reflections on good lessons...

Hi Friends!

Hope you all had a wonderful Christmas, ours was unbelievably fun. One of our pastors did a sermon a few weeks before Christmas, and shared the story of Mary and Martha. Mary sits at Jesus' feet and soaks up his every word, while Martha runs around cleaning, cooking, and fretting about what needs to be done. When Martha asks Jesus to tell Mary to help her he replies that Mary is doing what is right. The main thing I got out of the sermon was that on December 26th I didn't want to feel like I missed the mark. Like we rushed through Christmas focused on presents, parties, and family, and missed out on Jesus. What a great reminder going into Christmas weekend!

So we spent a lot of extra time praying this Christmas weekend, thanking God for all he has done, and for sending his son. At Christmas Eve service I thought one interesting point was that "God sent God." Repeatedly in the Bible it says that God, Jesus and the Holy Spirit are one... but somehow it seems easier to believe that God would send his 'son' not 'himself'... but essentially he did. He endured the joys, pains, and sufferings that come from being human. He has "been here."

The second point I thought was really interesting was the thought that Jesus could have come with fireworks, an army of Angels, and trumpets playing, but instead he was born as a baby. Can you imagine being GOD stuck in a baby body!? I know is that we have a mighty Savior, who truly did humble himself to save us. I really think we hit the mark this Christmas season, celebrating Jesus.

On Christmas Eve this year we went to my grandparents lakehouse with the extended fam, and spent Christmas day with some of John's fam. It is a blessing for us to get to spend time with both sides and still have time for our little family to spend together. Christmas night we let Lyla fall asleep in our bed, and John read the story of Jesus' birth from the book of Luke. He got to the part where the Angel comes to the shepherds and Lyla interjected "Do not be afraid! I bring you good news!" I was one proud mama at that moment, although I have no idea how she knew that! Thank you sunday school teachers or preschool teachers, Lyla is listening! (:

I have also had a heavy heart the past few days for some friends who are hospitalized. Aria, who I have mentioned before, has been in and out of the hospital for the past few weeks with respiratory concerns, and headaches. They just can't figure out what's wrong, and her parents are exhausted.
There is also a little boy named Gideon up in Canada whose grandmother has emailed me a few times. She sent me a link to his caring bridge site a few days ago. He has hypophosphatasia like Evie, and has been on a ventilator since birth. His birth didn't go as smoothly as hers did, and they are dealing with complications. Evie was on a vent for 8 days during RSV, and I have to say, it was torture. Not being able to hold her, and just the sheer fear of the look of that big machine breathing for my baby was so incredibly hard. I can't imagine doing it for months.

I was reading Gideon's mom's post on his site a few days ago, and she concluded with this verse:
Romans 8:35-38 (i'm going to post 37-38)
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

And that is the story of Christmas, friends. Nothing can separate us from the Love of God that is in Christ Jesus. Amen!

... Oh did I mention Evie's doing great? (this is HER website isn't it!) We have three doctor's appointments next week, orthopedic (bone) surgeon, eye doc, and pediatrician, so I should have some updates. Other than that we are hanging out at home, enjoying the holiday break.

Love you friends. Thanks for loving us.

Merry Christmas!

Merry Christmas from the Elsaessers! Update coming soon (:

Love you!!!

(oh and yes, evie's still on oxygen, just took it off for pics!)

Oxygen Anniversary & Merry Christmas!

Hi Friends (:

Where have we been!? Honestly, I have no idea. This time of year just FLIES by! It has been so much fun buying gifts with the girls, and talking to them about Jesus' birth. Lyla is slowly getting it... like I'll say "Lyla what is Christmas?"
Lyla - "Jesus Birthday!"
me - "Why did Jesus come to live on earth?"
Lyla - "to sleep in the hay!"
me - "and he came to save us so we can go to heaven!"
Lyla - "now?"
me - "no, when we die"
Lyla - "when?"
me - "probably when we get old"
Lyla - "Is Santa dying? He's old"
me - "I don't think so."
Lyla - "okay." (:

