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 (:

Steps, prayer requests, and summer!!

Hey Friends!!

 This post should be full of pictures but our Internet is temporarily down to the computer so I'm blogging from the iPad. My apologies to you picture lovers!

 First things first - I have a newly dear friend Lynsey who is delivering her baby girl Graycen next Tuesday. I grew up at church with her husband Cole and we reconnected recently with news of their daughters diagnosis. They are facing the unknown much like we were. Please pray for peace for Cole and Lynsey, strength and complete healing for Graycen, a safe and easy delivery with a quick recovery for Lynsey so she can join Cole and Graycen at Children's hospital where she will be monitored and evaluated for heart surgery. I remember the weeks before Evies delivery, and feeling like I didn't even know how to pray at that point. So let's join together and surround them in prayer this next week!! God is so good and loves it when we pray. Also, when I was pregnant with Evie, Johns parents threw us a giftcard shower and it was such a financial blessing to us. If you have a giftcard or note of encouragement you would like me to give to Lynsey and Cole, please email me at lindseyle@gmail.com and I will get it to them!!

 We had a roller coaster of a day over here at the Elsaesser house... Evie saw our orthopedic surgeon this morning who was thrilled with her progress. We are looking into doing a surgery in the fall or winter that would help her right foot turn out more to help her walk. Right now her foot turns completely in when it comes off the ground with each step, then she straightens it out by the time it hits the ground. While we were there I asked if she can take her braces off during the day for a while and walk without them and we got the go ahead. She was so excited to tell her dad tonight that she put on a 30 minute production in her shoes with no braces, dancing, singing at the top of her lungs, playing an imaginary guitar. It was so good for my heart to see her celebrate.

 This afternoon after a trip out to play with my grandparents we pulled into the garage and when I
went to get Evie out of the car she was having a seizure in her carseat. I noticed her eyelids fluttering
first, then her mouth turning blue and by the time I got her out her body was completely stiff. It took me 30+ seconds on the garage floor to get her breathing again. She hasn't had a seizure for 15 months so it was a pretty good shock to my system. We are going to increase her dose of medication and watch her close. After a long nap she was doing much better and had a good, normal evening. I have a pretty bad headache and need a massage (:

 I got an email tonight from a sweet girl named Jenna whose unborn son has just been diagnosed with the same thing Evie was diagnosed with in-utero. I remember how heartbreaking those days were. It's hard for me to even go back and read my blog sometimes but it's so good for me to see how far Eve has come. Wow, I love her so much. It's good to hear of other families giving their little ones a chance at life. Please pray for this family also (:

 School's finally out and summer is in full swing. The girls spent over 5 hours in the pool on
Memorial Day and I am actually glad we have had a few days of rain to recover from the sun!! I
forgot how tired it makes me and how the girls can be outside for several hours without taking a break (: it is so nice to have Lyla home, I really missed her this year while she was in school.

 Thanks for loving us, and always keeping Evie in your prayers. We are truly blessed.
 Love you friends.

new every morning.

Hi Friends!

Wow, this post has been a long time coming. I have considered sitting down to write several times in the past few weeks but there has been a big looming question mark in my mind. I like to try to iron out my thoughts before putting them down on our blog, but I have a feeling I'm going to be a little more jumbled than usual for a while so I better just get down to business. (:

I'll start with the least important news in the Elsaesser household... I have finally crossed over into my 30's. Since I was really trying to avoid a big surprise party, I begged John to take us to Great Wolf Lodge in Kansas City for the weekend and it was so much fun. Sleeping in, watching movies, taking the girls down the water-slides, story time, it was such a welcome break from a long, cold, winter. After a big bump in one of the water-slides with John, Evie's favorite place became the hot tub. After several attempts to get her back on the water-slide with me, I finally took "no mommy, hot tub" as her final answer. We spent a lot of time together in the hot tub!

She has been talking wonderfully and it's amazing to me how far her speech has come from the beginning of the school year. She has started to stutter a little, but her doc thinks it's most likely developmental because she is trying to catch up from when she was little and didn't have the energy to talk much. I had to laugh the other day, she looked me straight in the eye and said "mom, is this your Costco card?"... a big step from the 2 to 3 word sentences we were working on at the beginning of the year.

Lyla is also doing well, school is a breeze for her academically but the social aspect has taken a toll on her this year. We are looking into alternatives for next year and trying to find the best fit. She has turned into our little swimmer, doing lessons twice a week to get ready for swim team this summer. We made a paper chain last night to count down the days until school is out - we are ready!!

Our foster daughter is a joy. She is a laugh out loud, get into everything, playful kid. It's a good thing she takes a nap or I might have to go to bed at 7 every night from following her around. She likes to pick up a toy, take it into another room, set it down, pick up another toy, take it into another room, continue, continue. Eventually I have to throw everything in a big bin and sort it all back out. We are still in the dark as to what the future holds, but that really hasn't changed.

It's been a weird few weeks. For some reason I have been holding Evie tighter than usual. She started a little bit of a cold a few days ago and her usual response is to follow me around saying "I want you!" Which I love... It's just harder to keep anything in order around here while holding a 25 pound 3 year old all day (: Things are similar with our foster daughter. She is so easy to care for and easy to love, all with the reality that she might not be ours forever. It's such a weird reality.

I remember having an especially rough day when Lyla was a baby, driving down the road and attempting to give God all of my worries. I remember presenting him with different things as I drove, and then I glanced in the back seat. Could I give God control of Lyla's life? Surely he wouldn't take my kids away from me...? That reality set in quickly when Evie was little. She could be gone at any moment. Sometimes I wake up in the middle of the night and I still panic - should I go check on her? What if she's not breathing? What if I missed her last moment? I can't tell her I love her enough. And yet, God's promises are the same. Life is short, eternity is long. We have an eternity to spend together in paradise. While I was so prepared for that 3 and a half years ago when Evie was born, I'm a total mess even considering that reality now. It would be a tough 50+ years to live without her.

I'm not exactly sure where my heavy heart is coming from. Maybe it's these few days of rain... Lyla's tough days at school... Evie came home from a preschool event crying for the first time "mom, I can never win the game at school."... Our ride with our foster daughter's birth family has been up and down for a few weeks... Or maybe I just haven't cried in a while. Regardless, God is good all the time and the sun will come out soon. Or I'm moving to Florida. (:

Lamentations 3:22 - 23.
Because of the Lord's great love
we are not consumed, for His compassions never fail.
They are new every morning;
great is Your faithfulness.

 

 

Great Wolf

 best dad ever!!

 off to the hot tub (:

 Easter action shot!

 love this girl (:

Love you friends!!