Thank You!!!

Hello Friends!

Thank you for your encouragement and love regarding my "differently abled" post... I am looking forward to meeting Evie's OT, PT, and teacher tomorrow who will look at her needs and find ways to help her. I am so blessed to know God on a deeper level because of the joy and challenges of being Evie and Lyla's mom. My desire for people to love and accept Evie as much as I do is a constant reminder to me of the love God expects me to have for all of his children... everyone around me.

Week 8 is over! WOO HOO! We survived the blood draws, urine samples, etc. and are looking forward to a much more laid back week this week (: AND we ended the weekend with a wonderful celebration of God's love and answered prayers at Renew the Soul 2010 at Brookside. Thank you for letting me share Evie's story.

Lastly Rob finished the service this morning with the song "Came to the Rescue" this morning, listen to the lyrics of the melody:

I called, you answered,

and you came to my rescue

and I want to be where you are.

That's our story friends.

Love you!

HAPPY BIRTHDAY JOHN!!!

John turned the big 31 this week! Lyla and I made him a green alien cake and we had dinner at China Buffett (: Thank you God for making such a great husband and father 31 years ago! John, you are the best!

As Promised!...

Christmas Card 2009

a few of my favorite people at Christmas

Christmas Chairs! Thanks Grandma Dellie!

the beginning of a really big mess!

Lyla loving on her baby sis...

Evie's smiley!

Our good friends
Brian, Brandi, Finlee... Tim, Kelli, Karli... John, Lindsey, Evie

at the girl's dedication December 6, 2009

John & Evie watching TV (:

Differently Abled...

Hi Friends (:

This is a hard post for me to write... I am a mess. We actually had a really good day, but Evie has decided that since she's growing, she needs to eat in the middle of the night... which isn't real good for my emotional well being!

This is why my heart hurts. A few weeks ago, I called the school district that we live in to see if Evie qualifies for "early intervention," a program that works with kids birth through age 3 that qualify. They do physical, occupational, speech therapies, and others. Since Evie will probably need physical therapy in the future, her doctor and I thought it would be a good idea to start. And it's FREE! That word doesn't come up very often when we are dealing with Evie's care!

Then at church on Sunday, we had a speaker on abortion. Great sermon about loving people. Somewhere in the middle of the sermon the speaker called someone who was handicapped "differently abled" and I thought... hmm... that's a nice revision to "dis-abled." It stuck with me for a while. That afternoon I read the chapter we were doing for our Bible study that night, and Chuck Coalson, the author of our book was discussing the area of abortion when it comes to children who are destined to be disabled. He spent a good deal of ink justifying why it's his belief that they shouldn't be aborted. It really killed me that as a Christian writer, writing to a Christian audience it took so many paragraphs to display why abortion is wrong in this situation. It's so black and white to me. Come look in Evie's eyes. Hold her for a few minutes.

Back to the school district, the nicest lady came by today to do an evaluation of our situation and meet Evie. I love showing Evie off, she has the sweetest demeanor, scrunches her nose when she smiles, and is just a happy baby. And Lyla could entertain a crowd, but that's a story for a different time (: As I was signing the paperwork to get Evie enrolled in Early Intervention, and as we were looking into financial assistance that is available, the weight of the words "Disabled" and "Special Needs" were piling up on me, one at a time.

Do I oppose the use of such words? Absolutely not. There obviously has to be a way to describe the situations that "differently abled" people are in. But as a mother of a child who has "Special Needs" is it ever going to get easier to hear? I mean aren't we ALL differently abled?? My struggle isn't with what that means for her now... she is as content as can be. But what does that mean when she's in school? When she's battling her way through Jr. High with everyone else? When she's an adult? When she's not just "differently abled" but just plain different??? And how do I prepare her for that?

I am doing a short interview on Saturday morning at our church about prayer... so I was thinking about verses that have impacted my life, and my favorite Psalm has always been Psalm 139.
In a passage about God's greatness, David writes:

13 For you created my inmost being;

you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My prayer is that we all know that this psalm wasn't just written for those of us who are considered "normally-abled." Evie was created by God. Knit together in my womb. Fearfully and wonderfully made. A wonderful work of God. As we all are. It doesn't need any justification from me.

