But God...

Hi Friends (:

It's one of those days again... one of those "wow this is going to be a long day" days that turns into a "thank you Lord" day. We have appointments 4 out of 5 weekdays this week, and today we were at 2 different hospitals; the first for an EEG, and the second for treatment and an osseous survey (which is just a lot of x-rays but didn't that sound smart!?). Regardless, my precious Evie Jayne was smiling at the end of the day, and I was blessed by the many nurses who stick their smiling faces in our door during her treatment to see how the "cute baby" is doing. She is just so cute!!! I love them, and they love Evie so we're all just loving each other (:

For the biggest "thank you Lord" part of the story... I'll be honest, I was dreading today. I love the holidays... but I am tired, and my Monday list was already overwhelming me when I set my alarm last night. But I got up, hauled the two kids, diaper bag, medical bag, and oxygen tank out the door to head to Children's hospital for our EEG. My amazing friend took Lyla last minute, so I only had to worry about Evie for a few hours.
In the waiting room I met a couple and their son. After having Eve, I notice how nice it is to have people take interest in her, so I asked what they were doing there. Their 21 month son was there for physical therapy. When he was born he had a genetic heart defect, and in September he got a new heart. He was there for physical therapy because sometime after the surgery he got a blood clot and "lost his leg" as they put it... mom shrugged as she said "so we're here for physical therapy, and he's touching lives one person at a time." This family of 3 touched my heart this morning, because they were beaming as they told about their son. He may have lost a leg... but he got a heart.

So thank you Lord, for giving us new hearts... sometimes literally. I titled this post "But God" because it reminds me of my dear friend Bethany who loves this verse (i'm going to start with the verse before it): "Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." Romans 5:7-8

Next time you are feeling hopeless, friends, remember that in our hopelessness Jesus died for you, demonstrating God's love for YOU. Thank you Lord for reminding me of your love today.

I love you friends, I'll be back with more news, and hopefully good results from Evie's tests! Thanks for praying, I feel it each and every blessed day.

Merry Christmas Friends!

I hope you all had a wonderful holiday and had some time to thank God for all of His miracles and blessings.
I got my best Christmas present a little late... today in fact... John helped me take Evie's oxygen off and on for a few minutes while I gave her a bath, and to see her little face with no tubes was the best Christmas present I could have asked for. Wow, I love my kids. In addition, we removed her O2 while we monitored her for a few minutes and her stats stayed above 90, it was so great. Hopefully she will continue to get stronger and we can throw these oxygen tanks out the front door into the 5 foot snow drifts in our front yard!... not really, they are pretty expensive!

Signing off, I have a lot of little people to pray for tonight.

Love you friends!

Happy Moments, Praise God
Difficult Moments, Seek God
Quiet Moments, Worship God
Painful Moments, Trust God
Every Moment, Thank God
by Rick Warren
- passed on by Shanna (:

thank you Lord!

we are home again. the girls are sound asleep, and i'm going to join them after i do a quick read through about the oxygen set-up we have going on in our living room (:

evie is doing okay, she seems like her happy little self, but she's pretty frustrated having oxygen tubes taped to her face. lyla demanded constant attention after the home health man left until she went to bed, so i think she's doing pretty well.

i am praying this is just a fluke deal, and evie's oxygen will return to normal soon. hopefully it's not the decline of her hypophosphatasia and the weakening of her bones, but just a little lung irritation or something.

if you happen to run into me sometime soon, i will be the lady in the sweatpants who looks really tired, carrying two kids, a diaper bag, and an oxygen tank... ha ha, i love it. it makes me smile just thinking about how ridiculous i probably look, and how wonderful it is to have not one, but two beautiful daughters to lug around (:

thank you thank you thank you for praying, i am so glad to be home. i hope you experience God's blessings to the fullest this wonderful Christmas week, and take the time to marvel at Him sending his Son to earth, so that we can know Him. wouldn't it be so frustrating to be "God" stuck in a baby body? i've been chewing on that one for a few days. he must have progressed mentally like a normal baby... any thoughts? i obviously need to do a little more research. yeah that was a little out of left field! did i mention i'm tired?? (:

i love you my dear friends, and i feel humbled to know you are lifting my sweet child up in prayer. all glory to Him.

Merry Christmas Week!

Hello friends!

Well, it's almost here, one of my favorite holidays. I'll be honest, this past weekend I was filled with anxiety about Evie's condition, longing for her to be "normal" so she doesn't have to struggle with the pain of being "different,"and guilt about not adequately preparing my heart for Christmas. Basically, I was exhausted. I have gotten quite a bit of rest the past few days, helping me to remember that (a) I am not perfect, or supermom, or invincible! and (b) God made me for these girls, and them for me... even when I'm tired (:

Evie is doing okay. Treatment went well Monday but her oxygen saturation wouldn't stay above 85 after she vomited. She has been vomiting a little lately, and they are wondering if she has aspirated some formula/vomit. Her lungs sound clear, so they think they may just be irritated from some reflux. They sent us to the ER after her treatment to have her checked out, and we stayed overnight last night. We are still on the Peds floor - we have seen a pediatrician this morning, and are waiting to meet with the geneticist. He has been overseeing her treatment and will have good insight as to what we should do.

I am hoping that we can go home today, with a portable O2 sat monitor, and oxygen. Will you pray for us that we do what's best for Evie and that her oxygen will stay up? As much as I want to get home before Christmas, Evie's health takes priority. Also prayer that I won't get weary here at the hospital, and that God will provide me with grace for today. It's hard for me to be away from Lyla (even though she's having fun with Nana!) I just get worn out, and miss the semi-normalcy of our life at home.

