evie jayne elsaesser

Fun in the sun!!

2012-01-29T12:46:00.001-06:00

Having a great trip! Thanks for praying for Evie, she is doing great. this has been precious time to spend together (:

On the plane...

2012-01-25T10:20:00.001-06:00

So far so good! Sunshine here we come!

HOME!

2012-01-24T20:22:00.002-06:00

My favorite posts are always titled "home" (:

Evie had a pretty good night last night and an EEG this morning confirming that she is not having any more seizures. We gave her a higher dose of her med last night so hopefully that will do the trick.

We got the green light from three docs to go to Florida tomorrow, so BIG PRAYERS for no seizures on the plane would be appreciated. We will have oxygen and a monitor.

I will post a pic of my beautiful girl in the Sunshine State soon!!

Love you guys, thanks again for your prayers and comments.

Inpatient

2012-01-23T16:43:00.001-06:00

Evie had three seizure/no breathing episodes this morning, another in the ER and another this afternoon. She has never had more than one in a day. They have upped her seizure meds and we are staying overnight to keep an eye on her.

Say a prayer for her (: thanks friends.

perspective...

2012-01-22T22:26:00.005-06:00

Perspective can be such a good thing, and such a hard thing.

We are leaving for Florida this week and I was looking through some photos from last years trip. I remember calling the airline the week before we left saying something like "I need to confirm reservation number (whatever) and add a lapchild, on oxygen, with two full leg casts" The lady's response was very kind... instead of "may I ask why you are traveling???" she said "okay..... i'm going to need to put you on hold real quick" (: 30 minutes later we had it figured out.

When I first looked at these pictures of Evie on the beach my gut reaction was "Why didn't anyone tell me she looked so bad!?" I can answer that myself... because I probably would have asked them why they looked so bad and moved on (: Coping mechanism or mother's heart... I'm not really sure. God bless my family for loving us through the hard times we have gone through. We have really focused on always looking forward these past few years, but looking back is also important. I don't necessarily like it, but there is nothing more humbling than remember how far we have come.

Here is a picture of Evie at the gym a few weeks ago. The "big kids" typically measure themselves on the way out and Eve is no exception (: She's so big!!

I read through the first few months of my blog a few days ago. I just want to thank you guys for taking on our burden and loving us through a really rough time.

Love you friends.

Evie with walker

2012-01-05T15:39:00.000-06:00

does she have any underlying medical conditions?..

2012-01-05T15:04:00.003-06:00

Hi Friends (:

Evie was pulling at her ear and crying yesterday at dinner, so I ran her to urgent care. We walked back to the room and the nurse turned to me and said "So does she have any underlying medical conditions?" I laughed, looked again, and she wasn't kidding... So I replied, "do you want, like, all of them?" (i mean we were just treating an ear infection)... Then I realized for the FIRST time since Evie was born, we went into a health care facility and the staff didn't immediately realize she had special needs. How cool is that! I'm sure if the nurse had taken a closer look she would have noticed her leg braces and healing incision on her head, but with pants and a little hair she had no clue (: I just love these little reminders that Evie is improving every day.

Evie has a double ear infection but is competing with her cousin Henry for the highest ear pain tolerance in Nebraska. She has taken two doses of amoxicilin and one dose of tylenol and she is back in action. We also got a sleep study scheduled for next Monday (Praise God! - these usually take weeks to get scheduled) so we can monitor her apnea for an extended period of sleep and figure out the next steps. I got a full nights sleep last night so I am a fully functioning human again. All good things (:

Evie's buddy Lydia has a walker that she let us borrow, I can't wait to post a video of Evie strolling around.

Love you friends, thanks for your prayers (:

Happy New Year!!

2012-01-02T00:24:00.001-06:00

Wow friends, I need a break from Christmas break, ha!!

We had the most wonderful Christmas Eve and Christmas day with family and friends in town. We got to spend time on both days having family over to our house, it was so fun to have a new place to share! We spent New Years Eve at the zoo for the Noon Years Eve ball drop (picture below) and had a dance party with the girls in our living room before bed (:

Evie lost her second tooth on Christmas, I'm starting to think we are going to have to go on high-alert on holidays... We spent Thanksgiving afternoon in the ER as Eve had an apnea spell, she lost a tooth on Christmas, and had another apnea spell at the zoo yesterday (NYEve). We were thinking that these apnea spells were from seizures so last month we upped her meds. Since she has had another one since the med change, we will make an appointment with her pulmonologist as soon as we can. For those of you who don't know what apnea is, basically she stops breathing and we have stimulate her to get her going again. Think purple lips and pale skin. It's scary and not fun. Hopefully we can find the source of the problem, for now we are just watching her constantly.

Blessings to you all for a wonderful 2012! The pics of our house have been a work in progress as unpacking has taken me waaaayyyyy longer than I thought.... My unpacking goal was Christmas... Maybe I'll shoot for Christmas of this year!

Love you all, please let me know how I can pray for you in this new year (:

2012-01-02T00:18:00.001-06:00

Merry Christmas!!

2011-12-24T23:10:00.003-06:00

Praising God for the birth of his Son, and for our THIRD Christmas with both of my girls (: He is GOOD!

the Body of Christ...

2011-12-15T23:27:00.004-06:00

Hi Friends!

Well our internet is hooked up... but according to the cable-internet-man we are getting about 1/1000 of the signal we should be getting... so no photos today (SORRY) but hopefully we will have that fixed up tomorrow.

I have been dying to write this post for a while now, it has been whirling around in my head as we start to sink into our new home. You hear a lot about "the body of Christ" in church. What does that really mean?... One meaning of the "body of Christ" are the people in the church (any church) who love Jesus, and serve Him.

This past weekend we got word that we could start moving furniture and boxes into our house a day early (Sunday). So I texted a friend Amy on Saturday afternoon, who mentioned she and her husband could help us move. She also had mentioned that her Bible study group was interested in helping (which honestly I thought was a little weird since I hadn't met any of them and they don't even go to our church!). So I gave her our new address and told her we would be there around 1:30pm on Sunday. We loaded up the U-Haul Sunday after church, got to our new house and started to unpack. At 1:30 Amy, her husband, and 5 of their friends came, giving us a grand total of EIGHT men, and FIVE women to move us into our home, five of whom we had never met. These people gave of their time on a Sunday afternoon to serve a family who needed help moving. Men hauling heavy furniture, women making beds and putting away clothes. Something that could have taken us several hours was done in two. I was humbled and overwhelmed by their willingness to give of their time, expecting nothing in return. My dad asked one of the guys on his way in the house "so how do you know John and Linds?" His answer... "I don't, just thought this would be a good way to serve." Amen brother, praising God for you!

When we started looking at building a home, I called a man from church who builds in Omaha. From start to finish he has helped John and I plan and build a home that fits Evie and our needs beautifully, in a wonderful neighborhood, a great school district, with amenities we never thought we would have. He linked us with a realtor who was willing to work with us very fairly on both sides of the sale and a lender who helped make the numbers work. This man gave of his time and resources to BLESS us immeasurably with a home that is a total dream come true.

I couldn't forget our amazing family and friends and the countless hours of packing, loading, unloading, babysitting, listening, picking out colors, unpacking, buying dinner, visiting, etc. they have done over the past 6 months.

Those are just a few examples of the Body of Christ and the wonders that God does through people who answer his call. I hope that God will open a door for us to repay all of these wonderful people their kindness and hope I can serve them with an ounce of the humility and unselfishness they have shown us.

THANK YOU for serving our family, through prayer, help, notes and words of encouragement these past few months. I am constantly blown away by the giving hearts of the people that God has used in our lives to love us! Evie's quick recovery from surgery is just another testimony of God's goodness and his listening ear to our prayers.

Love you friends, pictures of Evie AND our new house coming soon!!!

Moved in!

2011-12-14T08:34:00.001-06:00

We have closed on our house! There are boxes everywhere an I love it! My goal is to be unpacked by Christmas (: we feel blessed beyond belief to have such a wonderful place to live. I am dying to post photos of Eves surgery and our new home, the cable guy comes today to hook up the internet... Stay tuned!!!

Love you friends!

Home.

2011-12-09T22:15:00.001-06:00

We are home! We actually were discharged Wednesday morning. Wed night and Thursday were pretty hard and last night lyla had the stomach flu so I haven't had a chance to update.

Evie is doing wonderful. She was almost back to her normal self today. She can crawl and play around by herself, she was afraid to move much yesterday.

I will update more with some pics soon. Thanks for your prayers, they were answered!

Better afternoon

2011-12-06T13:11:00.001-06:00

Eve had anothr breathing spell this morning but shes getting a blood transfusion right now and is feeling much better.

Thanks for praying!

Day 1

2011-12-05T21:36:00.001-06:00

Hi friends,
Surgery went well, we are all exhausted, especially Evie. The docs found a little pressure so they made some cuts going down the sides and front of her skull to "open things up."

She had a few episodes tonight where she got upset and held her breath until her lips turned purple. It was scary. Please pray that these will stop. She is in pain, but mostly uncomfortable and scared.

Pray also for her swelling, we have noticed it starting to increase more as she is laying down to sleep.

Thanks for your love and prayers for our sweet girl.

Pre-op

2011-12-05T07:33:00.001-06:00

Evie decided to measure her own head before surgery (: she just went back, and did pretty well.

Trust...

2011-12-04T22:11:00.001-06:00

Hi friends (:

Evies surgery is tomorrow morning at 7am, we need to arrive at the hospital at 530. The sermon this morning was about Trust, it was very applicable. Honestly, I'm not as 'nervous' about tomorrow as I am just plain sad. Its almost harder since we've done this surgery before, because her recovery was so awful. We are hoping this incision is smaller and the swelling won't be as bad. In case I forgot to menton before, they are fixing the bump of bone on the top of her head left behind by her last cranial reconstructive surgery.

Prayer requests:
Evie doesn't panic as they take her away
I don't panic as they take her away
Anethesia goes well
Surgery is sucessful
No emergencies
Extubation and recovery go well
We can control her pain afterward
She doesn't get scared
She doesn't swell too bad
We can adequately comfort her

Thanks friends, love you.

OUT!

2011-11-28T22:12:00.002-06:00

Hi Friends!

I am happy to say... we are officially OUT of our house! I still can't believe it. We said goodbye to all of our rooms last night and a few of our neighbors. I need to go back tomorrow to gather up a few things from the garage and closing is scheduled for Wednesday. Prayers over that would be great, we are hitting some speedbumps and I know the buyer is frustrated.. it will be nice for all of us when it is closed and done!

Evie is feeling so much better, I appreciate all of your notes and emails and most of all, your prayers. She still has some nasty coughs but they are few and far between, and hopefully her lungs will clear up enough to be set for surgery next Monday. Our stay is expected to be 3-5 days. She has slept through the night TWO nights in a row... John and I haven't felt this rested in a long time! Hopefully I can get some good sleep before I hit the plastic couch at the hospital next week for a few nights (:

We are feeling beyond blessed for many reasons. First, my mom helped me pack and move our entire house. She has spent several days with me helping me pack up, make decisions, and motivate me to keep on working. MOM, YOU'RE THE BEST! Secondly, one of my amazing friends and her husband are allowing us to stay in their home for these two weeks while we are "homeless." They have a guest room for us, kid bed for Lyla, and crib for Evie. I am overwhelmed by their generosity and kindness to us. I hope I can do the same for someone someday! We also have several friends offering to help with Lyla and activities next week while Evie and I are in-patient, which is such a relief. I have seen commercials for the "real housewives" series on tv, and I just WISH they would do a series on my friends and family, instead of arguing it would be a bunch of women encouraging, supporting, and laughing together. I am so blessed to have such God honoring friends who LOVE me and my family. Thanks friends!

SO, surgery is next Monday, and we move into our new home the following Monday. December is full of BIG mondays for us! Our house is nearly finished... just needs a few final touches. I can't wait to post pictures for you all to see (:

Thanks for loving us and supporting our fam. I love it when people who read our blog get to meet Evie in person, God's blessing rains down on all of us.

Hope you all had a wonderful Thanksgiving! I am thankful for you (:

Bummer :(

2011-11-21T19:44:00.001-06:00

Hey friends,

Evie is sick... again... and just can't seem to kick it. We thought she was over the bout of croup she had a few weeks ago, but it seems to be back and her doc thinks she may be getting a little pneumonia. We are counting down to surgery, exactly two weeks from today, so say a prayer that she can get all healed up and we can all get some sleep.

We are going to try to move out of our house this weekend, we'll see how that goes!

Love you friends, thanks for praying for Eve.

Evie on the local news (:

2011-11-13T14:52:00.001-06:00

Hi Friends,

In case you missed it, Evie was on the local news last week. It's so fun to see the difference in this newscast from the first.

Here is the link:

http://www.ketv.com/health/29746296/detail.html

Blessings!

2011-11-09T23:34:00.001-06:00

Evie couldn't wait to see Zoe and get her picture taken with her (: Zoe just had surgery and didn't feel too good, what a trooper! How cute are they, seriously (:

Miracle girls...

2011-11-09T22:50:00.001-06:00

I got an email from a mom on June 24, 2010 asking about type 2 OI. This mom had seen the same specialist in California (where they live) who read my ultrasound and told us Evie wouldn't make it. She had been given the same lethal diagnosis for her unborn daughter.

Today we got to have lunch with Zoe and her mom Chelsea! Before we left the house I pulled up our original emails and felt the same intense rush of emotions as I did when I read them the first time. Zoe celebrated her 1st birthday in October (: she is just a year younger than Evie and we are blessed to know her.

God orchestrates life in such amazing ways. Chelsea had posted a question about type 2 OI on an online message board and someone gave her our blog address. Now Zoe and Evie have two of the same amazing doctors treating them even though Zoe and her family live in California. Incredible!

I am constantly amazed at Gods love for us. We could be traveling this journey alone but instead He has brought people into our lives to share the journey with. He is so good (:

Love you friends! Pictures of Evie and Zoe coming tomorrow (:

Foofa and Super Girl...

2011-11-06T00:45:00.004-05:00

Evie and Lyla (Foofa and Super Girl) carved a pumpkin for the great pumpkin tree. (it was obviously getting close to naptime for Evie!)

our pumpkin made the tree!

we went back that night for the lighting of the tree

amazing! super fun for the girls (:

Super Girl! trick or treating (:

SOLD!!!

