So Far, So Good!

It's been over six weeks since we started Raquel's medication wean, and I have to say that we've noticed very encouraging changes.  I love my girl!!! :)

For starters, she's more present, more alert, seems happier, more playful.  No increase in seizures - but no decrease either - pretty much the same in that regard but I'm taking that as a positive sign since we're reducing meds.  Miss Crystal - her teacher - noticed over summer school that she was more attentive and able to stay on task for longer periods of time. Again, more great news!

On the downside ... she is very unstable on her feet.  Her balance at times is so bad that I need to walk behind her to make sure she doesn't get hurt.  But it kind of seems she's more alert and trying to move faster and her little low-tone legs can't keep up and she trips over herself.  I pretty much have to keep an eye on it and see if a pattern develops. We have no replacement for Dr. Mower at this point, so by the end of the month, I plan on talking to him again before he leaves and finding out what his med wean would be if all continues to go well, and what he'd like to do if an increase in seizure activity occurs.  Need to cover all bases here.

I have to say that I love my email support groups.  A lot of posts are anonymous so I don't know who or where they are coming from.  I was so touched the other night by an email post, and I have thought about this man ever since.  I guess it's okay if I copy some of his post since I can't ask him for permission:

"Having a special needs child is probably one of the most difficult and most rewarding things we will ever experience in our lives.  It is especially difficult when our children seem to be developing normally and our problems in life are no different than any other parent with a child/children of similar ages.  And then everything changes. Sometimes suddenly with a grand mal, and sometimes slowly with a hint of a drop, or a night time tremor, or a brief stare into the distance as if asleep and yet awake.  And then the nightmare begins!

Tonight my little girl is sleeping peacefully. My wife is chatting on the phone with a friend and laughing, and I'm typing this because I have a few peaceful moments to share and relate.  Moments like this are rare in our life as they are with most of you.  However, the moments have become a bit more common. Slowly but surely we are enjoying evenings with a little less stress, not quite so many trips to the ER, and not as many sleepless nights dealing with the side effects of the diet, nausea, acidosis, etc.

We all know the difficulties of dealing with a child with a seizure disorder. We all have dealt with the difficulties of dealing with all of the different meds and their side effects and we all are experiencing the side effects of the ketogenic diet. But many of us have or are beginning to see the benefits of the diet. What a miracle it is to see our children coming back to life, re-learning those things that they lost over a period of time due to the effects of frequent seizures and/or side effects of anti-seizure medications that all too often do more harm than good. 

So I'm sitting here tonight and for a moment I am able to count my blessings instead of the hardships. I am recalling the pleasant moments of the last two years and blocking out the frequent hospital visits, EEGs, trips to the labs, etc. etc. And for this brief moment tonight, it is all so clear to me just how much our little girl means to my wife and myself. And tonight I am saying a special prayer for all of our children as well as the parents and caregivers, that we can find the answers that will end the countless hours/days/months/years of pain, misery, and stress that this awful affliction adds to our lives..."

I don't exactly know what struck me so hard about this email, maybe just the pure rawness of it. For him getting peace from his wife being on the phone and laughing with a friend - instead of crying - spoke volumes to me. I don't remember when Mike has heard me laugh with a friend for a long time, and that must be hard for the man of the house dealing with things - like seizures, a special needs child - things that are completely out of their control.  He must feel as helpless to me as I feel to Raquel.  So maybe the next time Mike asks me what he can do to help, instead of saying my usual, "Nothing...", instead I should ask for a hug. :)

Have a great night everyone.  I plan on making the best of it!