In the spirit of Christmas my dad and I went to Lincoln this past weekend to sing in a Flash Mob! It was super fun to get together with people from Lincoln, Omaha, and surrounding areas to sing Praises to God and celebrate the Reason for the Season. I will post a link below if you want to watch the video... There's a little footage of us at the very beginning eating lunch and pretending like we're not going to bust out in song (: The echo is pretty bad on the video but it sounded marvelous in person! Super fun!
www.youtube.com/watch?v=Gif7QD5_yc8

And tomorrow is the one year anniversary of our hospitalization to put Evie on oxygen. On one hand, WOW that went fast! On the other... SHEESH it feels like she's been on oxygen forever! Just a blessed reminder of how much we were hospitalized last year, and how blessed we are that she has been stable for a few months, and so close to being off O2 (: Merry Christmas to us!

I've also been thinking a lot about how many comments I get from people who say things along the lines of 'you know, I have given my life to Jesus, but I have such a hard time letting go of my kids, and giving them to Him also' or 'I just can't seem to put my worry for my kid's in God's hands, I don't know how you do it.' Friends, I know you genuinely love your kids, just like we genuinely love ours... and the past few weeks I have been overwhelmed with reminders of how many times God has healed Evie.... birth, seizures, oxygen needs, stopping breathing, RSV, brain surgery, and more seizures here there and everywhere. Things that I, as a mom, couldn't have fixed on my own.
What I have learned in this past year is that I shouldn't only trust in God's will for the lives of my kids, but hand them over willingly to the only One who can knit a body together in the womb of her mother. Who can keep her breathing when she's struggling, and to keep ME breathing when she's struggling. I know there were times when God alone was keeping Evie alive. I have watched her oxygen level drop to 7%. Yes 7 out of 100... and she, with God's help, got back into the 90s and made it.

I have been blessed this year and a half by the most amazing parent of them all, God himself, as he looks over all four of us. I am so humbled and eager to go into this Christmas season full of thankfulness and joy, to celebrate the birth of God's son, who he sent to LOVE us, and pay the ultimate sacrifice for our sins, death... so that we can live with him forever. Is life hard sometimes? Yes. But we can have the ultimate JOY of knowing Jesus himself has been here... and now, unseen, still is. Thank you Lord!

Merry Christmas Everyone! Praying God's many blessings for all YOU! May all Glory be to Him this coming week and beyond (:

Love you friends!

Santa!! (: ..... or should I say Santa ):

Santa was on "break" when we arrived at the shopping center, so we played in the surroundings for a while (:

Lyla insisted on touching each fragile fake animal... climbing over rocks to get there... promising she wouldn't fall in the fountain...
Evie all ready to go!

I know this pic is blurry, but doesn't Evie's face just say it all!?

Lyla telling Santa what she wants for Christmas... she keeps flip flopping between a pink barbie and a new puppy... She's getting the barbie!!!

really pretty scene around Santa

Well our picture didn't transfer to the computer the first time so we told Lyla she was the "winner" and got to cut in line to see Santa again! We had to put Evie's oxygen back on the second time she was still so upset from the first go-round...

Gingerbread house making! Usually when Lyla smiles like this it's because she's being bribed to smile (:

say "bribery!"

"Go Mommy and Lyla!"

Evie cheesing it up for the camera while we're hard at work

strategizing...

placing...

Eve is playing "peek-a-boo" in this picture, how funny is that!?

and finished!
Horray! The House is done!!!

when i was uploading pics from my camera it went straight from the picture above to this one (the first saved on my cam). Isn't it amazing how far we have come in the past 15 months!? Praise God!