2011-11-06T00:14:00.002-05:00

Hi Friends!

This past week and a half has been a total whirl-wind... we had a serious looker, then a second showing, and finally an offer. Our house is SOLD! I haven't mentioned this yet, but we are actually building a home to better suit Evie's needs and get her in a smaller school district. We were keeping it to ourselves since the purchase is contingent upon selling out existing home and we were waiting for God's hand to work out the deal, and finally it looks like it will go through (: WOW! The new house is a ranch, so her bedroom, kitchen, living room, bathroom, etc will all be on one level. It's also on a flat lot, so she should be safe in the yard and around the house (: There are a few stairs in and out, but when she gets this cast off (this thursday!), hopefully she will be getting closer to walking.

So we officially have 24 days to move out of our house. Yes, you heard me correctly, November 30! Amazingly, our builder moved the closing date on our new house from the end of January to December 12th so we can get in sooner. We are feeling totally blessed that we will be moved by Chistmas, and hopefully unpacked by next Halloween - HA!

We have had a few friends offer to let us live with them for the 12 days that we will be homeless, and if you remember, Evie's surgery is on December 5th, right in the middle of our transition. The Elsaessers like to do everything stressful all at one time, so we are just trying to stay true to our history (: Evie and I will stay at the hospital 3-5 days after her surgery, so the closing date of the 12th on our new house should be great. At least I will be out of the hospital and able to make it to the bank to sign paperwork (:

so THANK YOU! for praying for us. I am so excited to be relieved of the stress of stairs and Evie falling. Her bone doc has told us that as kids like her get more mobile they start to have their first breaks. We are hoping this transition will help lessen that chance (: Thank you God for blessing us!

Since it's been SO long since I posted I figure I owe you several pictures, I am working on that next. Love you guys!

new shoe on!...

2011-10-26T23:26:00.001-05:00

Hi friends!

Evie survived her re-casting today! Not only did she survive, she was a champ (: This morning was actually the first time Evie has looked at an exam table and grabbed onto my neck for dear life. With all the exam tables she has seen in 2 years I thought she was possibly a little numb when it came to fearing doctors, but today proved otherwise. Regardless, when it was time to get out the cast saw I held her from behind and there was much less screaming and crying than last time. Possibly because I was less tense and shielded her view... I was so nervous and she was so upset the first time I think we both stared at every cut of the saw in horror. Poor kid (: She did great today and was in very little pain when they fit her for her new braces, which is a good sign that the surgery was a success. She has a pink cast this go-round, after much discussion Lyla had the final say (:

Evies next skull surgery is scheduled! Not that I am especially excited to do this again, but I am relieved to have it on the calendar and to know that by Christmas it will be over and done with. Basically the surgeons are going to fix the large bump on the top of her head left behind by her previous surgery. I will be working out the insurance details the next few weeks, prayers for that would be greatly appreciated. Insurance approval has really been gut wrenchingly difficult for me as a parent. I understand that there need to be guidelines, I just wish someone who was less emotionally invested could handle this for us.

Thanks for all of your comments and emails after my last post. The first year of Eves life was so scary that i feel like I handled things so much more gracefully, but I seem to be clinging very tightly lately. The older and more absolutely darling this little girl gets the harder it is for me to even imagine about a day without her. Blessedly those thoughts are very few and very far between now but memories of the past hit very fresh sometimes.

I have a lot of new pictures to post! Sorry I an a little behind on pictures... posts... and life in general right now (: I will get caught up one of these days.

Love you guys, thanks so much for your prayers, love and support (: be back soon.

schedule and scare...

2011-10-20T08:35:00.002-05:00

Hi Friends!

Well by looking at my previous post I'm feeling a little convicted about not technically "slowing down" our schedule... but I do feel as if our daily lives have slowed down a notch which is good. We have had several house showings lately which keeps my vacuum in good working condition and gives us hope that we will sell soon (:

We are working hard on scheduling Evie's appointments through the end of the year as there are some things we need to get done before January 1st for multiple reasons. 1. she needs a sleep study done to see if she continues to have sleep apnea or if we can get rid of the oxygen completely, 2. she is going to have reconstructive surgery on the bump left behind by her first skull surgery, and 3. get rid of this cast and get new braces for her feet!

I am most concerned about getting her skull surgery scheduled as it will be the most invasive and least fun. We are working on getting this done the beginning of December. Prayers for scheduling and this mamas nerves would be appreciated (:

Lastly we had another scare on Monday... when I looked back in the car to see if Evie had fallen asleep in her carseat I noticed her color was a little off... seconds later her pupils raced back and forth and she was completely blue. I got her out, called 911 and they watched her in the ambulance for a while but by then she had started breathing again. Most likely she either had a seizure and stopped breathing... or stopped breathing then had a seizure. We took her home and let her rest on home oxygen. We have taken her to the Emergency Room for breathing spells and seizures like this before but besides taking blood theres not much they can do. We spoke to her neurologists office when we got home and they agreed that we should watch her and see how she did. She has been fine ever since so hopefully it was just a fluke.

Love you guys, thanks for praying for us as we schedule and have surgeries and scares! We are truly blessed to have people that care so much about Eve and our family.

slow it down...

2011-10-05T23:57:00.001-05:00

Hey friends (:

We have has a whirlwind of appointments since I last posted, I'll try to give you a good synopsis without being too boring!!

ENT checked out Evies ear CT last Tuesday and everything checked out normal which is great. That officially rules out any hearing problems and we can deal with her speech accordingly.

Next was our pediatrician appointment on Wednesday for her yearly checkup. Unfortunately she is back in the 0% of weight and height, but since she has become so active lately its not entirely surprising. She is doing great developmentally as far as most cognitive areas are concerned with the exception of speech (we'll get to that soon) and her gross motor skills are still the farthest behind but we already knew that.

Can't leave out Friday music class as it is the highlight of Evies week (: she's ready to start an band, I'm thinking a drum set for her third birthday would only be appropriate (:

Plastic surgery... Yes, by the time I need to make my first plastic surgery appointment I will already be well acquainted with the staff at Dreams Med Spa and Aesthetic surgery as Evie has her appointments there (: this was a followup appointment for her head surgery, and I'm thinking we are going to schedule another surgery in the next few months. Evie has a pretty pronounced bump on the top of her head left over from where her skull grew together after her first surgery and there is a minor operation that can be done to fix it. It is easier to do when the bone is thinner, so we figured we would schedule it soon while she's still young and hopefully won't remember, isn't in school and won't notice if her hair gets as little messed up. Luckily both the neurosurgeon and plastic surgeon didn't think we would need to shave her head again. Big sigh of relief coming from mom (:

Lastly, Evie also had her official speech eval on Tuesday. She scored between 20-24 months for receptive language (what she hears and understands) and between 10-20 months for expressive language (talking and communicating). The speech therapist gave us some things to work on and encouraged me to narrate as we do things together. Her speech is most likely behind because of all of the physical growth she has done in the past year, can't complain about that!

I have started reading a book about hearing God's whispers and learning how to listen better with the ladies who lead Bible study groups. So I'm driving to see my darling new nephew yesterday when I approach a tractor.... driving..... down...... the....... road..... you get the point, he was not going fast. So I found a safe place to pass him to get to the hospital. Today on my way to preschool I turned right behind an older person driving..... down..... the..... road..... Luckily it didn't take long for him to turn into a nearby neighborhood. Then, less than a few hours later i approached another seemingly comatose person driving incredibly slowly and I heard it... "SLOW DOWN." I thought, maybe I'm making this up... but I realized if i didn't slow down He was obviously going to slow me down anyway (: so thanks for the whisper today God. Honestly I'm not a real big fan of hurrying so I'm looking forward to putting on the brakes for a while. You can stop dispatching slow drivers in front of me now (:

Love you friends! thanks for all of the emails these past few weeks, if I haven't responded yet, I am getting there! (:

as Eve would say...

2011-09-27T20:42:00.003-05:00

all done!! (:

Surgery went well yesterday, thanks for praying. After a long wait they wheeled Evie down the hall she waved goodbye to us with a smile on her face. She is so darn cute (:

Surgery was good and we follow up in 3-4 weeks to get fit for new braces and then she will wear her casts for another 2-3 weeks. She was very upset and uncomfortable when she woke up from surgery and gets upset when her pain meds start to wear off. It just plain hurts ):

We tried to catch up on sleep today... hopefully we can catch up on laundry and housework tomorrow...

When Eves doc saw her in preop he said "i don't think we're going to keep her down for long, i think she'll be walking soon." Pretty exciting for us (:

Surgery for...

2011-09-25T20:44:00.002-05:00

Hi friends (:

this is why Evie is having surgery tomorrow... hopefully when
the cast comes off in 6 weeks she can stand on her right foot the way she stands on her left!

Say a special prayer in the morning as Eve can't eat after midnight... no juice after 9am... its going to be a long morning ):

I will try to post at the end of the day, love you guys!

Thank you!! and prayer requests...

2011-09-24T22:25:00.002-05:00

Thank you all for the wonderful comments on Evie's birthday photos, we had such a fun few days celebrating her!

Also a big thanks to Blogger... we were the "blog of note" on Eves bday! It was a super fun present for us on her special day that we got to share her with so many people (:

I'm pretty sure that I posted earlier that Evie is having surgery on her right foot this Monday. They are going to lengthen her achilles again to straighten her foot out and allow her to flex it for walking. This is the same surgery she had in February on both feet, her right foot just needs to be done again. She will be casted up to her thigh for 6 weeks.

She woke up pretty congested this morning so we need some mega prayers that it clears up before Monday. I'm hoping its just from the change in weather and isn't croup. With her history they will cancel surgery if she's not all clear.

I'm pretty nervous about sending Evie into surgery again. I guess we just haven't done it in a while. There's nothing natural about people you don't know wheeling your child down the hallway away from you in a hospital bed. After surgery she is having a CT scan of her ear bones and a CT of her head. The ear CT will determine if her ear bones are put together right, and her head CT we will take to her plastic surgery appt the following Monday to see if we should fix the bump on top of her head. We ran into Evies neurosurgeon on her bday at the childrens museum and he said we should fix it sooner than later while the bone is still thin so we will see what the CT looks like.

Thanks for your prayers and for loving us (:
Lindsey

Evie's 2nd Birthday in Photos (:

2011-09-19T22:06:00.011-05:00

Sunday birthday lunch after church at Valentinos buffet - Brownie cake! just starting to get the hang of the birthday thing...

musical cards are the best!

To our house to open gifts - Evie step stepping to Mr. Brian (yes, the one who takes the amazing photos)

group shot!

and off to the Children's museum! just looking beautiful (:

coloring... after the girls painted their own faces (:

who's more excited about the fun car!?

we could have sat on the floor in the ball room for hours

And today, the 19th - at the zoo. All of the birthday pancake photos ended up on my phone :(

the highlight of the zoo this time was the giraffes!

Eve and mom tied together, the usual (:

rarrrrrrrrrr!!!!!!!

Evie loves cake... and her dad!

I'm 2! (thats one on each hand) (:

sharing!

sisters....what? we're not supposed to rub our hands together with our cake!?

but it's hilarious!!!!

Happy 2nd Birthday Evie Jayne! (:

September 19th, take 3...

2011-09-19T21:23:00.005-05:00

Dearest Eve,

Happy Second Birthday! I cannot express in words what these two years have meant to me, but I'm going to give it a try. Your dad and I were talking last night about what we were doing September 18th, 2009. Getting ready for bed in the hospital, going to attempt a good nights sleep. You were born at 6:37pm on Saturday September 19th after seven minutes of pushing. I got to see you sweet face for the first time. It was at that moment I truly knew what a sacrifice it would be to give you back. Oh how I loved you immediately. I have been learning scripture since I was a little munchkin myself, and I know (in my head) that everything belongs to God. He made it all, and we are lovely, because we are loved. But oh how I wanted you to belong to me forever. That first night you struggled to breathe. I looked at your dad at one point and said "How much longer do you think she can breathe like this?" and we cried. And we cried. Then we cried some more. The nurses eventually came in and told us we had to sleep and they held you under the condition that if anything out of the norm should happen, I mean ANYTHING, they would bring you back and wake us up immediately. A few hours later when we saw you again you were beaming. I knew in my heart at that point that you were going to make it.

September 19th, 2010 was a day of sharing you with friends and family. We arranged your first birthday bash with meticulous planning. We wanted all of your friends, family, and loyal fans to be able to come see you in our home! You woke up sick and it was a little hectic of a day for all of us. We had to sit you in a bumbo chair to take your first birthday picture because you still weren't able to sit up on your own. It was in that chair that you took your first big bite of birthday cake and shared in my sugar addiction. Ohhhh it was good (: I longed so badly to see you without oxygen those 17 months that you were hooked up 24-7 and felt a little robbed of the joy of looking at your unhindered face. But, look where we are now. You needed it, you lived with it, and taught me to endure trials with grace. For "you know that the testing of your faith develops perserverence. Let perserverence finish its work so that you may be mature and complete, not lacking anything." You figured out that one way before I did (:

And September 19th, 2011. Today. What can I say... you light up my life. I could have sang you Happy Birthday 100 times today just to watch your face light up as you bounced up and down and clapped. I think I made it to about 35 songs (: You have taught me what pure JOY is. It's not rushing through life to get from point A to point B as quickly as possible while trying to acquire as much as possible inbetween. You got a card today from Miss Kelli at the pharmacy where we get your prescriptions. Why? Because you engage people, you smile and say hi to a perfect stranger. I think there is a depth in your eyes that has developed from two years of medical hardship and softened your heart, not to mention your mother's soul. I am so blessed to be your mom that I almost feel bad for people who don't get to know you in some way. It has been really fun to write about you so people around the world can have a glimpse of the joy I get to have every day. You have your dads sense of humor which is just so darn funny. Thanks for loving me, Eve. I couldn't ask for more.

You have come so far in this past year physically, mentally, emotionally, relationally. Taking you to the doctor has become a fun time to show everyone how much you have changed. Keep going girl, you know what it takes and I'll be right here cheering you on (:

Love, Mom.

Awe

2011-09-17T22:53:00.002-05:00

Hi friends (:

Excuse my punctuation, I'm attempting to blog from my phone again (:

I have been pretty reflective going into this weekend. Whenever the topic of Evies birthday is mentioned it is either followed by a statement of wonder from someone who knows her story, or a brief moment of awe from myself if I mention it to someone who hasn't met her, as I wish I could sum up the joy that she is and the significance of a second year of living.