I'm sorry this isn't one of my more upbeat posts, but as a mom, I am going to need help from other moms who have gone through similar things. I know there are plenty of you out there who are months and years ahead of me on this journey. Could you pray for me? Send me some advice? Books? Scripture? I am pretty good at doing this one day at a time. I just feel like lately with all of the "signing up" for things for our future I have been forced to go to a place I'm not ready to be in yet.

Love you friends, Thanks for loving us. (:

Week 8...

Hello Friends!

Thanks for being patient with me as I tried to re-coop these past few days. I can usually pull myself back together pretty quickly after a hospital stay/traumatic event, but I am just so worn out after this past week.

Update on Evie: basically the docs think that her apnea spells (when she stopped breathing the two times) happened because of gunk in her upper airway from her cold, and the fact that she doesn't have a big reserve of air in her lungs because her chest wall is still weak, and her lungs are still working in such a small area. She is retaining CO2 in her blood, meaning that she isn't breathing out deep enough to get all of the carbon dioxide out. We can put her on oxygen to get the oxygen in... but there isn't really anything we can do to get the CO2 out. She is also still hovering around 9 pounds. We want her to slowly gain weight... not so much that her fragile bones can't support it, but still gain.

SO our main prayer request is that the treatment will work faster than her disease progresses. Many times this past week I heard... "This seems to be the natural progression of the disease," which is just so hard to hear. I have felt like she was slowly improving for so long, and now with the oxygen, not gaining that much weight, and these apnea spells it worries me so much that she may be getting worse instead of better. I guess in the past the other kids on this same study really started getting better around the 3 month mark... so we have a few more weeks until we hit that point.

This week is a landmark week... meaning we will have lots of tests, urine, blood, etc. It is getting really hard to watch my baby cry. I have stayed as strong as possible as her mom, knowing that this is the best thing for her, but after a week of tears in the hospital, I am just ready to bundle up my little girl and keep everyone else away from her. Will you pray for strength for me? I have done a lot of crying in the past few days, and need a little more catch up time than I am getting.

Love you friends... I am going to set an alarm on my phone tomorrow reminding me to POST PICTURES on my blog... it's been so long! So look for pictures soon.

Lindsey

Oh and on a lighter note... we asked Lyla what her favorite animal was tonight... and she said "ghost" and then changed her mind to "llama." Really... a ghost!? Oh Lyla.... (:

Wednesday...

We are home!!!!!!!!!!!!!!!!!!!!!!!

I am way too tired to blog but just wanted to let you know we made it! Evie is doing great.

THANK YOU for praying, answered prayers just bring me to tears.

All my Love!

Tuesday...

Happy FOUR MONTH birthday Evie Jayne!!!

Today was a good day, Evie is doing much better, is less congested, and I think we will get to go home tomorrow with her in a "car-bed" instead of a car seat. It should prevent more breathing problems while we are driving until she gets a little stronger.

I can't believe the Lord's wonderful provisions over the past 4 months. I praise Him for each and every blessed day we have had with Evie and the joy she has brought to our lives. I need to catch her sweet little smile on camera soon so I can share it with you all!

Better get to bed, I will let you know when we are home.

THANK YOU for praying, it is amazing how much better she is doing today!

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.

Love you friends (:

Monday...

Today was very uneventful, Praise the Lord!

We had a swallow study, an echocardiogram, met with a gastroenterologist, pediatrician, pulmonologist, and started a pH study to check for reflux. It's a 24 hour test that will be done tomorrow.

The BEST news of the day was that it was cleared to have Evie's injection brought over from UNMC, so we didn't get off track with her treatment. That was a HUGE relief for us.

They gave us an apnea monitor to take home, so we will know if she stops breathing in her sleep or in the car. That will be a big help.

Well John and Lyla are on their way back... Lyla stuck her sticker earring up her nose! Poor thing.

