Wednesday, November 12, 2014

15 months old!

Warning: long overdue post with lots of pictures!! :-)

Our big girl turned 15 months old today-hard to believe. She is changing every day and getting quite the personality. She loves to smile and imitate mom and dad. She will smile, frown, yell, and roll her eyes, which is pretty darn cute. She is just such a happy girl and for that we are very thankful. We can learn a lot from her ability to be content (no matter what the circumstances). She is the happiest, sweetest toddler I know. And she is loved and adored by her family!

Lily has thankfully been very healthy and we hope to keep her that way this winter. There seems to be a lot of crud going around lately. Unfortunately it is that time of year, but we have had to stay away from family on several different accounts to avoid getting sick. We went to Iowa City a few weeks ago for a check up with Lily's neurologist/dietician and Lily got a good report. It was a long day (as always) but Lily did well and slept on the way there and back. She is continuing to gain weight on the AA diet she has been on since September and has no sweating/discomfort like she used to. I also feel like it has given her more energy to put toward moving her arms and legs. We go back to Iowa City in December to see her pulmonologist and get her g-tube changed out. We are also traveling to Madison, WI this week to see Dr. Schroth, a specialized pulmonologist that works with SMA children from all over the US. We were able to meet her in August and we are very grateful for her knowledge, input, and genuine care for Lily's well being. She is an amazing Dr!

We are so lucky to be able to be close to both Levi and my families. God knew what he was doing when he brought us back to Steamboat Rock (although I wasn't always sure). We couldn't have gotten through this journey and where we are today without their support and help. We get to see the grandparents a lot (except for when they are sick, of course!) We got to celebrate Gpa Garry's birthday in Cedar Falls at Aunt Abbie and Michael's house mid-October. Here are a few pics from our time together.

  Aunt Ab making my nails pretty!

                     Grandma Schwarck made a yummy cake!

For Halloween this year, Lily was an owl! Unfortunately, Halloween night was very cold so we didn't go out trick or treating. We made it to Gpa and Gma Schwarck's in costume, however, not the other grandparents because of illness. Next year hopefully we can make it out trick or treating!!! I think Lily would enjoy it. Maybe not the costume as much as just getting out!!!

Crazy glasses from Aunt Jan!

                                                                                              Grandma S loves her lil' owl!

We were fortunate to have some very nice fall days where we were able to get outside and enjoy the nice weather and fresh cool air! Lily truly enjoys the outdoors and being on her swing!


Maran, one of my best friends that lives near Chicago, was able to come visit us a few weeks ago. It was so good to see her! Maran is the type of friend that you can not see for months and you can just pick up where you left off and it's like you've never been apart! She is one of the most loving and supportive people I know. Thanks for visiting Maran!!! Wish you were closer!

(Sorry for the overload of pictures----but so much has happened since my last post!! :) :)

For those of you on facebook, you have probably seen my posts about Lily with her ipad and angel arm. This girl loves being able to use her angel arm to do things on her ipad. And it is so wonderful to be able to see her do things on her own-it makes her so happy and gives her a new sense of independence. She gets a huge grin when she sees the ipad; she loves music and loves to play songs on the piano!


A few other favorites from the past month with our girl!


Thank you for following us along this journey and for supporting us through prayer. We ask that you would continue to pray for health for Lily, Levi, and I and for strength and healing for Lily girl. They are getting closer and closer to a cure for SMA and thats encouraging and gives us hope, but we know not what the future holds. We take one day at a time! We are thankful for each and every day Lily is here and we can enjoy her blooming personality and sweet demeanor. Some days are harder than others though; I get so sad and frustrated with SMA and it's limitations. It makes my heart ache that Lily can't walk or run around or simply sit up on her own with a pile of toys around her. I want that for her so badly. I want to throw her on my hip or just pick her up in my arms and squeeze her tight as she puts her little arms around my neck (without having to worry about her g-tube or her filling up with secretions, or trying to support her body/head). I want her to play at the park and get dirty or rummage through things she shouldn't at home. :-) But I know that regardless of whether or not she is able to do those things here on earth, SOMEDAY she will in Heaven. And that gives me great hope and something to look forward to!!! Someday she won't have any limitations. But until then, we will treasure our time with her and do our best to focus on her, not her diagnosis. That little voice and big toothy grin are giving us the chance to experience love in a BIG way, like we never imagined! Love that girl!

2 Corin 4:17 "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

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