Friday, December 26, 2014

2014

2014 has been a year that is hard to put into words. I know I have had a few small updates here and there, but here are the highlights of our year (:

In February we went to California for a SoftBones conference. It's hard not to love San Diego, and we had blast meeting more friends and families with HPP. These trips are especially meaningful for Evie, as she meets more kids with HPP just like her. We hit a rainy weekend but found a sunny day for Sea World.

 

On May 6th, Aliannah was officially adopted into our family! We had a day full of celebration with her and family and it was such a happy day for all of us. It was bizarre to sit in the same courtroom that we had sat in so many times facing the unknown, this time celebrating the peace and addition God has given us!

 
On May 19th, we celebrated Lyla's 7th Birthday and nearing the end of our first year of homeschooling. She finished 1st grade with gusto, and we are both really enjoying this concept of doing school together! You can find us doing school at home, Starbucks, in the car, at the pool, in a waiting room, all over town. I am learning right along with her, which is an added bonus (; I am so proud of her hard work and the nice girl she is becoming!
 
 
In July we celebrated Ali's 3rd birthday. It's hard to believe we met her just after she had turned 1! Those two years have flown by. We had a fun day at the zoo celebrating her first official birthday with us and the sweetness that she has brought to our home! This girl loves to eat, so we had a day full of cake, cake and more cake!
 
 
 
At the end of August we took a family trip to NYC. It was a first for most of us!! The sights were amazing and we had another chance to share about Evie's HPP and her treatment. I'm pretty sure it was the hottest weekend NYC had seen in a while, but we are used to Nebraska summers so we enjoyed every minute of it! Lady Liberty was the highlight of the trip, and we also enjoyed Time Square, the Subway, the Double Decker busses, Dylan's Candy Bar, and all things tourist (:
 
 
Near the end of September, John went on his first medical missions trip to Romania. He spent 10 days there, doing surgery, exploring the countryside and experiencing medicine in another country. He came home with lots of new ideas and an itch to travel. We survived 10 days without daddy, but heard from him most of the days he was gone (: I am so proud of him for raising money to serve others!
 
 
 
A few days after John came home Evie and I took off for San Diego! I had the opportunity to speak at the American Academy of Pediatrics Conference again, and share our family's journey of participating in a clinical trial. Traveling just the two of us was a blast, we stayed a few extra days to paddle board, spend a day with Uncle Rob (my cousin) and soak up some rays!
 
 
 
 
 
To end our year of travels I went to Washington DC, ALONE, to participate in another meeting about clinical trials. I had a really hard time walking away from John and the girls, but was amazed at how much I could read in an airplane without being interrupted (: I spent two days with another mom who also shared her daughter's story to a group of amazing medical professionals with a passion to improve pediatric medicine. The experience was incredible, but I really missed being home. We'll see how much traveling we take on next year (:
 
Apart from birthdays, travels and school, the girls are all doing swim lessons, and Lyla and Evie both did their first swim meets. It was a big milestone for them!
 
 
 
 
Evie has been really healthy apart from a few seizures here and there which are much less scary now that she's 5 and so much bigger. We are truly blessed to be the parents of these three amazing kiddos and I am going to soak up every minute. These are such wonderful years of parenting, watching the kids discover new things as they grow up and see the talents and desires God has given each of them is just so fun. Evie is doing a High-5 preschool program this year, and was the Angel in the Christmas program. She got to stand in the front of the stage while the rest of the class sang "Go tell it on the mountain" and joined her. My heart just about exploded, thanking God for how He has sustained her and how much joy she brings to our family.
 
 
 
Merry Christmas everyone!!
Love from the Elsaessers (:
 


Wednesday, October 22, 2014

Pretty cool (:

Hi Friends!!

Forbes recently published an article about the experimental medication that Evie is receiving. It's pretty neat and I wanted to share!! What a blessing to have life-saving medication. It's hard to put into words the gratitude that we feel.

Love you all!! Thanks for checking in!!

http://www.forbes.com/sites/matthewherper/2014/10/14/a-drug-regrew-a-little-girls-missing-bones-how-much-should-that-cost/


Sunday, September 21, 2014

FIVE YEARS!

It's hard to believe Evie is five... Five... FIVE! I have had a few moments these past few weeks where it almost seems to good to be true... but it's true, and it's wonderful. A verse from Ephesians keeps ringing in my ears as I look back on how far Evie has come, "Now glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope." Who would have thought we would be watching Evie run through the pumpkin patch on her 5th birthday. With her initial prognosis I don't know that this is something I would have even dared to ask for.  It has been hard to hold back the tears this week.

 
We had a fun filled day on Friday, Evie got to take treats to Preschool and wear a crown the size of her whole head (necessary for a fifth birthday!). After preschool our family met us at the Pumpkin Patch and we spent the afternoon watching the kiddos have a blast. We had pancakes for dinner at Evie's request and she chose a gluten free cookie cake so Lyla could eat it (:



 

 
Evie is really into super heroes lately... not surprising for a super star who has overcome so many challenges! She wanted an Iron Man costume for her birthday, which I am sure we will be seeing a lot of over the next few months! She also got a Captain America t-shirt, shield, 



ukulele, and drum set (:
 
 
This has been a huge year of growth for Evie physically - this May she ran in the homeschool track meet and did all of the field events available for preschoolers. This was a huge milestone for her and deserves it's own post, but here is a video below! This year we traveled to San Diego and New York City. Evie finished her second year of preschool and her first year of homeschool class. She does swimming lessons, dabbled in dance, and started piano lessons.
 
video
 
It has been a humbling, blessed road to walk with Evie this past year. To tell people that her health prognosis was 5 or 6 months after she was diagnosed with HPP is a potent reminder to me of how far she has come, her determination, her strength, and all of the things that have made her the beautiful little kid I have the joy of raising. I know that not all people have the opportunity to see their medically fragile children heal and grow stronger. To hear them say "I love you," to snuggle them at night. To watch them run and jump. 
 
I will never stop praising God for this little life that I cherish so much. She keeps my heart soft and my eyes teary. She and her sisters fill our home with priceless memories.
 
Love you friends (:
Isaiah 40:31
But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
This is my prayer for you Evie Jayne. Happy Birthday Sweet Girl, I love you with my whole heart!
 
---- Our foster daughter Ali is now our adopted daughter (: but that deserves it's own post so I am going to hold onto that a while longer!