lexi: Yes Ivy, I'm ok. 
Ivy: You ok Lexi? 
Lexi: Yes Ivy, stop asking. 
Ivy: You ok? You ok Lexi? 
Lexi: Yes Ivy, I don't want you to keep saying that. 
Ivy: Ok Lexi. Sorry... You ok? You ok Lexi. You ok? You ok?
Lexi: Ivy! Stop! Lexi starts to cry. 
I come in and tell Ivy not to talk any more. Ivy says sorry mommy. Sorry Lexi. 
Everyone feels better so I walk out. 
Ivy: You ok? You ok Lexi? You ok....... 
Poor Lexi wants to go to sleep, and Ivy knows it!!!! She also knows that Lexi is just fine. 
STINKER!!!!!!!!
Nights like this make me think it might be time to give them their own rooms! Pin It

Friday, March 15, 2013

Saying goodbye to the happiest place on earth!

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               Even Brady got in on the action!





Minnie and Goofy needed some goodbye kisses. Ivy even got out of her chair for tonights goodbye. 

 Ivy calls both Chip and Dale, Chickendale! And she doesn't care for those chicken stealing critters. (Even though they have never shown any interest in her chicken)




But she adores Minnie! Appropriately so!


Goodbye Disneyland! It's been a dream come true for all of us! Lexi told me that since she likes Disney so much, she knows we will take her back there again soon! She is such a confidant girl lol!


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Last Day at Disneyland

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Ivy's favorite ride today was Alice in wonderland. Lexi's favorite today was the roller coaster and Toads wild ride! Ivy sobbed, more rides! More rides! after every ride today! She is feeling more herself!
















Today was our last day at the park!

We had lots of fun in the morning, headed back to the hotel for Ivy's nap, and then back to the park for the parade that night.



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Random

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Happy Days!


And Crazy Hair!


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