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!!

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