Summer girl

We had a lot of time outside this afternoon and Lily absolutely loved it-she is going to be an outdoor girl I think. She got to chill in her diaper all afternoon which made her happy but of course we had to put on our shades and sunhats :) We had a visit from Gpa and Gma Schwarck as well and they helped dad put the wagon together. Shout out to Families of SMA for the amazing wagon. It will work so well for us to pull Lily around in the yard and take her places. She loved it and was talking and making noises all afternoon.

As you can see from the pictures, Lily has an ng (nasogastric tube) which goes right into her belly which we use for feedings. A few weeks ago she started to have increased difficulties with feeding, so we earned ourself the tube, unfortunately. But it feels better to know that she is gaining weight and getting what she needs, so she can be a healthy, growing girl. 

This is how she felt about her ng tube this morning: not happy!

 She has seemed to have a rougher time in the morning because we've been taking the tube out at night to help her get good rest and then put it back in the morning. She is mad for awhile and then it seems by afternoon she is in a better mood. It's hard seeing our content, happy girl in a bad mood. But there is relief coming-we are going to be headed to Iowa City next week to have a g-tube placed. No more discomfort and a darn tube in her nose/throat!

 Prettiest girl I've ever seen :-) 

Grandpa and Grandma Schwarck

I think they might like her....just a little bit!

Mommy's girl

To end this post for the night, Levi and I would like to extend a heartfelt thank you to all for the wonderful support and prayers offered up on Lily and our behalf. We were overwhelmed with posts, messages, texts, etc. and are so thankful for all the great friends and family we have to help us through this time of trial. Thank you, thank you, thank you. It makes walking this road much easier knowing we have so many people behind us encouraging us! It took us awhile to share this with everyone and open up about it, but I think it's safe to say we are both very glad we did and appreciate all the love we've received! 

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!! 

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

   
"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