Today we met with Dr. Joel Thompson at the Primary Children's Neurology clinic. Jake has had two seizures 10 days apart which did not seem to have obvious triggers. Last week he had an EEG test that measures his brain wave activity and found that his right parietal lobe is where the seizures start. Now that he has had two seizures so close and because of the abnormal brain wave activity, the chances of his having more seizures is rather high. We decided to put him on medication that should help him not have anymore seizures. Chances are he could outgrow this. Hopefully....Now, I know that there are a lot worse childhood ailments that he could be plagued with than epilepsy. Let me just throw that out there right now. But right now I am struggling with accepting it and being at peace with it. I do not want my child to have to go through this. I don't like the helpless feeling I have that at any point he could have a seizure and maybe I won't be there to help protect him. As I am writing this, though, I realize that is the point of the medication. He has a significantly lower risk being on the medication than not. I feel like we are playing the lottery at times. Nothing is guaranteed. I am not mad at anyone, just frustrated that I can't control this. It's not like I can give him an antibiotic to treat his ear infection and expect the problem to go away. Until we know how the medicine will work for him, we will be holding our breath. And even if the medicine seems to be working, he could still have a seizure all of sudden, but his chances are a lot less. So, tonight, I am going to sleep next to him. That is the only way I have found comfort. When I don't sleep in his room, I jump up in the middle of the night at the slightest noise wondering if he is having a seizure, is he hurt? Is he choking?
So, this post is just me getting out my feelings. I feel silly that I am so anxious about this, but as Mike reminds me, it is normal, I am his mother. I am gonna worry. Don't worry about me or us. We are going to be okay. It's a little nervewracking to go through, but we will get through it. You just do it. We are so grateful for all the love and support our neighbors and family have shown and expressed. Offers to baby-sit, cookies and dinners brought over, phone calls to see how Jake is doing. Thank you, all! One of the greatest blessings that have come out of this has been the love we have felt from all of you.
We love you Kathryn and Mike. You are amazing and I am so awed by your strength. Know that you are not alone and you never have to be. We are totally here for you, even if you just need a friend to talk to. We love you guys!
ReplyDeleteYou will be in our prayers.
ReplyDeleteWhat a humbling experience - not having the control we crave to make things better, especially for our children. We're thinking about you and keeping your family in our prayers. Halaulani
ReplyDeleteSo well written out. I think that no matter what challenges our little ones are faced with, we have to have a period to mourn. It doesn't have to be the great big scary things, only. Anytime that something comes up which is a little different from our plan, we have to process it. I have experienced that with Sam. Sure, I'm beyond thankful that he is with us, and didn't have anything terminal, but it didn't mean that I don't still have moments of mourning and worry. And I totally relate to the control thing! I love to have full control of things in my life, and unfortunately, Heavenly Father wants me to learn to turn that over to Him. It's never easy, but you have a beautiful testimony and a lot of strength. I find blogging to be very theraputic for me, as well, and I do it often to express the whole range of emotions I have! You will all be in my prayers, and I'm so glad that you have answers.
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