Love you friends! Sorry it's taking me so long to get back to posting these days... still not feeling great, and John and I have both had the stomach flu... we need to kick this winter sickness! (:

quick update!

hi friends!

well i have a lot on my mind to post about, but wanted to give you a quick update since i need some sleep. we had a good week last week, Evie had a neurology appointment on Wednesday, and she weighed in at 16.2 pounds!!! i can't even believe she has grown that much!

wednesday morning i woke up pretty dizzy and the room was doing some spinning. i was pretty scared but evie's neurologist told me to wait a few days until i called the doc. i finally called yesterday and he said i probably have some sort of inner ear virus. i feel really awful in the morning (dizzy and nauseous) but it progressively gets better through the day. i'm supposed to drink lots, and get rid of caffeine and salt... no wonder i feel awful!!!!! evie and lyla both have colds, so we are patiently waiting those out although the seem to get better every day.

on Friday we went to see Santa at the mall, it was really fun. we paid our horrendous fee to sit on his lap and get a 4x6 photo, and since our picture somehow didn't make it from the camera to the computer to be printed we got to cut in line and go again (Lyla thought she was the "winner" since she got to see Santa twice - ha ha). evie thought santa was worse than the hospital, especially since we sat her back on his lap after a first go-round of tears, but Lyla thought he was pretty cool. she wants a pink barbie (news to us!) for Christmas, and thinks Evie needs a new sweater. i will post pics when i have a little more time. we made our annual gingerbread house this afternoon and i tried my baking skills by making some bread my mom made us when we were kids. it shockingly turned out great! (: maybe i'm not such a bad cook after all.

if you could pray that we would all feel better that would be great. i get sick of being sick pretty quickly (:

thanks friends, love you and be back soon with photos!

thankful...

Hi Friends!

Well I have had this post floating around in my head since before Thanksgiving, and it's been a struggle to get down in words... I am so thankful for so many things, it's hard to write down what I'm thankful for, and feel like I've done it justice. So I'm just going to give it a go.

I am thankful for God's faithfulness. His love. His perseverance in my life. His constant presence. A plan, that I'm finally content not knowing... amazement at how the past few years have turned out infinitely better than I could have known. Love so deep and wide it pours out into everything beautiful He has made.

I am thankful for a husband who likes to hold my hand. All the time. Seriously, like always. Who takes care of the big stuff, and reminds me not to worry about the little things. Who loves me unconditionally, no strings attached. Who is super fun, and super funny. And makes me feel like the only girl in the world.

I am thankful for my Lyla, who in good ways and bad, is strikingly similar to her mother. She cries hard, and laughs harder. She says the funniest things at the funniest times. She has been the perfect partner in crime to walk through the past 3 and a half years with. She has taught me how to love being a mom because she's just so easy to love.

I am thankful for my Eve, who has shown me joy and perseverance. Who has her dad's laid-back, fun loving, darling personality. She lights up a room with her sparkly blue eyes, who have seen more healing in a year than some experience in a lifetime.

and lastly, I am thankful for the community of family, old friends, new friends, internet friends, strangers, moms, dads, sisters, bible study gals, health professionals, neighbors, and everyone else I get to do life with every day. I can't express the encouragement you give me and strength to keep on keeping on (:
We are blessed beyond words.

I am thankful for YOU! Love you friends (:

where have we been!?

Hi Friends!

Rarely do I let 10 days go by without updates! I feel like I haven't sat down in the past week and a half (: So let's start with the good stuff. Evie had physical therapy on Wednesday and it went fabulous again! We had two Occupational Therapists, Evie's case manager, and her Physical Therapist. There was talk about getting her back to the orthopedic surgeon earlier than February to look into a procedure where they would "clip" the tendons on the back of her feet, to lengthen them so she would be able to flex her feet to stand/balance herself. What an exciting idea! As one of Evie's therapists said "we didn't expect her to be sitting so soon!"



Grandma Dellie was in town that same day so we went out to the lake to put up her Christmas tree. The girls love Grandma Dellie AND the lake, so it was a fun afternoon!

We had Thanksgiving at Lyla's school on Thursday, and although you weren't supposed to bring siblings, no one seems to be able to tell Evie that she can't come along (: So we enjoyed Thanksgiving meal together with some of Lyla's new friends, nothing like Deli Turkey, Jello Jigglers, Fruit Salad, Popcorn, and Cookies!

On Saturday we went to our first LPA (Little People of America) event! It was at the Amazing Pizza Machine, and it was so fun to meet some amazing families of kids and adults who have either a form or dwarfism or a skeletal dysplasia like Evie. No one else has hypophosphatasia but that was expected! I have been researching local groups, like the Omaha Down's Syndrome Parent's Network, to find out where Evie and our family would fit the best and I'm thinking this is it. They only have a few events a year, but when Evie gets older there will be events regionally and nationally that she can attend if she wants. What a neat opportunity! We want Evie to have the support, we want to have the support of parents, and we want Lyla to have the support of siblings.

