Rare Disease Day 2018

Hi Friends! I can NOT believe how long it has been since I posted here but wanted to share a video in case anyone still checks this page (: Evie is doing so great, and we are so thankful to our Heavenly Father for his provision in her life and His constant presence in our home and hearts!!

Evie: Rare Disease Day Video

Love you friends!

not impossible...

hey friends (:

I really need to sit down once a month and reflect on this sweet journey with Evie and the rest of our crazy crew. We have had a memorable summer, one that will go down in the books. I have contemplated making "I survived the summer of 2015" t-shirts... if there's enough interest I might just do it!! (:

Good stuff first -
Evie and I got to travel to North Carolina this past February to kick off the Quintiles Global Leadership Meeting. Basically, the leadership of a big research company was meeting to assess where they're at, and where they want to go (or something like that). We got to kick off their meeting sharing Evie's story, encouraging them to keep up the good research. How lucky am I!? I get to personally thank the groups of individuals who are pouring their hearts and work into research trials by sharing with them the miraculous result of Evie's trial. So grateful to be there.

In June we traveled as a family to Washington DC, again to share Evie's story at a conference for youth and their families who are a part of a program called iCAN research. As these young kiddos are heading into the fields of medicine we got to again encourage them to do good work because there are actual people benefiting from what they are doing. God's workmanship just shines through Evie's life, and it's an amazing thing to share.

Hard stuff second -
This past spring we met with Evie's neurosurgeon and plastic surgeon and it was decided that she needed another skull decompression surgery, again moving her forehead forward to make more space for her brain. She had been complaining about headaches and was just plain irritable. In April we scheduled this surgery for August 6th. Giving me four long months to pray, cry, pray, worry, pray, cry, pray, and cry some more.

Following that decision Evie's orthopedic surgeon found a stress fracture in her right femur that was a ticking time bomb waiting to break all the way through. We made the decision to put a rod in her femur before it broke and we were left picking up the pieces. Wow, it's hard to put your kid through something like that before the break has actually happened. She was in a lot of pain afterward, and it took her nearly the whole summer to walk again. It was hard on our hearts. It took a lot of frustration and tears to finally weight bear and take steps.

God handed me a gift the week before Evie's skull decompression and she started walking more confidently. She went from wheelchair to crutches to finally walking independently. We are still carrying her quite a bit, but it is a relief not to have her crawling around our home anymore.

We are just about a month out from Evie's last surgery. Her surgeons made cuts in her skull similar to the first time she had surgery, but this time they put in distraction devices. She has a metal "distractor" on each side of her head with a piece that sticks out. We turned a key twice a day for a week, then once a day before the keys were removed. Each time we turned the key the distractor would spread out .5mm moving the front part of her skull forward. There is still a little metal piece sticking out and a couple of staples here and there, which come out November 12th. She also has a metal plate between her eyebrows that is pretty prominent. When these are removed her plastic surgery will smooth out all of the cuts and bumps from her three surgeries. I just can't wait to see her sweet face all smoothed out. What a gift to her. We are in a weird transition period where her old photos look odd, and so do new pictures of her because it's temporary.

July was a hard month. I was stuck. We were still in the depths of recovering from her femur rodding and anticipating another surgery... that would lead to another surgery. We haven't had any major operations since October of 2013 and I just wasn't ready. Honestly, I thought she would be running around 6 weeks after her femur rod and it just wasn't happening. Also, now that she's older she "gets it." Surgery means pain, IVs, icky medicines, finger pokes, wires, monitors, time away from her sisters, missing the fun stuff.
BUT surgery also means an intense time spent away from the things that don't matter, and time to focus on the things that do. Time to beg our Lord and Savior for the peace that only He gives. Healing for our hearts, minds and souls. Connecting with our family in a way that some people never get to experience.

We went to the Building 429 concert tonight and I got to hold Evie and sing their new song "Impossible." More specifically the lyrics proclaim "There is NO such thing as impossible!" Evie LOVES this song. She LIVES this song. I am taking this with me November 12th when I'm waiting for her swelling to go down so we can go home. When she's up in the middle of the night because it hurts. When we're sleep deprived and missing our beds. When the other two are crying because it's hard when we're gone. When the burdens of the other people in the building are breaking our hearts.

The day we left the hospital we shared the elevator with a family who was leaving the ICU without their son. We saw one of our preschool families in the lobby - their daughter has leukemia. It was such a good reminder that we are just a few of a large group of people who are struggling. What a gift to know that God loves every single person there - and he hears our prayers.

and for the pictures you have been waiting for:

Two days post-op, feeling up for some reading.

turning the keys - yep it was just as weird as it sounds!

 

the gift shop makes hospital stays bearable (:

 

these girls love each other.

ONE week post-op. Already seeing a big difference.

3 weeks post op. Giving that brain some room to grow.

be still my heart.

our last femur x-ray. healing well. 

 once you have a straight femur, you should put it to good use. Yoga, perhaps.

 end of the summer fun.

 

 Then this happened!!! As Evie proudly told her doctor, "I go to the Elsaesser Boarding School for Girls. In my BASEMENT." Two weeks down, so far so good.

 

 Building 429 concert. Worshipping God with my 4 greatest gifts.

