Alex U.
Illinois
Birth Date - Febraury 24, 2012
Main Diagnosis - hypoxic-ischemic encephalopathy (HIE)
THEME: The color BLUE (with a special interest in: Cookie Monster, Grover
(from Sesame Street), Dragons and Dinosaurs (realistic or silly), Star Wars,
FAST cars and airplanes.
(One of his Dx is: cortical visual impairment. His brain has to learn to see and he typically sees realistic images best. Now he can recognize cartoons and puppets (like Grover) and can figure out they are the
same. Having a mix of realistic and cartoonish characters
will give him things he can identify now and work on for the future - allowing the quilt to grow with him)
Quilt Deadline:10/15/2014
Alex's Story
Alex was born after what appeared to be an uneventful pregnancy and labor.
As his parents, the scariest moment of our whole lives was when he was born
gray and not breathing. After being intubated in the delivery room, he was
transferred to Children's Memorial Hospital in Chicago (now Lurie
Children's.) It was there that he underwent 'cold cap' therapy. In order
to minimize damage, he was sedated and his brain was cooled to 91 degrees F.
By slowing down the brain's activities, further damage can be avoided with
this relatively new life saving therapy. We have been told that without
Cold Cap, Alex most likely would not have made it past his first night of
life.
After three days of cold cap therapy, Alex underwent an MRI and EEG to
assess the damage. It was then that we found out he had suffered a very
significant injury to all areas of his brain because of lack of oxygen. He
was diagnosed with Hypoxic-Ischemic Encephalopathy or HIE III and we, his
parents, were told he might not make it and if he did he would live is life
in a vegetative state. ....but he had other plans! :) He's been defying the
odds ever since, but it's still a difficult road at times.
Alex is a loving smiling crazy little guy, but some challenges Alex has
faced along the way have included: being diagnosed with quadriplegic
cerebral palsy, epilepsy, visual impairments, aspiration, he is fed via a
feeding tube only, chronic pulmonary infections and over 15 hopiltiations.
Despite countless doctors' appointments, tests, needles, therapists and
hospital stays; he's one of the most happy kids ever and the light of our
life!
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"Thank You"
We decided to wait until Christmas morning to open Alex's quilt. It's just too amazing a gift to open on a random Tuesday. It was also kind of cool as parents skipping downstairs just as excited as our kid.
The quilt is beautiful and so perfect for Alex. It's already getting used this morning and know it will be part of naps, cuddles, trips to relatives (and the occasional hospital stay) for many many years to come. We just love it! Thank you so much.
******
I have to tell you, I just can't get over how amazing Alex's quilt is. It's so 'him!' I find myself going into his room from time to time during the day just to admire it. I know it will be something we will treasure always. Thank you so much to you and everyone who makes Love Quilts so incredible!!!
