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Friday, August 24, 2012

3 days of Sildenafil

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I know it's early to report anything but I am so very grateful for the past 3 days and just wanted to share. We were told it would make her even more tired and suck the last of her energy from her. Well actually, it's been quite the opposite! In fact she's kind of crazy! Ivy wakes up 6am now! And she is wide awake until her nap. She naps 2 hours max and is wide awake until bed time. She cries when I put her to bed. She cries for about 1 to 2 minutes and then she is OUT. She has never cried at bed time. I think she is having such a great time she can't bare the thought of sleeping. I love it! She is loud now. Before her voice was pretty quiet but now every sound she makes has one volume, Loud! She is happy! Really giggly and very funny. She still has the silent laugh, you have to look at her to see if she is laughing because it really has pretty much no sound. It's very funny to watch. She thinks she is pretty funny too. And she likes to spin and swing and roll around now. Something she cringed at before. She is eating really well. She is drinking a little whole milk now. Before that she would only drink water. No juice, no milk, only water! 
PCH is getting her records from the past 5 months all together and ready to send out. Our cardiologist and the office has been so very helpful, supportive and encouraging of our decision to seek other opinions. It will be a few weeks before we hear from any of the doctors. 
Sweet little things to end my post with~
All about Ivy
She has the sweetest voice and disposition. She always says I love you!
She loves to kiss Lexi and she tries to sit on her lap and Lexi tells her she isn't big enough to hold her yet :)
She does not miss anything, she listens in on conversations :) Tonight Cassidy and I were talking about her knee that has been bothering her. Ivy was in my arms and she immediately lifted up her leg, grabbed her knee and said, "Hurts Mama, Knee hurts!" I had to kiss it better many times through the night. Such a character! If Lexi asks for cheese Ivy asks for cheese, if Lexi wants to be held, Ivy needs to be held, If Lexi wants Diego on, Ivy says, "me too". She is smart as can be and she talks very clear for the most part. She makes small sentences now, like Cass, where are you? Blankie, Where are you? Mama, more fishies. Mama Hold you (instead of hold me haha) She loves the learning tower, I'm so glad I bought that thing!!! She loves to get her teeth brushed and she is so girly! She loves jewelry and never lets us take her flower out of her hair! She wants only pretty clothes on and she likes to put on lotion. She asks every day for earrings. She thinks it is hilarious that I can sing the theme songs from her favorite nick jr and disney junior shows. She loves animals!! This is brand new for her. She is not afraid of dogs or any animals any more. (Remember the giraffe at the Safari Park in China?) As soon as the weather permits we are taking her to the zoo! She has gone from only being able to sit and rest on the couch and sleeping most of the time to almost doing a summersault on her own. She is still really weak, she makes a lot of grunts and groans as she goes from sitting to standing or crawls around but she for some reason loves to practice summersaults and head stands! I realize that every time we get on a new heart med she has these surges and I get all crazy and excited and then she crashes. I'm not in any way trying to say she is better or the Sildenofil has solved the problem, She is sick and she needs her valves repaired and she is in heart failure. But Tuesday was great, Wednesday greater and today the best of all. And Im going to enjoy the party while we wait to see whats next. And if we have to go away..... It's going to rock all of our worlds so I'm enjoying the moment! We all are!

Your questions
KHM We are doing those 2 hospitals as well. (and one other)

Lisa, Brad, and Lena Yi Yi  I would love to be email friends with Lena Yi Yi! How blessed we are to have her praying and rooting for Ivy Joy!

Believing Grandma In Nebraska, Thank you for that!

Lori I agree, It has to be the heart failure. She eats well. She just burns it all just surviving.

Cathy, that was awesome! I love Ricardo! I will be leaving Ivy's ~It's not over story soon!

Julie, I will be praying for precious Olivia too! We have contacted Chop as well.

Jaime, I emailed you :)

Carmen, Ivy's heart is still working. She is not yet a candidate for a transplant. They always try to medicate, repair, then replace. There are not as many hearts donated as there are people needing hearts so it is a very delicate process. I know it seems easy but once you have used up all other options is the only time they will put you on that list. And if you reject that heart then it becomes more likely you will reject it again thus leaving no other resource. And finally, they do not last forever, sometimes only 10 years. Ivy is so young she would require several in her lifetime. So while we certainly realize that we could end up traveling that road. We know it is not time to travel it yet. 

And everyone else, Thank you again for your prayers, for sharing with your family, friends, churches and prayer groups! Thank you for checking in and for all of your support. We are blessed!!!

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Luciana said...

Yaaaaaaaaaaaaayyyyyyyyyy! I'm so happy for you, but overjoyed for precious "Iby Jellybean". She is having a ball. That is prayer answered right there. Of course, ultimately it is for her to be healed; but it's so exciting to know that this baby is having FUN and showing everyone how even more precious she is. Much love, hugs, prayers and well wishes to you all.

Jboo said...

Wow -- made my day to read this wonderful happy report. What a sweetheart. Will continue to pray for Ivy and your family.


Paige said...

Sooooo thankful you are getting to see/enjoy this precious angel in her element! What a spunky little doll! Praying for many continued good days as you continue to make her plan. Madeline asks how Ivy is every single day!

Carmen said...

Oh how your heart sings when Ivy is given these moments. Thanks for the explanation on heart transplants. Didn't know they only lasted 10 years. Will continue to pray for healing.

Kim said...

Good morning! I was so happy to read this post this morning. I just wanted to let you know that I have been praying for Ivy Joy and believing and thanking God for her healing. Love, Kim

Yvette said...

YEAH!! love that even it is for a moment your princess is back full force.

Johnson Party of seven! said...

What a dollbaby! We live in Tennessee but went to CHOP (Philadelphia) to give birth to our daughter, Hutton, who was born with Tricuspid Atresia with pulmonary stenosis and a VSD AND complete heart block. She had many surgeries to repair her heart but at age three, her options had run out and she recieved a transplant last July. We too have dealt with failure to thrive. Happy to report that she is doing amazing now and is finally on the charts! All this to say, I pray that your sweet girl will have a successful surgery but if The Lord has a new heart in her future then it will be okay too. Stay strong with The Lord in front of you all. He feels the pain of his children and will take hold of you all.
God Bless,
Jill Johnson

One Happy Mama said...

I <3 Ivy Joy! Praying she stays active and eats like a champ for you!! Praying everyday for your baby girl!! ~Nancy

sierrasmom said...

We are on vacation but I keep checking in!! So happy to read your post today. And FYI, we are in NY but only 4 hours from Boston. If you end up there...I am coming for a visit!!!
Kathie and Sierra and the rest of the Hikade family who has become quite smitten with little Ivy!!!

K said...

I'm so happy to hear that you are being aggressive in researching other doctors, treatments, etc... for your baby. I really feel for you about the calories intake situation. Do you have a Vitamix or other really fantastic blender? Does it help if your baby doesn't have to chew the food but can just swallow it, like purees vs. chunks? Is it the swallowing and having to hold the breath that makes eating so hard and tiring for her? Funny how people think losing weight is hard, but until you've had to fatten up a sick child, one can't imagine the definition of hard, can they?!

KHM said...

Soo, I forgot to note I am Josie LiNi's mom. Maybe I want your full list of second opinion hospitals! You know I am actively getting second opinions for Ms Josie right now.

Blessings and prayers for Miss Ivy Joy.

robert turner said...

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