Monday, May 26, 2014

Life changer

Our sweet Lillian Grace was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on April 1, 2014. Spinal Muscular Atrophy is a progressive neuromuscular disease that affects the nerve cells in the spinal cord. The nerve cells or motor neurons communicate with the voluntary muscles which control the ability to roll over, sit, hold the head up, etc. With SMA, these nerve cells are depleted or die which then contribute to muscle weakness and wasting. Ultimately, muscles for feeding, swallowing, and breathing can be affected. For more information and details on SMA, the following website is a great resource. http://www.fsma.org/Home/

Lily was diagnosed at 8 months of age and is now 9 months old. Lily is the sweetest, most content little baby girl which is such a blessing. She loves books and music and loves playing with mom and dad on the floor. She is also a fan of the latest craze, Frozen :-) Thankfully, we are close to all of her grandparents and great-grandparents so she gets to see them often and they are all very supportive and helpful.

We are hoping and praying for a miracle for our sweet girl Lillian Grace. She is the light of our lives and we thank God every day she is here with us and we get to enjoy her. She has taught us so much about what being content truly is and about what love is all about. We ask for your support and prayers for the Lord's healing in her life and for strength as we walk this journey of dealing with SMA. Thank you in advance for your support and prayers. We will try to keep you updated often but know that miss Lily keeps us busy so we will do our best!! 

   
"Now to You, O Lord, who is able to do exceedingly and abundantly above all that we can ask or think according to the power that works in us." Ephesians 3:20
  
Happy girl
 
"My grace is sufficient for you, for my power is made perfect in weakness." 2 Corin 12:7

Lily and her Daddy

5 comments:

  1. She is definitely a light in many people's lives....including her aunt and uncle's!! :-) we love you Lily girl! Such a sweet baby! And such wonderful loving parents :-)

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  2. So very precious. Could she be any cuter? In SS class, we've been studying Exodus. This past Sunday was regarding the Israelites leaving and their journey. Such rich detail. God's abundant protection and provision in their greatest time of need was so clearly evident. A question was raised that we discussed..."what route did they take on the map?" We don't exactly know for sure was the conclusion. Yet, what we do know, is that God was there with them as a pillar of fire and a towering cloud. He was before them and He was behind them protecting them. He was with them. Continuing, never ceasing to pray our heart's desire for Lily Grace...knowing not the route but knowing that this journey you are not alone. May you feel His continual presence. In His love. Gwen

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  3. Lily Princess is my sweet little sugar cookie. I just love her to pieces. Have you heard her talk and sing? Just wait. Usher, Adam, Shakira, and Blake will be fighting over whose team she will join.

    Lily, her grandma Melinda, and aunts Abbie, Vickii and Jan (yours truly) had so much fun playing together over Easter. She wore us all out. And, who knows where Mustard fled to that day. Did you ever find him?

    Lily girl, I think of you all the time. I lift you to the LORD continually, and know that He hears my prayers for your healing. He loves you and has you in the palms of His hands. He has given you the very BEST mommy and daddy in the whole wide world. They were chosen just for you, sweetie pie.

    I can't wait to see you in August. We will celebrate your 1st birthday. That will be a great party, and I might even dance.

    Love you Lily Sweetie Honey Princess. I'll write more later. Hugs and Kisses, Aunt Jan

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  4. We know Parker, Wesley and their mom and dad from our neighborhood. You are in our prayers!

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  5. I am an old classmate of Levi's, and just wanted you to know your story has touched my heart. I have a 2 year old son, Carson, who is the light of my life. The thought of having to walk through a health struggle with my child is unbearable. But you all have the right attitude. Never underestimate the power of prayer and positive thinking. After struggling for 3 years with infertility, I firmly believe prayer and positive thinking brought Carson to us.
    Just know how many people are lifting Lily up in prayer and thinking of her. Her smile can light up a room, and surely she has a firm hold on your heart.
    God never gives us more than we can handle, and he obviously knew you and Levi had the kind of hearts that could love a little girl as special as Lily.

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