the crazy life...

of the Elsaessers! We have had a couple crazy weeks, but got some good pics (:

Sunday: Grandma Dellie, Papa Bob, Lyla, Papa, and Nana at Lyla and Papa's birthday party

Wednesday: birthday pancakes on Lyla's birthday morning!

Wednesday afternoon: Lyla and daddy went to the zoo for her birthday

Evie and mom went to the ER because Evie was having seizures...

she was probably having seizures because she had a virus/fever the few days before. They did a spinal tap and some blood cultures to check for infection, but nothing grew so we got to go home on Friday.

Saturday: We had Lyla's birthday party on Saturday morning... Shrek and ice cream (:
finish it off with a little swimming (:

AND my older sister had a BEAUTIFUL baby boy the following Wednesday, Henry Robert. He is darling, and my sister and her husband are doing great. Thanks for praying!

Love you friends (: I am hoping we won't have any appointments this week, at least we don't have any scheduled! Evie has physical and occupational therapy on Wednesday, but that doesn't count because we don't have to leave the house, and it is so fun!

Insurance Prayer

Hi Friends (:

Thanks for all of your encouragement about insurance. The plastic surgeon who will be involved in Evie's surgery has sent a letter to our actual insurance company, and I had to write a letter to send to the Nebraska Medical Center HR department, to try to get the surgery covered at Children's hospital. Children's is considered "out of network" (which is pretty ridiculous) so we have to get it pre-approved. A really nice woman from the Med Center HR called me today to tell me that she received my letter, which is a really nice courtesy. I have her number so we can stay in contact about the process. Once both parties approve it, we should be able to schedule. In the meantime I'm going to pray that the process goes quickly and smoothly, and that Evie's brain doesn't get any more pressure than it already has.

THANK YOU for praying, I was a little afraid to post about insurance, I appreciate your kindness and willingness to help us out!

AND I have a whole bunch of pictures to post when I get a second, get excited!

Love you friends, you are the greatest!

Cranio Facial Clinic

Hi Friends.

I'm trying not to be disappointed about the clinic today. In my head I imagined the plastic surgeon and neurosurgeon carefully detailing each inch of Evie's head and making plans for her surgery, which I thought they would schedule soon because of the fact that she had seizures last week, and her soft spot continues to bulge higher and higher out of her head.

As I was checking in, the neurosurgeon was nearly running out of the clinic with his residents off to an emergency. Don't get me wrong, I am glad they were available to go, if it was Evie having an emergency I would want them hurrying to help her! So we met with the plastic surgeon, who had only had a few brief seconds to even talk to the neurosurgeon about the case.

Here are the highlights of things that we learned today:
1. our hospital stay will probably be 3-5 days. A day in surgery, followed by 24 hours in the PICU bandaged up with a drain coming out of her head, followed by a few days on a normal floor.
2. they aren't going to sew Evie's eyelids shut. I have heard about them doing this during other kid's surgeries, and I was pretty bothered by it... this plastic surgeon uses other methods to keep them closed.
3. they are going to cut Evie's scalp from one ear to the other, remove the bones across her forehead, reassemble them with dissolvable plates and screws, and put it all back in.

I was pretty disappointed when the plastic surgeon told us he would get ahold of us in 6-8 weeks when insurance approved the surgery so we could schedule it. SIX TO EIGHT WEEKS!? We were originally told 2-3 weeks, and last week they said they were going to move it up... so now we don't really know what to expect. Evie has had some odd days here and there, and we are ready to get this done and over with so we can stop worrying about it.

Lastly, could you pray for our insurance issues? This morning I got a call that insurance decided not to pre-approve us for our visit this afternoon... giving me a whole 4 hours to get that straightened out. Not too long after we were un-approved I got a call that we were approved, yet while we were AT the clinic, I got another call that we weren't necessarily approved and I needed to call HR at John's work tomorrow. It breaks my heart that this is the cranio-facial team that Evie needs, and insurance may deny it. She was denied the RSV vaccine in January, and in February she spent 14 days in the PICU, 8 of them ventilated, unable to breathe on her own. Makes me so unbelievably sad, and helpless as a mother.

