Some of you are aware that we are starting the ketogenic diet with Micah in less than two weeks. He will be hospitalized from the 26th-28th at least if all goes well. Some are surprised that it requires a hospital stay, so I will briefly explain. The diet requires a 24 to 36 hour fast so that the body can prepare to burn fat rather than glucose. So, Micah will be monitored closely and Wayne and I will be there with him (of course). The diet is high fat, low carb, low protein, no sugar and is a rigid, mathematically calculated therapy in which we will be weighing food to the gram. We will be learning how to administer the diet there with the help of dieticians and Drs.
We tried increasing the dosage of medicine (Vigabatrin) by 4 times, per Dr.’s instructions. That was in December and we have not seen much change at all in Micah’s seizure activity. So while we are not sure what to expect or even if this diet will help, we believe it is worth a try, especially if it will reduce or greatly lessen his seizures. Oftentimes, kids who see success with the diet start taking off and progressing rapidly in development. So, we covet your prayers for this. We will be updating you more frequently and will remind everyone before the diet starts.
Micah turns two this Saturday! Can you believe it?! He shares St. Patrick’s Day birthday with his first cousin Harrison who will be 6! Although we wish we could celebrate with all of our family, we are having a treat in that Paula and Janel (Wayne’s sisters) are coming to visit and celebrate Micah’s birthday with us.
Speaking of birthdays, I enjoyed my birthday present from Wayne this weekend. No, my birthday wasn’t this weekend, it was February 1st, you slackers who forgot. Just kidding. So, my gift was going to the Deeper Still Conference which was 3 incredible women Bible teachers Beth Moore, Kay Arthur, and Priscilla Shirer(she’s Dr. Tony Evans daughter for those who don’t know, I didn’t). And she sure is a powerful preacher, er, speaker I mean...whatever that woman preached! Actually all three did! The conference was in San Francisco, Friday night and all day Sat. There were nine thousand women there and maybe 3 men, ok there were a few more men than that, but not many. The worship team of Travis Cottrell and others was incredible. Although I live 15 minutes from the city, I went with two friends and one of them wanted to treat us to a hotel in downtown SF which was fun. So Wayne had Micah by himself Fri and all day Sat and he did fabulous, not that I expected otherwise, he’s a great Daddy!
Ok, so let me tell you what I learned, I took several pages of notes and will now quote them here. Not really. Every session was great, Priscilla was Fri night, Beth Sat morn, and Kay Sat afternoon and they all spoke from an hour and a half to 2 hours. The point that got to me most was when Beth was sharing and she said that there are times in our lives in which we need to “move past our devastation with God”. She had been sharing a story about a friend of hers who is 12, with down’s syndrome and how last year she was diagnosed with Leukemia. Well as soon as she starting sharing about her, my eyes began to fill with tears because any story about a special needs child stirs that in me lately. Beth talked about how we just want to ask God “Why?!, Why did you do that, allow that,etc?” She went on to remind us that we may never know why but need to trust that there’s a testimony to come and as crazy as it might sound, to be glad that God entrusted something hard to us.
It was one of those moments I knew God was speaking to me. I have been devastated (especially in the beginning) and frustrated with God in the past year and a half, wondering why he allowed Micah to have Tuberous Sclerosis, knowing He could have prevented it. I feel like I have allowed joy to take a “backseat” in my life, often wishing things were different. So, now I am praying for God to help me accept it (didn’t I already accept it? Ok maybe not), to have joy and to be the godly Mom Micah needs.
So, if you read all that, you get the prize. Don’t know what it is, but I’ll tell ya later!
2 comments:
Yes, Kelly, we all ask the questions that have no answers YET. You've also asked the other questions that do have answers and you have answered well. Questions as: How do I respond? How can I allow God to be glorified in this? Never doubt you are a wonderful, godly mother, even with the struggles. We all have more to learn as we walk this path with you. Cec & Kar
Thanks for sharing your heart Kell-ee and know that we will be praying for Micah in the coming days as you begin the diet. We are hoping that you all do well in the first days in the hospital and the transition will be as painless as possible. WE love you guys!
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