Thanks for checking in friends, I hope you have a blessed holiday filled with God's peace, joy, and loving kindness. Merry Christmas!

I love what Mary said when the angel told her she was going to be pregnant with Jesus: Luke 1:38 "I am the Lord's servant," Mary answered. "May it be to me as you have said."
What an awesome example of how we should live.

WEEK 2...

Hi Friends (:

We are gearing up for week 2 of Evie's treatment. It will be another busy week, we have things scheduled Mon, Tues, Wed, and Friday this week. Evie has had some trouble with gagging and vomiting, but other than that she is doing really well.

If you could pray for Evie that she would continue to grow and that this treatment would work that is what we are praying for! Also for safe travels to and from the Med Center, I don't think this snow is going to melt anytime soon... and that I can stay positive and upbeat about Evie's treatment with all of the hours we are logging at the hospital, it's difficult to keep focused when I also have to keep Lyla under control.

Love you friends!!! Thanks for checking in and praying!

so hard...

sorry i'm double posting today -

God has laid some friends heavy on my heart tonight. Could you pray for my dear friend Lindsey who lost her 8 week old daughter Jensina a few months ago? And a guy I knew in college, John, who I found out just lost his wife in an accident this past week?
With the ups and downs of Evie's condition, the thought of actually losing her is painful beyond words. If you could join me in praying for Lindsey, John and their families, and that God would richly bless them during this holiday season in the midst of their greif. They both know Jesus and I'm sure their loved ones are waiting for them in Heaven.

God is big. Heaven is waiting, but sometimes Life is so hard.

Update and Saturday...

Hi Friends,

Evie had her second injection yesterday, and so far so good! She has been coughing a bit and threw up a few times today, which we aren't sure whether to attribute to a cold, flu, or side effects of the medicine. She has been really sleepy, so we think she might be coming down with something. Prayers for healing and staying healthy please! The LIED transplant center where she will be getting her injections is just beautiful, and the nurses were wonderful. I am looking forward to receiving her injections there, it seems like a perfect fit for her (:

Also, this Saturday the Millard West DECA is putting on a Spaghetti Feed at Millard West from 5-7:30pm. They are raising money for Now I Lay Me Down to Sleep for their DECA project. It should be a great time, we are planning on getting there around 6 (: There is a basketball game afterwards if you would like to stay - we have to head out to John's work party.

Love you Friends, THANKS for checking in on us! I can't believe how far Evie has come in these past few months, Praise God for his limitless blessings (:

Lindsey

Snuggled in... at home!

Hi Friends!

Evie had her first injection yesterday morning... and it went great!!! No side effects, no allergic reactions, not a thing. Go Evie Jayne! And Lyla was relatively good most of the time for being in a small beige PICU room with no windows to the outside world... Go Lyla! John and I took turns sleeping at the hospital hotel, so one of us could stay with Eve, and Lyla could get some sleep, it was wonderful.

We start injections in the LIED transplant center tomorrow, and continue these on Monday, Wednesday, and Friday for the next 6 months. We are going to try to do them in the late afternoon so John can take Lyla home when he gets off of work at 3:30. Hopefully it will work our well, or we will re-evaluate.

THANK YOU for your prayers, I knew I was being prayed for when I woke up this morning curled up in a plastic recliner with my head on a wooden armrest, and was in a great mood! For someone who doesn't function well on little sleep, that is a direct result of the power of prayer. I have the best friends and family.

It's family time! Thanks for checking in, and I'll be sure to update soon (:

Love you all (:

AND THANK YOU Kristi and Dr. Lutz who have worked so hard to make this treatment work for us. You are amazing and wonderful.

Packing for the hospital (:

Hi Friends (:

Well, we are starting treatment TOMORROW! It is finally here. I just realized today while visiting a friend that Evie is 11 weeks already... meaning we have been waiting for treatment to start for almost 2 months. I am ready, and nervous. We need prayers that she won't have an allergic reaction to the medication, and that her body tolerates and responds well. Evie is skipping the IV dose of the medication because of the medicine she is on for her seizures, which I am happy about. She will just get a shot, and be monitored.

We will be staying at the hospital overnight, and will be coming home Tuesday. We go back Wednesday and Friday for her 2nd and 3rd shots, and stay a few hours each time for monitoring. Then it's shots 3 times a week for the next 6 months.

I was telling friends recently that I haven't spent a lot of time going back and reading through old posts on this blog... which I should. I decided to check out "September" so I could re-post the verses we had in our hospital room:

Isaiah 40:28-31

28 Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure

the depths of his understanding.
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
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.

Joshua 1:99

This is my command—

be strong and courageous!

Do not be afraid or discouraged.

For the Lord your God is with you

wherever you go.

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.

Revelation 3:20

Here I am!

I stand at the door and knock.

If anyone hears My voice

and opens the door,

I will come in and eat with him,

and he with Me.

wow. compared to what we were facing September 17, 2009 tomorrow is a gift from Heaven. Thank you Lord.

I don't think I'll have a computer at the hospital - I will post when I get back.

Love you friends (:

home again!

Hi Friends (:

Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.

Praise God that everything is great, and we didn't have to stay overnight!

THANK YOU FOR PRAYING! Love you!!!

Surgery Tomorrow...

Hi Friends,

Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.

We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.

Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.

Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.

Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.

After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.

