We decided to have this blog to keep people updated about what's going on with Micah, and us, but mainly Micah. I have been sending email updates about every 3 or 4 months and will continue to do that for folks that forget about this. I'll try to post on this every couple of weeks or so.
Not a lot has changed for Micah in terms of seizures. They have actually gotten a little worse over the last few months. By worse, I mean greater in frequency and intensity. He has been on 3 times the amount of Vigabatrin than when he started and it hasn't seemed to make much of a difference. He hasn't been sleeping well in the last 2 months, often waking in the night for 2-3 hours. We haven't known why, whether it's teething, medicine, or otherwise. Thankfully the last week has been better. He has slept 5 nights without waking! So, much better for him and for our sanity!
Tomorrow we are going for a consultation about pursuing the ketogenic diet with him. It is something we have been praying about for several months. While it will be quite rigid and change a lot about how we do things, we feel it's worth a try if it will reduce his seizures and help him to develop at a somewhat faster rate. We will be meeting with a neurologist, dieticians, and nurses to see if they and we think Micah is a good candidate. We covet your prayers for discernment about this.
Micah is crawling a lot and getting into things he isn't supposed to! He's kneeling and grabbing onto the couch, which the PT says is the step before standing. And of course, he's still smiling a lot and laughing which is all more than he was doing a year ago! Last year at this time it was rare to see a smile once a week!
People have asked how I'm doing and I appreciate it. Honestly, the last 2 months have been difficult. I have struggled with being angry a lot and have cried a lot. Angry that Micah has Tuberous Sclerosis, angry that it keeps him from doing so much, angry that it has changed the course of our lives, etc. Yet, I'm learning that it's ok. I keep a journal and will often go back to see what I have written in past months. A few weeks ago I noted some things from a passage in a book I had read called 'Lessons I Learned in the Dark.' The author's talking about grief and she says "Releasing our sorrow to God doesn't lead to weakness; it generates supernatural strength. Crying never washes away hope into an ocean of despair; it helps cleanse the eyes of our souls so we can more clearly see the source of our hope."
The same day I had read Psalm 126:5 "Those who sow in tears will reap with songs of joy." Another version says "shouts of joy." It made me think of how I sometimes cry and weep over Micah and that one day I will reap shouts of joy because he is healed, either in this life or the one to come.
This is much longer than I anticipated. Most posts won't be this long...don't be scared!
Thanks for reading! Kelly