Thursday, May 20, 2010
What do Michael Jackson, Masquerade, and a Ladybug Have in Common?
Caleigh Faith Briley, that's what. She is all set to light up the stage Saturday evening and again on Monday evening. She will be dancing, singing, and being her wonderful self. So who's stressing? Uh, Mom. See my posts from one year ago for a reminder of how much I DETEST all the stuff leading up to Saturday night's recital. I'm less stressed about Monday night, but still. On top of everything, Russell will be out of town Monday through Wednesday. Ugh. I had this deeply moving post all set in my head for tonight, but I think I'll save it for tomorrow. Because this day has left me exhausted and longing for my bed.
Wednesday, May 19, 2010
I know, I know...THIS IS LONG. My Apologies.
I decided it would be easiest to report on Caleigh's appointment here. First of all, thank you so much for all the prayers. Those prayers got us to Houston, around the medical center, and out of Houston without a hitch. That in itself was quite an accomplishment. Everyone we dealt with from the hotel to the hospital amazed us with their helpfulness and kindness. It all matters when you are already stressed and worried. I know, I'm not supposed to worry, but I seem to get caught up on being human sometimes. Here we go...
Caleigh has been diagnosed with medically intractable absence epilepsy. Meaning--she has epilepsy that is not responsive to medication. She had over 30 seizures in ONE HOUR this morning. The doctor calculated that she is probably having at least this many most hours of the day rendering her unconscious for one hour each day of her life. Crazy. He was astonished that she makes all A's and does so well in school and life in general. He said it is a testimony to her hard work and determination...she is one tough chick! There are only three medications widely used for her type of epilepsy and all three have failed for her. So we are going to now try a couple of medications NOT widely used for her type of epilepsy and see if she responds to those...if not, we will schedule surgery. She is not a candidate for brain surgery (where they remove the part of the brain responsible for the seizures) because it is her entire brain that is involved. What they will do is implant a vagus nerve stimulator in her chest, much like a pacemaker, to eliminate the problems. For now we have quite a job of titrating her off one of her current meds and instating one new one. This is easier said than done--but it will be fine. We also pray (you all can help!) that she does not develop grand mal seizures or drop seizures as some with this condition do...AND we pray that she outgrows the condition altogether in the coming years, which is very possible.
I will add also that Russ got his reports back from the testing he had regarding his memory and we have a bit of a struggle ahead for us there as well. The neurologist wants him to get neurocognitive therapy--not a bad thing, but one more thing to deal with. Basically the doctor explained that his recent illness, treatment, and the stress therein have possibly reinjured his brain. He is scheduled for MRI's etc in the coming days. I think I should just buy my own hospital...what do you think?
Sorry again that this is so long. Thanks so much for the prayers.
Caleigh has been diagnosed with medically intractable absence epilepsy. Meaning--she has epilepsy that is not responsive to medication. She had over 30 seizures in ONE HOUR this morning. The doctor calculated that she is probably having at least this many most hours of the day rendering her unconscious for one hour each day of her life. Crazy. He was astonished that she makes all A's and does so well in school and life in general. He said it is a testimony to her hard work and determination...she is one tough chick! There are only three medications widely used for her type of epilepsy and all three have failed for her. So we are going to now try a couple of medications NOT widely used for her type of epilepsy and see if she responds to those...if not, we will schedule surgery. She is not a candidate for brain surgery (where they remove the part of the brain responsible for the seizures) because it is her entire brain that is involved. What they will do is implant a vagus nerve stimulator in her chest, much like a pacemaker, to eliminate the problems. For now we have quite a job of titrating her off one of her current meds and instating one new one. This is easier said than done--but it will be fine. We also pray (you all can help!) that she does not develop grand mal seizures or drop seizures as some with this condition do...AND we pray that she outgrows the condition altogether in the coming years, which is very possible.
I will add also that Russ got his reports back from the testing he had regarding his memory and we have a bit of a struggle ahead for us there as well. The neurologist wants him to get neurocognitive therapy--not a bad thing, but one more thing to deal with. Basically the doctor explained that his recent illness, treatment, and the stress therein have possibly reinjured his brain. He is scheduled for MRI's etc in the coming days. I think I should just buy my own hospital...what do you think?
Sorry again that this is so long. Thanks so much for the prayers.
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