Love you friends (:

Update

Hi Friends (:

Hope you all had a good Thanksgiving, ours was quiet and very good. John has worked 7 of the last 7 days so I haven't updated since our last doctors appointment... but I have all of my Christmas shopping done, so horray for that!

We had our meeting with our geneticist and Kristi the coordinator last Tuesday, and the treatment has been put off another week. I am pretty... well really bummed about it, and I feel like I have been watching Evie like a hawk these last few days nervous that if things are continued to be put off her health will decline. For now, I am going to continue to pray pray pray over her little body, and so far things seem to be going okay. She has the occasional cough, and has been throwing up occasionally but it may just be normal baby stuff. I am getting weary of waiting, but I have been praying for God's perfect timing and I have to believe that this is it.

We have to decide this week if we want Evie to have a "port" placed for blood draws. It sounds like it will be in her chest, but we are going to meet with a surgeon to talk things over before we decide. I am not overly thrilled about any foreign objects being placed for any reason, but I know I need to be open to what is best for her... and being poked numerous times for blood draws sounds pretty miserable. There are risks and benefits to both, so it's not an obvious answer. We will also be doing her baseline kidney ultrasound and skeletal x-rays this week to get her ready for next Monday. Hopefully things will fall into place this time and we will get started on the 7th, that is the plan for now.

I was thinking a lot this week about what I am thankful for, and I am thankful that God has provided me with everything I need to get through any situation, and he continues to show me that every day. I have an unconditionally loving and accepting husband, a hilarious two year old to bring me joy, a beautiful blessing who has made it 10 weeks against the odds, a family and support system that goes above and beyond, and an amazing God who wraps his arms around me through it all. The thousands of beautiful things around me are just icing on the cake.

Love you friends, sorry the update is so long overdue. Hopefully I'll have more news this week.

Lindsey

Wow, two months!

Happy 2 month birthday Evie Jayne!!! I love you beautiful girl.

Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.

The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!

I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!

I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.

Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.

Love you friends (:

The Plans....

Hi Friends!

I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.

On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.

Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.

When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!

Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.

Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!

Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!

Treatment... thankful

Hello Friends!

It's been a good week, I have thought about blogging several times but haven't had a second to sit down!

Evie is doing well, she only gained 2oz this week, putting her at 7lb 14oz this morning, but at least she hasn't lost any weight. 'Failure to thrive' is a concern with these little ones, and her appetite is nothing close to that, so we are pleased. She has been coughing a little, but it doesn't seem like anything serious.

Treatment wise, we are still waiting for all of the little pieces to come together. Legal documents, signatures, approval, drug delivery, then we can have her baseline visit of x-rays, eye exam, etc. and get started following that. We thought we would start treatment next Monday, but it is looking more like we will start the following Monday, the 23rd. That would mean a hospital stay over Thanksgiving, but what could I be more thankful for than Evie getting the medicine she needs!? And my parents will be so thankful for the extra time off to watch Lyla! ha ha!

Speaking of thankful, I need to give a special shout out to Dr. Lutz at the Med Center & Childrens. God sent him to us at a perfect time, and without his keen eye and accurate diagnosis of Evie's condition we wouldn't have gotten her seizures under control as early as we did, and who knows what damage they might have caused. He also had her diagnosis quickly confirmed by three other specialists, one on each coast and one in St. Louis, and got the information together for her treatment so quickly. He makes me feel like Evie is his only patient (when I know he has hundreds!) and I don't even know how many countless hours he has spent getting things in line. He also has a team of people that work with him that have helped enormously also. I thank God for you Dr. Lutz!

And thanks to my mom, who has dropped everything numerous times to watch Lyla as I take Evie to her appointments, hospitalizations, etc. She is my sounding board when I need to just get it all out and she is nothing but supportive at all times. I watched her read her Bible daily growing up and I knew the importance of hiding God's word in my heart from an early age. THANKS MOM!

Lastly, for those of you who saw a crazy lady with a good looking guy and two kids at the Nebraska vs. Oklahoma game last weekend, yep, that was us! We went to the zoo last Saturday morning, and it was so nice outside we decided to go to Lincoln that night to tailgate and catch up with family. My aunt offered us extra tickets to the game, so we decided to try it out! My dad loaned me some socks since the sun was going down (which looked awesome with my flip flops) and we headed to Memorial Stadium. As I was walking up the stairs and people were staring at us hauling our two kids up to row 75 I breifly thought "have I lost my mind!?" but quickly remembered... we got free tickets to the NU vs. Oklahoma game! Nobody gives those up!

So it was both girls first Husker game... Lyla learned how to scream ridiculously loud and 'throw the bones'... something every good Husker fan knows how to do (:
I will put up a few pics.

Evie and mom - we made it to our seats!

GO BIG RED!!!

The balloons celebrating the girls first game... or the Huskers first score (:



Love you friends, hopefully I will have more good news soon.

it's a go!... well almost (:

Hi Friends!

I got word today that we have "conditional approval" from the IRB. That is a good thing! It means some things need to be changed, hopefully just minor wording changes, and we will be good to go. A representative from the drug company is coming next Wednesday, to hopefully get everything hammered out and finalized so we can get started.

They are still looking at the week of Nov 16th, and if Evie does well and tolerates her first IV dose we may not have to stay in the hospital the whole 2 weeks of beginning treatment. That would be wonderful.

If this medicine does what it should do it should be fantastic. The first few patients have had amazing results and that is what we are going to continue to pray for. I so badly want her to be able to do the things a "normal" kid and adult gets to do, so we are starting at square 1, and this treatment seems to be where we need to begin. I feel so blessed that there is a treatment for Evie's condition, and God has paved the way for us this far.

