Sunday, October 12, 2014

Summer fades into fall

It's been awhile since my last post (sorry!) but I will try to be better this fall at keeping you updated on how Lily is doing and how much she is growing. She is now over 20 lbs and 30 inches long. We don't know how she got to be so long (considering her mom and dad), but she is a growing girl!

We've started her on a diet that a lot of kids that have SMA are on. It's called the amino acid diet (AA) and it is has many benefits such as easier digestion, and improved breathing and metabolic function. For Lily to start with, it consists of breast milk, an elemental formula called Tolerex, and water. So far she has tolerated it beautifully and has had no issues. We've been able to increase the rate of her feedings during the day as well which is great.

Lily has been healthy (praise the Lord) and we have been out of the hospital since July when we came home with the bipap. Except for clinic visits, we hope to stay away this fall/winter. So far so good. We work hard to protect Lily from illnesses so if you or someone around you has been sick, please stay home and don't expose others. For kiddoes with SMA, a simple cold can be life-threatening!

Since my last post, we had the Love for Lily Grace Benefit mid-August. It was a wonderful turnout and we were so overwhelmed by all the people that came to support us and Lily. Levi and I are truly thankful and feel so blessed by all the financial support, prayers, meals, visits, or notes of encouragement. They all mean so much and we are truly grateful. Thank you for helping us walk through this journey. Unfortunately, I don't have pictures from the benefit to post; we had a professional photographer take some pictures for us so we didn't have to worry about that. But I have plenty of other pictures from Lily's late summer/early fall adventures.

 Grandpa Kramer always brings Lily balloons---she loves them!


Those eyes!!!

Play time with Grandpa KWhen I read Lily books, she always puts her little hand on my arm --love it!!! 

Below is Lily's angel arm, which we got from another family in Montana that has a daughter with SMA. They make these devices for children with SMA so they can move their arms or legs around, taking the fight against gravity away. It allows them to develop some independence and be able to play with things they typically couldn't. It's been so wonderful to be able to see Lily move her arms around and have more range of motion. You can tell it brings her joy too------------:) :) 

Enough pictures mom!   

Cousin time at Gma and Gpa Kramer's for Gpa Kramer's birthday!! Lily enjoys being around her cousins and they are always very entertaining!

More angel arm pictures 

Our cat Mustard loves to be close to Lily -they are best buddies!

Fresh fall air!!

So thankful that I am able to be home with this little girl and take care of her. I couldn't do it alone though and am so thankful for my husband and a wonderfully supportive family. We thank God for every day Lily is here with us and take one day at a time. It's easy to worry about the uncertainties of the future and where SMA will take us, but although its been a scary/sad journey at times, we are getting through it and truly enjoy watching Lily grow into a little girl. We are very lucky to have her! 

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