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!!

Happy Rare Disease Day!!

Hi Friends!!

February 28th is International Rare Disease Day. To start the day Evie was asked to be on the morning talk show, the Morning Blend here in Omaha.
Here is a link to the broadcast!
http://www.omahamorningblend.com/videos/192483851.html

There is also a new video about Hypophosphatasia, the disease that Evie has, featuring some photos of her and many of our friends with HPP.
http://softbones.org/content.php?168
The Soft Bones group has given us access to connections and relationships with other people who have HPP, a forum to ask questions, meet others and not feel so isolated. We are so thankful for them.

We are truly blessed to be celebrating our extra special, ultra-rare girl today. I can't believe how far she has come in the past three and a half years, how faithful God has been every day, and how much we have grown in our appreciation of life, family, and all of you around us.

Love you all (:
Lindsey

Blessed

 

Merry Christmas from the Elsaessers!!

 

We had an amazing Christmas this year with a few surprises (: After a wonderful (healthy) Christmas Eve, our foster daughter had a bad temp all day on Christmas... followed by her and Evie getting RSV. If you don't remember, RSV was what landed Evie in the PICU for a month, on life support for 8 days when she was an infant, so we were pretty worried. We stayed home, did a lot of breathing treatments and never needed supplemental oxygen (praise God!). I got a cold about a week later, and this past weekend we all had the stomach flu! I'm not sure what it is about this winter, but it seems like everyone we know has been down with something.

 

So instead of outings and playdates over Christmas vacation we slept in, played at home, Lyla and I painted her room purple, and had lots of snuggles. It was surprisingly relaxing and a welcome break from the normal hustle and bustle of the holidays. We all needed that long break!

 

School has started back up again and the girls and both girls are doing great. We are going to try sending Evie 3 days a week instead of 2... her teachers think she will benefit from the extra day. We will see how it goes and if she has enough physical energy to do it.

 

Other than seasonal illness we are taking Evie to see her neurosurgeon tomorrow for a check up. Her last skull surgery was just over a year ago (hard to believe) and he will check things out. I was a bit concerned about her last x-ray so I am interested to see what he says.

 

A pretty boring update, but boring is welcome around here!! (: Love you friends, hope you had a blessed holiday!

 

Lindsey

little answered prayers running around...

Hey Friends!

Well Evie has reached her next milestone... She gets to go to the "playroom" with the other kids at Sunday School and can play in the "big kid side" of the gym child center. She can finally walk fast and steady enough that we feel like she can play safely with bigger kids (:

I am going to go to the Sunday school playroom with her for a while, to make sure she doesn't get trampled. The past two weeks Evie has played with a little girl named Hope. When John and I were first considering adoption/foster parenting Hope's parents came over to tell us about their journey with international adoption. That week they had gotten Hope's picture from the agency. They had finally been matched with their daughter. Unfortunately they waited over a year to bring her home after complications, it was a heart wrenching roller coaster of a waiting game. There were times they didn't know if Hope would ever come home.

Hope has been showered in prayer just as Evie has been the past 3+ years. It was so fun to see these two little girls, with their big sparkley eyes running around at our home church. God conquered mountains with his LOVE, goodness and promises to carry them through. I wish I could see how many prayers God has heard for both of them, and how many lives He has touched watching them grow! It is such a blessing to see Hope's family grow in their love for Jesus and kids all over the world through their adoption process.

This hit me during a week when I was questioning where God will take our fostering process, especially as I fall more in love with the little girl we have in our home. It was encouraging to see Hope and Evie and remember that God has a good plan, he never changes, and he knows what the next year, 5 years, and 50 years hold for us. Whether that means our foster daughter will stay here with us, or if he has other plans for her. He is good. I will think about Hope and Evie running around smiling when I get discouraged (:

I hope you are all having a blessed, God-filled holiday season! I will be back soon with holiday pics (:

Love you all, thanks for checking in on us (:
Lindsey

We did it!!

Hi Friends!!

 

We had a wonderful long weekend in New Orleans. It was surreal almost, after not traveling much for the first few years while Evie was sick. To be able to fly with no oxygen and travel without monitors was wildly normal (: We stayed pretty close to the hotel with our limited knowledge of New Orleans, but as long as the girls got to ride the trolley at least once a day they were satisfied.

 

The conference was amazing and really fun to be a part of. It was fun to walk the exhibition hall and see all of the latest pediatric innovations. One of my favorites was my free sample of "lice shield", you can never be too careful!! (: I had "faculty" on my name tag since I was speaking, so when I had offers to take samples back to my "patients" I got to explain that I was actually there as a mother and share a little bit of Evie everywhere I went. It's hard not to have a heart full of gratitude with such a glimmer of sunshine to share wherever I go!

 

Monday afternoon was my presentation. First in the program was a panel of medical geniuses; pediatricians with jobs in pharmaceuticals and research... a tough act to follow!! I was second, and shared Evie's story with a PowerPoint full of photos starting with her first hospitalization and ending with her walking on her 3rd birthday. Evie's geneticist followed with the medical/physician view of Evie's story. When we finished presenting, John, Lyla, and Evie came up with Dr. Lutz and I and we had a short Question and Answer. It was fun to hold the girls and answer questions from doctors who work on clinical trials, and had really good questions for parents. It was validating to both us and them as Evie is a beautiful example of the combined efforts of research, parental love, and God's provision.

 

What a journey we have been on. It is very emotional to retell Evie's first few years. When her disease was still life-threatening, every day had a tinge of fear. On the same note, I miss the days when I was on Heaven's doorstep every hour (sometimes more) asking for help. Begging for wisdom and discernment as we went through the whirlwind beginning of Evie's treatment. These past few years I have spent more time with my precious Savior than probably the previous 25 years combined. It is a joy and an honor to have a God who listens, responds, and loves me dearly. 

 

Here are some pics from our trip:

 

Evie getting her face painted (:

 Lyla holding a baby gator!

 Evie wasn't really into holding gators...

 kisses on the trolley after our presentation

the star of the show (:

BIG weekend!!

Hey Friends!!

After Evie's story was published in Spirit magazine, I got an email from a pediatrician in the pharmaceutical industry talking about Evie's story and asking if I had done any advocacy for her. At the time we were still recooperating from two years of hospital stays and doctors visits and I wasn't really sure where I would even start; then this past spring he asked if I would be willing to speak at the American Acaedemy of Pediatrics conference for his section, Advances in Therapeutics and Technology. Well, YEAH!!! Sign me up!

SO we are headed to New Orleans tomorrow, and Evie's geneticist and I are presenting "The Importance of Clinical Trials from a Parent's Perspective" on Monday!!!!! I couldn't be more excited to share Evie's story with pediatricians, researchers, people in the pharmaceutical industry, the FDA, etc. What an enormous honor for us to be included, and I am prayerful that Evie's story will encourage pediatricians and pharmaceutical companies to work together for the health of other kids. The research that has gone into Evie's medicine and treatment brings me to tears as it has sustained her life. I hope that I can show a glimmer of the gratitude that I feel in my heart as we have been given the gift of life by researchers who may never meet Evie, or other kids on the trial, in person.

Prayers are hugely appreciated as we travel with Lyla and Evie to New Orleans, make our way around a new place and enjoy some beautiful weather!! If my weather channel app is correct we are looking at 82 degrees and sunshine all weekend (: Sounds like a little piece of Heaven!

God is so good. My biggest prayer is that God's love and unchanging awesomeness will shine through our family as we share our experience, meet new people, and reflect on the past three years. That God will bless us, so that we can be a blessing to others.

Love you friends!! Can't wait to tell you how things went.
Lindsey