Thanks again for prayers, I am continually amazed at how clearly and wonderfully they have been answered. Thank you Lord!

Hopefully I'll be back soon with more good news (: Love you!

thursday... irb day!

No news yet, still waiting... BUT Evie weighed 7lb 12 oz this morning!

Go Evie!!!

Hello!

Hi Friends (:

Sorry it's been almost a week... John went back to work last Monday, and let's just say he's a big help around here! The girls are doing well... we are passing around a cold but luckily it's just a head cold, nothing that should get into Evie's chest and affect her breathing. We had a great Halloween... Lyla was a tiger, Evie was a pumpkin. I will post some pictures. My grandma was in town all weekend, which was so much fun.

I talked to our geneticist last Friday, and it sounds like the IRB is having another meeting this Thursday, Nov 5th. I think this is the one where Evie's trial will be discussed. I don't exactly understand why they didn't decide last week, but it sounds like they are trying to get it passed the best way possible, so we are content with that. If it goes through we will do her treatment at the Nebraska Medical Center, where John will be working in the operating room starting next week! That should hopefully help, having us all near the same place.

As for John and I... I have been pretty anxious the past few days, and John has been working a lot. I think the past 6 weeks are finally catching up with me. Now that we have some down time I feel like I'm processing the past 6 months more than ever. I haven't spent as much time in prayer lately as I did when I was pregnant (could be lack of sleep!?), which is something I am going to change immediately. I spent some time last night on my knees talking with my Lord instead of worrying... should have thought of that sooner!

Phillipians 4:7 "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Transcend my understanding Lord! I am too tired to wrap my mind around all of the possibilities of what may come.

Well, sleep is a precious thing these days!

Love you friends... I will update as soon as I hear anything.

Prayer Requests:

1. Evie and Lyla would stay healthy... if Evie is healthy she may not have to stay as long in the hospital when her drug trial starts.

2. That the IRB meeting will go well.

3. Rest for John and I now that he's back at work and life is picking up again.

Happy Halloween from my scary tiger!

MW Deca Project

Hi Friends,

No news from the IRB yet... still waiting...

But I wanted to let you know that a group of girls from Millard West DECA (where I went to high school) are doing a project to raise awareness for Now I Lay Me Down to Sleep, the organization that does free pictures for families who have a child with a lethal diagnosis. We did maternity pictures and newborn pictures for NILMDTS, it was a wonderful experience for us, and these girls are helping give back to an organization that has greatly impacted my life.

How can you help?

1. If you are a photographer and would like to get involved, the Omaha area needs more photographers. You can check out the organization at nilmdts.org, or contact Catherine Bosley one of the area coordinators at bosleycreative@hotmail.com

2. The girls are selling t-shirts for $10 a piece to raise money for the organization. They come in baby pink, baby blue, and lime green. If you want to order one email me your size and color at LindseyLE@gmail.com and I will let you know where to send your check (: Here is what they look like

Thanks for your support! "There's no foot too small that can't leave an imprint on the world" (:

No news yet...

Hi friends...

Just wanted to let you know I haven't heard anything yet about Evie's drug trial... hopefully tomorrow.

Evie weighed 7 lbs 5 oz this Monday... compared to just 7 lbs last Monday! Something new to Praise God for this week (:

Love you, will update soon!
Lindsey

where does time go!?

Another week has gone by... where does time go??? It has certainly gone really fast the past 5 weeks having Evie and John home... unfortunately John goes back to work tomorrow. That will be a weird adjustment for us! When John was first home Lyla would say... "uh daddy, you going to work now?" it was pretty cute (: Now we will adjust back to daddy working! I remember thinking when we got married that life was finally going to settle down and I wouldn't have to adjust to change so much... ha! That's a funny thought looking back (:

Evie is doing good, we still go to the doctor every Monday and Thursday to give urine and get a weight check, and give blood on just Thursdays, but she is a trooper. They do the blood/urine to check her calcium levels. We get to go to the doc really early and I leave her in her car seat with a big cover over it so hopefully she doesn't get one of the billion cold or flu bugs going around. I have had a cold for the past week or so, but luckily (by the power of prayer!) neither of the girls have gotten it.

I got an email last Friday that hopefully we will have a better idea of what the IRB is thinking by tomorrow (Monday). We may also have a better idea of when her trial would start. I am praying for God's hand to work in the situation because I honestly feel like although I want everything to go as quickly as possible, only God knows what's best for Evie. Since there have been so few kids in the study, I am relying on Him for answers... which also takes a huge weight off of John and I's shoulders! This "learning to take one day at a time" thing has actually been a huge blessing in disguise, and really helped me to enjoy these past few weeks with much less worry. I have felt really blessed through all of our circumstances. Praise God for that! "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me;" (Psalm 23: 4) takes on a whole new meaning when you actually experience it.

On a lighter note, we took Ly trick-or-treating twice this weekend in her tiger costume, and went to the pumpkin patch last Monday. It was 70 degrees, and absolutely beautiful! I will post some pics.

I will also let you know if we find out anything tomorrow about the medicine trial. THANKS for your continued prayers for Evie and our family! Love you!

Lyla and her friend Ben - I love this picture because I have no clue what either of them are thinking!

Eve in the tub - she loves it (:

no news is good news (:

Hi Friends,

Sorry it's been a week since I posted, happily I haven't had much to post about!

Evie is doing so great, we took out her NG tube on Tuesday night, we only had to use it one time so we figured she didn't need it anymore... and she hasn't!