I started a new womens Bible study on Tuesday and during our video session the speaker quoted a man who had said "awe preceeds faith." Meaning a period of awe typically results in a leap of faith.

What a good way to sum up the past two years. I have continually been in awe at Gods goodness and provision in hard times and my faith in His sovereignty has solidified.

I can't wait to send the next two days in awe of the blessings we have been given! When Evie laughs there is an inevitable leap in my faith every time.

Pictures to come, we're bringing out the good camera for this one!!!!! Happy birthday eve eve, Evie Jayne!! (:

Love you friends.

Evie's first gig...!

2011-09-12T08:40:00.003-05:00

Hi Friends (:

Well okay, Evie doesn't have a "gig" yet... but she starts music class today! For one of her birthday presents she is starting a kids music class. We have a demo class to make sure she likes it, and she'll start weekly classes on Friday if she does. When Lyla was little we did a play and music class so I'm really excited to start music with Eve! My sister had pandora radio on yesterday at my parent's pool and Evie managed to twirl around while sitting on her bum (: Hopefully it will be fun for her!

Her pulmonology appointment on Tuesday went fantastic, her doc was happy to see her and her lungs sound great. I used to dread pulmonology appointments because for months she stayed the same and we just had to wait for her lungs to get bigger so we could take her oxygen off. That long 17 months of continuous oxygen was SO worth it... I can say that now that I don't have to carry a tank around everywhere we go (:

Countdown: 1 week until Evie's birthday! We are going to have a small family party on Sunday after church and on her actual birthday we are going to take the girls and their cousin to either the zoo, bounce u, or something equivalent. We are still tired from her first birthday party (ha!) so we're going small this year. I have actually been pretty emotional about this one. Last year she was getting sick right around the time of her party and we made so many preparations I didn't have time to cry... this year has been a fall of reflecting and being thankful, and just enjoying Eve... and I DO apparently have time to cry just thinking about it! (:

Countdown: 2 weeks until Evie's surgery on her right foot. The first surgery on both feet took the doctor about 25 minutes so I'm sure this one will be quick also. I'm not as worried about the surgery as I am about the recovery... 6 weeks in a full leg cast is not going to be Evie's idea of fun. In February when she had both legs casted she was just crawling, so she could still get around with the casts on, but now that she's up, down and climbing everywhere I'm thinking it will get in her way. Sigh. It's just 6 weeks, we can do it!

I have a few adorable pics of Evie tailgating for her favorite college football team, the Huskers of course! I am working on getting them from my phone to the computer... technical difficulties (: Hopefully I will have it up soon!

Love you friends! Thanks again for the incoming emails and comments on Evie's article. SO fun to share her life.

the distinctly named...

2011-09-04T22:54:00.002-05:00

Hi Friends!

Wow, what a fun weekend with Evie's article coming out. The girls and I took the "distinctly named" Dr. Bonebrake his very own copy last Thursday, and it was so incredibly great to see him. We had a good laugh about the "distinctly named" line in the article, we know him so well now his name seemed less and less weird over time I guess (: I forgot how closely we got to know him during the months before Evie's birth. We saw him at least every 3 weeks for about 7 months... more than I see some family members! He was absolutely thrilled to see Evie doing so well, pulling herself up on the chairs in the waiting room and cruising from one piece of furniture to the next. At one point he leaned down to talk to her and said "Wow, I never thought I'd see those big blue eyes in here." Brings me to tears just thinking about it. Omaha is truly blessed to have such a wonderful physician to take loving care of unborn babies like Evie and their families. God was really taking care of us when we were sent to his office.

Thank you all for the wonderful comments and emails, it has been fun reading through them. It is amazing to have so many people care about Evie. I got an email from a mom whose daughter had a rare form of bone tumors and could have lost her legs. She had major surgery, her legs were saved, and she is now a Division I Collegiate Swimmer and captain of her team. It's easy for me to worry about Evie's future if I let myself look ahead too far. School, activities, friends, all of the unknowns that come with being a little different. It was a blessing for me to read about an older child who has persevered through such a huge trial with success.

Lyla's first day of preschool was fantastic, she is such a great kid. Sometimes I worry that she's a little too much like her mom, but I think she's going to make it (:

We have had so many house showings lately, your continued prayers are appreciated! My vacuum would like a break and so would my kids, being out of the house for a whole day can take a toll on our schedule but it will hopefully be worth it. I am looking forward to whatever God has in store for us next.

Love you guys! Thanks for loving us and checking in (: We get to see Evie's pulmonologist on Tuesday, she has been doing great so it should be a breeze.

Evie's National Debut!!

2011-09-01T07:00:00.000-05:00

Hi Friends (:

I am so overwhelmed with JOY and excitement to tell you that Evie's story comes out TODAY in Spirit Magazine, the Southwest Airlines in flight magazine across the nation! Yes, Evie will be tucked into the back of airplane seats across the USA.

You can read the article online here: http://spiritmag.com/features/article/holding_onto_hope/
at the bottom of the article you can click "read complete article" and it will show you the exact thing that was printed in the magazine. How do you get a magazine... fly southwest?? We have a few copies that we're distributing to Evie's doctors and family (:

A BIG SPECIAL THANKS to Brian and Sara, who worked so hard to take the photos and write the article. They spent hours and hours caring about us enough to put this wonderful story together. Love you guys!

And love you friends! Enjoy!!

Isaiah 40:28-31
Do you not know?
Have you not heard?
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 exhaustion.
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.

Mischevious Eve says "I"

2011-08-28T21:41:00.002-05:00

Hi friends!

Where did August go? I feel like we just said goodbye to Lylas preschool teachers and she has orientation this Wednesday for her new class! I don't need any reminders that Kindergarten is next year, I WILL be the mom crying in the parking lot. Ugh!

Evie Jayne seems to have joined her peers in their terrible twos (: its funny as a mom not to dread the naughtiness... I actually am a little proud of her when she is determined to do things her way! She knows that she needs to obey John and I but its pretty awesome that she has come far enough to have a mind of her own. We saw her neurologist this week whose welcoming words were "wow, who would have thunk???" Its amazing we are weeks away from her second birthday. Between emptying drawers, crawling out of her highchair, emptying my closet of shoes and just plain driving Lyla crazy by getting 'this close' to anything she is playing with, she has earned the nicknames Mischevious Eve or Devious Eve (: love this kid!

Secondly I really feel like her speech is picking up which is good. She still doesn't really pronounce words like she should but she I attempting to make many more sounds. When I tell her "I love you" and annunciate my words she replies by nodding wide eyed and saying "I" (: one out of three words works for this mom!

I finally figured out how to blog from my phone which should make my posts more frequent, and I'm thinking I can send pics straight from here also! Bear with me while I work out the kinks and find the spell check (:

AND Evies magazine debut is September 1st, so be looking for some big news (:

Love you friends! Thanks for praying for us and loving us for the past 2 years. I feel like I have been sharing Evies story a lot lately and I couldn't feel more blessed than to have her with us, and to have the amazing network of friends and family supporting her that we have.

Getting ready for school:

evie's first prayer...

2011-08-18T20:24:00.002-05:00

Hi Friends,

Evie woke up early today so John brought her into bed with us. She sat between us and played for a while, then grabbed my hand. I felt her pull John and I's hands together, her holding one of each... she bowed her head, closed her eyes, said something softly along the lines of "lala ma na da a" and nodded her head. We hold hands together whenever we pray as a family, and this was so very obviously Evie praying. Considering she doesn't talk much I was in awe of her little act of worship this morning. I can't wait to hear her prayers when I can understand the words, yet this spoke to my heart more than any sermon. Wow, I love this kid (:

Love you too friends (:

Speedy Elsaesser!

2011-08-14T20:56:00.002-05:00

Hey Friends!

WOW I haven't taken a blogging break for this long in a while... sometimes life just catches up with us. The past few weeks have been crazy busy... John and I seem to do stressful things all in a matter of months. For instance, the year Lyla was born, I finished my first and last year of teaching, John switched jobs twice, we bought a house, I quit my job to stay home, and John started nursing school.

This week we looked deeper new homes, had several showings, I got in a fender bender, worked with insurance to get my car fixed (ugh!), dropped my phone in the pool, got our whole house painted, sewed six baby slings for friends, made decorations for and attended my high school reunion... in addition to eye appointments, dentist appointments, swimming lessons, two birthday parties, our normal time at the gym and trying to fit in a little sleep! I'm not trying to make excuses... but, well, actually I am (:

Speedy Elsaesser, AKA Evie Jayne, is trucking along in her walker! She is getting better at pushing it and taking steps simultaneously which is a goal. When she started (in the video you can see) she would push... step... push... step, now she is doing both more smoothly. Pretty exciting for everyone. She is also pulling herself up to stand and is getting back down on her own. BIG STEP! She has been maneuvering her way up for about a week but was unable to get back down (she doesn't like to bend her knees) but she's finally getting it. Just another sign that her legs are getting stronger.

Another big step is that John or I can stand in front of her and hold her hands and she will take a few steps. She is less comfortable with this but will do it and loves the praise she gets when she makes it!

This week is looking much more laid-back (I hope) so hopefully we can get some R&R. I haven't convinced Lyla that napping is "cool"... but can usually convince her to watch a movie so Eve and I can take a break. I really need to dig into God's word and spend some time in prayer. These busy weeks burn me out spritually and I find myself much more quick to get frustrated and just not be quite as enjoyable to be around... a little God time should straighten that out (:

Love you friends! I promise it won't be another 2 weeks before I'm back (:

nice legs!

2011-07-28T23:39:00.003-05:00

Hi Friends!
People often ask me what the clinical trial is doing for Evie's bones. We had some x-rays done at Evie's orthopedic appointment yesterday so I thought I would show you for yourselves! I requested a disc of Evie's studies that have been done, I'm sure you will notice the difference:

x-ray of Evie's right leg, taken 9/20/2009 at 1 day old.

bone is undermineralized, short, bowed, and "disorganized" as her doc says.

x-ray of Evie's right leg, taken 7/27/2011 at 22 months of age.
bones are still undermineralized, yet there is lengthening, straightening, new bone forming, and organization into "normal"-ish, functioning leg bones!

can I get an AMEN!

Her doctor remarked that these two x-rays don't even look like they are from the same child! She has had such tremendous improvement in the past 22 months.

For those of you who are interested, in the top photo, the ends of Evie's bones are there, you just can't see them because of how undermineralized they are. They are basically cartilage that hasn't turned to bone yet. The lines in the more recent x-ray are stress points, or possibly micro-fractures from when she was still in utero or were caused at birth. When she gets more mobile these will be the possible breaking points, although her mom seems to think she will surprise everyone and stay in tact (: You can see the woman's hand in the more recent photo, this is what a more normally mineralized bone would look like, you can see Evie's are more gray, showing the undermineralization.

Love you friends! Thank you for your wonderful comments on Evie's walking video, she is practicing every day and gets so excited to show off her new skills (: She walked around a little when her friends were over today, it was so much fun to see her eye-level with kids her age.

... and TODAY!

2011-07-26T22:55:00.002-05:00

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40:31

Thank you Miss Susan for the new walker!

I can't describe the feeling of watching Evie walk today. Tears of joy, friends! Tears of joy!

yesterday...

2011-07-26T22:50:00.002-05:00

go Evie!

step step!

2011-07-21T15:33:00.007-05:00

Hey Friends!

What a HOT summer week! I can't even believe the heat index here in Omaha... over 100 for the past few days. That has given us a lot of time to spend in the pool with friends or nana and papa, so it's been good (:

In regards to the title of this post... Evie is STARTING... very very slowly, to cruise furniture! We have to (1) get her to stand without fussing (2) entice her with something amazing like a brownie or juice box, and (3) help teach her how to shift her weight to a single foot so the other is free to move. The mechanics of taking steps are so much different than you would imagine, we are SO blessed to have such an amazing PT who works with Evie and I so I can learn how to practice with her. Miss Susan is the best!

We also found Evie some shoes at Target that fit right over her braces. We went to a more expensive childrens shoe store but would have had to buy shoes that were 2 sizes too big, but while I was at target one day I saw some sandals (that happened to be on clearance for $6!) that fit perfect! She needs shoes over her braces to give her some traction and stability.

We are expecting a walker sometime in the near future to help Evie balance her weight on her sides instead of in front of her. She panics when she is holding onto something and it moves, so we are hoping to try something a little different. We got her a toy walker that is actually small enough for her to stand, but she isn't loving it.

Brian took a few more photos this week, I can't believe how big our little miracle girl is getting, and that it was two short years ago I was gearing up for her birth. Praise Praise Praise our Heavenly Father for his gracious provision for Evie's life and his tender love to John Lyla and I as we walked this road with her. Pretty soon she's going to be walking herself!

I am dying to get video of her talking a couple of steps but I'm usually the one moving her hips and cheering her on, so hopefully I'll get one soon (:

Love you friends!

photos by Brian Lehmann www.brianlehmann.com

look at this BIG girl!

there's that missing tooth (:

back in town...

2011-07-12T22:21:00.003-05:00

Hi Friends!

We are back after an adventure filled long weekend in Colorado. I thought about blogging last week to inform you of why it was taking me so long to get back to you about Evie's ABR, but I figured it wasn't the best idea to put your vacation schedule on a public website (:

Evie's ABR went great. She did well beforehand in the pre-op area, did better than I did when the nurses took her out, and did okay waking up. She was really crabby when they brought her back, but she had just been sedated and tested on by a bunch of strangers. That would make me crabby too.

The results of her ABR are mixed. The good news is she passed! Which is great and means that she can hear. The mystery is that she has abnormal middle ear function with no good reason. She has had flat tympanograms (for those of you who know what that is) every time she has had one, with no fluid in her ears. It could be a malformation of the ears, or she could just be an exception to the rules... again! So we decided with her ENT that the best thing to do is watch her growth and speech and see him again in a few months.

Here are a few pics from the weekend. We had to keep her on oxygen in the mountains due to altitude.

Is it just me or does she look so much older!? She is getting so grown up.

hike!

check out that view!
We ended our weekend with friends who mentored John and I when we were first married. They have 6 kids and our girls had an absolute blast. Lyla encouraged us to buy their house but leave them in it (: It was a special treat to get to spend time with them, a family who truly seeks God day to day and does a great job of loving each other.

