Sunday, November 26, 2006

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

11 comments:

amyrosedouglas said...

My friend Kelly, I am thinking about you all and continue to pray for you in this.

I haven't seen pictures of Micah I don't think. He's so precious! Put more picures on here!

I love you!

madcapcouple said...

You are awesome Kell-ee! We love you and don't you worry about "writing too much" because those of us who love you want to see your soul!!

PEYTONS said...

Thank you so much for including us on your blog list! It was so great to see pictures of you and your boys! You are a beautiful family and we will keep you all in our prayers. Please keep your blog going for those who love you!!!

Anonymous said...

Wayne and Kelly, what a big blessing to receive this blog on your family. Micah has such a big spot in my heart and I love to get any news I can about him. It does keep all of you fresh in our prayers and how we should pray. Kelly, my heart goes out to you. God made mothers extra strong with endurance. I read this the other day. Psalm 141:1 O Lord, I am calling to you, Please hurry! Listen when I cry to you for help!
Love, Jana

Paula said...

Hello two tall and one small womacks!!! This is your Aunt Wilma in Missoula saying "hello" and that I love you all. Thanks for sharing your heart, Kelly and know that you are an amazing and wonderful woman!! Wayne, you're not so bad either :). Micah, my dear nephew, I love you with all my heart and am so looking forward to experiencing the journey of your life as you grow to be a wonderful man!!! I am smitten with you my dear one!!!!

Tiffany said...

hello love - you are often in my thoughts and prayers. please let me know how i can help. call anytime!

Leah Samuelson said...

Wayne and Kelly: Thank you for this idea and for including us in that!!!! This picture of Micah makes it so hard to believe that there is ANYTHING other than perfect about his health. Hold on to that in case it IS a "sign" of some sort. I KNOW that these nights without sleep have to be hard on ALL of you. May your new steps to ways to help with diet and healing of some symptoms be ones that will guide you to knowing what to do there. BLESS YOU!!! Thought about you on your birthday, Wayne!!! Godspeed, always.

gary said...

You might notice the time..I can sympathize with you on the sleepless nights. My worries are rendering me helpless. I sure do miss dropping in from time to time. I wish I had something brilliant and uplifting to say, but all I can say is I love you all.

Tarimisu said...

My love is with you too. And my eyes are crying tears with you. One day we will all shout for joy! I love all three of you very much.

sarah said...

Hey Kelly, I miss you and my heart is with you. I am praying for you always. Love, sarah

Missouri Family said...

Dear Cousin Micah,

All of your distant relatives here in Springfield, MO are wishing you a very happy birthday. We love you and look forward to seeing you next time you're in Oklahoma. Tell your parents hello from us!

Love,
Wes, Shari, Mary, Allison, Ryan, Heather, and Holly.