 

 There's no such thing as impossible!!

Love you friends (: Two more weeks and this kid turns 6. SIX! We'll be back soon.

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 (:

 



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/

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.

 

 

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!

 

 

Merry Christmas, and update of the past year!

Merry Christmas Friends!

I have never sent out a Christmas "letter" but I suppose this is as close as it's going to get for us! I truly miss blogging. Life has been crazy busy around here and with the third child and starting home school my brain is fried at the end of the day.... so this will probably be the longest update yet!!

REWIND to May of this year, Lyla celebrated her 6th... yes, SIXTH birthday! We had the annual Lyla/Papa Steveo joint birthday party with the family. It was a good way to end her Kindergarten year and kick off the summer.

We spent the summer swimming, playing, traveling, and more swimming! We all had a twinge of green in our hair by the time fall rolled around, and I miss it like crazy. We also had a lot of big decisions to make, mostly in regards to if we were going to send Lyla back to public school for this school year. She had a rough go in Kindergarten and after a lot of prayer, talking to our friends who homeschool, praying some more, crying a little (okay, a lot sometimes), and a little more praying we decided to give it a go. We have joined a community of homeschoolers here in Omaha, and I have totally fallen in love with it. It is so fun to watch the girls learn and grow together. I am learning as much as they are, my brain is tired!! Evie is still going to public preschool three times a week which is good for her as she gets speech, PT and OT services, and we will continue to pray and listen for God's leading year by year as we decide what to do with the next two girls.

Our foster daughter is still with us and everything is going well. July 19th marked our first full year as a family of 5. She is an absolutely blessing, full of fun, definitely working through some terrible twos, but that is expected! I wasn't sure what my mom was talking about when she always told me the third kid was by far the hardest... but I am going to have to agree with her! For some reason I feel like I went from still having SOME free time to being totally tied down. Add home school on top of that and we are usually doing something 24 hours a day, 7 days a week. Good thing I love these guys with all of my heart!

As far as Evie's health goes, she finally had her right foot surgery in October. She had a tendon transfer, they lengthened a second tendon, a muscle, and released a few curly toes. I was pretty nervous going into surgery - these elective surgeries seem to be so much harder than the life-threatening ones, which sounds so backwards. Evie's first surgeries were necessary. They HAD to be done, there was no "if." This time we got to choose what month we would do surgery, how invasive things would be, etc. The main reason for this surgery is that she had been walking on the outside of her right foot and is pigeon toed to the point where her right toe constantly trips her on the back of her left leg. The few days we were in the hospital were horrible, lots of throwing up and pain. The 7 weeks in a cast were rough but her foot has flattened out and she is walking beautifully. It's funny because her right foot was so prominently turned in that we didn't bother with her left foot, and now her left foot looks like it needs surgery. I am going to wait until after the holidays to call her doctor about that.

Evie just had her 6 month clinical trial check, and the drug still seems to be working as she is growing physically and making new strides developmentally. This past summer we got the chance to go to Chicago and meet a group of other families affected by HPP - some adults, and some kids. It was amazing to get to meet these other families and see what they have done, how their disease has progressed, and how some of them are doing on the drug trial. We are blessed to know these people and Evie exclaimed on many occasions how she met a friend "who has HPP just like me!" We have already booked our next trip to a patient meeting in San Diego in February, a similar trip to continue to meet families, connect with physicians and educate ourselves and others about hypophosphatasia. It's wonderful to be in a place where Evie recognizes that there are other wonderful people that are 'just like her.'

One of the toughest weeks for me lately was just after Evie got her cast off, and she asked me on a daily basis "why I have hypotasia?" and "when will my scars go away?" I guess I assumed that since we talk so openly about her disease and surgeries with her that we wouldn't have one big talk about it, but we definitely did, and honestly it broke my heart. It's hard to tell a four year old that God has a big plan for her life and hypophosphatasia is part of it, but it's the truth. It's really hard to tell her that when she's in pain. But He is good, and she is wonderful and I am taking this one day at a time.

right foot post surgery (:

 

This Christmas was very special as my new niece was a part of it. My older sister had her third child in September and Sammie, the new baby, nearly lost her life to heart failure. It was sudden and totally unexpected. To spend the holidays with her and Evie was a humbling experience. It was the perfect reminder of God's blessings, the biggest that he sent his son Jesus, to save the world, and that is He is always with us. Those dark days when Evie was so sick came flooding back as I spent time with Samantha in one of the hospitals that Evie has spent so much time in. What a blessing it was to watch her get well.

Love you friends!! Here are a few pics of the girls (:

 

Oct 2013

first day of school - Aug 2013

 Evie and Herbie Husker at the husker heroes event

 Evie's favorite birthday present, her mini-cooper

 Evie at dance class this summer

 

Happy 4th Birthday Evie!!

Our hearts are overflowing with JOY as we celebrate Evie's fourth birthday today!!! (all week actually!) What a blessing it is that the minutes we were supposed to have staring at this little face has turned into the best four years a mom could ask for.

I love you sweet Eve and can't express how much fun it is to watch you grow up. You are a constant reminder of God's goodness, His love for us, His protection and His LOVE! 

 

Love you too friends - we have had a lot of changes this summer, can't wait to catch you up soon (: