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Friday, May 31, 2013

Great News!

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Wearing only a dress, shorties and a diaper... Miss Ivy weighed in at 20 pounds today!! She is 31 inches tall (or short). Her electrolytes were PERFECT! And her BNP Was at an all time low (For Ivy) of 379! Ivy has been as high as 20,000! So it is still high, still heart failure, but trending way way way way DOWN!!! Her heart likes it's new heart failure medications. She was not able to ramp up to her final dose of carvedilol because her blood pressure is very low right now due to all the meds. She is 70/40 tonight... We are watching her closely as she gave us quite the scare last night. 
We could not feel more content and overjoyed today. We have been having the best days, the best of times!! We got the ok to take trips with her, to let her be a kid and enjoy life!! Who could ask for more?
Tomorrow we have recital pictures for Little Miss Lexi! And Sunday Make a Wish is coming to help Ivy dream her biggest wish! Next week is recital!! The kids are all out of school and summer is here!!!!! Have a blessed weekend!

we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. (Romans 5:2-5) Pin It

Thursday, May 23, 2013

Night & Day

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Oh the difference between our two Littles...

Ivy Joy is very much a free spirit! She runs her own show, floats her own boat, and moves to her own beat! She makes messes one would never imagine possible with just a tiny amount of food scraps. She is loud and when you ask her to be quiet she tells you in her loudest voice how quiet she is going to be and then continues telling everyone around her (who are making NO noise) to be quiet and to see how quiet she is being :)
She wakes up every morning with a smile, saying good morning mommy, I'm so happy, Im so hungry, Im thirsty too! Every morning! She wakes up early, skips nap and goes to bed early!

She has no problem telling us NO. And she does not budge for any amount of bribery or threat. 
I'm not walking without your hand mommy, I'm NOT!!! I don't want to! I'm not walking!
I'm not going in the pool mommy! I don't like getting wet! I don't want to get wet! 

She has a great amount of trust for us. She does not go to strangers, but she will stay with a babysitter and tell the sitter the whole while that mommy will be back soon. She will holler, Mommy don't leave, mommy I want to come too! But then she does fine and is happy while we are gone. 

She talks about food, eating and more food all of her awake hours. She would rather have a conversation about different foods than about anything else. She would be happy to sit in her highchair or stand in the learning tower all day, grazing on unhealthy snacks! She does not like milk. And she will tell you how much she does not like milk with her arms folded! 

She likes to take things apart. If something breaks.... it's no big deal to her! She just says I'm sorry, please forgive me and moves on. And if someone else accidentally breaks something, she still says I'm sorry, please forgive me.

She loves to go bye bye. From the moment she finishes breakfast she is ready to get dressed and get in the car. She doesn't care where we go, she just wants to go. And when we get back home and pull in the garage she says, I want to keep going!

She rarely plays with her toys. (unless her sister has it....) She has to be persuaded to play at all. 

She is silly. She likes to make people laugh. 
Yet she is serious, she does not like slapstick type humor. If her brother pretends to fall or run in to something or whatever, she will act very serious and ask you if he is ok and if he needs a hug and a kiss. Not even a crack of a smile! Yet if he did some slobber noise she would crack up! 

She does NOT like sippy cups. Not of any type! She never has. She likes big open cups and water bottles. She does not spill a drop when she drinks. She is very neat at feeding herself. The messes she makes are just purposeful messes. Hey, I think I will see if I can take this cooked bean and turn it in to an 8x8 finger painting on the table! Success every time! 
She likes to eat with chopsticks. She is very patient when learning new skills. She is not competitive. She likes to be the center of attention. 

She loves purses and jewelry. She loves lotion and bubble baths with no bubbles (She just likes saying bubble bath :)
She would rather shop for food than a toy!

Lexi is our rule follower. She is our perfectionist. She does not like to be bad at anything. She worries about things like being abandoned and being alone. Not having a mommy and a daddy. This breaks my heart!