It took us two flights on two days with an overnight in Denver to get home, but we made some new friends in the airport and I got to share Evie's story a few times. It seems so surreal to talk about those early days sometimes and even looking at these pictures melts my heart. God is so good. We are so blessed.

Love you friends!

ABR tomorrow!

2011-07-04T22:56:00.003-05:00

Happy Fourth of July Friends!

We have had a firework packed weekend with family and friends, it has been a blast. We decided to stay in town and it was a nice weekend for us to relax.

I have been working so hard to get a good new picture of Evie to put on this site, but with her new oxygen-free lifestyle I can't get her to sit still for very long!

Evie's ABR is finally tomorrow. She is healthy and I'm sure everything will go great. She will be under general anesthesia which is really the only thing to be worried about but she has done well with anesthesia in the past. Say an extra prayer for her (and I) as we haven't done the hospital routine in a while and it's always a little stressful. Her test is at 8am, so we have to arrive at 630am, and we will be in post-op/observation for a few hours after her test. Hopefully we will have a good grasp on her hearing when we are done and can make plans to work toward better communication whether that be hearing aides, sign language, etc.

Thanks for praying for us! Love you friends, hope you had a blessed 4th (:

separation anxiety...

2011-06-27T23:48:00.002-05:00

Hi Friends.

Where do the weeks go in the summer? I tucked the girls into bed tonight to the smell of chlorine hair and sweaty kid. Must have been a good day (:

We saw the MacDonalds last Thursday for a going away dinner, and said our final goodbyes yesterday afternoon. I never thought I'd seriously say "Thank God for Facebook" but that has been my exact thought several times this week (: It was sad to hug them one last time.

Watching God carry the MacDonalds through this time has brought back so many memories of my pregnancy with Evie. I started a new Bible study this morning with mostly women I haven't met, and luckily I was sitting in the back so hopefully they weren't watching me sit and cry for the first hour. I thought I had developed the skill of not crying in public over the past few years, but sometimes God softens my heart so I listen better. Today we read the verse "In his kindness God called you to his eternal glory by means of Jesus Christ. After you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation." What a promise. Pray for the MacDonalds as they take Aria home with them on a three days trek back to New Zealand. That God would restore, support, strengthen them, and place them on a firm foundation.

Both Lyla and Evie have had separation anxiety lately, which is actually quite odd around here. Lyla is in general pretty independent but I have been hearing more "I want mommy" lately or demanding hugs and kisses. Talk about softening my heart. Since Evie has been off of O2 the past few weeks we have been leaving her in the nursery at church and at the gym, and it has been doubly hard to be away from her even for a few hours the past couple days. So I guess the separation anxiety is going in both directions. It feels good to take a break from the hustle and bustle and just cry it out. I haven't done enough of that lately.

We had our first house showing tonight. It's exciting to have people walking through, but I still don't feel the pressure to move. I'm not sure if it's just not the right time yet, or God hasn't shown us where he wants us to go, or the place he wants us to go to isn't for sale yet.... could be any of those. So we wait, look around, and thank Him for the roof over our heads (:

Love you friends. Those pictures I promised are still in the camera sitting in front of me... i'll get to it tomorrow (:

croup, teeth, and apnea...

2011-06-21T21:12:00.004-05:00

Hi Friends (:

Sorry to leave you hanging yesterday. My heart is so heavy for the MacDonald family it was hard for me to consider writing about anything else.

To catch you up on Evie. The reason she didn't have her ABR today is that she has croup, a nasty upper respiratory bug that makes anesthesia out of the question. It would be unsafe to intubate Evie unless she is in tip top shape, so we will pray for that up to July 5th when she is rescheduled to have the test. On Sunday morning she woke up feeling great, we went to church and lunch and all was well. When she woke up from her nap we noticed her breathing loudly, and by evening she was really struggling. We took her to the ER where she had an episode where she couldn't catch her breath, so they did an epinephrine breathing treatment and admitted her for the night for observation. I'm really glad we took her in, if she had the episode at home we would have most likely had to call the ambulance.

It was funny driving to the hospital Sunday, I shed a few tears and caught myself feeling ashamed. Driving to the hospital last year would have been second nature, but this time I was crying! I feel like I've gone soft and my Emergency Training of Evie's first year of life has gotten weak, but it's also refreshing to realize that a trip to the ER isn't necessarily normal, and I am allowed to be upset.

Also along those lines, last Friday we went to walk around the College World Series opening day with my sister and her son. We were walking around with Evie and her cousin in the double stroller and they were poking each other (a little too much like siblings!) and Evie was getting visibly upset. I bent down to comfort her and noticed her front lower TOOTH was GONE! The older kids who have HPP have been known to lose their teeth early, but I guess I assumed since she was on the clinical trial she wouldn't lose her teeth, but she did. I called her dentist (my dad) who said he'd like to take a look at the tooth so we spent a few minutes looking before realizing that every piece of popcorn, chip and sunflower seed looked like a tooth (: Oh well, we'll catch the next one.

Lastly, we got the results of her sleep study back, and it's confirmed that she has Sleep Apnea. Her pulmonologist explained the two types of apnea: obstructive (something is in the way) and central: where one just doesn't make an effort to breathe. Evie has "central" apnea, meaning that while she's sleeping at times she just doesn't make an effort to breathe. Comforting right!? Since we keep her on O2 all night anyway that should be sufficient for now, and I am supposed to talk to her other physicians to see if central apnea is common with HPP. It is likely that as her brain matures she will grow out of it.

So we see the pediatrician tomorrow to make sure that we are keeping her croup under control, and pray that she feels better soon. I think she is making improvements each day.

Thanks for praying for us, today was the FIRST day in weeks that we've had nothing on the calendar. It was so wonderful. There was a crazy storm that went through Omaha last night, knocking over our one and only tree, so the girls and I spent a few hours chopping it down and getting rid of it, but it felt good to be outside and under no pressure of a schedule. I really needed that.

Continued prayers for the MacDonald family would be appreciated. Thanks for loving us friends, and I promise pictures soon! I have a whole batch waiting to be uploaded (:
Love you.

Finally made whole...

2011-06-20T21:47:00.003-05:00

Hi Friends.

Crazy couple days here at the Elsaesser home, long story short Evie is really sick, so no ABR tomorrow. I would like to elaborate on that and Father's day, but today is an important day and I want to commemorate this post to someone special.

Aria went to meet Jesus today. I have a good feeling she has known Jesus, but today she got to see him face to face. It's a glorious day to celebrate Aria having a whole and perfect body. After reading "Heaven is For Real" the simple joy of being in heaven as told by a 4 year old would make anyone excited to go there. I am honored to be friends with Aria's parents, who have stood by her side through over a year and a half of super high highs, and devastating blows. They have maintained a marriage and survived this tough time by resting in God's grace and peace. They are an amazing testament of faith and God's goodness to those who love Him. It's a very sad day for those who will miss Aria. We went to see her a few days before she got really sick and Lyla won't forget going to see her friend.

Join us in praying for the MacDonalds as they cope with this new chapter, and praise God for preparing a place especially for Aria. We'll be there to play with you soon enough sweet girl (: We love you.

I'll be back soon,
Lindsey

it caught up with me...

2011-06-15T21:02:00.002-05:00

Hi Friends (:

I miss you! Thanks for checking in although I have been so absent lately. I am finally down with a sore throat, dry cough, plugged ears and sinus congestion. I don't know why I thought I could go 100 miles an hour, 24 hours a day 7 days a week and maintain my health. So it caught up with me and is forcing me to sit down a little more, which actually feels really good (:

More importantly, Evie's health. She is doing great! Being off of oxygen has been such a major blessings for all of us. The most important aspect of that being that Evie can sustain her O2 saturation while not having to be hooked up to her cannula 24/7. The second most important aspect is that we are LOVING her sweet little tube-free face! I feel like we have been waiting for so long. I spent a lot of tears missing her little face, and wondering when we would get to look at her without her tube. And the less important, yet really awesome thing is that people don't ask us what's going on with her all the time. She has some space to just be Evie, instead of looking "sick" or getting questions. It's a nice break for everyone.

I mentioned Evie's hearing test a while ago, and we saw the ENT last week. Evie can hear conversational sounds, but possibly not much else. The ENT couldn't really make any other educated guesses at what is going on, so we are having an ABR on Tuesday. An Auditory Brainstem Response test will be done under anesthesia (so she doesn't move) and is supposed to be the most accurate way to find out what someone can hear when they are too little to tell you what they can or cannot hear. You may be wondering why it's important to know what she can hear since she can hear us talking.... the most important reason is that her speech is developing very slowly and she is getting behind target language markers. This means that her hearing is affecting her communication. If we know what she can hear, we can provide her with any aides needed to help her hear and communicate better. So that is what we will find out next week.

Last week I had root canal surgery and Harry got neutered so we were a busy, recovering bunch over here. Lyla also started swimming lessons at a local gym where we are spending a lot of time playing with her and my friends.

If you could pray for us that the girls don't get sick, that would be huge for me. If Evie gets even a smidge of whatever nasty bug I have, there is a good chance they won't do her ABR on Tuesday. It is already approved by insurance (which is a miracle in and of itself) so we would like to get it done.

We thought we sold our house last week and the offer fell through, and we ended up trading John's car in for a minivan! I feel like we have been making some major financial decisions all at one time, and it would be nice to take a break from that. My good friend is going to list our house on the MLS and hopefully we will get some more action using that. I am thinking we haven't figured out where God wants us to land yet... since I don't really feel super excited about any of the houses we have looked at. Some would be a good fit, I feel like I need to invest a lot more time and prayer into the decision. So maybe it's good we haven't sold yet, we could be living in my parents basement trying to find a house, yikes!

Thanks for loving us and praying for us. I am constantly in awe of the number of people who pray for Evie, and the very obvious impact it has on her health. I don't think we would be even close to where we are today without you all lifting her up to our Almighty God who hears, and heals. There is a new song called "manifesto" on the radio, and whenever we hear it Lyla and I sing "AMENNNN!!" at the top of our lungs. I'm so glad God enabled some people to sing and write music so we can worship together.

Love you guys (:

summer wipeout...

2011-06-10T23:28:00.002-05:00

Hi Friends.

I have so much to post about, and so little energy to do it. Just wanted to check in and say hi, and that I'm still here (:

Love you, and I'll be back soon.
Lindsey

No O!

2011-05-29T23:41:00.004-05:00

Yes that's right friends, O=oxygen... and she's off! During the day at least!

isn't she beautiful!?!?!?!?!? (:

I have been dying to write this post since our appointment on Tuesday. We saw Evie's pulmonologist, and he was thrilled to hear Evie has been doing well without oxygen that morning. After looking at her chest x-ray from last month it was decided that we can take her off of O2 during the day! She still has to wear it during naps, night, and in the car, but we'll take it! I have tried to take so many pictures of her with her tube off, but when I tell her to say cheese she starts waving her arms so fast I can't get a good pic... or she turns her head (which she learned from her older sis... great)! Then we got called in for a sleep study on Wednesday night, which I'm pretty sure didn't go well... but I'll wait to fill you in until I get the official results. It shouldn't effect the oxygen decision.

So we have been busy busy, exploring this new wireless world. This is Evie riding in the train at the zoo with Lyla and two of her buddies. Don't worry, I held her from behind when we started moving (:

AND we officially decided this week to put our house up for sale. WHY NOT right!? We are anticipating Evie will start walking sometime in the next year, and since summer is the best time to sell we are going to give it a go. We are looking for a ranch home so that all rooms are accessible to Eve without going up or down stairs, and without us worrying about her falling.
My sister came over on Saturday to help me go through our stuff, and after a few hours and a delicious brownie this is how Evie looked:

This is a pretty good visual of how I FEEL right now... but definitely not as cute (:

Lastly, Aria had a rough weekend. My heart aches for her family. If you want to check in on her you can check www.aria.org.nz . Send up an extra prayer for her.

Love you friends! God is SO GOOD.

"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

Happy Birthday Lyla!!!

2011-05-20T22:09:00.004-05:00

May 19, 2011

Dearest Ly,

There is a lot that can be said about daughters. Sugar and spice... well these past four years haven't been everything nice, but you have been my JOY.

In this past year you have grown into a little social butterfly with a knack for friendship. I was even told that one of your best buddies has an imaginary friend named Lyla that he takes everywhere with him (: You can keep up with the boys even though you prefer to wear dresses. You like a good game of "tackle" but you like to wear my lipstick. You are a good friend because you are kind, you care, and you accept the differences of others. You know that loving God and loving your friends is what makes you truly beautiful.

If I could create the perfect big sister for Eve, it would be you. Your strong personality and silly sense of humor lift her spirits. I had to smile when you congratulated her on an impressive burp with a "nice one Eve!" and laughter! You will challenge her to grow and succeed. You are her perfect speech therapist, she will learn so much from you. The word she says the most often and most clearly is "Lyla." She loves you so much!

When we were first looking into adoption or foster care, I told you there were kids who didn't have parents, or who couldn't live with their parents anymore, and before I got to my big explanation you said "They can live with us! They can be in our family!" Your love for others is beautifully genuine, and your acceptance reminds me to put others first and to love others every day.

I love you more than the sun and the moon. Through countless doctor's visits, surgeries, hospitalizations, and therapy sessious you have been my partner in crime, my travel buddy, and my sunshine. The hospital could be so depressing without you there to point out every statue that happens to be naked. Without you, who would push all of the elevator buttons, locate every bottle of hand sanitizer, or find the pink milk in the cafeteria? You know how to humble me, like asking me why I have lines on my forehead. You know I didn't have any of those 4 years ago right!? (:

HAPPY 4th BIRTHDAY LYLA! Thanks for loving me. I can't wait to see how you continue to grow in the next 5, 10, 25, 50 years. There's no doubt in my mind you can do anything you set your mind to.

Love, Mom

Can you hear me now???

2011-05-18T21:14:00.002-05:00

HI FRIENDS!