The drug company that has the clinical trial was in town Thursday, it sounds like she is a good candidate for the trial. That is a big relief to us. They met with our geneticist, who thought they might be able to start the trial mid-November pending IRB approval. It sounds like a while away, but I am actually glad to have a few more weeks of normalcy for Lyla's sake. Once she stops shouting "I'm so glad your home!" every time I walk in the door (after being gone for even just an hour!) I will probably feel better about being back in the hospital.

Evie's calcium levels in her blood and urine are on the rise, which is problematic. Kids who have hypophosphatasia can't absorb the calcium that is supposed to be going into their bones... and it circulates around in their blood and urine. We will be mixing low-calcium formula into her normal formula until she gets started on her medication, and her bones start absorbing things the way they are supposed to. If her calcium levels get too high it can be very bad for her kidneys and cause "failure to thrive" because she would feel all over crappy. So far she is still doing fine.

John, Lyla, and I are doing good (: I can't believe Evie will be a month old on Monday... it has gone so fast. Like I did when I was pregnant, I still feel like I go into "Lyla mode" during the day, trying to keep things as normal for her as I can, and "Evie mode" when I have some time to digest all that's going on with her. It is scary to think about all of the possiblities of Evie's condition and all that could happen with the drug trial, so I am still working on taking one day at a time. It feels good to cry out to God, and with God. I know he hears my prayers and the longings of my heart to take care of Evie the best I can with all of the unknowns. And sometimes it feels good to just cry it out.

Continuing Prayer Requests: 1. Evie's health - One specialist we have talked to thinks that Evie's bones will continue to weaken until we get her on the drug trial. Also prayer that we can keep her calcium levels under control. 2. That the IRB would pass the trial and the details of paperwork would go smoothly. 3. Adjustment for the rest of us as we become frequent visitors to the doctors offices to give urine samples, blood samples, and have check ups.

Thanks so much for loving us, and being willing to pray. We feel so blessed to have you as friends to go through life with (:

Here are some pictures from the hospital that my dad took:

Lyla had to "check Evie" every time she came to the hospital. She usually followed this by saying "I think she's workin!" or "Sounds like popcorn"

after the nurse told me that the cribs held up to 350 pounds, that's where Evie and I spent most of our time

Home! and thoughts for the day...

We are home again!
Praise God, I am so ready to sleep in my own bed... that plastic couch in our hospital room just wasn't very welcoming after so many days (: Evie is doing good, home with nothing but an NG tube (a tube up her nose) that we can feed her in if she doesn't take enough formula by mouth. Other than that, she is very close to back to normal.

I got to leave the hospital to take Lyla to church this morning (a much needed break). Rob was singing the song "Everything" by Tim Hughes and it just penetrated my heart. Here are the words from the verses:

God in my living

There in my breathing

God in my waking

God in my sleeping

-

God in my resting

There in my working

God in my thinking

God in my speaking

-

chorus: Be my everything (repeat)

-

God in my hoping

There in my dreaming

God in my watching

God in my waiting

-

God in my laughing

There in my weeping

God in my hurting

God in my healing

-

chorus: Be my everything (repeat)

What am I going to take away from this most recent bout of hospitalization?... well each day was a new day. Good or bad there was no planning, preparing, and nothing to do but be present, take care of Evie the best I know how, and trust God with that day. God WAS and WILL BE there in my hoping, watching, waiting, laughing, weeping, hurting, and healing. After 20 years of being a "worry-er" God is teaching me to trust
Matthew 6:34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

God isn't making a suggestion to me, it's a command. I can't even wrap my mind around how the next 6 months are going to go, and after thinking we may lose Evie twice now, I can't even go there.

So tonight, I'm going to go sit on the couch with John, watch Lyla play, and hold Evie. Today, she is doing great, and that is enough for me today.

Love you friends,
Lindsey

Saturday Evie Update

Hi Friends and Family!

I am sorry I have left you in the dark the past few days, we have been on such a roller coaster it's been hard to update, keep up with the doctors, read literature on Evie's condition, have snuggle time, pray, AND get rest!

After a day of decling a little bit in her recovery on Thursday, Evie did much better Friday, and even better today. They FINALLY took all of her cords off today, she is no longer hooked up to anything! Such a blessing for me to get to hold her without worrying about setting off a monitor. She still has an IV in her arm just in case she needs emergency medicaiton if she would happen to seizure again, and her nasogastric tube that she is getting half of her formula in, but we are going to try a full bottle later today and see how she does.

Evie has received a diagnosis of Infantile Hypophosphatasia. It is a rare bone disease, in which your body does not make enough alkaline phosphatase, the key enzyme in bone mineralization, and depletes your body of it's vitamin B6 stores, causing seizures. The good news is, we have gotten Evie on a regimen of B6, and she hasn't been seizing. She is also off of oxygen and her respiratory status is much better. The bad news is, there is no approved treatment for Hypophosphatasia except a clinical trial, although the clinical trial is VERY promising.

So what's next? Well, Evie needs to take a bottle and stay stable before we can go home, which will hopefully be tomorrow. Next, we need to get approved for the enzyme replacement therapy clinical trial. John and I are finishing up reading the literature and getting our questions answered. The company that makes the drug is coming out next week to hopefully expedite the process of getting the trial approved by the Institutional Review Board (IRB). This drug is the only enzyme replacement therapy available for Hypophosphatasia, so we are ready to get on board. It has shown remarkable improvement in the early stages of the trial. What's the rush? 18 out of 18 infants who had seizures in addition to severe hypophosphatasia passed away in the first 18 months of life. Ugh.