Lastly, the girls both have colds again. I guess that time of year is starting up. So we stayed home on Sunday and put up the Christmas tree! I will put up a preview of our Christmas collage, but you'll have to wait until the Holidays for the full thing!




Love you friends, I'll be back sooner next time! Although it is pretty nice to have "boring" updates! (:

Lindsey

why it's a big deal...

Hi Friends!

We made it through the week, thanks for praying. Blood draw Tuesday went amazingly well, just one poke... Wednesday took 3 pokes, and Thursday only 2. But thankfully we got all the blood we needed.

Our PT Eval on Thursday went AWESOME! I forgot we hadn't seen the evaluator for three months, and Evie has improved so much. Three months ago Evie couldn't roll over, sit up, pick up food with her hands, or feed herself... ALL of which she can do now! Big, big improvements. Then we got to see one of our favorite docs on Friday, he was absolutely thrilled with Evie's progress. We are so lucky to have so many people who take a special interest in our special girl (: On our way home we swung by the pediatricians office for a weight check, and Eve weighed in at 15lb 6oz!!! She is obviously still off the normal growth curve, but her own growth curve is on the right path! (:

And I've been struggling with the oxygen. I tried really hard to ignore it and move on but for some reason since her test it seems like her concentrator buzzes a little louder, and her tanks are a little more annoying... I'm sure just because I was hoping to be done with them. My big struggle with oxygen is that she looks different with her O2 off. And I miss her little face being plastic free. So I decided when I get sad about it I'm just going to take her tube off for a few minutes and get a glimpse of what we have to look forward to. I will post a glimpse here for you to enjoy (:

Love you friends, thanks for praying and caring about us!

Lindsey

downs and UPs.

Hi Friends...

Well we did not pass the oxygen test. I got a call yesterday afternoon and the nurse said that for a total of 1 of the 11 hours of the recorded stats Evie's O2 was less than 90%. Supplemental oxygen is the recommendation (we stay on oxygen). I was super bummed but we had a friend over so I decided to suck it up for the afternoon, cry for 5 minutes after our guest left, and move on. Evie needs oxygen, we stay on oxygen. We have too many things to be thankful for to mope about it.

I thought yesterday was going to be an awesome day, we only had one doc appointment and nothing else on the calendar. After losing one set of keys, locking my spare key and my children in my car, and being 45 minutes to the doc appointment I was pretty wiped out! (: We had lunch, did a little Christmas shopping and sort of redeemed the rest of the afternoon.

On the flip side, I thought today was going to be TERRIBLE, and it was fabulous! We had Bible study this morning (I just LOVE my ladies), dropped Lyla off at preschool, had a very productive 2 hours of sewing, picked Lyla up and headed to the hospital. Prayed the whole way there, and did the blood draw first - they got all 4.5 mLs needed in the first poke. Praise GOD!!!!! Next we did the kidney ultrasound, which was painless and Evie did great. While we waited to be called back for blood Evie was waving, blowing kisses and doing "so big." Everyone loved it, and it was so fun to watch her put on a little show for her audience while we waited.
Lastly we stopped up to see some hospitalized friends, and saw some more friends in the parking garage. It's amazing how present God is in times of trouble. He truly has a peace that transcends understanding. My heart aches for my friends who are hurting, but blessedly they all know Jesus and are relying on his grace.

So there go my expectations! Maybe if I start expecting terrible days they will all go this well (: If you could pray for our friends, they are really hurting. Also we have to collect overnight urine tonight (kind of torturous) and x-rays tomorrow, which we both dread.

Love you friends, I could feel your prayers today and truly deeply appreciate them.

no news is...

no news! Our pulmonologist was out of town this past week so we are waiting to hear results of Evie's oximetry. I am getting the feeling that she is borderline as far as getting off O2 and they may leave her on for a few more months, which is okay. Better safe than sorry... OR she could be doing completely great. I'm trying not to get my hopes up. I will let you know as soon as I hear!


