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 :) :)

One day at a time

The summer is flying by fast. Hard to believe. We are looking forward to Lily's 1 year birthday party celebration coming up this weekend. It's crazy to think our little girl will be one year old already on the 12th of August-wow! We have thankfully all been staying healthy (especially Lily) and have been enjoying visits from the grandparents and Lily's aunts. We're hoping that the cooler weather this week will allow us to get outside more and utilize Lily's stroller. It's been so hot and muggy lately and the humid weather and heat is hard on Lily. Sorry for a short post but not much to report-just thankful for a happy, healthy girl and that we are so blessed to be able to have her here with us to celebrate her first birthday with family this weekend! Can't wait to celebrate our girl being 1 and what a sweet little pea she is! Every day we are thankful for her happy, content demeanor and how she is showing us her little girl personality that is developing!

 

"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

Crazy summer days

Sorry for my lack of blogging lately. Let's just say the month of June we were basically in the hospital every week (literally) and July has flown by already and Lily is keeping me a busy momma. By the time she is in bed (which has been later and later lately), I'm zonked and just want to go to bed too or stare at the tv.

This summer has been a hard summer. Not going to lie. The hardest summer I think I've ever had. For the people that are close to me and know me I don't seem like a shy person and not a private person :-) but going through the journey of SMA with Lily and experiencing the emotions I have felt lately-pain, sadness, despair, has contributed a little bit more to me being a private person. Sometimes it's just hard to talk about what we're going through and feeling. For those of you that have a child or have had a child that has faced a terminal illness or disease, you know what I'm talking about. There is a lot of grieving---every day. Some days are really good and I feel like I am happy and enjoy Lily for the happy, sweetest little girl she is. Other days I am just so sad about what she has to go through. But we literally just have to take things one day at a time. And one hour at a time even. And just pray for strength and hope. And most of all, for a miracle for our sweet little pea. So for those of you that have sent cards, words of hope and encouragement, brought food, left food at the church---sent texts and called---thank you, thank you, thank you!! They mean so much and I'm sorry I'm not better at getting thank yous out. Someday I will :)

It's hard to believe it's already the middle of July because I feel like our family hasn't even experienced "summer life". Whatever that is haha. But having a daughter with SMA means thinking a lot more about going places and what kind of germs those places, people at those places have. It's definitely a life changer. But as we get more comfortable with all the changes we have had lately (g-tube, feeding pump, bipap, etc) it will get easier to get out. Lily now uses the bipap (nasal breathing mask) at night now, which allows her (and mom and dad) to get better sleep. She was having problems dropping her oxygen saturations before she had the bipap and now she keeps her sats up and just seems to rest better overall. We are so thankful for how well she has tolerated the bipap mask. We put it on her tonight and it was the first night she didn't cry. She just hung out and then started making noises and smiling. Sometimes I am just amazed at how happy she is. Even after all she has gone through--she is just content. She is teaching me a lot about what it means to be truly happy and content...no matter what the circumstances.

We thank the Lord every day for another day to be with Lily and to enjoy her. Each day is a gift and we are so happy that she is such a happy girl. She is happy she gets to see her mom and dad and grandparents and read books and watch cartoons and play. What a sweet little girl.

We have felt an outpouring of support from family, friends, church, etc. Thank you all for however you have helped again. We thank you and we love you.

   

This is the face she gives all the nurses and Dr.'s when we go to Iowa City. 

  Hospital stays can be fun, right?

Snuggles with Gma Stewart

                 


Our girl is getting so big-hard to believe she will be one year old soon!