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Friday, May 25, 2012

Here and now and what's to come!

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                                               It's DUMMER TIME!!!!!!
Lexi still has trouble with S and therefore replaces it with a D
So summer is Dummer! Every morning she squeals with delight and says,
It's Dummer Time!!!! 

 And what could be better than having so many siblings to share Summer Time with!!
 The girls are already so tan!!!!

 And Ivy's 2 free weeks of fat in the diet are going very well!
 Ivy is showing us her little spunky, happy, silly, fun loving personality more every day!
                                       She is so smart and so adorable!

She is napping 1 short nap per day and continues to sleep through the night. 

                              She takes her medicine like a little champ! Yet still she              is saying ~All Done~ before we even start :)

 And Lexi is still just wonderful in every way! She is the happiest child with the sweetest voice! She is oh so FUNNY! And oh so LoVeD!!!
 A rare moment with no flower or bow in the hair!!!

 So life here at the S house is busy and crazy and non stop fun. 
I am hearing no breathing change in Ivy since we went on the fat FULL diet. We continue to pray that the chest x~ray reveals no fluid so Ivy can continue to eat everything and gain weight.

 One thing we do know for now. Ivy still has a great deal of high pressure in her left pulmonary artery. Before surgery the pressure was 90-100. We ultimately want it to be 20-25. After surgery it stayed too high. That is when they decided to do another heart Cath and insert a stent. Today her pressures are still riding around 60-75. Too high. Her pulmonary artery is able to live with it for now, probably because it adapted to that being the ~norm~ for almost 2 years. So we will wait it out for a few months and allow her body more time to recover. 

But by September.... we will have to talk about doing another procedure. A heart catheterization, to stretch through the stent. This will likely happen by October. And it will happen several more times after until she has a growth spurt and stretching will no longer do the trick. At that time she would need that homograft, (the donated human pulmonary valve) replaced. Instead of replacing it with another pulmonary valve, they will need to replace her entire pulmonary artery. Our prayer is that she will not need that before she is a pre-teen. God knows just the time it will happen and it will be the perfect time, His time. Until then, we praise Him for allowing Ivy to be thriving, to be here, to be FREE!  Pin It


Paige said...

We have been praying for NO FLUID buildup over here!! The girls are so very precious!!

my3 kids said...

Awe such wonderful pictures of your sweet little girls. Hope they have a wonderful "Dummer" so cute! We continue to pray for Ivy and we hope she continues to thrive without any kind of intervention until she is much much older. Look how far she has come and she looks amazing. We are so happy that things are going well for your family. xoxo

Luciana said...

Oh Mary! You kill me with those pictures. Your girls are so gorgeous! I'm glad you're having a great Dummer Time and that baby Ibee is showing a little glimpse of smiles. So happy. xoxo

Leah Mei said...

So happy to hear things are going so well! They are both gorgeous!

Nancy said...

Can't find your email address, Mary.
email me if you'd like to chat re AZ's Early Int.

Nancy-from Ordinary Miracles & The Crazy 9

Georgea's Mommy said...

Love those beautiful girls, and you too Mama!!


Anonymous said...

so happy to see smiles on sweetie IVY JOY!! so glad all is well! continued in prayer,Cathy in Illinois

Big Happy Family said...

Look at those sweeties, it does my heart good to see Ms Ivy thriving. I know that I witnessed a miracle with that baby girl. Hope she is enjoying all of the goodies she wants. J

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