Conlan H.
Ohio
Birth Date - October 4, 2008
Main Diagnosis - PVL and spastic quadriplegic cerebral palsy
THEME: SUPERMAN (PREFERRED) and can include some of the other DC Comics characters (BATMAN, ROBIN, GREEN LANTERN, WONDER WOMAN, FLASH) and a FEW of
the VILLANS, Like MR. FREEZE, the PENGUIN, and the JOKER will be accepted (NO NINJA TURTLES)
Quilt Deadline: 3/1/15
Conlan's Story
Conlan was born into this world fighting at 29 weeks and has not stopped
fighting since. Conlan spent a long 10 weeks in the NICU on oxygen where he
received his first devastating diagnosis of PVL, Periventricular
Leukomalacia, which is cysts on the brain that erase motor function. Three
days later Conlan was rushed off into emergency surgery to remove 15cm of
his small intestine and was intubated for 2 weeks after this surgery. Conlan
pulled through and made a remarkable recovery, beating all odds! Five weeks
later he was sent home from the NICU with only colostomy bag - THE BEST DAY
OF OUR LIVES!
The first year of Conlan's life was scary and hard. We knew by 16 weeks old
Conlan was not developing correctly and he kept flexing his muscles every
2-5 seconds causing him to be in excruciating pain. At 8 months old doctors
started Conlan on baclofen, 2 weeks later he smiled for his first time EVER
and was such a happy baby, however he never did sleep well (and this hasn't
changed!) Conlan received his diagnosis of spastic quadriplegic cerebral
palsy right before his first birthday. We didn't care; we went on to
celebrate Conlan and every obstacle he had overcome thus far. Conlan's name
means HERO in the name books and that is exactly who he is to us!!!
Conlan went on to excel (for his diagnosis) and began to speak quite well.
He could say" Mom", "Aunna" (grandma,) "on", "off", "ball", "more", "Hi",
"mote" (remote) and about 50 more words!!! He also was potty training,
defying the odds once again, learning to do so many MORE things that the
doctors told us he would never do. Near the age of 3, I noticed Conlan was
forgetting words and over the next 2 years Conlan went on to lose ALL of his
speech, all of his potty training, lost the ability to focus his eyes for
more than 5 seconds, lost the ability to grasp objects, control arm
movement, and scoot. This was the most devastating time in Conlan's life and
ours. After endless appointments with specialists, and ALOT of testing we
still have NO reason as to why Conlan regressed. During these two years of
regression Conlan got very sick many times, had endless surgeries and spent
most of the two years in the hospital. But I am proud to say that he has
not been admitted to the hospital in over a year!
Conlan's regression has halted, and he has regained a few abilities that
he had lost, including his contagious beautiful smile. He even started
kindergarten- a milestone that was always in question. Conlan never lost his
receptive language and always understood us and found ways to communicate.
Right now he uses eye gazing and facial expressions, and he has absolutely
no problem telling you what he doesn't like and what he loves! He does this
all in an unspoken language, yet he makes sure you understand him! My
superman, my hero, my little boy who has defied odds again and again and
would be honored to receive such a meaningful quilt with which he could
begin making memories with!
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