Prayer Requests: Stability in Evie's little body. That we can take her home as soon as possible. Prayers that the drug company successfully gets a clinical team to Omaha ASAP to get the trial started, and that the IRB feels a sense of urgency in getting the treatment passed. That John and I can have peace of mind and heart about the clinical trial, and that if it is not God's will for us to participate that he would throw a giant red flag out there for us. Preparation for me (John, Nana (Micki), Papa Steve, and everyone else), as the trial will require a 2 week hospital stay for Evie to get started, injections 3 times a week, and numerous blood draws, urine specimens, xrays, etc in the 6 months following the start of the trial. Prayers that Lyla will continue to adjust to our new normal and the ins and outs of taking Evie to the hospital... she is doing really good so far but we are both having a pretty hard time being apart during this hospital stay.

Thanks for loving us and praying for us! I can't believe how many emails, phone calls, texts, cards, and gifts we have gotten from friends, family and even strangers just letting us know they are thinking about and praying for Evie. God's people have truly blessed us by wrapping their arms around our family.

Love you!!!
Lindsey, John, Lyla, Evie

moving up (:

Hi Friends (:

We are out of the PICU, and back up to the 5th floor. More importantly, Evie has been off of oxygen since 8am, and her levels are staying good and stable! This is the first step toward going home. They also let her bottle feed a little, and put the rest in her tube. She sucked it down like a pro, so hopefully they will let her take more and more bottle, and less tube feeding.

Evie is getting a picc line put in her arm tomorrow, to finish a set of antibiotics. There were some white blood cells in her spinal fluid from the spinal tap, so they are treating for meningitis even though they don't think she has it... it's a precaution they always take until her cultures come back normal, which takes a few days. Once she is cleared they will stop the antibiotics.

We have an unconfirmed diagnosis that the geneticist and neurologist are looking into... it involves Evie not having an enzyme that she needs. With the missing enzyme her vitamin B6 levels get low, which can cause seizures. She has been on doses of B6 for 2 days, and hasn't seized since, Praise God! There is one experimental drug that is in the second phase of testing that our geneticist is looking into. We obviously have to weigh the benefits and risks before considering it, but it is something we are checking out.

Prayer Requests: Evie would stay stable, and without seizures. That she will be able to take a full bottle soon, so they can remove the nasogastric tube that they are feeding her through, and that her oxygen stats would stay good so we can GO HOME. I am praying praying praying that we can go home tomorrow, but they may have to watch her picc line for 24 hours, which puts us at Friday. Not only is it hard to be here, but I sure miss Lyla. She is a little "off" from us spending so much time here, and it would be so nice to get things back to normal for all of us.

Thanks friends, Love you!

Lindsey and fam.

She Woke Up!

GREAT news friends, Evie woke up this afternoon!

I decided to rub a little baby lotion on her dry arms and legs, and she opened her eyes and we talked for a while (: About 10 minutes later she had an EEG, so she had to go back to sleep for that, but she woke up one more time after that. She sucked her binky for a few minutes, which is another praise since she hasn't done any good sucking since yesterday and they were feeding her through a nose-tube (I'm too tired to think of the real name for a nose-tube).

So Praise God and thank you for your prayers. I think we get to move back upstairs to the Intermediate Care floor soon, I will keep you all posted.

THANKS for checking in and praying for my sweet little one!!!
Lindsey

PICU...

Hi Again,

We discovered yesterday that Evie is indeed having seizures, and during an EEG she was actually seizing with no outward signs of a seizure. This means she may be having small seizures between the large ones that we experienced this past weekend. She also had some interesting findings in her blood-work that the geneticist thinks may be leading him to a diagnosis of what she has. He is positive about finding a diagnosis, but not too positive about the way things are going right now, especially with the addition of seizures to her already long list of symptoms.

Last night Evie was brought down to the Pediatric ICU. She took a bottle around 3:30pm Monday and I tried to feed her in the hours following, but by 9pm-ish she wouldn't open her eyes, respond to my voice, or take any kind of bottle/binky. They thought she might be seizing constantly, so she was brought to the PICU to start seizure medicine and keep a close eye on her breathing. Our pediatrician, the neurologist, and geneticist were all here within the hour, which if you have tried to get ahold of any of these people, you know is pretty miraculous, yet clued us in to the severity of the things they were looking at.

After another EEG they ruled out constant seizures, and we may be going back upstairs sometime today. Her oxygen level is all over the place, staying at 100 for a few minutes then dropping into the 80s, low 90s, and back up to the upper 90s. She has to stay above 93 for a significant amount of time before they will let her go home. It is looking like we will be here for a few days at least.

Since moving to the PICU last night around midnight she has had a CT scan, another EEG, a spinal tap, a urine sample, and more blood work. She is getting the works to try to find the cause of this unresponsiveness.

PRAYER requests: #1. that Evie comes back to being her normal self soon. It is really scary to watch her just lay in her bed. #2. That they an come up with a TREATABLE diagnosis, and that the diagnosis will be less severe than they are thinking right now. and #3.That John and I get some sort of rest while still managing to talk to all the doctors and get the information we need.

God is good all the time. We know (from experience!) that no matter the diagnosis, her prognosis can change at any time, and life threatening diagnoses are not always life threatening (:

Love you friends,
Lindsey

We're in the hospital...

As Lyla would say... bummer dude!