Wow, Where have I BEEN!? Let's see... gymnastics, the dentist, swim lessons, preschool, playdate, my gparents, swim lessons again, preschool again, dog training school, foster parent training, gymnastics again, soccer, baby shower, church, a few more soccer games, and I'm SPENT! (:

Evie had a hearing test last week, and the results were about as uncertain as any behavioral test is with an 18 month old. Yes, she can hear. Conversational level sounds at least... which is great. They started with a test where they put a little ear plug into her ear and four tones go in, and should come back out. Only one of her four consistently came back. What does that mean? No clue! Then we did an ear drum test where a little peak shaped line is supposed to bounce back and her line was flat. That usually means fluid behind the ear, but Eve didn't have any fluid, and had been on antibiotics 7 days prior. What does that mean? Possible structural problems, but nothing certain. Then we sat in a little room, and the operator guy behind the window spoke through different speakers. He would say "Evie, ba ba ba ba ba" and instead of looking at the speaker she would look at him in the window (: She turned for all of the conversational level sounds, but none of the high/low pitches, or soft sounds.

SO we see an ENT in 3 weeks so he can look at the structure of her ear. There are little bones in you middle ear, and since we are pumping her full of bone-making enzyme we need to check out if this is affecting her hearing. Sometime during Evie's first year I compartmentalized my thinking into "life threatening" and "not life threatening" files and as this falls into the "not" I really am not worried about it. She can hear me, I can hear her, we are happy for now.

We had a BIG visitor this past weekend! (yes, in the middle of that list of business we had going on - never a dull moment!) Her name is Sara, and she is writing the magazine story for Evie. If you've been following us for a while you will have seen Brian Lehmann's photos, and Sara will be writing the story to accompany the photos! The plan is for it to be published in a magazine this September with over 3 million copies circulated!!! Evie will be the cover girl (: Anyway, Sara was wonderful and the weekend was great. We watched videos of the weekend of Evie's birth, flipped through scrapbooks, photos, and answered lots of questions. She met our fam, one of Evie's favorite doctors, and got to experience preschool soccer. I'll be honest, I felt like I got hit by a bus on Tuesday morning! To mentally browse through the past 18 months in one weekend took a lot of emotion and thought. Evie has been so healthy the past few months it was hard to even look at her and see the little girl who was so sick for a while there.

I was flipping through my Bible on Sunday night, and found a passage I specifically marked 8-8-09... about a month before Evie was born. It reads:
That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasureably great glory that will last forever! So we don't look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever. - 2 Corinthians 4:16-18

What a beautiful promise. "the joys to come will last forever." Amen Friends! Love you (:

Mother's Day (:

2011-05-08T13:09:00.002-05:00

Hi Friends!

I had a few people ask me yesterday what our big news was from Wednesday, so I figured I need to get this post written... and what better day than Mother's Day!

Evie update first: She's doing great! Had a little fever a few days ago, but I'm pretty sure she's just teething... and growing like a weed!

Okay, our big family news. On Wednesday John and I attended a luncheon to learn about Foster Care. It was put on by an organization called Christian Heritage, who place kids in Christian foster homes. We have prayed about adoption, fostering, and the prospect of additional kids for a while now, and thought we might go gather some info. Lunch was good, we both enjoyed it, and met some neat people who work for Christian Heritage.

Thursday afternoon I called to see if we could start training this summer, and training had started the week before. Bummer. So I chatted with the guy, thinking we would start training in the fall (we weren't really in a hurry) and by the end of the conversation he invited us to come that night, and just start a week behind everyone else. SO we officially started Foster Parent Training on Thursday night! It was the 2nd of 10 weeks of training, that will be followed by a home study, so I'm thinking we may not be licensed for 3-5 months, we are still new to learning how it all works. And Evie successfully stayed with a non-familial babysitter for the first time - and loved it! Huge relief for us.

We are hoping to ease our way into fostering, so our initial plan is to do "respite fostering" this fall. By doing respite we would take kids who are in foster homes already for a weekend or a week to give the families a break. This gives us time to get our feet wet, experience what foster parenting is like, and see how it affects our kids. Then we will pray about the right timing in doing long term foster care, and possibly adopting.

So we're excited that God has opened this door for us, and we're feeling really blessed that we have already saved money with the intent of adoption... because we're going to need a bigger car! My Honda Element has two seats in the back claimed by Lyla and Eve, so I'm seeing a minivan in our future. Luckily we have a few months before we will be licensed to figure out how more people are going to fit in our house and our car, but it will all be fulfilled with God's blessing in his time.

Lastly, we added a new member to our family yesterday (why not do everything at once right!?). We have been scoping out Harry Monster Elsaesser for a few weeks and made it official yesterday. He is Lyla's 4th birthday present from my wonderful grandparents, but we picked him up a few days early since we wouldn't have been able to get him any other time (: In her words "Is he a boy?" ("yes") "I never had a brother before!" She is thrilled, and he's only had one accident so far. We start "official" puppy training tomorrow (:

Love you friends! Keep us in your prayers as we embark on our new adventure(s) (:

Spring!!!

2011-05-04T22:43:00.002-05:00

Love you friends! Had an exciting day, will tell you about it soon (:

I can...

2011-04-29T21:59:00.004-05:00

stand all by myself!!!

finally loving these braces (:

happiest kids at the hospital (: you can't see Evie's hands because she's clapping

Hey Friends (:

Our crazy busy week was great, although I can't wait to go to BED tonight!!

A few highlights: Evie showed her physical therapist, bone doctor, and geneticist her new milestone... standing!!! Her xrays and kidney ultrasound and most of her blood numbers were normal or nearly normal, and her developmental scale test went fantastic. The lady testing her was shocked at how well she's doing compared to last time... horray!

Thanks for caring about us, loving us, and all of your encouraging notes.

Love you!

April Showers...

2011-04-25T20:28:00.002-05:00

bring crazy schedules???

Hi Friends (:

Last week I decided to sign Lyla up for swim lessons to get her ready for the summer, and with that one addition it looks like a bomb went off on my calendar! So I put the kids down early to sit down and take a little break (:

Happy Easter! He is Risen! I have put a lot of thought into how to post about Easter this year. I barely got through the weekend without shedding a few tears whenever a song would come on about our risen Lord. Aria had a scare last week, and I was reminded of how it feels to surrender our children to God. Evie has "coded" twice in her short little life, and both times I felt so out of control and helpless. The first time I guess I was pretty helpful since I had to pump the ambu-bag to keep her breathing, but the second time a rush of hospital staff came in to save her while we stood nearby and tried our best to explain her disease and beg them not to break her ribs with CPR.

When I was pregnant with Evie I told my mom I could handle anything, except if they told me she wasn't going to survive. Obviously that news was devastating. What do you do as a mother? I had another child to take care of, I couldn't cry ALL the time nor did I want to. So I decided Eve's life had already begun, and was continuing on inside of me until it was time to go. I remember spending one night, sitting on the computer just as I'm doing now, looking at headstones because I didn't think I would be able to pull myself together enough to do it once she was gone and I wanted hers to be beautiful.

I read on another mom's blog about visiting her daughter's "doorway to heaven," her place of rest. I read the story of her dying in her mother's arms, as it was thought Eve would do. The only way I survived those few months was knowing that Jesus was waiting to take her home, and she would feel much more love in Heaven than she ever would here on Earth. God loved us so much, that he watched his very own perfect Son die to pay the penalty for MY sin, so that I could spend eternity with my daughter. To prepare a place for us to live, laugh, and spend time together forever.

So I spent a lot of time this weekend sheilding Lyla from the Easter Bunny and focusing her eyes on Jesus. It would be devastating for me if she misses the point. Yep, I'm turning out to be "that mom." (: I know we have a lot of years until she will fully understand the story, but I figure I can't erase what I fill her mind with in these formative years. Hopefully she wasn't the only kid who got a note from the ol' Bunny that said "He Is Risen! Love the Easter Bunny." I told her he is so happy that Jesus is Risen that he hides eggs in everyone's yards to celebrate, to which she replied, "that's weird!" (:

Adding to our crazy schedule, this is Eve's 3 month week of blood draws, urine samples, xrays, a kidney ultrasound, PT eval, and a doctor visit... so we will be at the Med Center every day (: After a weekend of celebrating I'm going to cherish the time we get to spend together, even if it's at the hospital for a few hours.

Love you friends! Thanks for checking in with us, you guys are the best.

PS - I am in the process of uploading pics from our camera... coming soon!!!

what to say...

2011-04-17T23:54:00.003-05:00

Hi Friends!

I'm still here (: Actually I've been to paradise and back in the past week... my older sis earned a trip through work to go to Orlando for a few days, so we left Wednesday morning, spent nearly three whole days laying in the sun or riding bikes, and sleeping all night. It was amazing, refreshing, rejuvenating. And how many women get a few days away with their best friends!? Not many. I'm a lucky gal.

Today I went back to the hospital to see Aria and Anita. I got a text on Friday, that she does indeed have cancer. For details I will let you check out her website so I don't misinterpret any information http://aria.org.nz/ . I am convinced that there are many instances in which I won't understand why things happen on Earth, but that doesn't make them any less heartbreaking. Keep their family in your prayers as they start treatment and wait to go home. and that I can know how to support them. In such hard situations it's hard to know how to help.

Evie is doing well. Her braces are still on despite her many attempts to take them off and throw them away (: We have resorted to covering the Velcro with work-out bands, so she can't get to them.

I heard the song Blessings by Laura Story the other day on the radio, and it is just so relevant. I found a youtube video if you'd like to hear it. http://youtu.be/1CSVqHcdhXQ I've had it stuck in my head for the past few days, not by coincidence. So relevant to suffering, heartache and God's mercies.

Love you friends, I'll get some new pics of these cute girls up soon (:

THIS far...

2011-04-08T21:42:00.006-05:00

Hi Friends (:

Experiencing miracles is a tricky business. I have been blessed by the miracle of Eve's life so much every day, and in the meantime have met families who are experiencing miracles right along with us. Miracles are awesome. Amazing. Wonderful. Awe-inspiring. Sometimes once-in-a-lifetime. The down-side to miracles, is we usually have to experience heartache first. Big deep painful heartache. Then comes deliverance. Miracles.

Today I got a text from Aria's mom that said "It's a miracle ! Likely neither cancer or graft v host. Going home today" I couldn't help but cry, it doesn't get much better than those three words 'it's a miracle,' not to mention the other three 'going home today.' Hospitalized families long to hear those words. On Monday Aria went to the OR to have her biopsies and tests with an 85% chance of cancer. Answers coming Tuesday. Tuesday there were no answers, but the docs thought Aria might have graft vs. host... meaning her transplanted organs were attacking her body. And today she is home, waiting for final confirmation that she has neither. Cry out to God friends, he HEARS, and he ANSWERS. and some days just SING his praises.

When Aria's mom texted me, I immediately thought of a passage we have been studying in my women's study in 2 Samuel 7, where God makes a promise to David, and David responds by saying "Who am I, O Sovereign Lord, and what is my family, that you have brought me this far?" Honestly friends, I could pray this prayer every morning. Every evening. Two years ago we were in mourning, and God has brought us SO far. Who am I Lord, that you have brought EVIE this far. That you have brought ME this far. That you have brought JOHN and LYLA this far. That you have brought our FRIENDS this far. I am so thankful that God inspired David to write those words, as a written reminder of his faithfulness and how much he LOVES us. I couldn't feel more loved. Thank you Lord.

Thank you for joining me in prayer for Evie and Aria. I just finished reading the book "Heaven is for Real" about a little boy who takes a trip to heaven during an operation in which he nearly died. When he came back he slowly told his parents about his experience, but noted frequently 'Jesus loves the children. Jesus really loves the children. Don't forget, Jesus loves the children.' Thanks for loving my kids Jesus. I need that comfort (:

and I love you friends (: You are dearly loved.

on the rainbow...

2011-04-05T21:36:00.004-05:00

hi friends!

i can't believe it took me so long to post this good news.....

At Evie's 18 month check-up yesterday SHE MADE THE GROWTH CHART! 3% folks... 3%!! Happy Tears. This is the first time in 18 months we have been above the 0% line... and we even minused 8oz for her cast (:

we're on the rainbow friends... the growth rainbow.

sunshine!

2011-04-03T21:17:00.005-05:00

Hi Friends (:

Thank you for all of your encouraging words and prayers after my last post. They were blessings to me. After I sent my "bad day" post on Thursday night I decided to take a shower and relax a little. Just as I finished lathering my head full of shampoo, all of the hot water was gone and I just had to laugh. Seriously!?!? Guess you can't end a bad day with a hot shower! (:

Friday afternoon Evie had physical therapy and we were concerned about her foot, so the orthotics specialist met us at his office to adjust her brace. He moved the strap down a bit and added some sheepskin (think uggs) to make it softer. She is happier, we are happier, and the sun came out! She is in less pain overall, Praise God.

Lyla had her first soccer game yesterday, it was fun to get outside. She was pretty frustrated by the unorganized nature of the start of the season, but with time and practice I think she will really like it. We get to spend time with the most fabulous fun-natured parents, we have such a great time. Saturday night John and I got to go to a friend's birthday party and kick back for a few hours. We took Evie with us, but had plenty of extra hands to hold her. I think we even got a pic of me bowling with Evie in my sling (: It was a blessing to have some adult time, and can I just say that we have the most amazing friends??? Amazing. God knew I was going to need some awesome people to get me through this journey, and he has provided them every step of the way (you included!).

Tomorrow we have Evie's 18 months appointment (shots - yuck) in the morning, and we get her second cast cut off in the afternoon and replaced with her other brace, yay!!! The first thing we are doing when we get home is taking a BATH! She has been ordered to take sponge baths for the past month so we don't compromise the plaster on her casts and my little water baby is going to be thrilled to get back in the tub.

Insurance is... well... depressing... and it's Sunday so I can't make phone calls anyway. We'll save that explination for another time (:

Lastly, and very importantly, I have a major prayer request. I have mentioned our friends from New Zealand before and they are in need of our prayers. Aria had two 4-organ transplants in the past year and a half and now has EBV/mono, which causes PTLD or post transplant cancer. Tomorrow she has several tests including a lumbar puncture and two biopsies that will tell the family if Aria has cancer. The docs think there is an 85% chance she has it. Will you lift their family up in prayer with me? Let's pray that Aria does NOT have cancer and that the tests are conclusive (there is nothing more frustrating than an inconclusive test!) Also pray that the EBV clears and Aria can go home. Her parents are doing 24 shifts at the hospital, which is exhausting. I went and saw Anita today and she looked amazing despite the circumstances. It's amazing how God gives us grace when we need it. You can check them out at http://aria.org.nz if you are interested. God is good, he heals, he protects, and provides strength to get us through the storms of life.

