There's not a whole lot to be said about this visit, which is not something I am complaining about!Vada's blood work from last week showed that her Methalmalomic Acid level had increased, which we expected. Next weeks reading, from this weeks labs should show a decline. That's our hopes. IF they do go down, then we know that the L-Carnitine and the B12 injections are doing the job. IF not, well, then I don't know. I would assume that we would continue for a bit longer before we call it quits, considering that this up coming level results would be the results from only one week of of being on the L-C and the B12.
Her blood draws went much smoother this time. Only three pricks and four vials of blood. That's relieving compared to the five pricks and eight vials from last week!
Vada's weight and measurments all seem to be doing well. Sure she's sporting some chipmunk cheeks, but other than that, shes doing very well.
We are starting to wean Vada off of the ACTH. Starting tomorrow I drop her dose from 5ml to 4.5ml. Every couple of days i'll continue to drop the dosage until finally there is nothing to wean her off of.
Were looking at the first week in November to be completely finished with the ACTH. She will still be on Keppra, which is also a anti-seizure medication, but it is nothing compared to the ACTH. If she is able to maintain no seizure activity without the ACTH then she should be able to be in social settings again sometime in January, maybe February. That, however will depend on her and the types of social settings. For now, its still a non-issue.
Weaning Vada off of the ACTH is a double edged sword for me, and rightfully so. She needs to eventually get off of it. There's no doubt there. The longer that she is on the steroid, the higher the chances are of long term side effects occurring.
When we first started her on ACTH I was really looking forward to her being off of it. Like that day, I was ready. However, now that I am weaning her off, I am frightened at any gesture or even sound that is similar to anything she may have done when she was having the seizures.
Since Vada has been on the ACTH I have watched the two video's that I took of her having her first seizures at least a hand full of times. I know that from an outside point of view that they don't look like much. However, they are devastating. The damage that these types of seizure can create can be irreversible. To me, Vada has enough to deal with. Her road has been paved with a rocky surface. Much like any other child, as a parent I don't know what her future holds. I do know to expect set backs and delays, and in some areas not a full function of certain abilities. The thought of something coming in and damaging areas that could already be damaged or delayed tears at my heart, especially since I have no control over it.
I find myself begging God on an daily basis to not let the seizures come back, or to change into something worse. I ask for him to let this be the end, like he has done for so many other children who have had to go through this. I casually have conversations with him letting him know that I would really like to move ahead now.
For every negative thought I reinforce it with a positive one. I actually verbalize the positive thoughts out loud. I personally need to hear them, but only if they are coming from me. I think that if someone else were to continue to spit out these random positive words of encouragement as much as I do, I would probably want to smack them. Yes, I am that annoying.
I am trying to never let anything come out of my mouth that makes me sound as if I am complaining. I try not to mentally complain either, however that's a bit harder to control. I know that it sounds absurd, but, I am afraid to complain. I am afraid to be weak. I don't want God to think that I am ungrateful. I love Vada and the family that I have been given. I think God wants me to look at what I have and really see it for what it is. I do and I am.
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