Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Wednesday, September 11, 2013

The worlds worse blogger!!!

Please, please, please forgive me...soooo very very much has happened since my last post of June 27 th...and it just hit me today that we have many followers who are not on Facebook...so...here we go....






The cardio version that took place at the last post was only successful for a few days. Xavier's heart went back into the flutter and he just continued to get sicker and sicker. His heart rate just kept getting slower and his resting heart rate would fall below 40, which is considered a pause in the beat. And his oxygen saturations were in the 50's...Very scary when your ICU room floods with doctors and nurses...



 

Finally on July 10th, after dealing with an infection, we decided that the best plan of action for Xavier was a pace maker...so in a whirl wind and an hour after the decision was made my sweet boy was wheeled back into the OR, less then week after his valve repair to have a pacemaker placed. It was scary and no fun, but three days later, he was starting to feel better. He was laughing, playing, sitting up and getting better by the minute!!!


After 31 days in the hospital, Xavier was discharged. The first two weeks were rough. He struggled to eat, sleep and manage his pain...however, slowly but surely he began to feel better, eat better, sleep better and get his spirit back. Before we knew it he was getting stronger and happier and we were getting our baby back.


Since coming home, we have been unstoppable! We have had to make a few trips to CHOP for pacemaker clinic and cardiology, went peach picking, we went to the aquarium, flew to Rhode Island for vacation with Grammy and Grampy, spent Labor Day weekend with Nana and Pap Pap and have trips to the zoo and pumpkin patch in our future!! Xavier is doing better then ever! His heart has never looked so good, his repair is great, his breathing has slowed, his O2 is higher and he seems to just feel better all around. He has learn 20 new signs, has started to say some words and is working really hard on walking and climbing. He has begun to go to a play group and is back at swimming lessons. He is also preparing to become a big brother. His little sister, Elliott, will be born in early January and has a healthy heart.

For us, this has been our most difficult summer. We have never seen Xavier so sick or struggle so much..but in the darkness his light always shined. God has been so good to us and we have never been alone. We can't thank our friends, family and heart community enough for the prayers, well wishes, gifts, phone calls, emails, text messages and hospital visits! We hope to pay it forward some day!

Its' a GIRL!!
The perfect patient!
Everyday is filled with fun!!


A world class traveler!



Fun at the aquarium!  


Peach Picking



Family Fun Day


The Beach is the place to be!!




X loves Rhode Island!!

Fun during play time

Fun with Cousin Sue

Visiting with Connor

With his friend Molly after their first day of "school"

At play school!






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