I don't know how to handle this situation with grace and peace because I really just want to grab ahold of whoever is denying coverage and shake them and cry at them until they realize how sick my baby is, and that it is too hard to sit back and wait, while pressure may be building in her brain. It isn't even possible to get ahold of this "person" who decides that coverage is denied... when I call the insurance company I get a customer service representative who claims they have no idea what I'm talking about. I'm so so so frustrated.

So I'm going to spend part of the morning tomorrow trying to reach someone in HR to help me with insurance problems, and pray that they will cover surgery. Children's is the best place to have it done, so we need to get it covered.

Thanks for loving us and praying for us as we continue on our journey. Insurance is such an unimportant thing that I hate to blog about it, but it has caused us so much heartache and instability in the past few months that it is worth it to me to have people praying.

Love you (:

another BIG one!

Hi Friends (:

We are getting ready for another big week! Evie's cranio-facial clinic appointment is on Tuesday, and my older sister should be having her first baby sometime mid-week! I can't even explain how excited I am to meet my new nephew, my sister and her husband are going to have so much fun being parents, and they are going to be so good at it!

I am ready to go to the cranio-facial clinic. I am looking forward to meeting the team that is going to do Evie's surgery. There is nothing like walking into a room of brilliant people who are committed to doing everything they can together as a team to produce the best possible result in your child's treatment. That being said, they do this EVERY day... so sometimes they can be kind of numb to the little things that break a mother's heart. I just have to remember to focus on the facts and deal with the little things later.

SO my main prayer request for this week is that Kirstin would have a healthy delivery!!!

Prayer requests for Evie are that I would know the right questions to ask at the clinic, and that the doctors are thorough about the procedure. I would like to know exactly what's happening so there are no surprises. I do better if I have time to process before hand, even if it's awful. Prayer also that I can see God's hand at work through the appointment. We have been constantly blessed through the past 8 months, I don't know why I would expect anything different. God is good. All the time.

Love you friends. Thanks for loving us (:

home again!

Hi Friends!

Thanks for praying, we are getting out of here tonight between 6 and 7pm! We have to wait for the culture from her spinal fluid to have grown for 48 hours... then we are home free (:

Evie's white count was really low yesterday, meaning she is very prone to bacterial infection, so we will be keeping her out of public places for a while... sorry church friends, she probably won't be seeing you until after surgery! It was probably just suppressed from the virus she had at the beginning of the week, but it went up a little today, and we're hoping it just continues to climb.

She had an EEG this afternoon, and there were no seizures... and the doc even said her brain activity looked "normal for a kid her age".. we've NEVER heard that before about anything! I kinda liked it!

Thanks for praying, keep it up! We are still set to go to the cranio-facial clinic next Tuesday and set up surgery from there, I'm not sure if it will actually get set up early or not.

Love you friends!
Lindsey, John, Lyla, and Evie (:

we're back...

In the hospital! Can you believe it!? I can't!... but it's okay.

For the last few days Evie's soft spot was bulging a little more, and she had a few little seizures this morning... she had a fever Saturday Sunday Monday, and a rash Tuesday and today... so I figured she was maybe having a little seizure activity due to being sick... but they got more frequent this afternoon, and since her fontenelle has been bulging so much more we were advised by her doctors to bring her to the ER at Children's.

They have done blood work, urine, a repeat CT and a spinal tap to check for meningitis and other infections. Her CT came back normal (well normal for her, yay!) but with the bulging soft spot they are going to try to move her surgery sooner. Why not throw it inbetween the my older sister's baby and my little sister's wedding eh? (Just kidding mom!)

Regardless we will be here for at least 48 hours to wait for the meningitis culture to come back. It's Lyla's birthday, and we had birthday pancakes this morning and played until John got home, and he took her to the zoo so I could bring Evie in. I think she had a great day.

