Another special event happened while we were gone on our Disney trip. A family friend, Haylie Stafford Dufour and her sweet friend Christi Blair, planned a softball benefit tournament for Anna Grace. I am in awe of their generosity. They had never even met Anna Grace. Thank you to all who supported the tournament and those who played in it. We are truly grateful for your support.
Tuesday, October 11, 2011
(End of August) A 14 hour rode trip (with a three and five year old) was just the beginning of a vacation filled with memories that will last a lifetime. When we first heard that Anna Grace has a terminal disorder, Brad said that he wanted to take her to Disney World. Anna Grace absolutely loves Cinderella and he wanted to make sure that she was able to enjoy Disney at least once more before anything happened to her health or mobile abilities. Brad's brother got word of this and had us a trip planned before we knew it. It was a wonderful trip. Both of our parents were able to come and Brad's brother's family as well. It was the perfect trip! We had the best tour guide too (thanks Brian). The highlight of the trip was when Anna Grace was able to dance with Cinderella and Belle in their special autograph room. Since our party was so big, our family was the only family in the room. It was a very special moment. She had been wanting to dance with Cinderella since we started on the trip. Anna Grace and Makenzie both had a blast! Memories were made that will last forever.
The past few days have been no mascara days for me. My heart is heavy and hurting. Anna Grace's OT and PT are concerned that she is regressing a little. They feel that some things Anna Grace used to be able to do are harder for her now. I can even sense this in Anna Grace's behavior. She is getting frustrated and fatigued more than usual. I feel helpless. I don't know how to help her. I cry out to God to give her peace that only He can give.
Please pray as we prepare to go see two doctors at Texas Children's in Houston. We go in about a week. The doctor that set up our appointment is from Italy and is a specialist/researcher in MSD. I truly feel God led me to him. After Anna Graces's diagnosis, I began looking for information online, but didn't have much luck. Since MLD is so rare, I began researching medical journals about MSD and would email the authors. One doctor I emailed responded to me that he did not know much about MSD but that his mom just happened to be visiting him and she told him that I needed to contact Dr. Ballabio in Italy. He is the doctor that actually identified the MSD gene. He sent me Dr. Ballabio's email and I emailed him. I received a response fairly quickly and he told me that he actually comes to Texas Children's in Houston every two or three months and would like to see Anna Grace. I got chills upon reading this. Finally, someone to give me some answers to my many questions about this monster called MSD. I look forward to meeting him and hearing his thoughts about Anna Grace.
Lord, thank you for carrying me when I am weak, for holding me when I am hurting and for comforting me with your peace always. I lift my eyes up, my help comes from the Lord. Even though I don't understand and I don't like this journey we are on, I WILL TRUST YOU. For with you all things are possible. You are Sovereign and you are Good!