Be back soon, Thanks for checking in! Love you!

Oh, and if you have any favorite scripture will you send it my way? I have my Bible up here, but I could use a boost of encouragement. LindseyLE@gmail.com

Sunday...

Hi Friends,

Well this morning didn't go as smoothly as planned... Evie had an upper GI scheduled for 8am, and after we got started her pulse and respirations dropped suddenly and they called a code four... otherwise known as a code blue... otherwise known as everybody get your butts down here and help. She was blue and unresponsive, it was pretty darn scary.

We were in the ICU all day today for observation but thankfully got to move back to the normal floor a few hours ago.

If you will please pray for Evie's strength, and my strength as she undergos more tests tomorrow I would deeply appreciate it. This morning should have been a routine test and tomorrow will be the same, she is just so fragile at this point.

Thanks for caring about us. Love you.

Saturday...

Hi Friends (:

We are still at the hospital, but got to see a few doctors today.

The pulmonologist had some interesting things to say... basically we need to figure out if Evie's episode last night is an isolated event, or if she has breathing trouble frequently. We are going to have an upper GI done tomorrow to check for reflux; a pH test, an echocardiogram, and a swallow study on Monday; and a sleep study Monday night. Then they think they will have a good handle on her breathing issues and what steps we need to take. Hopefully we can leave from here Tuesday and get her injection at UNMC that we should have had Monday.

The docs are thinking that the spots on her lungs aren't pneumonia, but rather little areas where her lungs have collapsed because of gunk, strain, or other reasons. This can heal itself thank goodness!

Please keep praying for Evie, she is doing well, but we have been sucking quite a bit of junk out of her nose. I would love to take her home, but don't want to take the risk either... I am glad we are in such good hands!

I got to have a quick pizza dinner at Zios with Kirst - it was great to breathe "normal people" air and laugh laugh laugh for a while! Aren't sisters the greatest? I'm so glad Ly and Eve will have each other.

I'll update tomorrow if we know anything.

Love you friends!

at Childrens...

Hi Friends (:

What do I get for not posting all week??? An ambulance ride to the hospital! I'll backtrack a little... Evie's eye appointment went great - thank you for praying. No obvious signs of pressure, Praise God. Thursday we went to the pediatrician, Eve was up all night coughing, and her congestion was just unbearable. They put her on amoxicillin because she probably had a sinus infection.

Today we went to UNMC for her routine treatment injection... shot went fine, vitals went fine... left at about 5:15 (just in time for rush hour), and she suddenly got really upset about 5 minutes into the drive, it sounded like SCREAMING, SCREAMING, SCREAMING, SILENCE............... so I pulled into the nearest business, took a look at her and she wasn't purple, and not breathing.
After I called 911, got her inside and gave her a few breaths, the fire and rescue squad was there to take her to the hospital. After they got her breathing again she has been doing okay.

Long story short, they think she may have aspirated some of her nasal congestion into her lungs... or possibly vomited a little and aspirated it. For now they are calling it pneumonia and have her on some heavy duty IV antibiotics and IV fluids. She is going to see a pulmonologist tomorrow to check out her lungs and belly and see what they think.

We will probably be here for a few days. Thank you for praying friends, our God is so good and I thank him for every blessed day with my Evie Jayne and my Lyla. I have had to retell our "history" every time a new doctor comes into see her, and it is a good reminder of how incredibly BLESSED we are to have this precious girl in our lives. It's always interesting when they say "did you have a normal pregnancy?" ... I don't even know where to start besides to say that she is the definition of answered prayer.

Well I better get some sleep!

LOVE you!
Lindsey

Tomorrow

Quick Update:

We are taking Evie to see a pediatric eye doctor tomorrow... to see if she has any intercranial pressure going on (pressure in her head, brain swelling, etc.) and if that is why her soft spot is bulging. Will you pray that the doctor has a keen eye and can see anything that may be going on? We haven't had any reasoning for this bulging, and it's a little worrysome for us.

Thanks friends, i'll let you know how it goes.

