Sweet Anna Grace

Sweet Anna Grace

Saturday, December 31, 2011

Overwhelmed with Love

As I reflect over our journey this year, I am overwhelmed by the love and support that has been given to my family. Thank you, thank you, thank you for the prayers, cards, encouragement, financial support and the special little things so many have done to make Anna Grace feel so loved and special.

We did hear back from the DNA test about two weeks ago and they confirmed that Anna Grace does have MSD. Although doctors had predicted that Anna Grace did have MSD, hearing the confirmation was very hard. I am grateful that I serve a God that is sovereign. He gives me strength and peace moment by moment.

Anna Grace is doing very well. She is healthy...other than a little cold that we are all battling right now. She has loved being around all her family during Christmas. Now that she is back home, she has been playing with all her Christmas presents. Just today, we have enjoyed this beautiful day that God has given us playing baseball, alligator golf, jumping on the inflatable jumpie and having a picnic. I just love the sweet family that God has given me.

Cherishing Every Moment,
Leigh Ann

Tuesday, October 11, 2011

Where Dreams Come True

(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.

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.

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!

Monday, August 22, 2011

Anna Grace turns 5

Thanks Kalli, Whitney and Michelle. The banner was perfect!

Anna Grace turned 5 August 2 (same birthday as her Maw Maw Ann). She had a very fun birthday party! Seeing the joy on her face was worth all the work. We had planned on having a puppy dog tea "pawty" but changed plans at the last minute. While surfing the internet, I ran across a rainbow birthday cake. At that point, I knew that would be the perfect party...a Rainbow party!! I asked Anna Grace if she wanted a tea party or a rainbow party and while waving her hands in the air in a arched motion, she said , "rainbow!" So, we planned a rainbow party for her and included some of her favorite things: tea party, play dough, miniature golf, and a rainbow art project using glue. It was a success.

It touched my heart seeing how much fun she had. I mainly invited family to the party. Anna Grace seems to thrive more in a small group, so I tried to keep the guest list smaller than normal. Anna Grace was full of life that day. She was running and laughing and just having a blast. Of course, she enjoyed showing off "Rainbow"-a Havanese puppy that she got for her birthday.

Rainbows mean so much to our family right now (to find out why see my first blog). We are clinging to the promises of our Savior. We are trusting him and his Word. Lord, I know you promise to never leave us nor forsake us. Thank you for holding, leading and loving us. We are trusting that with you "nothing shall be impossible" (Luke 1:37). No matter where our journey leads us, you are there and your light is guiding our way. I love you Lord!

Ok, time for some pics!

Run Anna Grace Run

I just loved this cake! So precious and delicious!

Paw Paw and Nana
Maw Maw and Papa

Our precious family (Brad, Anna Grace, Makenzie and me (Leigh Ann)

Uncle Jason and Anna Grace being silly

We were reading the story, "Noah's Ark." Do you know what is at the end of this story??? You got it, a RAINBOW

Special times with cousins Maggie and Emma

Mommy's little angel (Friends forever)

We were glad that Madison, Chloe, Aunt Patsy (and Uncle Jason & Tyler) came

Thursday, August 18, 2011

First Day of Kindergarten

I cannot believe Anna Grace has started Kindergarten! Time really does fly by. This begins a new chapter of her life. I pray that Anna Grace will show God's love as she meets her new teachers and friends.

Anna Grace wasn't very excited about waking up so early...she likes to sleep late. But, she managed to get ready and even have time for an episode of her favorite cartoon, Curious George. Here are a few pics.

Ha ha, she was saying cheese!

Daddy's girl

She is my little angel

Big Girl!

Brad and I took her to school together. She seemed to have mixed emotions. She was excited but a little anxious too. I did shed a few tears as we walked out of the school. Oh, Father, please hold her hand. Be her protector and her guide. Give her peace when she is frustrated or scared. Help her to build relationships with friends and teachers. Please give her teachers patience and understanding. She is IN YOU HANDS. In Jesus name, Amen.

Here are a few more pics from her day:

She picked out her backpack by herself. We were online shopping and she really wanted this pink one.

