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Saturday, September 21, 2013

We love because HE loved us first

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Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. 1 Corinthians 13:4-8

And above all these put on love, which binds everything together in perfect harmony.   Colossians 3:14


With all humility and gentleness, with patience, bearing with one               another in love, Ephesians 4:2           

                            We love because he first loved us. 1 John 4:19 Pin It

Monday, September 16, 2013

Never a dull moment

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We took a trip to the mountains this weekend, Lexi's favorite place to go for a staycation! Family time at its best!!! She was in heaven. 

But things got a little scary Sunday morning when we checked ourselves in to the ER up there after a bit of a scare with Ivy. It was obvious that the elevation had an effect on our girl right away. She was not her crazy, funny, active self. She wasn't walking much and by Saturday early evening she was wanting to sleep  which has certainly not been the new norm for her! She went to bed early and slept until 7 the next morning. We went out for a short walk and she fell asleep in the stroller, sleeping until I woke her at about 10am. She could not keep her eyes open and she fell back to sleep. Each time she slept it was either a very deep sleep or an odd sleep where she had her eyes closed but knew everything that was going on around her. She was even eating her spicy cheeze-it's laying down with her eyes closed. She asked to go potty so I picked her up and took her and then as she sat on my lap she rolled her eyes back in her head a little and did not respond to her daddy talking to her. She was not limp in my arms, more like a regular sleeping child but it was not normal and I was scared to death. I thought it was another bleed since she is back on aspirin. Leaving the cabin I called her cardiologist to tell him what was going on and he said to call 911. We were right in front of the hospital when I called so they told me to just check her in to the ER. I did. We had a CT scan done and it came back showing just her bleed from before and no new bleed. I was shocked. What could this be? Her O2 saturations and pulse were good. She did not have labored breathing. We are thinking now that perhaps she had a seizure. It is a common side effect of brain surgery and or a craniotomy. Saturday to Sunday she slept from 7pm to 7am. And Sunday, between 8AM and 4:30pm she was only awake for a few hours. Often after a seizure kids will sleep and sleep and sleep. We are only speculating this. We really don't have a certain answer. We pray that we will not see any more of this yet at the same time we are so thankful it was NOT her heart and NOT another bleed! Once we got to normal altitude coming home she snapped out of her little sleep coma and was the same little firecracker she had been prior to the weekend away. We are so overjoyed to see her running around tonight, dancing with her sister, making messes and singing very loud :) 
I was a mess yesterday as I anticipated spending another unknown amount of time in the hospital. I was NOT ready. I was mentally not feeling I could hold it together this time. I am so very grateful for the grace we were given!! My soul rejoices tonight!

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Friday, September 13, 2013

The new normal!

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 Double the sweetness

Double the fun

We've doubled our treasures

In more ways than one!!!!

It has been 18 months since this little button of love turned our family upside down and around and around! 10 Heart Catheterizations, 5 Open Heart Surgeries, 1 Diaphragm Plication, 1 major unexpected Brain Surgery, 4 days of ECMO and 35 hours of Bypass later and look at her now!!!!! God is in control is he not?? He could have and still could, take his baby girl back home at any time. But he has oh so graciously given us this most precious gift, here and now! We are full of new understanding of the blessings we have a chance to experience here on this earth. We are so blessed by both our trials and our good times! These 18 months have taught us that we never were, still are not, and never will be, The Boss! But God is, and He is so GOOD!

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Tuesday, September 3, 2013


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 When I read stories about children all over the world, praying for little Ivy. Grandmas and grandpas calling their adult children for an Ivy update. People going through their own difficult journeys and remembering Ivy to help them stay strong and press on. So many stories, all saved for our little girl to read herself some day. I can't help but well up and give thanks, even though the road for us, for her, has been anything but easy. 
It is a Joy to share our baby girl. To share her strength, her determination, her zest, her love for life, her adorable grin, her journey. 
We are wearing our joy shirts today, celebrating another great cardiology appointment. Ivy will have her next heart catheterization in California in February. Until then, we are just going to continue to love every second and spread our joy!!! 
Life is good! God is great! We are blessed!
We love you all!

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