Love you friends, thanks for joining me in prayer, and checking up on Eve!

it poured...

2011-03-31T23:04:00.006-05:00

Hi Friends (: - You know, we don't have a lot of "really bad days" around here.. well today it rained... and it poured at our house. Unfortunately we are all exhausted from little sleep the past few days, which magnifies bad days. - Lyla is in a behavioral funk that is exhausting all of my best discipline. An hour of discipline this morning ended in us both crying and hugging it out. We had a pretty abrupt end to vacation, and I think she's just working her way back into normal. - Evie just can't seem to keep her foot down in her brace where it needs to be. She's in a lot of pain, and I have to re-tighten her foot back down every 3-4 hours. She wouldn't even let me hold her this afternoon after I tightened her... more tears. - I recently sent a written Appeal to insurance over a sleep study Eve had done last February. It came back denied, and we received a EOB today saying that Evie's Orthopedic Surgeon is no longer covered under our insurance. This would be the guy that is cutting Evie's cast off on Monday, and has been following her bone growth since she was 2 weeks old. When I called our case manager I had her check our Neurologist since they work at the same building, and she isn't covered either. We have an appointment with her on Wednesday. She has managed Evie's seizures since she was 2 weeks old as well. I love and trust these people, and it will be hard for me to find new docs should we have to. I have some phone calls to make tomorrow, and could use some prayers that I can keep my composure better than I did today. - Top that off with catching my pant leg on the car door, a wet bed after nap time, and a migraine from crying, and I'm suddenly Debbie Downer over here! - I am so grateful for those of you who pray for us, if you could pray for Evie's pain and that her tendon would stretch back out, that would be so appreciated. And for insurance issues, that I can be a God honoring woman when dealing with such a touchy situation. - God is good. Evie is alive. Lyla is a great kid. John is amazing. One bad day isn't so bad I guess (: - Love you friends. - Sorry about the weird spacing on this post... blogger isn't recognizing when I press "enter." must be the bad day fairy again (:

she's got her new shoe on...

2011-03-30T14:29:00.003-05:00

Hey Friends (:

Well apparently some of you weren't praying after my post on Sunday (kidding!) because Monday morning we picked Eve up out of her bed, laid her in our bed and with both hands she slid her cast RIGHT OFF of her leg! I gasped.. stared.. gasped.. oh great!

We took a look at her foot, which was right back in it's pre-surgery, pointed position. I tried to stretch it back like the doctor did the week before we left as he re-casted her foot, only to hear Eve scream and her foot to barely budge. So I called the doc, who said he could refer me to a doc in Florida (with no insurance) and instead John took Lyla on the boat while I searched for flights, booked flights, got new medical authorization forms for Evie's oxygen, got a new letter faxed to and from Evie's doc, took a few migraine pills, and ate all of the candy in my grandparents kitchen (:

So instead of flying home right now, as we should be, we flew home first thing yesterday morning and got to the Orthotics store at 12:30pm. The orthotic specialist really worked on bending her foot back to it's flexed position, and put her first brace on. Honestly, it was just as torturous as when he fitted her for the brace two weeks ago, probably worse since her tendon had a few days to tighten. We are supposed to take the brace off and re-tighten it several times a day in hopes that it will stretch back out and we won't need to re-cast or re-do surgery. She's in a lot of pain, and isn't sleeping much.

Above are a few pics of her "new shoe," note how much smaller it is than her cast! Also is a picture of her on the flight home enjoying some apple juice. She didn't seem to mind getting up at 4am to catch a flight! (:

Most importantly, I owe an enormously huge THANK YOU to my grandparents, who flew, housed, fed, and entertained us for 8 days giving us the most relaxing fun-filled break we've had since before I was pregnant with Evie. I don't think we even realized we needed a break until we got off the plane and took a deep breath of fresh salty air. We ate delicious meals outside, played in the sun, took much needed naps, and most importantly got to spend valuable time with Grandma Dellie and Papa Bob. I don't know many people who are as generous with the gifts God has given them than my grandparents are. We were blessed beyond words by their generosity, care, love for us, and for our kids. You guys are the BEST!!

Love you friends, Eve gets her other "new shoe" on Monday, hopefully it's a little easier to fit (:

Lindsey

God is in the small things...

2011-03-27T16:42:00.003-05:00

Hello from sunny Florida!

I need to be cautious about how indulgent I get about our weather down here... It was really hard for me to read other people's blogs about traveling when Evie's health was so unstable and we couldn't get more than 15 minutes away from Children's Hospital! I'll keep it short: hot, sunny, clear skies, ocean waves. That about sums it up!

We have had the most marvelous trip... it's almost ridiculous how amazingly well everything has gone so far. Like I said, God is in the small things, and he has definitely taken care of us this past week! I know some of you out there are praying for us, and I have felt surrounded by God's calming presence more than once... and with 2 kids under the age of four that isn't easy!

We decided to fly straight to Tampa and drive down to my grandparents house this year, since Tampa is a direct flight and I was a little nervous flying with battery powered oxygen. We had no disasters, no delay, no spills, no huge messes, barely any tears, and the girls were completely content the whole way! Besides the security guard drug-swabbing Evie's casts (who thinks of that!?) we went straight through security. Evie slept and Lyla narrated our flight to the amusement of everyone around us "Are we flying yet?" she would say, "is it bumpy like the ground or smooth like the sky?" I would ask her, then she would know if we were flying (:

After our flight we were driving down the coast with the Gulf of Mexico in clear sight and Lyla said "guys, I think maybe we should just stay here..." Good thinking Lyla!!! Yesterday we were driving in my grandpa's fancy car, and she said "mom, I really like your new car better than your old green one" ha ha (: She has good taste! It's funny how the mind of a kid works when you put them in a completely different setting (:

Evie is doing great. I know I constantly say that she is the most content child on the planet, but I don't think you understand it until you spend some time with her. My grandparents keep commenting on how happy she is, and they are right. Some people learn to enjoy life at such an early age, the rest of us should take note. The big things become little things when you face mountains like she has (: My one prayer request is that her right cast holds up. Her foot has scooted up about an inch inside her cast, which means her food isn't positioned correctly. The plaster of the knee and ankle have gone soft from her banging her feet on the ground and crawling, so let's just pray that her foot slides back down and stays there!

I was working out at a little gym this afternoon and starting talking with a gal there (yes, I am the annoying person at the gym who bothers everyone who wants to listen to their music and be left alone!) and of course Evie came up. We both teared up a little when she told me that her daughter's son had been mis-diagnosed in utero with Down Syndrome and we talked about how tough that is in a pregnancy. So I gave her my blog address and have been nearly in tears ever since... just considering God's grace in the fact that I even have a blog to continue to write 18 months after we thought Evie's story was nearly over.

Oh yes! and Brian is continuing to work on our story... it sounds like he has some big plans in the works. I am genuinely thankful for his hours of hard work and am praying that God blesses him in a big way. I am not going to elaborate until things are signed, sealed, and delivered, but I am thankful for him even if things fall through (: I always wonder what the article would be called from a "miracle" standpoint, a "medical" standpoint, a "hug your babies" standpoint, an "i love my kids" standpoint... good thing I'm not writing it! I think my story would be called "my life under construction: tears, prayers, laughter, doctors, blessings, life lessons and God's grace."... doesn't sound very professional does it!

Love you friends! Thanks for checking in! Here are a few pictures from my phone, I will download the rest from my camera when we get home.

Lyla swimming "all by my own self!"

the girls hanging out before some family came over for dinner

sand and sun!

ending on a good note (:

2011-03-19T12:14:00.002-05:00

Wow, this week was a week of ups and downs!

Last week was a good one, I substitute taught for my good friend in her middle school math class. Boy did it feel good to get back into the classroom for a day! It has been really hard to sub this year with all of Evie's appointments, but I need to try harder to fit it in (:

This past week my best friend from 7th grade came into town to spend some time with her family. It was SO great to catch up, take a long walk, and just see each other for a while. She is always so encouraging with Eve and all of the other things going on with us.

Eve got her new casts on Tuesday... I thought about blogging that night, but the only post title I could think of was "torture!" It wasn't our finest doctor's appointment... Starting with the sawing off of the old casts, then fitting Evie for braces which really hurt as they were continuing to stretch her feet backward, then putting the new casts back on with more stretching, holding and screaming. I don't think we've had a full hour of screaming like that in a while, but it's done, the new casts are doing their job, and are nicely painted (:

When we left the appointment I asked the doc how long Evie would have to wear her braces, and he said "6 weeks.... oh wait, probably a couple years." For all of you medical students out there, START with 5 years, then go to a couple. So my hopes of having Evie "device free" when she gets her oxygen off (someday) were crushed. But I am constantly reminding myself that Evie has already done better than anyone could have expected and a couple years could be 6 months, or it could be 5 years. Who knows. So the casts come off and braces go on April 4th.

Lastly, we are leaving for VACATION tomorrow!!!!!!! 10 days of fun in the sun, going to see my grandparents. The girls absolutely adore Grandma Dellie and Papa Bob, and I can't wait to spend some good quality time with them. So off to the store to pick up some vitamins and AirBourne to keep all the travel germs away! Traveling with Evie, casts, oxygen, and her meds will be very interesting, but we will get there eventually! (:

I will try to update while we are gone, and post some good pictures!

Love you friends, thanks for checking up on us (:

Job 5:9 "He performs wonders that cannot be fathomed, miracles that cannot be counted."

praising... waiting... and accountability

2011-03-08T23:22:00.004-06:00

Hi Friends!

Evie is adjusting remarkably well to having two casted legs! She is crawling, rolling, playing the drums on her casts, and making plaster rainbows on the walls: she rolls to the nearest wall and rubs her casts side to side... making beautiful white lines. She has endured enough that I just can't take away her joy of ruining our walls (: It should wash off. Unfortunately, she is now on her 3rd antibiotic, trying to get rid of this nasal congestion. They finally ordered a sinus x-ray yesterday to confirm that her sinuses were clogged, and they looked pretty nasty. We are hoping this 3rd try will do the job.

This has been a God filled week (JOY!) here are a few highlights...

Praising: We were driving to church the other morning listening to the radio when Chris Tomlin's song "I will follow" came on, and Lyla started singing softly "where you go i'll go....where you stay i'll stay.... when you move i'll move.... i will follow you." With eyes full of tears I was reminded that this little sassy 3 year old is soaking up Jesus here and there and I overflowed with joy.

Waiting: I am just in awe of how thankful I am that Evie's surgery was delayed and that she had the chance to learn to crawl. It is such a blessing that she is mobile, even with casts on. God knows what he's doing doesn't he? He stirs my heart with so many ideas and then says "pray. read my written word. and wait for the perfect time." I so badly needed this reminder. Next time I am mad about something being delayed I want you all to remind me of this very post! (:

Accountability: the Bible study I am doing this session is on the life of David, and this past week I was reading about accountability. When David wasn't sure about something, he asked for advice from others who could keep him accountable. I really wanted to get my heart in the right place before Bible study even started in January so I dropped my 3 most watched tv shows (that I am embarrassed to even post!). I was really convicted that I need to fill the remaining space in my brain with a good healthy dose of God's word. When I started praying about adoption and leading a Bible study, God brought 3 amazing women to mind, we'll just call them Carla, Mary, and Suzanne (: These women have dedicated their lives to honoring God with their time, resources, and healthy brain space. When I am tempted to watch the Bachelor (whoops I slipped!) I honestly think "What would ___ do?" I am so blessed to have women in my life who point me in the direction of God's everlasting love. They actually don't even know they are my people, but I soak up any time I get to spend with/email/chat with them.

Last but definitely NOT least, Brian came to Omaha last week and shot some great pics of Evie's casts (:

Love you friends! Thanks for loving us, and keeping Evie in your prayers.

we are stuck with sponge baths until these things come off...

soak up that clean baby smell

love my girls

post-surgery update

2011-02-28T22:40:00.003-06:00

Hi Friends!

Evie's "bilateral percutaneous tendon lengthening" went off without a hitch!!! We requested that anesthesia try a "laryngeal mask" before intubating her since intubation causes a lot of airway irritation, and it all went great. In summary: We arrived at 11:30, they took us back to pre-op around 12:15, took Evie back to the room around 1:05pm, and were completely finished around 1:50!! It's amazing how smoothly things go when we give God control isn't it!?
.
Evie was only upset for a short time in pre-op because she was starving, but the nurses said she was smiling and even giggling when they were giving her gas to put her to sleep before they put in her IV (: What a rockstar patient she is (: Here are some pics from my phone from the day:

in pre-op... mom! i'm starving!

home! still sleepy from anesthesia

just waking up from a 2 hour nap, checking out those new legs...

success! you can see how her feet are flexed instead of pointed!

I need to give a shout-out to my friend Amy, her daughter Lydia has a completely different "disease" than Eve, but similar treatments. It has been so great to bounce ideas off of and encourage each other... Lydia had this surgery months ago... and even went crawling after a brownie a few days ago! I think these girls are destined to be friends for life (:

pre-surgery laughs!

2011-02-27T20:57:00.002-06:00

i love this new video thing!!! (:

unprepared...

2011-02-27T20:08:00.002-06:00

Hi Friends (:

As I'm sure you know, Evie's surgery is scheduled to happen (hopefully for REAL this time!) tomorrow! I was pretty dissapointed with myself at how incredibly upset I got over the cancellation two weeks ago, so I did a little self reflection. Two weeks ago I had everything ready. My house was clean, kids were clean, outfits picked out, prayer spoken, attempt at a good nights sleep, enough time in the morning to pick up donuts for Lyla, etc. So obviously I DESERVED for the day to go the way I expected RIGHT!? Wrong! God has plans much bigger than ours, and our plans really don't matter compared to His!

SO how have we prepared for surgery tomorrow... Well our house is looking about normal, we're watching the Oscars, and I even took a day trip to Kansas City yesterday to spend the day with some high school girlfriends that I don't get to support often enough. Instead of going into the emotional "mommy-vault" where I try to control anything and everything so that I "feel" like I'm preparing for Evie's surgery, we enjoyed our past week, have continued praying, and we're going to trust God to take care of Eve.

Not only do I believe this is how God wants us to live, but we had an absolutely enjoyable past two weeks where Evie crawled, got 3 new teeth (including 2 molars!) and has had some time to heal up from the cold she developed. God is good, and I'm so thankful that he loves me even when I become an overly-controlling mom in a world where he already has things taken care of.