She wakes up every night between 2 and 4am comes up stairs all by herself using her ladybug dream light, goes to the bathroom and then jumps right in our bed and falls right back to sleep. 

She likes to sleep late in the morning, take naps, and stay up late. 

She wakes up singing every morning. I can always tell when she is awake because I hear singing coming from behind my closed bedroom door.

She gets very upset if something breaks, even if it was not hers. She gets upset if she see's or hears of someone doing something that she knows is wrong. 

She would stay home for days at a time, never leaving the house and be as happy as can be with that. 

She does not like to act silly (she is SO proper!) but she LOVES slapstick humor. You can get the most amazing belly roll laughter from her just by falling and I mean even if it was not on purpose! She loves the old cartoon humor like Tom and Jerry and the old disney cartoons. She will laugh hysterically if you bump your head or trip! 
She looks in disgust at things like dirty faces, holes in jeans, spit bubbles, crazy bed head, anything dirty... (feet, hands and so forth) 

She could care less about food. She actually finds it to be more of a nuisance than anything. She would not eat breakfast lunch or dinner if it was not offered to her. She could live on milk. She would rather have a carnation instant breakfast drink for every meal! She does not like fries, would NEVER eat fast food and does not like meat of any kind. She is picky! Before she eats anything, she asks if it is healthy! 

She is quiet. She is calm and easy going. Unless she is crying... then she is 
loud! Thank goodness she is happy 99% of the time!
She loves to dance, jump rope and swing. She loves a good challenge. She likes to win.
She loves to play with her toys. 

She still prefers a sippy cup over an open cup. 

She does not like messes! She is a neat freak, folds everything or puts it on a hanger! She can even make her bed. 
She loves to help out. 

She loves to swim. She just learned to swim alone this week and she is now a total fish in the water!

She loves clothes and shoes and bathing suits! She would rather shop for a new dress or a bathing suit than a toy!


They both are SO LOVING! So Affectionate! So kind! 
They are both filled with joy all of the time and they look out for one another. 
They both love to sing and to talk! They never stop talking! They both love Disney's Little Einsteins. They both love princesses, mermaids and Minnie Mouse! They both love to paint and go on the Merry go round! They both love hair pretties and perfume! They both love to have their hair blow dried and they both love all things that sparkle! They both love books! They both love sharing a room. They both ask for the other as soon as one is missing. They both love special daddy time!  They both love special sister time! They both love each other!

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Monday, May 13, 2013

Ivy's language explosion, Talking with the littles

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I wike the bumps in the road mommy! Do you wike the bumps in the road?
I do like them Ivy! I wonder if Daddy likes them? 
Dada, do you wike the bumps in the road? 
I do like them Ivy!
Mama.. mama! Dada wikes the bumps in the road too!!! 

At gymnastics today. 
Mama, wheres Wexi? 
She's right there on the balance beam. 
I see her mama, I see her! Wexi's doing gymnastics! She's doing weally weally good! I'm proud of her mama! I wike watching Wexi doin weally good gymnastics! I weally wike it!

Ohh mama, you washed my blankie! Thank you! 
Ohh mama, you made my oatmeal just right! Thank you!

What's wrong mama?
Nothing's wrong baby, why do you ask?
You wook sad mama. You missing dada?
Come here mama, wet me gib you a hug!! (patting my back in the most precious way!)

Mama, I'm missin Minnie Mouse today. I want to go back to Disneyland to see Minnie Mouse! I want to give her a kiss and hug! 
You do? What about chip and Dale?
No no no! Chickendale try's to eat my chicken! ChickenDales a naughty naughty boy! He's weally mean!

Mama, what are you looking for? 
Im looking for the peanut butter.
For Lexi?
No, for Brady.
Well, I'm sorry you can't find it mama. Don't worry. When Dada gets home dada will help you find it, don't worry!

I'm sitting here right now typing and she is in her chair eating rice with chopsticks. I can NOT eat rice with chopsticks! I can not even eat an egg roll with chopsticks unless I poke it! 

