I am ready to share more about our visit to the epilepsy clinic last week.  I have something really big to share.  I feel like I should whisper when I say it, even though it is not a secret..........We are beginning to eliminate Angie's last seizure medication.  Verrrrrrry slowly.

I have decidedly mixed feelings about having our girl without any seizure protection at all, but I agree with the doctors that it is time to try.  We will taper her dosage down over the next 2 months and if there is any sign of seizures, we will change the plan.  Angie has always lead the way in the past and I have no doubt that she will show us what she needs this time too.

Seizure medications have side effects and they can be really detrimental.  This particular drug causes agitation and cognitive delays. Who needs that?  There can be long-term effects on body systems, also, and Angie has had a boatload of drugs in her system over the past 5 years.  Why not try?

I have been asked if we will have Angie's g-tube removed if she is able to stop taking seizure medication.  The honest answer is, I don't know.  The medications, the g-tube, the special bed, the human supports we have in place, the many specialists and therapists- these all provide security and each layer that is removed leaves us a little more vulnerable to the "what if?".  To be sure, I am living less in the "what if" than I did in the past.  The days of keeping an overnight bag packed and a full tank of gas in anticipation of a middle-of-the night trip to the hospital are long gone.  The mind does not forget, though.  Sturge-Weber syndrome is a progressive disorder.  We have experienced a reprieve from the very worst outcome so far, but we are aware of the continuing risks.

What to do?  For now, we will just bask in the everyday wonder of this child and her miracle.  We don't have any decisions to make today that cannot wait for tomorrow. We have six healthy children and who could ask for more?  Our family is renting a home at the coast this weekend and all six of our children will be under the same roof overnight for the first time in years.  What more could a person ask for? We are elated and decisions and worries can wait.

I am going to end this most serious post with a few pictures of our adorable little elf from the Kindergarten Christmas program last week....