Bryce K.
Connecticut
Birth Date -   May 8, 2012

Main Diagnosis -  Neurocutaneous melanocytosis

THEME:  ROAD CONSTRUCTION VEHICLES and can include ROAD SIGNS  (Dump trucks,
Earth movers, Excavators, etc.) 
 www.cyberstitchers.com has a lot of
patterns - search: VEHICLES

Quilt Deadline: 8/1/15
Bryce's Story

Bryce was born with congenital melanocytic nevi - which are large
birthmarks. He was sent for a routine MRI at two weeks old and
was diagnosed with neurocutaneous melanocytosis. He was diagnosed with
hydrocehalus within the same week. He had his first brain surgery at less
than a month old.

Just shy of two months old,  Bryce began having seizures and was
place on medication- this was his second hospitalization. Bryce vomited
often - possibly from the lesions in his brain and had to have a NG  tube
placed to aid in nutrition- this was his 3rd hospital stay.

We were told that the prognosis for Bryce was not good and he would most
likely not make it to his 1st birthday.
Bryce has a dairy allergy,  had eye surgery, and more surgery to remove some
potentially problematic nevi all while having a smile on his face. Bryce has followups
with all his specialists.

He is followed closely by a neurosurgeon,
neurologist, neuro opthamoligst, dermatologist and gastrointestinal team. He
is heavily researched since his condition is so rare.

This past May he had his biannual  MRI and it revealed he had a syrinx - a
fluid filled pocket at the base of his brain, and at the top of his spinal
cord. Before we could make a move Bryce was hospitalized with a shunt infection. He spent
a month in the hospital and within that month he had five neurosurgeries. He
had two seizures that caused him to stop breathing  and his heart rate go
through the roof. He had to relearn to walk as well as other skills.

In his follow ups, he seemed to be doing well, but in October he started to
become weak and off balance and  was re- hospitalized for more neurosurgery . He
was unable to walk for six weeks. In typical fashion,  Bryce worked
relentlessly to get himself up and going again. Bryce currently goes to Physical Therapy
and Speech Therapy twice a week.
He travels to Boston almost monthly for checkups, and takes medications
daily.

Bryce is a very happy boy and we are blessed to celebrate his 3rd birthday
this May.

​Bryce was recently diagnosed with a malignant brain tumor. He has had surgery to remove it and started chemo. We travel to Boston weekly for blood work and check ins.

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