Evie is doing SO great. She pushes away her bottle the minute she sees food. Food, food, food, it's all she wants, which is good! We have her 3 month check this week, so it will be fun to see how she has grown. Like I've mentioned before we have a check every 3 months that includes 3 blood draws, a couple urine samples, kidney ultrasound, full skeletal x-rays, scale of infant and toddler development, and a doctor exam. Honestly, I'm dreading everything except the development check and doctor exam. Evie is finally to the age where she understands that people are essentially hurting her when they poke to take blood, and looks at me like 'mom! why are you letting them do this to me.' It's really hard. Really really hard.


On the positive side Evie has progressed so amazingly physically, her developmental check will be super fun. A lady flys in every 3 months to do her checks, so she hasn't seen all of Eve's new tricks... rolling over, sitting up, chatting, etc (: I can't wait to see the look on her face when she sees how well Evie is developing! And our doctor exam is a lightweight exam to check weight, height, etc. and I just LOVE our doc, so that makes it fun.


This week has been a tough one. Several of our friends are having health issues, and my friend's sister was in a terrible car accident. Being hospitalized is so fresh in our minds still that it's hard to know our friends are enduring such pain. My heart breaks for them, yet my faith is always renewed to know that God loves us, and wants us to come to Him in our pain. He is listening and healing. Friday night John took me on our first date without Evie in over a year! It was so fun to talk, listen, and love each other with no distractions. I don't think we'll wait a whole year before we go out again (:

I haven't had a "list" of prayer requests for a while, but have a few this week if you are willing to pray for us:
- our friends who are going through health problems, health tests, and pain. Healing and strength for all involved.
- Evie's blood draws. We have draws Tues, Wed, and Thursday. That she knows how much I love her even though we have to get her blood, and it hurts.
- Evie's x-rays on Wednesday. I'm going to ask if they will let me wear a vest and stay in the room with her. It's too painful to watch her cry and look for me in a panic.
- That the people involved in Evie's care feel Jesus' love from us even though I'm tired from this past week, and not really looking forward to the coming pokes.


I truly love you friends. I am so incredibly blessed to KNOW you are praying for us.



Here are some great pics from Halloween. Thanks Papa Steveo!

our little penguin

our little shark

group picture! the dino, penguin, and shark on a candy mission! (:

... trend oximetry happening now!

Hi Friends (:

We are 3 hours into the monitoring of Evie's oxygen, heart rate, and respiratory rate with her having NO oxygen on. I am just loving her little tubeless face (: We might not be able to sleep without the rhythmic humming of her concentrator tonight but we'll get used to it! I honestly have no idea how the test is going to end up... she needs to stay above 90% saturation on her oxygen and she has been all over the place, she hit 96 at one point, and was at 87 at another. Luckily I don't have to read the test (: The nurse at the pulmonologist's office said she will get back to us by Monday... we're hoping by Friday, but it's already been 10 months, what's one more weekend.

Love you friends! Thanks for praying, you're the best!
Lindsey (:

one down, one to go!

evie's echocardiogram came back GOOD! i honestly thought i was setting myself up for disappointment, so i tried to tell myself there was only a 20% chance she would pass... but she did!!! we are doing an overnight "trend oxcimetry" on tuesday, basically a machine will keep a record of her breathing and oxygen saturation overnight and if she passes that one we can take off the oxygen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

too tired to even capitalize... crazy week, can't wait to sleep, but had to let you all in on the good news (:
love you friends! thanks for praying (:

pulmonology update...

Hi Friends (:

Our visit with the pulmonologist yesterday went well. I didn't even have to beg (: We talked about where Evie's O2 saturations are, and he said if we do an echocardiogram and her heart isn't distressed at all, we can try to take her off of O2! So we did the echocardiogram before we left the hospital. I am cautiously optimistic. Evie has been pulling her tube off of her face constantly the past few days, and I almost feel like it's a sign that she's ready to be done... but we need to put her heart and lungs before her and my desire to get rid of all these tanks and tubes!