Love you friends! Surgery is in the early afternoon, and providing Evie does okay with anesthesia we hopefully will not have to stay overnight. Prayers for safety, pain control, and a successful surgery will be much appreciated (:

Evie CRAWLS!!!

2011-02-22T17:26:00.001-06:00

Hi Friends! One of you brilliant blog readers made the suggestion of enticing Evie to crawl via chocolate... well I cut up some small brownie pieces and that did the trick! Even caught it on video (: This is the first video I've ever uploaded so we'll see how it works (and it's from my phone so it may not be the best quality but I tried!) (:

Go EVE!!!

brains and body...

2011-02-20T20:37:00.003-06:00

Hi Friends (:

We saw the scan results from Evie's MRI on Thursday... and in the doctor's words, her brain looks beautiful! No pressure, no extra fluid, lots of healthy wrinkles, and her little bulge just happens to be the way her skull formed together after surgery #1. GREAT news! No repeat skull surgery in the near future (:

Evie made some huge physical progress this weekend. First, I put her in her crib to play. When I looked over she was on her knees, pulling herself up with her arms. She is FINALLY understanding what those legs are for! Later, while playing with her cousin Henry, she decided she wanted his binky SO BAD that she actually used her legs and arms to pull herself across the floor in a sort of clumsy Army crawl! She made it about 3 feet before she tired out, it was AMAZING... and she got the bink before he did (: Now I just need to find something she wants that bad again... she seems to have my competitive spirit, for the sake of Evie's crawling Henry better be ready for some more playdates!

The weird thing about these new experiences is they break my heart in good and bad ways. I'm sure every parent of a special needs kiddo has felt this way, but this is the first time I've felt it so intensely. Watching Evie try to crawl is so exciting and praiseworthy and celebratory. It's such a huge step for her. It's also really hard to watch her struggle SO HARD to do something that most kids do months earlier with much less effort. She and I watched kids her age run the hallways at church today, and she waved her arms in excitement just watching them explore. It was gut wrenching for me to see. It makes me wonder what she's mentally ready for that her body just can't do, and if I'm giving her the opportunities she needs to grow. It's a lot of pressure to wonder if I am doing enough.

When I posted about planning a few posts ago, I meant to write this verse - "Now listen, you who say, 'Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.' Why, you don't even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, 'If it is the Lord's will, we will live and do this or that." (James 4:13-15). This is a passage that used to bring me a LOT of anxiety. I thought failing to plan was planning to fail, so what did it mean if we weren't supposed to have plans?? I thought that this passage meant that God's plans were different than mine... What I have learned is that God's plans are BETTER than mine. Just under two years ago, I was planning a funeral, but God was planning a first birthday party. He knows how Evie will progress, and I can trust his will for her. It is already better than any doctor hoped in the beginning.

Love you friends (: Evie is still sick, but 'if it is the Lord's will she will have surgery a week from tomorrow.' We have a very low-key week so I will try to get some pictures up. Thanks for praying for us!

what a week (:

2011-02-16T22:56:00.002-06:00

Hey Friends (:

Well Evie got a bad case of congestion/coughing/gagging Monday night, so perhaps it was better that her surgery didn't go through. We went to the doc yesterday and she's on a new antibiotic to try to get her cleared up before surgery on the 28th. She's not sleeping well as she constantly chokes on her mucus, poor thing.

We are also going in tomorrow to have a rapid MRI done, followed by an appointment with her neurosurgeon. There has been concern about her brain pressure from her neurologist and myself. Lately she puts my hand on her head and wants me to rub it, and her soft spot is always a little concerning, so we're going to hopefully get it scanned. PRAY that she stays still for the scan, it can be tricky to keep her still.

Sorry for the short update, when Evie doesn't sleep nobody sleeps around here!

Love you friends, I'll let you know how the scan looks (:

the short or the long version...

2011-02-14T19:50:00.003-06:00

Surgery update...

The short version: surgery was cancelled, and is probably rescheduled for Feb 28th, two weeks from today.

The long version: We arrived for surgery this morning and Evie was hungry. We gave her a few bites of donut and a couple ounces of formula since the orders said she could eat and we didn't want to send her into surgery starving. The anesthesiologists asked when her last meal was and we told them one hour ago. Apparently we should have been notified that she couldn't eat 6 hours before the surgery, even though the orders were for local anesthetic. I guess they do it different at the med center than they do at Childrens, and these anesthesiologists wanted to be ready to intubate since Evie has a shaky history, which is very understandable. So we left, I cried most of the afternoon, and surgery is rescheduled.

I am disappointed. We have been waiting to do this surgery and scheduled it over a month ago. We have held Lyla and Evie out of activities trying to keep them healthy, John had his schedule moved around, we had Lyla taken care of for the day, and I have spent the last week+ praying and preparing myself emotionally. I know it's not a huge deal in the scheme of things, but it would have worked out so Evie would have her casts taken off the week before we went on vacation to see my grandparents, now they will be taken off when we get back. One of those little things that would have been nice.

Thanks for praying. I know there is a purpose in everything and I'm praying for the right emotions in this situation... I'm sure crying, frustration and being mad at myself for feeding Evie aren't the "right" ones.

Love you (:
Lindsey

15 hours...

2011-02-13T21:18:00.002-06:00

Hi Friends!

15 hours and they will be wheeling Eve into surgery. Everything is ready to go, I have our outfits laid out for the morning, and feel somewhat prepared to head to the hospital.

Our arrival time is 11:30am with surgery at 1. There are no "do not eat after such and such time" orders, which is very helpful! Evie will not be intubated, so we shouldn't need to be concerned about her breathing or sedation. I'm not exactly sure how they are going to keep her still with local anesthetic, but we will see.

I was beginning to get anxious tonight, and remembered where we were last Valentines day... Evie had RSV and was intubated at the Med Center with no certainty as to when she would be able to breathe on her own again. She has come so incredibly far, thus a "non emergency" surgery to help her possibly walk someday is a BLESSING!!! and I am honored to spend Valentines day praying for my little girl that I love with all of my heart while she gets her little feet worked on (: and Lyla gets to spend the day with her favorite Aunt Kirst and Nana! John and I will have a romantic lunch in the cafeteria or something special (:

Prayer requests: If there is sedation used that it won't interfere with Evie's breathing. That she won't be in pain during the surgery or following. That she won't panic when they take her away from us in pre-op, and that I won't panic either (: That everything will go smoothly and we will be HOME tomorrow night!!!

Love you friends, we are more than blessed to have all of you praying for us, and the weight of those prayers is deeply felt every day, especially days like tomorrow.

Linds, John, Ly, and Eve (:

PHOTOS!!!

2011-02-09T22:47:00.006-06:00

the computer's strike against uploading our photos has ended!!! Here are a few from the past few months:

Lyla's first gymnastics meet last weekend (:

Lyla's number one fan!
Papa Steveo and Evie at church

Nate, Ben, and Lyla at Sesame Street Live

mommy love

Grandma Dellie, Nana, and Evie at a wedding

Lyla and daddy kicking up their heelsand my children's favorite... bath time (:

saltines and chocolate milk...

2011-02-09T22:26:00.003-06:00

Hi Friends...

I was supposed to talk at our Bible Study leaders meeting yesterday morning about what God has been teaching me lately. I really felt God pushing me toward the topic of planning. I used to be a pretty scheduled person and wasn't overly thrilled when our plans would change. When Lyla was born I loosened up a little, and when Evie was born I apparently lost the brain capacity needed to make plans (: What God has taught me over the past year and a half, is that when our weeks and days are strictly planned, we always feel rushed, and miss so many opportunities to love people. God commands us to love Him with all of our hearts, and to love our neighbor as ourselves. By not having plans, I have learned to take time for others. To genuinely care for the people we run into at our routine places. To learn their names, things about their families, what they care about. To forego a much needed nap to spend time in God's word, or take a mental break and just "be still." My unplanned life is more flexible, less stressful, and full of joy in the small moments of caring for others.

The reason I bring this up is because I intentionally "planned" this week to be an easy week. Didn't make many appointments, figured we would keep Lyla out of any germ infested play areas, and get our laundry and cleaning caught up before Evie's surgery next Monday. Well that changed when Evie got a fever on Sunday. She slept quite a bit and felt generally lethargic. Monday I knew we needed to be on the lookout for seizures, and she had some jerky unusual movements during naptime. We gave her an extra dose of her meds, but around 11:30pm she had a long, 5+ minute seizure and we just couldn't get her to stop. With fear that she would stop breathing, we took a short ambulance ride to the hospital, and upon arrival she was our normal smiley Eve sitting eating saltines and chocolate milk. I tried to tell her if she wants crackers and milk she just needs to ask for it!!! No more scary stuff (:

It's so hard to know what's going on in that little body of hers, so we chose to err on the side of safety this time. We are going to increase her seizure meds until she is recovered from surgery, and keep all of those brain waves going the right direction. She had one funny number on her blood draw come back high (BUN) so we had a redraw today and are looking into what could cause that, but with Eve we just may never know.

Yesterday was recovery day, although I am still in a bit of a fog today. I DID make it to Bible study Tuesday morning, but NOT early enough to share what God has been teaching me (: So you all got to hear it! My plan for this week to be easy and smooth was definitely derailed and I've been a bit of a mess the past few days, but I think we're getting back on the right track.

I have tried uploading pics the past few days, but am still having difficulty, I will try again before I log off tonight. I am not liking this picture-drought we are in!

Love you friends, prayers for Evie to be healthy and STRONG for her surgery would be much appreciated!!! 5 more days to go (:

Lindsey

testify!!!

2011-02-05T21:21:00.002-06:00

Hi there friends!

Sorry I have only been posting weekly, I am trying to get to bed earlier... and well that cuts into my blogging time! Anyway, the title of this post is so appropriate to our lives lately, and it is my privilege to testify to the goodness of God!

A little story from a few weeks ago... John came into our room one night and said "Hey honey, is the ---- account in the bank our Adoption Fund?" and I said "yes" and he replied, "Do you know how much money is in it?" my honest guess was $1,500 and he said "no... almost $5000!" WHOA! SO after adding some Christmas money, our goal of saving $10,ooo this calendar year is over half way complete. PRAISE GOD! When I felt God leading me to a goal of $10,ooo I sort of figured if we didn't get even close that was God's way of saying that adoption may not be for us... but this is ovciously not the case! So we'll keep praying about it, adding a little to the pot here and there, and praise God for his provision!

Secondly this week went off without a hitch. Evie's favorite phlebotomist was working Wednesday, and he got all of her blood in one poke. We had some extra time, so we got her Friday x-rays done, and her EEG. Thursday we got the rest of her blood and urine done, so we didn't even have to go in on Friday! Evie was a rockstar!

Lastly, I was talking to Evie's clinical coordinator yesterday, and we were chatting about some other doctor's Evie has worked with. There was one particular doctor who was pretty insensitive the first time we met with him, and I think I figured out why. He is a bone doc, and the first time we met he basically told us we were dealing with bigger problems than why her bones weren't straight. I knew that, but I wanted his opinion on bones... he was a bone doc. I took it personally, I was 2 weeks postpartum, and in the hospital, so I justified my frustration! (: Regardless, he was talking to Evie's docs last week and said "When I first met that little girl I never thought we would be talking about the possibility of her being weight-bearing" (standing or walking). Basically, he was concerned about her overall health because there was quite a bit of thought at that time, that she wasn't going to make it. Apparently I have been oblivious to these ideas because that thought has never crossed my mind, but I would say there have been several times especially in the first year of her life that she survived against all odds. It has brought me to tears several times in the past few days, how unbelievably blessed we are to have such healing and hope for Evies future.

So thanks for loving us, and praying with us for Evie as she has grown up! We bought her 12 month clothes for the first time today... so now she is only 1 size behind her actual age (: That girl likes to eat!

Love you, Lindsey

say No to the Stress...

2011-01-31T23:24:00.003-06:00

Hi Friends (:

For those of you who don't watch TLC, my post title is a spoof of 'say Yes to the Dress' (: I try to tell John that when you have to explain a joke that means it's not funny.... maybe I should take my own advice!

Well it's blizzarding here in Nebraska, so that makes this post either more or less stressful depending on how you look at it. Either I add stress by attempting to make it to our appointments this week, or decrease stress by not going! (: Let me explain. I was looking through my calendar last week and realized that we had a week full of blood draws the week before Evie's surgery (Feb 14th). Thinking that Evie will need most of her blood to recover from surgery I moved her blood draws to this week. We also need an EEG to make sure nothing unusual is going on in that cute little brain of hers, so we stacked that on top of her blood draws, urine specimens and x-rays. The worst part is obviously the poking involved in taking that much blood, we will have to go early since she can't eat before her draws, and she panics during x-rays. Not real fun for anyone.

The biggest stressor of the moment is that we scheduled Evie's surgery for Feb 14th because she has been healthy for the past several months... but unfortunately she now has a pretty bad sinus infection that I think she picked up in the Emergency Room a few weeks ago. SO, somehow we need to keep her healthy although we will be at the hospital Wed, Thurs, Fri of this week, and Fri of next week (not to mention our 3 year old germ incubator who seems to pick up every illness goign through preschool or gymnastics). I wish I could say we will be in a contained area of healthy people... but we will be in the outpatient diagnostic center and the pediatric pulmonology office... mostly sick people.

So instead of stressing, I'm going to PRAY MY HEART OUT for the next two weeks and praise God for the great things he has already done. I'm also going to pray that you all and your babies stay healthy, I forgot how miserable it is to have a sick babe. I tried to beg John to sleep on the side of the bed next to Evie tonight, but considering he has to work at 7am and our whole day is cancelled due to the snow, I lost that one (:

Love you friends. I am going to attempt to find a solution to my picture uploading problem tomorrow!

overload...

2011-01-25T21:35:00.002-06:00

Hi Friends (:

Like I said we got a new camera for Christmas and have our pictures uploaded... but our computer is now on overload and it our internet is refusing to load the pics to our blog!

And the rest of us are on overload too... Evie had the pukes last night... I would have thought it was the flu but none of the rest of us have gotten it and judging by her slobbery kisses I should have it by now (: Needless to say we were up most of the night changing her bedding, and are ready for a good night's sleep.

