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