Although we see Dr. Lacina yearly, she hadn't had a full work-up in two years. Josie has Tetralogy of Fallot and you can click here to find out more information on this condition. Josie was incredibly tolerant of her ultrasound, EKG and anything else that was asked of her. It didn't hurt that she was able to watch Kung Fu Panda 2 during her 40 minute ultrasound. 
After reviewing all the exams with her cardiologist, we were reminded that despite all her initial surgery, she still has an enlarged heart and that she continues to have quite a bit of back flow through the pulmonary valve back into the right ventricle because it doesn't close properly.
We talked more realistically about "when" our doctor thinks she'll need the pulmonary valve replaced. Our hope (fingers crossed) is that she can get the majority of her growing years done before the surgery. Optimally, we'd like to get her to age 15. We also talked realistically about sport restrictions and endurance restrictions now that she's school age. Looks like football, basketball, hockey, wrestling, competitive swimming, singles tennis, and gymnastics aren't in her future, but I'm guessing she'd make a fine softball player!
In March, we'll be celebrating our 4yr adoption anniversary.
In April, we'll be celebrating our 4 yr heart surgery anniversary.
In April, we'll be celebrating our 4 yr heart surgery anniversary.
Such a special girlwith a very special heart.
Our favorite superhero!XOXO
♥
She is so courageous, as our all of you. Thank you so much for sharing this update. I also hope that you will be able to postpone the valve surgery until her mid teens. Blessings to you.
ReplyDeleteIm glad to hear that things are looking good for Josie. My girlfriends son had something similar and had open heart surgery last year at age 16. It amazed me how quickly he bounced back and how little school he missed.
ReplyDeleteJosie is blessed little girl.
have a great day
xoxo
vivian
Glad it was a good thorough exam! Praying she will be able to hold off until 15 yrs old! What a beautiful blessing Josie is!!!
ReplyDeleteThanks for the update. Glad to hear that so far things are okay. Love the sweet little baby picture of her.
ReplyDeleteWhat a beautiful girl (and family)! I'm glad you had a good appointment and hope you have nothing but continued good news...
ReplyDeleteShe's sucha trooper :) Im so glad to hear that the appointment went well. And I bet she'd make a fine softball player indeed.
ReplyDeleteHappy (early) anniversaries to your family!!
You are all so courageous! Blessings to you.
ReplyDeleteSooooo cute... and such a brave little girl..
ReplyDeleteLove you girly.. miss ya...
What a sweet and special girl with her very special heart! Love that big smile of hers! Will keep her in my prayers.
ReplyDeleteHad valve repair surgery almost 6 years ago. It was going to be replacement, but the amazing surgeon was able to repair it instead.
Congrats on 4 years with your amazing super-girl!
Kim,
ReplyDeleteShe truly is a super hero!! As is your entire family!!
Josie and your family will continue to be in my prayers....
Hugs,
Deb
Yay for good heart news! Glad to hear things are going well. We have our appointment in a few months...
ReplyDeleteWhat a brave little girl! I am so glad that the appointment went well.
ReplyDeleteShe is such a sweet little super hero!
ReplyDeleteWhat a brave one she is and what amazing hearts you all have!
Prayers and all good thoughts sent your way!
I'm so glad the hear that the appt. went well. Kim. Josie has a heart of gold, and truly is a gift from God! Not to mention being a brave little girl!!!
ReplyDeleteSo glad to hear everything went well with Josie's appointment!
ReplyDeleteWow- just stumbled across this blog and was moved by this post. Huge hugs to your family and your brave little girl. Rx
ReplyDeletehttp://sandersonsmithstory.blogspot.com/
Happy Anniversaries to y'all! You have a very precious, spevial girl there. She is truly a super-hero!
ReplyDeleteSo happy to hear you had a good visit! We are hoping for the same thing for SaraGrace (ie: the valve replacement). It would be so great to be able to have that done in the cath lab instead of an open heart surgery. Hugs!!
ReplyDeleteHello girls I was waiting for Michael to get home to explain more of this but I wanted you all to know that i was thinking of you this week. Josie you are a sweet gift to us all. Thank you for sharing. Smiles...Renee
ReplyDeleteSo no bad news...just something in the future.
ReplyDeleteJosie is a wonder-Love those pink panda socks!
Hugs to all of you for what must have been a stressfull day.
Auguro alla piccola Josie e a voi tutti che tutto vada per il meglio e che abbiate sempre buone notizie e un futuro gioioso!
ReplyDeleteHi Kim,
ReplyDeleteSo glad that Josie had a good exam! Hope you will be able to postpone the surgery until her teens. she is a darling, special little girl!
Hugs,
Debbie
What a sweet post! Josie is definitely one tough cookie! I am so glad the appt. went well!
ReplyDeleteHope you had a Happy Valentine's Day! Our fondue was a big hit!
I'm so glad Josie's appointment went well. She is a very special little girl and superhero!
ReplyDeleteBlessings,
Janet
I am so glad you had a good appointment. It's good to be realistic about the situation and I'm sure she will find all sorts of wonderful activities which will not put stress on her heart. Bowling team? Marching band?
ReplyDeleteHugs to you all.
What a brave girl she is...yes, you are right...she is definately a super hero.
ReplyDeleteSuch a special little girl! And what special, STRONG parents you must be to get through it all! I can't imagine having to watch my little babies go through these sorts of things!
ReplyDeleteYes, she has a wonderfully beautiful heart with parents and a sis with beautiful hearts, too. I will continue to pray that her surgery will be in the far away future.
ReplyDeleteEmma took such a lovely pic, and I especially love her lovely tribute to her Nana.
Thank you for your kind words. I am trying very hard to get through the next few days...Aunt Sarah would fuss big time if we let sorrow and grief take over. Her funeral is going to be a beautiful one.
Thanks for being such a precious blog friend,
Cindy
So glad she had a good exam. I had forgotten that she had the heart surgery so soon after she came to you. She looks so cute in that post op photo, like she doesn't have a care in the world. And who does when they are that age.
ReplyDeleteOh, God, I want to hug that brave little angel!
ReplyDeleteWhat an exceptionally, amazing mother you are! Your daughter is even more so, and with the love of parents like you, her future is brighter than a star. Josie is so incredibly beautiful and that smile is to die for.......she must take after you. I will always keep you and your precious ones in my prayers.
ReplyDeleteBig Hugs,
Meri