We are here. Mrs. Saucier's room.

She is already being a helper.

Looks like Anna Grace missed Rainbow, her puppy, while at school.

Saturday, August 13, 2011

What is MSD?

What is Multiple Sulfatase Deficiency?
Multiple Sulfatase Deficiency (MSD) is a lysosomal storage disorder closely related to the mucopolysaccharidoses in which all twelve of the known sulfatase enzymes are deficient or inoperative. MSD may also be called Austin's disease. There is currently no cure for individuals with MSD.

What causes MSD?
MSD is caused by the deficiency of an enzyme, Formylglycine Generating Enzyme (FGE) that is in turn responsible for activating a group of different enzymes called sulfatases. Deficiency of this enzyme results in defective functioning of all the different sulfatases. The sulfatases are a group of lysosomal enzymes that are responsible for breaking down and thus recycling complex sulphate containing sugars from both lipids and mucopolysaccharides. The lipids that contain these sulfated sugars are critical for normal brain development and function. Individuals affected with MSD experience similar problems as children affected with leucodystrophy and mucopolysaccharidosis.

This is an excerpt taken from the MPS Society as listed below. Additional information is available at http://www.mpssociety.co.uk/uploads/MSD_factsheet.pdf.
MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP
t: 0845 389 9901, f: 0845 389 9902, e: mps@mpssociety.co.uk, www.mpssociety.co.uk
Registered Charity No. 287034

Friday, August 12, 2011

The Diagnosis

I decided to start a blog today about our journey with our angel Anna Grace. As I write this, I feel the Lord whispering to me to "Trust me." I commit to "trust in the Lord with all my heart. Lean not on my own understanding; in all my ways acknowledge him, and he will direct my paths." (Proverbs 3:5-6). My heart is so heavy right now. But I choose to TRUST! I know my God is holding my broken heart in His hands.

It has been a roller coaster ride (the worst ride ever) for our family since June 27, 2011. It was that day that our neurologist told us that she saw changes in the white matter in Anna Grace's brain and she suspected that Anna Grace has Metachromatic Leukodystrophy--a terminal, genetic, neurological disorder. We had to complete additional blood work to confirm this diagnosis. There are no words to explain our emotions on the two hour drive home from the hospital to my parent's house. As we approached my parent's home, we saw a beautiful rainbow. I immediately felt hugged by God. This rainbow arched over my parent's home and we could see the end of the rainbow radiating on our land. The rainbow remained there for approximately 30 minutes. My family and I all embraced this "hug from our God." Anna Grace and I even played in the drizzle as we thanked God for the reminder of his faithfulness. God has given us so many promises in His Word and he is trustworthy. I am "standing on the promises of God my Savior."

On July 18, 2011, we received the dreadful call. On the other end of the line, we heard the nurse say, the blood work and urinalysis confirmed that Anna Grace does have MLD. Amidst all the pain, we knew we had to act fast. Time is of the utmost importance in this disease. On July 22, as Brad and I were running errands preparing to go to North Carolina for a transplant evaluation, we received a call from Dr. McGuire saying that the lab called and said Anna Grace does not have MLD. I was confused, in awe, astounded and humble, all at the same time. We gave God the glory for this startling news. This news was an answer to prayer: God disagreed with the doctors and Anna Grace does not have MLD. Below is a Psalm of praise (thanks Brian for this scripture)
Psalm 116:1-5 NIV
I love the Lord, for he heard my voice;
he heard my cry for mercy. Because he turned his ear to me,
I will call on him as long as I live. The cords of death entangled me,
the anguish of the grave came over me;
I was overcome by distress and sorrow. Then I called on the name of the Lord:
"Lord, save me!" The Lord is gracious and righteous;
our God is full of compassion.
Our neurologist went on to say that the lab believes Anna Grace has Multiple Sulfatase Deficiency. After additional blood work, this diagnosis was confirmed.

We are trusting and singing the children's song, "Our God is so big, so strong and so mighty. There's nothing our God cannot do, for you!"