Friday, March 1, 2013

The beginning

To start this blog off I felt like I should tell some of the beginning of Tatum's story before we get into the day to day life and happenings because not everyone knows what happened on February 12th. I am not a great writer so forgive me.  I never had a desire to do a blog but so many people have shown interest and love to our family.  This was the quickest way to get information out to everyone. So here we go.   Since Tatum was a little baby she has had such a sweetness about her. She also always has had trouble gaining weight. We hoped that it was just because she was a walker. At about 4-5 months old I started noticing that she was delaying developmentally, not rolling, sitting, bearing weight on her legs, etc. At about 6 months we started feeding her through a bottle to see if that would help her gain weight. In the middle of December I took her to my pediatrician and started asking about her tone and development. We had a conversation about the similarities between her and our oldest son Trevin. That was the first day that I really let myself begin to accept the fact that she could have the same disease that he had.  A few weeks later we went to a neurologist who did an MRI and sent off genetic testing.  It seemed like time was dragging because we had to wait 3 weeks for the test to come back. Friday February 9 Tatum was admitted to the hospital for what we thought was the flu. She went home on Sunday then we had an appt up at PCMC on Monday  the GI doctor mentioned that kids with mitochondrial disease have throwing up episodes and since she had no other symptoms of flu it could have just been a symptom of the disease. The next day, Tuesday February 12th, was normal. Tate's looked so great. Bright eyed and smiley. We went to our workout class in the morning then when we got home I got her out to feed her and I noticed a rhythmic tick in her leg. I hurried and got ready and got her and Hilary into the car. I called my doctor and told them she was doing something weird. By the time I got there the tick had traveled to her arms. My doctor took one look at her and said lets get to the hospital. By the time we got to the hospital she was in a full convulsive seizure. It lasted for three hours. This is exactly how our son began his journey with Alpers syndrome so we knew at that point what the genetic tests would show. There have been a million tender mercy's along this journey. Prayers answered, etc. now you are sort of up to date. Sorry so long:)


  1. Oh Heather! I am shocked to read this. What can I say but I am sorry! She's SO CUTE! Thank you for starting this blog. We will keep you in our heart and prayers and follow along. And if you need any help, please call.

    Paige and Ryan

  2. Heather and Family, We love you so very much! So many tears for you right now. We both know that there is nothing I can say to make this better, but we love you.