Sweet Anna Grace

Sweet Anna Grace

Tuesday, October 11, 2011

Some days are better without mascara...

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!


2 comments:

  1. Constantly think of you and your family. One of my college classes requires us to research and present a childhood disease and after reading about Anna Grace I chose MLD. I plan on presenting in my Anna Grace tshirt and representing y'all at the same time. Continuously praying for peace and healing. Love y'all

    Amber

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  2. Leigh Ann, my heart breaks for Anna Grace, you and your family:( All of you are in my thoughts and prayers daily. May GOD bless you all and give the comfort and peace that is needed for yall to face each day. GOD is great and with him all things are possible!!! Anna Grace is in GODS hands, and he will heal her if we BELIEVE and keep our FAITH and TRUST in him:) Stay POSITIVE baby and know that there are people every where praying for yall and that loves all of you very much:)

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