EEG results pending, hopefully by Friday we will know more than we do now. I don't claim to be a neurologist but I can tell you that from observation alone, the medications the doctors have my son on are not doing the job!! Though his seizures have been minimized to 1-2/day, they are still happening. Each time a seizure occurs, we are on baited breath hoping that he can persevere through!! Thank God & the angels above, he has!!! I have also noticed that when 1 type of seizure is controlled, another one pops up that wasn't present before. I've also learned, from other mothers who have children who are afflicted with seizures(and some at 100x/day), is that there isn't always a medicine to prevent the activity. What baffles me most, is that there is so little known about the human brain & the central nervous system. This vital organ controls everything we do, why is it that we know so little about it?
Monkey has had some really great days!! He has been doing well with his PT & OT!! Today he was being so sassy to Lisa, it was actually quite comical!! She was doing a stretch with his arms today & he was babbling away (almost growling at her) When she would stop, he would let out a huge sigh as if he were saying, I'm over this lady can't you see I'm tired?!? Our therapists have such an amazing bond with our son, as well as the nurses who help us care for him, Kris & Kim. I tell you what, the Pallative/Hospice Team @ St John's are truly amazing (:
In such a short period of time, our lives have changed so drastically but yet so much remains the same. It's funny how life can change so quickly. To be given this path, I know that there is a reason for it!! As much as I wish it wasn't my first born angel having to experience this, I believe in my heart that we WILL be the ones that help other children out who are afflicted with the same disease. Our son is such an amazing soul & gift from God, I tell you that much I know for certain!!!
If you know me, it's rare that I'm at a loss for words or have difficulties speaking my mind. Since 8/1 & through this 7 week journey, I find what once came so easy for me is now so challenging. So many have reached out to us & those who have specifically reached out to me, I want to THANK YOU & also let you know that I find so much strength from your words of encouragement & my heart fills with warmth!! I haven't been good at keeping up with calls/emails but I hope you can understand why. God has blessed me & my family in so many ways & I'm heading to bed right now to thank him again for those blessings!!
With all of our love, we thank you for helping us spread the word & fight for our son!! xoxoxo The Torpey Family
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