SO we wait for results. I will post them as soon as I know anything (: If her echo goes well then we have a oxygen monitoring test overnight, and if that goes well I take back the tanks and we have a celebration dinner (: If not, we just wait 3 more months and try again. God is good, and it will all come in due time.

Love you, and thanks for praying!

oh yes oh yes oh yes!

Finally, I got a sitting up picture worthy of posting. You'll have to excuse the slight blurriness... times like this are only captured with the always on-hand cell phone camera (:

Evie and her similarly sized care-bear pal... get her Eve!

AND it is with an unbelievably happy heart that I tell you, Zoe Eliana was born on Sunday morning at 9:51am, weighing 5lb 14oz. From her mom's facebook page I can tell you that she is breathing and eating on her own. She is taking no pain meds, and as far as they can tell isn't in pain! She will have her x-rays and full set of tests when they are released and can go to the Children's Hospital where they live. Thank you Lord!

and THANK YOU for praying friends! You guys are awesome. Love you!

the little things are big things (:

Hi Friends!

What a good weekend! John and I actually got a babysitter tonight (for Lyla... Evie always gets to party with us) and had a night out with friends. It was nice to get out for a bit, relax, and catch up. Evie is doing great, we have been so busy it feels like! Today we got to go to a friend's Make-A-Wish kick off party, and I am always in awe of the strength God gives a family to not only persevere but to grow and thrive in the midst of health troubles. It's fun to be around families who have struggled a bit, because it's always the little steps forward that are so joyful... something we miss out on sometimes with "normal" kids.

Speaking of little steps, as I mentioned before Evie is sitting up, now for minutes at a time! I still don't have a picture, I am waiting for a good one, which I think may be impossible to capture because I get so excited the picture never captures my excitement (: Hopefully soon I will capture one that is great enough to post! She is also blowing kisses. The really fun thing is that I'll say "Evie, blow kisses to daddy" and she turns to John and blows kisses without me showing her how, or pointing to John.... so she is identifying people, and following instructions without having to be shown. That shows big physical and cognitive growth! Go Eve!

And for a few prayer requests.... we see the pulmonologist this Wednesday, and I am going to BEG to try to wean Evie off of oxygen again. Most of the kids in her clinical trial were on O2 for 4 or 5 months, and we are two months shy of a year, so I'm a little weary of carrying tanks around. I'll probably have to start eating fewer calories when I don't have the extra weight to carry around, but it will be well worth it! (: From what I've heard they have allowed other kids to wean when they are sat-ing around 93-95 consistently, and Evie has leveled out right around there. She was improving and improving, and the past few months she has stayed the same. I feel like this is a sign that she has improved with assistance as much as she's going to, and we need to let her body try on it's own... but I'm not a pulmonologist, so we'll see what the expert has to say (:

ALSO, I got an email last June from a mom, who also received a lethal diagnosis for her unborn daughter of OI type 2 and decided to continue her pregnancy. She was given the same options (by the same doctor in California as us... coincidence, I think not!) as we were, terminate the pregnancy, or donate the baby to science when she passed away (pretty cold hearted... and heartbreaking). Regardless, precious baby girl Zoe has made it to term (HOORAY!) and Chelsea is having her c-section tomorrow. Will you join me in praying for Chelsea, her husband Curtis, and their new baby Zoe? From experience I would say to pray for complete healing, peace, joy in the midst of nervousness, safety for Zoe, and TIME. A lifetime of time.

Thanks friends! I love you so much, and love sharing our little achievements with you (: It blows my mind to know that there are some of you that I will never meet on this side of heaven, but we'll have an eternity to get to know each other. How awesome is that (:

my crazy kids (:

Hi Friends!

Sorry it's been a while since I posted, I downloaded my pictures of the girls, and forgot to post them! This week has been unexpectedly busy, but good. We saw Evie's neurosurgeon Tuesday and all is well! Everyone who sees her says "well her head shape is beautiful" which I guess is what they look for. She will have a CT scan to look for pressure in 3 more months, with another appointment. We had Evie's teacher come on Monday and she thinks Evie is progressing beautifully... and her PT and OT came today to the surprise of Evie SITTING up! On her own! She can hold her little body upright for 2-3 minutes (: It is the darn cutest thing. I'm always sitting behind her for when she falls over so I don't have any pictures yet, but promise to get one soon (:

Here are the girls Halloween costume pictures, finally!