After a great 2 weeks of being home, we are at Children's Hospital. Evie had a short seizure-like episode last Friday night but when we brought her in they didn't see much they could do... last night (Sunday) she had a much longer episode of straining, stiffening, some tremors, and some abnormal breathing, so we had her brought in by ambulance to check her out. They have admitted her to Children's and are going to do an MRI, EEG, have a neurologist check her out, and the geneticist look over her again. First they need to know if she is indeed having seizures, then they can determine if it is part of the skeletal issue that she already has, and then how to treat her.

If you could pray that 1. she doesn't have any more episodes, 2. that the doctors can find the cause of what's happening, and 3. we can get her unhooked from all of these monitors they have stuck all over her little body we would greatly appreciate it.

Love you friends!

Lindsey & Fam

Psalm 116:2 2

Because he turned his ear to me,

I will call on him as long as I live.

Thanks September and JD!

We had so much fun this morning going on KGBI's "Thursday Morning Praise" show. Thanks to September, JD, and KGBI for allowing us to share Evie's story of God's continuing goodness to us!

more pics

i couldn't fit all of my pics in my last post, so here are some more (:

i love this picture - lyla found labor very exhausting! ha ha

lyla meeting her new baby sister for the first time!

we stayed up all night Saturday with Evie, loving her, crying with her, praying for her, not knowing yet that her diagnosis had changed.

Tuesday afternoon - the girls getting ready to go home!

home at last!

One day at a time (:

Okay all you picture crazy people! I'm finally getting caught up on sleep (well kind of) and getting my priorities straight... like posting pictures of Evie and Lyla for your viewing pleasure (:

We are doing so good. I can't believe we are all home together, and going through the normal newborn routines of getting up in the middle of the night, taking naps, etc. It is such a welcome blessing. Both girls are doing good.

Evie still has a "skeletal dysplasia" but not a life threatening one, Praise God. We are seeing a pediatric orthopedist next Wednesday to take a look at Evie's bones and see what they think. We are hoping they can fix her clubfeet, and have some sort of idea how they think she will grow, and if there is any way we can be helpful in the meantime.

Other than that we are waiting for the geneticist to hear back from the Skeletal Dysplasia Registry about her x-rays, pictures, etc. to see if they have come up with a diagnosis. This is the same group of people who diagnosed her with OI, Type 2 from her ultrasounds. I pray that they can see God's healing hand when they compare ultrasound to x-ray! It makes me excited just to think about it (:

Many people have asked how they can pray, my biggest request is that the doctors can accurately diagnose her, or at least correctly diagnose any problems and if there is anything we can do.

Secondly, prayer that I can take one day at a time, Praise God for her life and all that he's already given us, and not worry about her future.

Okay, here are more pictures from the hospital and a couple from home. Bosley Creative did the hospital ones (why they are so amazing!) and we had newborn pictures done last night, so those should be coming soon!

Love you friends, thanks for praying (:

Lindsey, John, Lyla, AND Evie!

Lyla helping the nurse wash Evie's hair

Evie and mom (:

the fam

Evie Jayne with daddy

We're Home!

Hi Friends and Fam,

Quick update, sorry it has taken me so long, once the girls are asleep I am so tired! We are doing great. We came home from the hospital on Tuesday, and are adjusting to our "new normal" pretty well! Evie sleeps and eats like a champ and Lyla is getting more and more comfortable sharing her mom and dad. I wanted to share this "Love Is" cartoon that was in the paper on Saturday, one more glimpse of God's goodness to us and his will for Evie's life.

Love you, and I promise I will post more pictures soon!!!

Lindsey, John, Lyla, Evie (:

Evie is 2 days old!!!!

Hi Friends and Family!

Well... miracles happen!!! (: Evie is living up to the meaning of her name..... "life." We had a long weekend, delivering Saturday at 6:37 (after only 3 pushes! answered prayer!). She was loved, prayed over, and passed around to meet family and friends. Sunday morning she had a rough night, labored breathing for a few hours, and we still thought she had the initial diagnosis of lethal OI. We would look at each other with tears in our eyes every few hours and say, "wow, we've had 2 hours." "wow, it's been 4 hours" and now that it's been over 48 hours I feel showered in God's grace and loving kindness with a whole list of answered prayers, thank you friends!!!

Long story short... after a good day Sunday, x-rays, genetic counseling, seeing our pediatrician, perinatologist, and a head ultrasound, Evie no longer has a life threatening diagnosis at all. She still has a skeletal dysplasia (disorder), we aren't sure which one, and what her specific prognosis and treatment will be, but she is doing amazingly well. The important things are all in place, a normal sized rib cage, healthy developed lungs, a strong heart, normal brain ultrasound, etc. Praise God. She has started bottle feeding, and is doing great.

I can't thank you enough for your diligent praying for Evie. I can't wait to take her around town and show her off. Praise God, the Great Physician for delivering her through the valley that we were in just a few days ago. There is no doubt in my mind that whether she initially had OI or not, God healed her body, and he's not finished using her in miraculous ways. Her life is a testament to the power of God and his love for his people.

We just got to tell Lyla today for the first time that baby Evie was going to come home and live at our house, it was one of the best moments of my life. Lyla gave us the okay, and even helped change a few diapers. I am happy to report that she knows poop is "brown"... we have really been struggling with our colors and it put a smile on my face.

I could go on for hours, and I'm sure I'll get all the details out eventually, but for now let's PRAISE GOD for answered prayers, healthy kids, lives changed, and the power that comes from Him alone.

Love,
Lindsey, John, Lyla, AND Evie !!!

