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April 9th, 2007

Virgin Post

This is so weird...

I've had this account for almost three years, mainly so I could post Kona's puppy picture to baaaaabyanimals. But I think now is as good a time as any to use this medium as it should be used. I don't know who will read it, but that's okay. I need an outlet these days. Life has been very difficult for the past few months, mainly because Alice was just diagnosed with cerebral palsy. The neurologist attributes the injury to her white matter to a lack of blood or oxygen early in the womb, but no one can know for sure what caused it. Doctor upon doctor has told me that her injury could not have been avoided, and there was nothing that I did that caused it. Still, I can't help but feel guilty sometimes. Cognitively, she is right where she should be. She smiles, laughs, and has even started squealing with delight when her daddy blows fart kisses on her cheeks. She coos and babbles nonstop at all different octaves-her method of communication for now. She tracks objects, recognizes faces, is unsure of strangers, and absolutely loves music. But physically, Alice is incredibly delayed.

But I don't want what she can't do to be the focus of this journal.

Because of the miracle of stem cells, there is hope that Alice will lead a near normal, if not perfectly normal life-as far as physical development goes. We have met with Dr. Kurtzberg at Duke Medical Center to discuss the possibility of an umbilical cord stem cell transplant last week and are now waiting on the results of a blood test that will screen for genetic disorders. If all goes well, we will have the SCT in as early as three weeks! Her paternal grandfather made the decision to bank her umbilical cord blood, mainly for the hope that stem cells could one day repair his spinal injury. We never thought we would ever need it for Alice, but here we are nine months later, holding the key to her possible cure.

The waiting is the hardest part. And the uncertainty. The stem cell transplant for cerebral palsy is still very much in its infancy. Dr. K is the only doctor in the United States who is willing to perform the transplant. There are doctors in other countries who perform similar procedures, but the methods are far more dangerous and experimental. So far, Dr. K has performed seven SCTs on patients with brain injuries and the parents of all seven children have noticed significant changes. This gives us great hope, but we are trying desperately to be realistic and not let our excitement shape our decisions. Luckily, the SCT couldn't harm Alice since the stem cells belong to her. The worst thing that could happen is nothing, and all we would lose is money.



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