Lyla has been telling everyone she's going to be a shark, Evie's going to be a penguin, and "Sharks eat penguins!!!" She has been watching a little too much discovery channel with John (:

Love you friends! I'll be back soon (:

craving God...

Hi Friends (:

This fall has been an interesting time for us. I feel like last year was sooooo so so long ago... and yet just the smells of the season can bring me joy and make me nauseous at the same time. The past few weeks my spiritual walk has felt a little dry. We've been busy, and I just haven't spent the good quality time in God's word that I so need. This past weekend there was another sermon in Revelation that has led me to really dig into my Bible, and I connected with some new friends who love Jesus this past week. The funny thing about God to me, is that once I get a taste of Him, I crave Him to the point where I don't know how I could ever spend a day without Him. And my prayer life goes deep, where I can't sleep because I am so marveled at God's goodness and just can't stop telling Him about it.

I love these seasons, where I appreciate everything a little more. I told my friend the other day "I've been watching Evie sleep a lot lately" which sounds weird, but I have. And I have continued amazement at the GIFT we have been given of her sweet face every minute of every day. I can hardly leave the house without missing her, and I WILL take naps with her when I want... because I can! (:

So thank you God for this season of fullness. Help me to use it to be a good, life-giving, nourishing, mother for my kids, a compassionate wife, and a God-honoring friend.

Love you friends, and YES I'm working on those costume pics, I can't get these kids to sit still! (:

pumpkin patches...

Hi Friends (:


I am uncharacteristically excited about Halloween this year... maybe because the girls have such stinking cute costumes! (I will keep you in suspense until I get a good picture) ...and because Lyla loves pumpkins. I haven't talked to her much about the scary stuff, and the other day at a friend's party she said "look mom! an x-ray man!"... also known as a skeleton. That's when you know your sister has a bone disease, you're 3 and you know what a full x-ray looks like.
We have already been to two pumpkin patches, and painted our pumpkins. The spray glitter is still drying, pictures to come (: Brian is almost finished taking photos for Evie's story, so I'm sorry you're going to have to put up with my amateur pics... More importantly, Evie is feeling better. She finally stopped throwing up late last week, and is adventurously trying new foods. She's a big fan of peaches, pears, bread, and sugar cookies! When you need to gain weight you get the good stuff (:
Here are some pics from the past week:

Evie looking for daddy and Lyla in the corn maze (photo by Brian Lehmann)

and my amateur photos: Lyla on a pony...

our attempt at taking a cute picture on the tire swing...


pumpkin girls!

the Pooleys patch...


Evie glowing in the corn bin...

Lyla at Valas by the bunnies (:

Lyla and her buddy Matthew...

a scary spider...

Cinderella and Prince Matthew!

Love you friends! Pumpkin and costume photos coming shortly (:

sick, sick, sick...

Hi Friends (:

Sorry it's been a week since I posted, this weekend has flown by in kind of a bad way unfortunately! Evie had what seems like the stomach flu all day on Saturday, and a little bit on Sunday. Yesterday she kept her formula down, but vomited up her seizure meds, which she had also done on Saturday and Sunday and last night she was acting a little funny... (most likely having seizures) so we took her into the ER late last night to get a shot of her medicine. She did very well today, we kept her on Gatorade until dinner, and let her have formula at dinner. She gets her meds again tomorrow morning, so you can pray that she keeps them down. Whenever she gets a tummy bug she always has a terrible time keeping her medicine down, I'm not sure if it's the way it tastes or the consistency, but it just throws her for a loop for days after.

In other news, we are going to the pumpkin patch this Thursday with Lyla's preschool, and possibly Pooleys in Bennington tomorrow if Evie feels okay because John has the day off! Lyla got her halloween costume over the weekend... she has been asking to be a Shark and I finally found one (: ... her and John have been watching the discovery channel, and she just loves sharks. So again this year, we were shopping in the boy section of halloween costumes (she was a tiger last year) but shes the darn cutest shark I've ever seen!