HAPPY BIRTHDAY BEST FRIEND! I love you more than the sun and the moon (: I'm gonna snuddle you as long as you let me, and when you don't I'll just sneak in when you're sleeping!!!

I will update soon, pray that everything comes back negative and that she gets some good sleep tonight.

Love you friends (:

week 24! we made it!

Hi Friends (:

Thanks for praying for Evie's fever... she was lethargic today, but seems to be a little more with it tonight. Hopefully she'll be done and over with it by tomorrow.

TOMORROW... is the start of WEEK 24 of Evie's clinical trial! Her clinical trial is the 6 months of injections we have been giving her, and all of the tests and appointments that go with it. Week 24 is the official end of the first 6 months of the trial... then we sign on to a 2 year extention study.

So we have a test of "infant development", blood draws, urine samples, kidney ultrasound, full set of skeletal x-rays, vitals, and physical exam to do this week for the trial, as well as a routine neurology appointment. Here we go again! My 2 weeks of slacking off are officially over (:

Today we had Lyla and Papa Steve's "family birthday party" at my parents house... it was so much fun. She will officially be 3 on Wednesday. She and Papa Steve are going to go ride the ferris wheel at Sheels... it will be the highlight of her week (:

Thank you for praying for us, I'm going to end with some of my favorite verses that encourage me with busy Evie weeks!

Love you friends!

Isaiah 40:28-31

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.

He gives power to the weak and strength to the powerless.

Even youths will become weak and tired,

and young men will fall in exhausting.

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.

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.

fever....

Hi Friends (:

We have had a great week, but Evie was having kind of a weird day, and had a fever late this afternoon. She has had an array of issues... but not many fevers! I'm not sure what she's fighting off, but will you pray that it is short lived? She has all of her 6 month tests next week, since she has finished her first 6 months of her clinical trial, and it would be nice if she could be at her best while we're trucking around town this week.

AND it is Lyla's 3rd birthday on Wednesday! So we have many additional plans! (:

Thanks for praying, I will update soon (: Hopefully she'll be better in the morning.

Love you friends.

She ROLLS!

I guess I should say she "rolled!"

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I bathed Evie this morning, got her dressed, laid her on the floor, bathed Lyla, got her dressed, and when we went back to where Evie was she was on her tummy!!! Lyla left her bright rainbow undies on the floor, and Evie apparantly tried hard enough to get them that she accidently rolled over! Her eyes were telling me she wasn't so sure about what she had done... it was so darn cute! Big Acheivement Evie Jayne Jayne!!! So proud that you're growing and doing new thing!

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Another 1st today... Lyla asked me about Evie's oxygen tube. It's kind of funny, little kids ask me about it all the time and I have no problem explaining it, but Lyla never has! So this morning she says "Mom, take the tube out of Evie's nose." and I say "I can't" and she says "Why?"... I suddenly got nervous... when I was pregnant with Evie I spent a considerably large amount of time thinking about how I would explain Evie's passing to Lyla without damaging her 2 year old mind... and now that Evie is differently abled, I spend an equally large amount of time thinking about how to raise Evie in a way that she doens't see herself as disabled, and how to handle family dynamics so that Lyla doesn't see her that way either. So after a hundred thoughts race through my mind I say "Well, God made you and I with strong hard bones"... "Where are my bones mom? I don't see them?" So we felt our bones... our knee bones, our arm bones, our finger bones, our teeth, etc. Then I said "And God made Evie with soft bones, so that's why we give her shots, to help her bones get strong"... after deep thought for about 15 seconds... her response? "Oh. Can I watch toons?" Well I guess I got off easy this time!

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Thanks for praying for me, I am feeling much much better. I think I needed a few good nights sleep, some time in the Word, and some down on my knees prayer. And I took a few hours yesterday and today to make the girls matching dresses, it was nice to do something fun and creative with my not-so-spare time!

