I've been asked quite a lot over this last week, how Vada is doing and in regards to her health how I am dealing.
It's been emotional, to say the least. I have kind of emotionally shut down. It's what I do when things become too hard to handle. I feel kind of like a robot. I don't necessarily like it but it's something that I have done since I was a child and kind of automatically sets in. Sometimes I wish that I could just cry it out and other times I am glad for this particular coping mechanism. My feelings come out later, when the moment has passed and I can breath again or at night when I have a moment to myself to reflect.
I pray that this moment, this bump in the road, this set back does pass, unfortunately, thus far, it has not. Vada is still having seizures just not as many as she was having two weeks ago. I think that the increase in her medication has helped, somewhat but overall has failed it's purpose of controlling them. Justin and I were discussing things this morning and we both agreed that we never actually thought the increase would work. We had just hoped to be wrong.
I called Washington University in Saint Louis, where Vada's Neurologists are now located and I left them a message. Were waiting on a response.
I have a couple of thoughts on what may happen but wont know for certain until I have actually spoke with the doctor. They may increase her already prescribed medications again. They may give add a new medication(s) or they may request for us to come back to Saint Louis. Before leaving last week we were told if we couldn't get them under control then we would need to come back for a longer (24-72 hour) VEEG. We had only had a one hour EEG last time.
Ill update more when I have anything new to tell. Thanks for everyone who has checked in and sent their prayers. We appreciate it!
It's been emotional, to say the least. I have kind of emotionally shut down. It's what I do when things become too hard to handle. I feel kind of like a robot. I don't necessarily like it but it's something that I have done since I was a child and kind of automatically sets in. Sometimes I wish that I could just cry it out and other times I am glad for this particular coping mechanism. My feelings come out later, when the moment has passed and I can breath again or at night when I have a moment to myself to reflect.
I pray that this moment, this bump in the road, this set back does pass, unfortunately, thus far, it has not. Vada is still having seizures just not as many as she was having two weeks ago. I think that the increase in her medication has helped, somewhat but overall has failed it's purpose of controlling them. Justin and I were discussing things this morning and we both agreed that we never actually thought the increase would work. We had just hoped to be wrong.
I called Washington University in Saint Louis, where Vada's Neurologists are now located and I left them a message. Were waiting on a response.
I have a couple of thoughts on what may happen but wont know for certain until I have actually spoke with the doctor. They may increase her already prescribed medications again. They may give add a new medication(s) or they may request for us to come back to Saint Louis. Before leaving last week we were told if we couldn't get them under control then we would need to come back for a longer (24-72 hour) VEEG. We had only had a one hour EEG last time.
Ill update more when I have anything new to tell. Thanks for everyone who has checked in and sent their prayers. We appreciate it!
3 comments:
Praying for you all. She is a doll. Hug her for me :)
I'm so sorry! We have a neuro appointment on Thursday, he'll turn up Jax VNS. But I'm concerned that it, like everything else, is not working. I still see as many seizures as before, and when I swipe the magnet, a lot of times it does nothing. Seizures is such a frustrating road to travel. I will cross my fingers that neuro has a good plan for miss Vada!
praying for Vada and your family.
Post a Comment