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! 

Birthday Girl

A lot has happened since my last blog so I apologize in advance for the lengthy blog and extensive amount of pictures. To start with, we celebrated Lily's 1st birthday the first weekend of August at Levi's parents' house. It was a beautiful party with family and friends. Lots of love, lots of presents (too many), lots of Lilyness :) and lots of pink and blue. I think it was a little overwhelming for Lily because there was so many people and she's used to just mom and dad and family, but she did so well and she was happy. Even though she missed her afternoon nap and was exhausted, she pushed through and opened all her presents. We had the birthday girl dressed in the cutest tutu and she had balloons, which she loved. We had a balloon release at the end of the party and it was a time to offer up a prayer for Lily girl. It was a very meaningful and emotional moment. Just thinking about what the past year has been like and how blessed and thankful we are that Lily is here with us today. Lots to be thankful for with this girl.

                    

                       

Love love love this pic. This dad has an amazing love for his daughter! So glad he's mine :) 

On her actual birthday we had some visitors during the afternoon. Lily got the royal treatment and had a manicure from aunt Abbie. Then Lily celebrated with mom and dad and her very own birthday cake at night. She wasn't super impressed. We let her touch and play with the frosting but she didn't like it cause it was a little cool after being in the fridge. We let her have a lick and taste the frosting, but she was like- hmm, what is this? Not impressed. Not like her mom. I loooove chocolate cake. But she had fun with music and being with people she loves-she is just content. I have so much to learn from her.

                
                          

 
 

  My birthday girl and her crazy hair-love it!


As you may have been able to notice, we are also sprouting two new teeth on top which have caused a little crankiness over the past few days. For those of you that know Lily, she is pretty much the most content, chill girl ever. But you can tell she is uncomfortable lately, just kind of whiny and fussy. Poor Girl. Thankfully, Tylenol and sleep have been in her favor. Below are just some random pics I wanted to share of Lily. We have been so blessed to have Lily's grandparents all close and around to help out a lot this summer. Sadly, both my mom and sister went back to work last week so we won't get to see them as often and we will miss them dearly, but a shout out to everyone for all their help---Lily has the best grandparents ever :) And the best aunts :) Ok just the best family :)

 

               Not too high daddy!                                    

 Can't resist that face!

 Any moment I can snuggle this girl is a precious moment. She gets a lot of secretions when she is upright for prolonged periods of time, so snuggle time like this makes mom's heart happy.
 

 Swing time with Gma Stewart

 Look at those teeth! How cute is that?

 And I just love these chubby baby legs with shoes. Lily doesn't wear shoes much because they're not very functional, but they are fashionable :)

The summer is nearing an end and it makes me sad because I know we'll be stuck inside a lot this winter trying to keep Lily away from flu/cold germs but hopefully this fall we can get out a lot and get some walks in with our stroller! Lily enjoys being outside and watching the world around her.

Thank you to everyone who has supported us in so many ways: financially, through prayer, sending cards/notes of encouragement, gas cards, bringing food, etc. Whatever you have done---it is so much appreciated. And I will (someday) thank you properly. We love you all and we are so thankful for the extensive amount of support we have from family, friends, community, and people we don't even know. Thank you, thank you, thank you!

"We do not look at the things which are seen, but at the things which are not seen. For the things which are seen are TEMPORARY, but the things which are not seen are ETERNAL." 2 Corin 4:18
Hard to really put this verse into practice every day, but gives me hope for our Lily girl that despite her SMA she WILL one day be able to walk, run, play, dance-whatever she wants to do :) :)