Thursday, September 16, 2010

A New Chapter.....

There is probably a correlation between my stress level and the amount of time that passes between posts. The past few months have been full, to say the least. Reese had a tough summer, with increased seizure activity. We fiddled with her diet, fiddled with some meds and she still stayed around 4 seizures a day. So after much prayer and contemplation, we decided to start Vigabatrin. This is the med we said no to 2.5 years ago. It is probably the most effective med for Infantile Spasms but it also comes with some risks. The biggie is a 30% chance of peripheral vision loss. We started the med yesterday, and I have to say, it was very difficult. She was not herself, crying more, and seemed agitated. But she has not had a seizure since we started. All of these decisions are hard, but this has been one of the hardest. I feel like I am on a pendulum swinging between 2 horrible outcomes...continued seizures and possible vision loss. And maybe a third...agitation and a different Reese. My prayer is three-fold: that the seizures would be controlled, that her eyes would be protected, and that she would feel good.
One other piece of news...Reese's labs came back from the "Stim" test we did a few weeks ago. They show conclusive Growth Hormone Deficiency. I have not had time to think about it in the midst of everything else. We see the endocrinologist next Thursday to set a plan to treat it. We will cross that bridge...
God has us in His hand and He has given us HIS peace. Makes no sense, but I am so grateful. How amazing it is to have a personal relationship with the Creator--the One who placed the stars in the sky and knows them by name.


  1. Thank you for sharing your journey with us. We are in awe at how God is working in your lives even in such hard circumstances. Praises to Him!!! We will continue to pray for sweet Reese and your wonderful family.

    Kathy for all the Moore's

  2. What a testimony to the grace of our Lord Jesus Christ. Thank you for the update. I am so glad I checked for a post!!! We will be praying for Reese as she begins this new treatment. May God's perfect will be done!!!
    Love to you and your sweet family!

  3. I will be praying for Reese and her response to this new medication. Your families' love for Reese and your commitment to her care is a testimony to all who witness it. You are all an inspiration to me... especially little Reese. I miss all of you! Give Reese a kiss for me!
    Emily Kelley


Thanks for taking the time!