Todays Echo

             Today Ivy had her first echo since coming                 home. And it...          
LOOKED GREAT!!!!!

 I can't even express the relief and the sheer joy!
I was having some pretty significant anxiety over having her off of aspirin with all those parts in her little heart. It makes all her doctors very very nervous as well. She is still at great risk for clotting, but I have had to let my fears go and lay them at the cross. She is being protected!!! She is doing so well! 

Blue cake pop lips and all. Sorry, I have been really bad about getting the camera out! Its been cell phone pictures only all of August! 
We see the neurologist as well as the cardiologist again next week. At that time I will give a more in depth post. For now, know that little Miss Amazing is doing just that.... Amazing!!!! And Big sister, doing just fantastic! Happy to be back in school and dance and just loving life like the rest of us!!!

Home

Time to get on with life here!

 Time to follow up with doctors. Old ones and now new ones.

Time to get back to pre-school

 And possibly start pre-school!

And perhaps we will have 2 little girls in dance this year!

 As for the stop to see Minnie mouse... I think I can speak for all of us, that I don't think we have ever fit so much fun in to 19 hours! It was absolutely PERFECT!

We only had 2 potty stops on the 7 hour drive and the girls were just delightful the entire trip!

 Minnie couldn't get enough kisses on our Ivy girl and poor little Ivy was in pain! You see Minnie kisses by bopping her pointy nose on you. She was right on Ivy's incision doing her kisses and little Ivy was cringing! We had to run to the bathroom to shed a few tears but after that she was still ready to run full of only adoring words for her favorite mouse> She kept saying, She didn't know! She loves me! She missed me!

 Minnie Mouse is only at the dinner at Goofy's kitchen so we ended up Dining with her instead. And in the morning we went to see the princesses!!

Heading home to heal

And we are on our way outta here!!!! Thank you to my Lord and Savior for once again showing us Grace! Thank you to my family for making all of this doable! Thank you to our friends and followers for loving and praying us through this!!! Our little Hero has wished for breakfast with Minnie Mouse. So we will sleep near the favorite mouse tonight and grant that wish to our deserving super hero princess warrior miracle of a daughter in the morning. Then it's 6 hours on the road till we are back with our very missed big kiddos!

Hope

                                     HOPE
                     Is not wishing you could
                        It is knowing HE can!

This morning we all woke up as a family in our little hotel in Palo Alto. Ivy included! She has regained her appetite and was munching on eggs and noodles before 8am while her sister slept. Lexi was so excited when Ivy was unhooked from everything yesterday and they said we could leave. Her smile could have lit the room up! Tomorrow, we start the drive home. But today?

 Today is about miracles! Family! Treasure! Hope!

Waiting on results

We got to get the little Empress out in the wagon today. She had been asking all morning!

We have been given the thumbs up with neurology so now it is just up to her heart doctors to say when we can go. We have 2 more IV's gone as of today. So down to just the one in her right hand. She had lots of awake time today! She is very on edge, Ivy is usually the star patient. most cooperative little patient you can ever imagine! Well today she pitched a hissy fit like we have NEVER seen. She was pounding her tiny fist and shouting at the top of her munchkin lungs, "I NOT GONNA LAY DOWN FOR MY ECHO! I DONT WANT ECHO! I NOT! I NOT DO IT MOMMY!!!!!!" She hates tape. She has had her skin pulled way too many times and she is terrified of getting tape taken off. Well, she had an IV on her groin and another in her foot and that was a lot of tape to come off. She'd had enough and when the echo tech came, she was DONE! It made me feel so relieved to see her fight come out for reasons other than getting through near death experiences. Seeing her use it to protect herself, to own up, to be heard, made me proud. I want her to be herself. I want her to know that she has every right to tell these people she is NOT HAPPY about this! Tonight is going much better. No tests left to do, no tape to pull, just hanging with her daddy tonight while mommy is at the hotel with the other 2. Waiting on pins and needles for the results from todays Echo.

Bald is Beautiful

                              ON YOU!!!

We have had another quiet day. Ivy has been very sleepy. She acts completely fine when she is awake but has been in pain and that just breaks my heart! I hope she is just sleeping off the pain. Her way of coping. As of 5pm we had not yet moved to 3 west. We are just waiting for a room to come available. 

This one was taken last night before the last of the swelling in her eye was gone. The others are from today.