Sunday, May 23, 2010

Post-surgery update

The baby continues to recover very well from his surgery back on April 13th. This Tuesday marks the sixth week since his brain-skull surgery. So far, Tito has had two visits back to Seattle Children's for follow-up care. The craniofacial surgeon is pleased with how Tito is doing. Tito is on track as far as the healing of the head is concerned, which will take 1-2 years to heal completely.

The left eye continues to have problems. As a result, we will find out this Wednesday morning, May 26th, whether Tito's eye doctor in Spokane will recommend sowing Tito's eyelids shut on the left side. The cornea has drying damage. The cloud has worsened over the cornea, which has become vascular as blood vessels try to heal the damage.

Also, we return to Seattle Children's soon for a follow-up visit with the neurosurgeon as well as another MRI of Tito's brain. The neurosurgeon and Tumor Board will start monitoring the portion of tumor that remains on the left side. The doctors were unable to remove it completely since it involves too much of the dura. The tumor is a benign neurofibroma related to the baby's NF1. We are aware that these neurofibromas tend to grow back, though the doctors leave them alone unless they start to cause problems again.

Thank you for ongoing prayers and support as worries sometimes loom.

Saturday, May 8, 2010

Ode to my Mama

Ode to my Mama
by Ernesto Tinajero II, (baby Tito) for my mama’s second Mother’s day

 (Okay, Papi help a little to write the poem)

I learned the meaning
Of mama before I could
Say the word. You sing to me
The hymns you compose for me.
Your song sings
Of love, God and me,
Your baby. You answer

my calls of the night,
of the terrors of time, space
and hunger with food
and the warmth
of your lap. Mama,

the word taste good
as I struggle to speak.
It is best to learn
the meaning of some
words before being
able to say them.

Words like love,
God and Mama.

Oh, Mama, mama, mama