In August of 2010 Vada began having a rare form of epilepsy called West syndrome or Infantile Spasms.
AUGUST 16, 2010
AUGUST 17 2010
AUGUST 16, 2010
AUGUST 17 2010
The seizures not only took over my sweet baby girl but they also consumed our family. For eleven weeks I gave my daughter daily injections of a toxic drug that in return stopped her seizures and for the last two year and two months she has been on daily doses of three different medications to maintain her seizure free "state of mind". (Its just been in the last couple of months that we were able to drop one of the three medicines.)
Tomorrow, Vada and I will be headed to SLCH to meet with her neurological doctors to discuss dropping (weaning her off) the final two medications and transferring her care back to Peoria.
I am both excited and sicktomystomach about this trip. I love this little girl so much and I never want her to have to go through anything that she has already gone through medically but especially with the seizures, again. I don't want them to come back and part of me wants her to remain on these last two medications until she is five, an age that is considered to be a safer time to not have the seizures reappear.
And yet, another part of me is wondering what she will be like off of the medications. I wonder if maybe she will sleep better or even talk more.
I just wonder.
I am both excited and sicktomystomach about this trip. I love this little girl so much and I never want her to have to go through anything that she has already gone through medically but especially with the seizures, again. I don't want them to come back and part of me wants her to remain on these last two medications until she is five, an age that is considered to be a safer time to not have the seizures reappear.
And yet, another part of me is wondering what she will be like off of the medications. I wonder if maybe she will sleep better or even talk more.
I just wonder.
During the last visit to St.L we were told to expect, if Vada remained seizure free over this period of time, that she would in fact be taken her off of her final two seizure medications. So I guess were about to find out what, if any, side effects she has been having while on them and what she is like off of them. Its crazy to think she might change a little and that the medications have somehow changed who she is really is suppose to be because of side effects. Truthfully, she is a strong little girl and I think that she has beat this.
But I do have a favor to ask, pass this along, ask for prayers and also pray for Vada, not just for this trip and appointment but for these next several months where she may be more susceptible to having seizures again. Ask God that it may be His will that she is finished with medical issues and that this can be the beginning of her enjoying her life as a healthy little girl.
Thank you.
3 comments:
We have walked this devastating walk with Miss Zoey as well. Our family has watched with sheer horror as our little love was robbed of her ability to roll. Her ability to sit.She lost all the milestones she had worked so tirelessly to reach. And the thing that saddened us most, is we lost her smile. We, in many ways, lost HER. Zoey is maintained now on one seizure drug. Her doctor at UCLA, a renowned expert on IS, wants to wean. It terrifies me. But I, like you wonder what she would be like with out that daily dose of haze. Would she emerge from some real or imagined fog? More then that, the fear of seizures returning, I wonder and worry about more.
Tonight I will say a prayer for both of us. For the same strength our girls have had to reach these days, and that we will find the wisdom and guidance to do what his best for our girls.
Tonight I will pray for your Vada.
Peace and prayers to you tonight and the days ahead.
Sending prayers your way.
I just read about IS on another blog, I truly did not realize so many children have this. You all are in my prayers
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