Welcome Evie!

Evie was born Sept 19, at 6:37pm.
She is 6lb 11oz, 16.5 inches long.
So far, so good! Praise God!
She is absolutely beautiful (:

Thanks for lifting us up in prayer, Keep it up! Pictures to come, if I ever put her down (:

Love you,
Linds, John, Ly, & Evie

Friday... going in.

Hi Friends and Fam,

In less than 24 hours we will be at the hospital... getting prepped for Saturday morning. After my doctor's appointment this morning I have felt more peace than I have in a long time. My doctor is Amazing (yes, with a capital A) and respects and supports us, Methodist hospital has made accomodations that put me SO at ease, and I can literally FEEL the blessings being poured down on us as a result of prayers and the community of believers who believe without a doubt that we will be carried through, and that God CAN heal Evie if that is His path for her life. I was reminded today that he knows the number of her days, and (as Lyla would say) it "makes my heart so happy." Knowing that we will get to see her face and hold her in our arms helps ease some of the pain of possibly losing her.
I am going to take a few verses with us to hang in our delivery room, I thought I would share them with you to hopefully encourage you also. What a blessing to know that God will be with us there.

Isaiah 40:28-31
28 Have you never heard?

Have you never understood?

The Lord is the everlasting God,

the Creator of all the earth.

He never grows weak or weary.

No one can measure the depths of his understanding.

29 He gives power to the weak

and strength to the powerless.

30 Even youths will become weak and tired,

and young men will fall in exhaustion.

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.

Joshua 1:9
9 This is my command—
be strong and courageous!
Do not be afraid or discouraged.
For the Lord your God is with you
wherever you go.


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.


Revelation 3:20
Here I am!
I stand at the door and knock.
If anyone hears My voice
and opens the door,
I will come in and eat with him,
and he with Me.

Love you,

Lindsey, John, Lyla, and Evie

Evie Update and Induction Date

Hi Friends and Fam,

Thanks for your prayers these past few months, I can't believe how fast they have gone.

We had another appointment this morning, it went fine. Evie is doing the same, my fluid level is actually better. They had a hard time getting good pictures of her face, things are getting pretty cozy in there (: Unbelievably, we will get to see her face in person very soon, I am scheduled to be induced Saturday September 19th. Depending on how my body is progressing I may go in the Friday night before so they can get me more ready for labor, stay the night, and be induced in the morning.

How are we doing? Our daily routine is nice, but I have a tough time when I sit down and take some time to process everything. I can't wait to meet Evie and tell her how much I love her and I can't wait for her to meet her dad and sister. The thought of her not surviving is really difficult for me to deal with. I understand all of the information and statistics that we have been given, but I'm not giving up any hope that she will live. We have made preparations either way.

As far as prayer requests go, my biggest fear is that she won't survive delivery. Along with the other prayer requests I have put out there, that is my biggest request. Getting to meet her and spend time with her is so important to both of us.

Thanks again, and if you don't hear from me again before the 19th my dad will be sending out updates (:

Love you!
Lindsey, John, Lyla, Evie.

"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."
Lamentations 3:22 - 23.

Thought for the day...

I just can't not share this.

"Suppose you are a gardener employed by another; it is not your garden, but you are called upon to tend it... You come one morning into the garden, and you find that the best rose has been taken away. You are angry; you go to your fellow servants and charge them with having taken the rose.
They will declare that they had nothing at all to do with it; and one says, 'I saw the master walking here this morning; I think he took it' Is the gardener angry then? No, at once he says, 'I am happy that my rose should have been so fair as to attract the attention of the master. It is his own: he hath taken it; let him do what seemeth him good.'"

It is even so with your friends. They wither not by chance; the grave is not filled by accident; men die according to God's will. Your child is gone, but the master took it; your husband is gone, your wife buried - the Master took them; thank him that he let you have the pleasure of caring for them and tending them while they were here, and thank him that as he gave, he Himself has taken away."

- Charles Spurgeon

Amen.

Doc Appointment Update Aug 25

Well thanks for your prayers everyone, I can honestly say that for the first time in a while I am feeling really at peace and ready for delivery. Don't get too excited, we still have about 4 weeks to go, but I am more and more ready to meet our little girl and enjoy the time we have with her. It is really a blessing not to be scared of all of the unknowns we are facing, I know that is a gift from Heaven above!

Our doctor's appointment went fine. Evie's condition is the same, her little arms and legs are farther behind than last week, and the amniotic fluid level is rising. She has a full head of hair, on ultrasound it looks like she has a little halo around her sweet head (: I have about a 20% chance of going into pre-term labor because of the fluid... I'm not too concerned about that with the exception that if my water breaks it's not going to be pretty (extra fluid... you get the picture). So I'll be bringing a sweater to tie around my waist everywhere I go... just in case!!! When we were talking about induction the word "tidal wave" was thrown around between John and my doc referring to if they break my water... which was funny until I thought about it happening spontaneously - which is not funny!

Other than that I have started subbing and helping out at my dad's office a little which is a great break from staying home, and John's work is going well. Lyla is being so great, her bouts of the "terrible twos" are very few and far between. I hear a 3 year old is a "well trained 2 year old" but she is such a softie I am praying that she skips the terribleness altogether. Those of you who have kids are probably laughing, but I can hope right!?

Thanks again for your prayers, I posted delivery prayer requests a few days ago, if you want to check those out. Other than that I am sleeping well, eating well, and feeling altogether pretty good. Praise God!

Love you friends, thanks for checking in (:
Lindsey