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Another major blessing, Evie's friend Aria (http://aria.org.nz) from the hospital got another life saving multi-organ transplant this past Mother's day. After spending two weeks across the hall from her family in February, my heart hurts and smiles with their pains and gains. It's amazing how God can connect you to strangers so quickly through similar circumstances. So far she is doing wonderfully, but could always use prayer as recovery can be long and brutal at times.

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Love you friends! Thanks for loving us and staying in touch!

Goodnight sweet Evie!

photos by Brian Lehmann... www.brianlehmann.com

1/4 Liter!

Hi Friends!

We have had Evie on only 1/4 liter of Oxygen for nearly 2 days! She is staying above 93% which is what the docs ask of her. We are so excited about her progress, thank you prayer warriors!

I am having a bit of anxiety. I decided to get out of bed for a little while... I was waking up with shooting pains in my chest. It's a little odd considering we have no appointments except PT/OT this week... after that it's Week 24 which is wonderful, but means back to a full schedule of appointments. I guess I was spoiled by our week off last week! The following week is Eve's appointment at the cranio-facial clinic, followed by surgery sometime around 2 weeks later. In the meantime John switches from working 5 - 8 hour shifts at work, to 3 - 12 hour shifts, which is good, just another little thing to adjust to.

Will you pray for me that I can enjoy this next week and not worry about the weeks following? I'm not sure why I'm suddenly feeling so burdened. When I realized we had no appointments last week, I checked our calendar and this was the first week off since Evie was 2 weeks old that we haven't had a doctor's appointments (: Hopefully this is the start of a good trend!!!

Love you friends (: I am so thankful for the power of prayer in my life, and for all of you.

Accomplishments!

Hi Friends!

We have had an awesome week... NO doctor's appointments, no colds, nice weather, and lots of family time.

A few accomplishments to note:
1. I realized that tomorrow is Evie's last injection of week 22. WEEK 22! that means we only have two more weeks to go of Evie's 6 month drug trial, and then we are officially on the two year extension study. I thought these 6 months were going to take forever, I can't believe they are almost over.

2. Evie is finally REACHING for things! We have been trying to get her to grab toys for a few weeks, and she finally got it. So exciting to see her fine motor skills develop! (Thanks Chris and Susan, her OT and PT!) I am glad I have been growing out my hair, it's one of her favorite things to reach for (:

3. We have been turning Evie's oxygen down below 1/2Liter at night, and she stays in the upper 90s on her O2 Sat monitor. Ohhhhhhhhh my heart aches for the day when she will be off of oxygen and I can stare at her unobstructed little face in all it's beauty. Just to know that she is moving in the right direction makes me cry. I'll just say it, I miss her face. I miss it, I miss it, I miss it like crazy. When I change her stickers that hold her tube on, sometimes I hold it off for a few seconds, and my heart aches to take it off for good. She looks different, and I miss it. We are going to get there.

4. Lastly, and most importantly, Evie is saying mamama and dadada. I won't go into detail as to which she said first (: but it is awesome. She is doing a ton of vocalizing, and it is so wonderful to hear her voice! A sound we didn't know we would get to hear (:

THANK YOU for praying for us, we have been so blessed with good health this past week, no one has even a hint of a sniffle. Keep praying that we can stay healthy through Evie's surgery.

Love you friends! You're the best!

surgery continued...

I am feeling a sense of peace about Evie's surgery... probably because it's a month and a half away (: Thank you for your encouragement, and willingness to share your own journeys with me. Here are some pics from Friday, a day in the life of Evie Jayne...
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waiting to meet our new neurosurgeon...

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mommy trying not to be nervous...

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Dr. Puccioni and mom talking brains and sutures...

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Evie and dad...

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a good meal at Thai Pepper...

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Papa Steve getting some Evie time...

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Evie has decided to dislike her car seat..... not good...

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off to the park...

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Evie and I discussing surgery... she's a good listener.

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and having some fun (:

home before the storm!

Love you friends, have a blessed week (:

photos by Brian Lehmann http://www.brianlehmann.com/