Today marks 3 years since Hailey's Pacemaker surgery. I won't re-write everything I have already talked about. If you would like to read the blog post of that time you can do so here:
Hailey's MRI and Pacemaker Surgery Story
So far living with the pacemaker has greatly improved Hailey's quality of life. We have tried to be a part of this "children with Heart issues" society and we've done a lot with them. We've been a part of family picnics and this year we will be walking the family 1 mile walk to raise money for Children with heart issues. We've even met another little girl who has just recently has a pacemaker placed.
We've had TONS of doctor appointments associated with having a pacemaker. It has not been a set it and forget it type of device. Hailey's pacemaker paces 99% of the time. We all greatly depend on this tiny device. We used to have a machine that send data over phone lines, now we have one that does it over bluetooth and my cell phone. Technology is always improving.
We still travel to Utah for Hailey's cardiology appointments but we did have to establish a "home" cardiologist as well. We always want to be prepared.
Hailey will be taking treats to school to share with the kids as we celebrate her pacemakers birthday.
Time sure does fly by...
Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her. Each necklace signifies a Hug for Hailey.
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