A random woman walked passed us today. Never saw her before, didn't exchange any words with her, nothing. 2 minutes later she walked back up to us and said, That's a walking miracle right there, a walking miracle! If she only knew how right she is!

Her belly is flat, no edema whatsoever. The days, each one after the other are bringing more activity. She is gaining weight. She is happy and bossy and funny and a little stinker at times! 

I don't know what tomorrow or next week or next month will bring, but today, the right here and now... IS SUCH A GIFT!!!


Mommy, you know what? 
God gave me a sister so I would never feel alone.
Your right baby, he sure did!
And that's why Ivy and I both have black hair. Because He wanted us to look alike so everyone would get us mixed up!

Mommy do you remember when daddy wasn't using his head and he said they don't make surf boards in Arizona? 
Oh yep, I remember that.
Ya, me too! Daddy sure is a cwazy dad!

Mommy your the best mommy in the whole world! And daddy is the best daddy in the whole world! And I'm the best daughter in the whole world!

Mommy remember when you said, doing our best is more important than being the best?
I sure do!
Well, you were wrong... Today Miss Vanessa said my toes were pointed the best and it felt important!
Oh dear :(

Mommy,  Ivy wants to wisten to wobble again. I know your ears are tired of the same song over and over, but try and remember that she is just a baby and she needs this time to relax!

Hi mommy!
So.... I was wondering.... Is this CD Yours?
Well, I was wondering if I could use it to trace circles?
Thanks Mommy, Your a great share er.. and your setting a great example! 
(I think she must have heard that a few times before..)


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Friday, May 10, 2013

Thank you!

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Thank you to all of our friends around the world for the outpouring of love and prayers over these past few weeks for Ivy to be home for her Birthday!
She was!! 
 It was a magical day.. HOT, but magical and every bit of the perfect day I dreamt she would have on her miracle day! 
It is so hard to believe our little tiny dynamo is 3! 

I have lots of pictures to post from her special day and I will do so as soon as I can, but today, I wanted to fill you all in on our trip to Lucile Packard for Ivy's transplant consultation.

We met with every person one could imagine. Social workers, child life, nutritionists, doctors, nurses, and the transplant surgeon. She had test after test and was an absolute angel the entire time. We have been seeing a great change in her since starting some of these new heart failure drugs and can certainly tell that she feels so much better. We will continue increasing her dose and using oxygen 24/7 as a medicine for her hypertension. 
Anyway, this morning the transplant team all met to discuss Ivy's history and the path they believe is best for our daughter. And after much consideration they have decided to decline listing Ivy for a transplant. I know this sounds like grim news but Dr Kaufman assured me that this does not mean she will never be listed, it just means that they feel there is still hope for Ivy's heart to get a little better with time. They feel that with some bypass arteries growing around her coronary and some hopefully positive response to the oxygen, and new medications, Ivy's heart may still be able to give her a good quality of life. The right side of her heart has terrible function, but they believe it could just need more time. It has only been 4 months since her 5th open heart. They want to give it a full shot at recovering before they say it is absolutely incapable of sustaining life. I appreciate their optimism. I call it hope. I know that every part of Ivy's life and miracle holds true to Matthew 19:26
But Jesus looked at them and said, "with man this is impossible, but with God, all things are possible."

And so the plan is to wait and see. She will continue with her new meds and oxygen. She will have a heart Cath at Lucile Packard on August 4th. And if she stays stable up until then, and shows a trend for the better in her  heart Cath, then we will stay off the transplant list and with our faith of a mustard seed, wait with anticipation for God to continue sketching out the plan for Ivy joy. He no doubt loves this little girl bigger than anyone could ever comprehend. And while this story may not seem like much of a fairytale to most, we give thanks every day that we have the 2 sweetest little princesses in our lives because He trusted us! 
I don't know about you, but I think this is going to be the best mothers day weekend ever!!! 

Ivy's Birthday Carriage!

Worn out from the party and being comforted by her big sister.

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