I will post some pictures of our adventures later this week!

AND I haven't printed our book yet, so if you still want to leave Evie a note please feel free on the "To Evie Jayne with Love" post!

Love you friends (: Thanks for checking in.

To: Evie Jayne with Love (:

Hi Friends,

I found a website through a friend called blog2print, and I'm going to print Evie's blog into a book for a keepsake for her (and us!). It prints "comments" along with my posts... so I thought I'd take this opportunity to let you all leave a note for her before we print this first book, her first YEAR! I am going to wait at least a week before I print, so if you would like, do so before Friday October 8th!

All you have to do is click on "Leave a Comment" below (:

Love you friends! You are great!

i left her...

on purpose.

Hi Friends,

Yes, today was a monumental day... I left Evie in the nursery. We had Tuesday morning Women's Bible study and I've been leading a discussion group for the past few weeks, and decided since Evie felt good and there are only three other babies in there, to give it a go. I'm pretty sure that one of the workers watched the 3 other kids while the second watched Evie (: I was a little frazzled before I left, and told them not to let Eve cry too hard because she would get congested and then sometimes she can't breathe. That was probably a little harsh, but when Evie starts to struggle, she goes down fast. So I guess it's better to be overly cautious! (: Anyway, they did a fantastic job, THANKS ladies!

When I got upstairs where the leaders pray before study, they kind of collectively noticed I didn't have Evie with me to which I had to quickly respond "Don't talk about it!" before a few hot tears rolled down my face. I honestly can't believe that something as small as leaving her for two hours was so hard... but I've been with her every day, every night, every hospital stay, every code, every blood draw, every poke, every scare, every everything for the past year. When I'm not holding her she typically looks around until she can find me, and even when her eyes were swollen shut after surgery in July she would wave her little arm until she felt me beside her. So the thought of her looking around and not being able to find me makes my heart hurt a little. But she also needs to know that she is going to be okay without me eventually so hopefully this will ease her into that.

So we made it through our first two hours apart, with the exception of the times John watches her, and I'll be honest, I'm still a little sad about it. Maybe it's because she's growing up. Maybe it's because she was the only 1 year old in the newborn/baby room (instead of the crawler or walker rooms). Maybe it's because I felt distant from her for the first time by choice. Maybe I'm just not ready. We'll see.

Love you friends (:
Lindsey

1st Birthday Pics!

Hi Friends,

Well here they are... birthday pics! I want to give a huge THANK YOU to Brian Lehmann... who has been following us since February to develop a photo story about Evie's first year. He has been there to document many occasions throughout our journey that I wouldn't have otherwise had pictures of, and has been so generous in sharing memories with us. Brian, it is an honor for us to call you "friend."

blowing up balloons... our goal was 365 and we got pretty darn close (:

Evie was hanging out with Papa Steve while we got ready

my dear friend Patti helped me make these awesome cupcakes...

and cake pops!

singing happy birthday!!! and waiting for eve to devour her cake (:

John had to help her at first...

but she got the hang of it very quickly!

not bad! (:

photos by Brian Lehmann www.brianlehmann.com


And our friend Staci took a few portraits for us (:

yep she's that cute!

Thanks again everybody for coming, loving us, and sharing Evie's birthday with us! and Thank you Jesus for this year of joy, peace, and triumph over illness:

.

You have turned my mourning into joyful dancing.

You have taken away my clothes of mourning and clothed me with joy,

that I might sing praises to you and not be silent.

O Lord my God, I will give you thanks forever!

(Psalm 30:11-12)

Amen! Love you friends!

THANK YOU!

Hi Friends!

So many of you came to Evie's birthday party, and brought her wonderful cards and gifts. I hope you took a Thank You card on the way out... but judging by the number we have left, I'm guessing not everyone got one!!! SOOO If you didn't grab one, couldn't come, or just plain want one, please email me your address and I'll stick it in the mail! LindseyLE@gmail.com I don't want anyone to go un-thanked!

I'll post a preview below (: