Daniel Lyman was born August 10, 2008. He was small but came into the world with a
fighting spirit. He is our fourth child
and the perfect caboose. Daniel was a preemie. After what felt like forever in the NICU we
were excited to get to take him home. He was born perfectly healthy, just early
(we thought), but as time went by I noticed things were not quite right. He wasn’t growing, he was always getting sick,
it was a constant fight to keep him out of the hospital and he was not meeting
any milestones.
Around 9 months the
pediatrician finally ordered a head CT. When that came back abnormal we were sent to a
pediatric neurologist, who immediately ordered an MRI. I will always remember sitting in that
neurologist’s office holding my son who was about 11 months and being given the
results. He was diagnosed with unilateral
Polymicrogyria (PMG), which is a rare brain malformation. If we break down the
word Polymicrogyria, “Poly” means many, “micro” means very small, and “Gyria”
is the medical term for the bumps or the deep wrinkles in the brain. So out of
that big word we get “many very small wrinkles in the brain”. PMG occurs in utero when the brain is forming. The wrinkles or gyri of the brain, being too
small, are unable to process information correctly depending on the severity of
the malformation. PMG is suspected to happen in about 1:2500 live births.
Ninety percent of patients with this diagnosis have or will have seizures in
their lifetime. Every person with PMG is
affected differently depending on various factors like, where their brain is affected,
how much of the brain, the severity and if PMG comes as a solo diagnosis or
with others. One of the hardest parts of
the diagnosis for us has been the unknowns.
Because of this, we made a choice to get Daniel all the help we could. He has been in speech, behavioral,
occupational and physical therapy. We
have tried to treat him as normally as possible and this has really helped him
develop.
For Daniel the
diagnosis means the whole left side of his brain is affected, and he started
having seizures around 15 months. Here
is the part that I will never forget: I
was holding my son who was pretty much a vegetable, and the Doctor said “this
is as good as it gets,” and offered to give me phone numbers for care centers.
We were told by more than one doctor that he would never walk or talk, or
progress past where he was at the time of diagnosis.
Having Daniel in our home and part of our family has been the
biggest joy and blessing we could have ever asked for. Daniel has a laugh that is the greatest sound
in the world. He laughs with his whole body and soul. He learns on what we call “Daniel Time.”
Nothing comes when you want it to or when the world wants it to but he gets
around to learning things when he is good and ready. Daniel has global delays
and learning new things is really hard for him, but that does not stop him. He
walks, really he runs everywhere he goes, and is very happy! He talks, and just finished kindergarten at
Spectrum Academy, where he learned to write his name, which is another thing we
never thought he would do. His whole
life he has been proving every doctor wrong. We were overjoyed this month when
he finally decided to potty train and did it in one day! We as a family learn more from Daniel then he
will ever learn from us. He is our Superhero!
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