Love!

Friday

Evie's story got bumped to Friday, and will still be on KETV at 6:45ish (: School is cancelled again tomorrow, for those of you who are out of town, it is crazy snowy here!!!

Did I say this was going to be an easy week??? I think I'll stop saying those things until the END of the week! (: On Monday we went into the pediatrician because Evie has had a cold, and I noticed in the morning that her soft spot is bulging a little. Our pediatrician noticed it too, and when we got to the Med Center for her treatment we had a brain ultrasound before she got her shot... therefore we were at the doctors office/hospital from 1pm until 7pm! Fortunately there wasn't anything remarkably concerning on her ultrasound, so we are going to have an MRI, probably another EEG, and maybe see a neurosurgeon in the near future.
Dr. Lutz is putting together a letter to send out to some specialists so they are all up to date on Evie's condition, and to see if they will examine her. Hopefully soon she will see a pulmonologist (since she is still requiring oxygen), a pediatric opthomologist (to look in her eyes and make sure there isn't more pressure than there should be) and a physical therapist, so I know what types of exercises I can do with her to help her fine/gross motor skills.

GOOD NEWS: she has gained weight!!! At the pediatrician she weighed in at a whopping 9 pounds 2 ounces! I am so relieved to have passed the 9 pound mark. In my eyes that means she is out of the 'leveling off' stage that she was in, and is growing. She was also longer. (: I'm so proud of her!

MORE GOOD NEWS: we are getting her central line (port, catheter, whatever you want to call it) taken out tomorrow!!! woo hoo!!! She is through the 4 weeks of lots of blood draws, so we are going to get it removed, I can't wait (:

Thank you for praying for us, Evie is sleeping on my belly right now, and I couldn't feel more blessed. Even with all of the appointments, scares, and delayed milestones, I wouldn't trade my Evie Jayne for a different healthy kid anyday. My prayer is that she will be as healthy as she can be, and stay her sweet little self.

Lyla is still cracking me up every step of the way... this morning she dropped a toy on the floor, looked at me, shook her head and said "oh crap." Do I want my 2 year old saying "crap" frequently? No... but at the time it was exactly the laugh I needed. She is the joy in my every day.

Love you friends! Hope you can tune in on Friday, if not it should be on the website www.kmtv.com. (:

Lindsey

Evie on the News!

Hi Friends,

Evie will be on the morning KETV news tomorrow, with a preview at about 5:40, and the story around 6:45! If you are out of town, you can look later in the morning on www.ketv.com If there are school closings they may move it to later in the week (:

Love you friends! Be back soon.

WEEK 5...

Hi Friends and Fam,

My google calendar just "reminded me" that it is now officially the start of week 5 of Evie's treatment. Hallelujah!

Week 5 isn't just any week, it is the first week on Evie's treatment schedule that is non-existant, meaning that we still go in for her shots three times a week... but no blood draws, no urine samples, no physicals, nothing! We have a sheet of paper with little "x"s all over it indicating what tests are to be run, and there is nothing on week 5. Woo hoo!!!

Now we are looking at "landmark" weeks. The big weeks being Week 8, Week 12, Week 16, and Week 24. These first 4 weeks were intense monitoring and baseline information, which is why we had so much going on.

THANK YOU for praying for us last week. I haven't gotten a call yet about her EEG, but her skeletal survey went fine, no big improvements, but also no demineralization. That is good news. Treatment went fine Wednesday, physical exam went well Thursday, and treatment was also good Friday. I am a little dissapointed to say that Evie hasn't gained any weight, but she has grown longer, so that is good. She is still on oxygen, and has been eating and sleeping much better since that started. I can definitely tell she has grown, so hopefully she will start gaining weight also.
I celebrated the end of the week with an Apple Fritter and enormous Diet Coke on the way home... it was heavenly (: Oh, the little things.

I am going to post pictures on my next post - just realized how far behind I am on that!

Going to bed for now - thanks for checking in!

Love you friends, thanks again for your prayers, comments, and emails - they mean the world to me.