savannah
“Our minds raced to picture what our little
girls’ life would be like in the future. What
would this mean for her? What did we do
wrong?”
Stories of Hope
Savannah was born September 28, 2009 at 8:14 pm with lots of dark brown hair,
blue eyes, and very round cheeks. Savannah was also born with a lot of redness all over
her body along with some bruises, due to her being wedged between my pelvic area for
so long during the labor. We were able to see her for about 15 minutes, in an incubator,
before they transferred her to the NICU where we would spend the next 6 days. Over
the next few days we learned Savannah had glaucoma in her right eye, and the redness
all over her body was a port wine birthmark that would not fade like the bruises would.
I can remember the doctors sitting us down to tell us that Savannah had Sturge-Weber
syndrome like it was yesterday. Philip and I tried to hold back tears as the doctors
described what SWS was and how it may affect our little girl. Our minds raced to picture
what our little girls’ life would be like in the future. What would this mean for her? What
did we do wrong? So many thoughts and fears filled our heads.
The last year and a half has been a whirlwind of doctors, hospitals, and therapist
appointments. We finally seem to be starting to get settled in our own routine and
feel more comfortable with the decisions we are making for Savannah. She now has
glaucoma in both eyes. She has had 2 right eye surgeries and 1 left eye surgery. And at
the present time her pressures have been fairly stable since October 2010 with Cosopt
and Xalatan eye drops. Savannah started having seizures when she was 4 months old.
We have worked with her neurologist closely, but we still continue to see seizures occur
every couple of weeks. Thankfully we are only seeing 2-4 seizures a month right now.
Savannah takes Trileptal, and Felbatol. Savannah also has hypothyroidism, which she
takes Synthroid for. We have OT, PT, and speech therapy once a week. Since we started
OT, the therapist found Savannah to have sensory integration issues. So we use different
sensory activities to “wake up” her left side, because of the weakness she has on her
left side. We have to stimulate her body by different activities to get her to eat a meal. If
we don’t, she will not eat. Savannah has had developmental delays from the start. She
didn’t smile until she was 4 months old or laugh until just 20 months. Savannah is now
saying mama, dada, and baba. She has been sitting since she was 14 months old.
Savannah likes to smile, to babble and roll across the floor. She absolutely adores her
big brother Conner and her daddy, and will do anything she can to get their attention.
Every child is a wonderful blessing, but until you have a special baby like Savannah,
you may take for granted that first smile at 6 wks or perhaps their first word or even
perhaps the knowing recognition of family. Savannah is our daily reminder to us to take
one day at a time and to take each precious day slowly. We know we may have several
challenges in front of us, but we will face them with her. Savannah is our beautiful
little girl.
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