Monday, August 29, 2011

A Dose of Honesty

Recently, I received a Facebook message from a family who was considering adopting a newborn baby with Aicardi Syndrome. I don't know why the biological parents were giving up their daughter. Perhaps it was a decision they made before they realized this baby would have medical complications. Hopefully, it was not a decision made after the fact.

It struck me as amazing that there are people out there who would actually VOLUNTEER for this life. I came to the conclusion that this family must be truly special to accept a child with such severe special needs. As hard as it is to admit, if given the choice, I honestly can't say I would do the same.

It doesn't mean I don't love my precious Sadie for the special little baby she is. However, as she gets older and her disabilities are more visible, I struggle with how to respond to questions about her. After seeing Sadie in her baby wheelchair with an oxygen tank and pulse oximeter underneath, a man in the store asked "What's wrong with her?" I was taken aback. He likely was not aware of the insensitivity of his question. I stopped in mid-aisle and stood there for a few seconds, unsure of what to say. I finally uttered quietly, "Oh, she just needs a little oxygen," and scurried away before he could ask anything else. After thinking it through, a simple explanation "She has a rare neurological condition called Aicardi Syndrome," would have sufficed.

We did not ask for this life. Sometimes I feel like the deer-in-the-headlights cartoon character who is the only one in line who didn't take a step back. When people say "I don't know how you do it." I simply respond, "She is my daughter. You would do the same."

For the past few days, Sadie has been off the oxygen. She needed it, again, for a few weeks post-hospital. We have also seen some improvement with her seizure activity after a recent Dilantin increase. However, she is restless, not sleeping, and not eating very well. (Which means Mommy and Daddy are averaging about 4 hours of sleep a night.) If it's not one thing, it's another.

As for this special family and their unselfish desire to adopt this precious baby, the biological parents ultimately chose another adoptee family for the baby. I can only hope this special child went to a family who will cherish her for the beautiful angel she is.

Monday, August 15, 2011

In The Weeds

As a former waitress, when things were starting to spiral out of control, you'd say that you were "in the weeds." If you were lucky, coworkers would help out until you were in a more comfortable place.

We're on week three of Sadie's ACTH treatment. While the steroid seems to have gotten Sadie out of her every-five-minute-seizure-pattern, she is still "in the weeds." We've gone from seizures every five minutes to seizures every fifteen minutes - still not a great place to be. You know things are bad when medical professionals (epileptologists, even) look at you in amazement when you tell them the number and duration of seizures she has, as well as the numerous medicines and treatments she is on.

We've started making some slow changes with her medicines. We're finally starting to wean her off of Vigabatrin - a medicine she's been on now for a year. The jury has always been out on Vigabatrin. We initially thought it was making things worse, then after a few weeks, she got better...but she had also started the ketogenic diet around the same time. Of the four seizure medicines she is currently on, Vigabatrin has the most severe side effect - potential vision loss - and with Sadie's existing vision impairment in her right eye, it's the logical choice to start weaning first.

On a parallel track, we've also started testing to determine whether Sadie is a candidate for brain surgery. After talking with few other parents of children who have undergone hemispherectomies, we've started an initial conversation with Cleveland Clinic, who has a great epilepsy center and neurosurgeon who specializes in the surgical procedure.

In Sadie's situation, we have epileptologists, pediatricians, dietitians - all helping to get Sadie out of "the weeds." But no matter how hard we tug, we just can't seem to get her to where she needs to be. We'll simply keep trying.