I will try to solve our computer problem and get some new pics up tomorrow.
Thanks for checking in, you guys are the best.

she caught the bug...

2011-01-22T23:33:00.004-06:00

Hi Friends,

Well we thought we had gotten through the worst of the winter without Evie getting sick, however it sounds like she's finally coming down with some sort of cold. We thought that since Evie has had the RSV vaccine every 28 days maybe she could avoid sickness altogether, but the congestion started 2 nights ago, and is building. With her upcoming pulmonolgy appointment, this is not good. Home health had encouraged us to ask if we could take Evie off of oxygen during the day since she has been healthy for a few months, but if she has a cold it would seem foolish to even ask.

Tonight we sucked her nose out with the bulb syringe, something we haven't had to do in a long time. When we were done I tried to hug her, but she pushed herself away from me several times. I understand that she was just upset with us for sucking her nose out, but it hurt my heart a little. I hope she understands that we aren't trying to hurt her.

We have tentatively scheduled surgery for Evie's feet for Feb 14th! As you have seen in many photos of Evie's legs, her feet are pointed and somewhat turned in. The turning has a lot to do with the bending in her lower leg bones, but the pointing is because her Achilles tendon is too tight. It is my understanding that they will clip the tendon in a few places, alternating sides to make a z shape pattern. Then she will have casts for 3-4 weeks, followed by some sort of braces. Eve's physical therapist and I talked about possibly waiting longer, but I figure we may as well get it over with before she starts wanting to stand and take steps.

I also wanted to say a few things about my Holland post. When I wrote it, it was my intention to encourage moms who are facing the possibility of special needs children, with hope for the future of their family. I completely understand that every situation is different and wouldn't want anyone to think that the way I handle things is "right." For example I was talking to a friend last night about how blessed we are to have the promise of a healthy eternity for our kids, and how hard it would be to face life if we thought that "this was it." She mentioned that birth order could also affect how a family deals with being in "Holland" because 'we had Italy first (Lyla).' Which is absolutely true and I take that for granted sometimes. We had the freedom of life in Italy without the struggles one faces in Holland, before we ventured to where we are now.

So I apologize if I was insensitive in any way to the lives of others. I truly and sincerely love each one of you. In the words of Cathy Anthony who wrote Celebrating Holland - I'm home, "I have discovered that it doesn't matter where you land. What's more important is what you make of your journey"

Love you friends, please pray for Evie. Memories of RSV surface every time she gets congested like this, and I have to work really hard not to worry about her getting that sick again.

blue is NOT evie's best color...

2011-01-20T21:15:00.003-06:00

Hi Friends (:

We had quite the scare last night... I had the girls in the tub and I lifted Evie out to move her away from the faucet and put her back in... About two seconds later she went limp with a blue face and had quit breathing. I pulled her out of the tub, wrapped her up in a towel, cranked up her oxygen and screamed for John. It only took her 15-30 seconds for her to start shallow breaths and get back to pale (better than blue). A few minutes later she was more responsive, looking around and smiling a little.

We took her to the ER to get checked out, and of course she was happy-go-lucky Eve when we got there. They took her blood (not so happy at that point!) and a few of her numbers were out of whack, but we had them retested today and they are better. Not normal, but better.

So what happened? Well we are thinking it was a fluke deal... we cut her seizure meds in half, slowly weaning her down in the month of December, so it could have been a seizure. With her "seizure threshold" down she may have gotten warm-cold-warm when i lifted her out of the tub causing some sort of breathing episode. With her unique anatomy and physiology it's hard to know. Regardless I spent most of the day on the phone with her pediatrician, geneticist, neurologist, and clinical coordinator dotting our i's and crossing our t's to make sure everything is well documented and we're all on the same page.

I had enough guts to give her a bath tonight, and everything was fine. I guess she's just keeping me on my toes and making sure I remember how to keep cool and calm in the midst of crisis (: I do cry eventually, this time it hit me on the way home from the ER, and this morning. I told Eve this morning she was in "big trouble" for scaring us, and Lyla was thrilled to remind her all day that she was in big trouble. I guess Lyla's tired of being the only one in "big trouble" around here! (:

SO, she is GOOD now, God is GOOD all the time, and after a nap and a few migraine pills I am GOOD too.

Last night I was going to work on uploading my pics but obviously my plans were derailed a little (: I will get to them soon!

Love you friends, thanks for praying for us, caring about us, and checking in.
Lindsey

--- I almost forgot! Lyla was watching Monsters vs. Aliens tonight, and I had to laugh out loud when I heard this line. This is how I feel every time we wind up in the hospital (I, being Susan):

Gallaxar: You must be terrified. Waking up in a strange place, wearing strange clothing, being held captive by a strange being on a strange hovering device? Strange... isn't it?
Susan: Hardly, this isn't the first time.
Gallazhar: Wow, you really get around. To the extraction chamber!

my thoughts on Holland...

2011-01-18T23:11:00.003-06:00

Hi Friends (:

I have read the poem "Welcome to Holland" on many special needs websites, and have thought about posting my thoughts a few times but it never seemed quite appropriate. I got a comment from a mom this morning who is pregnant with a little boy who has a very similar diagnosis as we did with Evie. I wanted to share my thoughts with her, and figured this would be a good time to post my "thoughts on Holland." Here goes...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

----

There are many truths to this poem. Holland does require new guide books, a new language, and new friends. Holland is very special, and lovely. It is slower-paced (Praise the Lord for that), and there are times when it requires effort to catch your breath.

The lines I would omit would be the following: "And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." the pain of that will never, ever, ever go away... because the loss of that dream is a very very significant loss." When we were pregnant, we didn't think we would make it to Holland. We longed for Holland... and prayed for Holland. We just wanted time with Eve, the one God had given us. The one that was already conceived in my womb, perfectly made to live as our daughter.

There is a depth and understanding between people in "Holland", those close to them, and the health care workers that care for them. There's a camaraderie of hope and the desire for our kids to do great things against their stated prognosis. There are more celebrations in Holland because the milestones are smaller. More specific. Celebrated with not just immediate family, but with friends, siblings, parents, neighbors, church members, co-workers, extended family, doctors, therapists, and blog readers. There are big tears of pain, and bigger tears of joy. Don't be afraid of Holland, friends. It's the most beautiful place I've ever been.

The fact that this poem makes less of the life one can live in Holland couldn't be more untrue. I looooove Holland, deeply, with all of my heart. Would I spare Evie physical pain if I could? Absolutely. Anyone would. Would I trade Holland for Italy? Never in a million years..

So thank you for joining us in Holland. We are proud citizens without a single regret..... and we like it here.

sleepless in january...

2011-01-17T22:36:00.002-06:00

Hi Friends (:

Things are... well... a bit unusual at the Elsaesser house. To explain the title of this post, Lyla has started having either nightmares, or night terrors. We aren't really sure, but it started a few weeks ago, and she is usually up once or twice a night screaming, last night it was four times, plus once more to go potty. I feel just awful for her, I remember being scared when I was her age, and it's just no fun. Then Evie decided to join in since she's teething, which equals two crabby girls, and two tired parents!

Evie's IFSP went well last week. Cognitively she is progressing beautifully, and physically she is improving. We also got re-approved for Medicaid, PRAISE the Lord! I got copies of all of the recent doctor reports that went to the Medicaid office and took some time to read through them carefully. The reports are always so much more disturbing than the visits... for example when I talked to the pulmonologists nurse last week she just said that Evie had "some significant events of desaturation and needed to stay on oxygen." fair enough. The report said 'Evie desaturated 311 times with the lowest saturation of 62.' 311 times is a lot, and 62 is incredibly low, like blue lips low. I can't believe she didn't cry if her oxygen really got that low, those test results were shocking. I am looking forward to speaking with her pulmonologist at the appointment next week to see what he thinks about this, and why she did so poorly.

The next unusual event is happening tomorrow... John is taking Evie to her 6 month neurosurgery follow up. Although John is incredibly capable and very knowledgeable about Evie and her disease, I have never missed an appointment! Last week our first session of Women's Bible Study was cancelled due to a snow day, thus tomorrow is our first. It is a meeting I don't want to miss, and I can always call the neurosurgeons PA if there are questions I still would like answered. I'm sure the appointment will go fine, but I do have some big concerns about Evie's head and the more recent re-bulging of her soft spot, so hopefully they will thoroughly discuss it and come to a conclusion about why it is bulging.

Today we had Evie's CT scan for tomorrow's appointment, and I'll say that I am definitely out of practice when it comes to hospital visits. I guess you could say I am getting spoiled in a good way, yet it really made me feel bad for my friends who are still hospitalized frequently. After about a 15 minute wait in the waiting room, a 6 second scan, and a few more minutes of waiting for a disc, I was so exhausted from getting to the hospital with both girls, and getting them both to the scan area that we had to go share a brownie and soda in the cafeteria before we made the trek back out.

On the way to the hospital I heard the song "Your Love" by Brandon Heath and my eyes filled up with tears. I've been incredibly emotional lately (I'll blame that on the lack of sleep!) and this song set the pace for a good day. Although it was a bit exhausting, I really enjoyed the morning with my girls even if it included the hospital. I will post a few of the lyrics below.

Lastly, I realize I am a few posts deep with no pictures!!! We got a new camera for Christmas and I have some fabulous pics, but I haven't uploaded any yet. I promise to get some new ones soon, the girls are constantly changing so much I need to update.

Love you friends (: Prayers for sleep would be greatly appreciated

Your love, your love,
The only thing that matters is Your love
Your love, is all I have to give,
Your love is enough to light up the darkness
It's your love, your love
all I ever needed is your love

You're the hope in the morning
You're the light when the night is falling
You're the song when my heart is singing
It's Your love
You're the eyes to the blind man
You're the feet to the lame man walking
You're the sound of the people singing
It's Your love, your love.

not yet.

2011-01-10T15:24:00.002-06:00

Hi Friends (:

I got a call from the pulmonologist's office this morning, Evie had some "significant eposodes of desaturation" during her overnight test last week, so she needs to remain on oxygen. I was sitting in my garage giving my arm a rest from trying to start the snowblower when the phone rang... it was actually perfect timing. I was alone, watching the snow fall, and I was reminded that this is not the end of the world. One of the hard things about Evie's oxygen is I feel like it makes her look so unhealthy, when in reality she is getting better every day. So I just need to remember that, chin up, and love my girls.

Secondly, I start a new Women's Bible Study tomorrow and I am soooo unbelievably excited about it. God really has me fired up about this one... it's a study on David and lasts 10 weeks. I have the privalege of leading a discussion group, and can't wait to dig into God's word with some awesome women.

So what's next... we have Evie's IFSP (individual family service plan) with the OPS team on Wednesday, where we review her progress and our plan for the next 6 months, and we are still waiting to hear back from Medicaid. We see Dr. Puccioni (neurosurgeon) next week, and Dr. Sammut (pulmonologist) the following. I am going to ask if it is okay for us to take Evie off oxygen for a few hours during Bible study while Eve is in the nursery so we can put her in the "crawler" room and not have to worry about crawling babies pulling on her tube.

It is STILL snowing here, I think we cleared about 2 inches last night, and at least enough 6 this morning, and we'll be out again tonight if it keeps up! It's beautiful and a nice break from being out and about (:

Love you friends (:

seventeen...

2011-01-06T14:12:00.002-06:00

pounds, 2 ounces! YES! 17 - 2! Evie took another big leap up on the growth chart yesterday at Dr. Pats office. She is still following her own growth curve a good deal below the 0% line, but Dr. Pat and I are okay with that, as long as she is growing (:

He said she looks the best he has ever seen her. (YAY!) He said "remember last winter when she was like" *insert funny impression of a baby breathing with pig like sounds and a scrunched up face*, "I can't even hear her breathe!" ALL Good things.

Next we hit the Eye doctors office, who reported no signs of pressure, and no need for glasses. See ya in another 6 months!

Lastly, BIG PRAYER REQUEST: I have spent the last couple of days in a frenzy, trying to get Evie's medical records together because she has been on a Medicaid Aged and Disabled waiver for the past year, and she may not qualify this year. Basically, since she is "disabled," she qualifies for respite care, and very importantly she receives Medicaid insurance to be used secondary to our primary insurance. What does that mean? Basically, Medicaid typically pays off a substantial portion of whatever our insurance doesn't pay of Evie's bills. I currently have a nearly full file box of Evie's bills from last year, and can't imagine what it would have cost us out of pocket to pay those bills without Medicaid. SO I have sent all of our most recent medical records, with a detailed account of Evie's current medications, treatments, and the 8 specialists that she sees every 3-6 months with hopes that they will still consider Evie for the waiver. If you will pray with me that we can get this PASSED by the end of January, we really need it.

I'm not really sure how Evie's trend oximetry went last night. For the first hour she was struggling to stay above 90%, so I went downstairs and tried not to get upset... went back upstairs and she was 85%. I thought we were going to have to hook her back up to O2, but before I did that I hit my knees and prayed that God would strengthen Evie's lungs and help her pull through this test improved, and stay improved. After that she stayed above 90% the rest of the night (: HOW MANY TIMES do I have to learn the lesson of asking God FIRST before worrying? Before texting my family about how bummed out I am? He provides! Immediately sometimes! Anyway, I will post the results as soon as we hear anything (:

Lastly... I actually got to go to a doctor this morning for my dizziness! It felt incredibly odd handing over MY insurance information... I almost said 9/19/09 when they asked for my birthday. An ENT nurse flung my head in one direction, then back in the other direction to correct my inner ear issue that I have had for about a month. I have to wear a neck brace for the next 24 hours (not a good look for me...) and I should be healed by tomorrow. It would be great to wake up tomorrow and not feel seasick! (:

Thanks for praying for us friends! I wish I could videotape these appointments that we have been having, so you could feel the doctor's excitement over our little Eve (: Amazing healing, amazing kid, amazing God!
Amen brothers and sisters!

orthopedic appt...

2011-01-04T23:34:00.003-06:00

Hi Friends!

Quick update about our Monday appointment: The Orthopedic Surgeon walked into our patient room and gasped, "WOW! That Lutz sure knows what he's doing!" Anyone who knows our amazing, caring, wonderful geneticist Dr. Lutz would agree, but wow it felt good to have someone stop in their tracks at Evie's improvement. Our appointment went well, one highlight being x-rays. This was actually a "low"light for Evie since she absolutely hates x-rays, but the results were exciting. When we compared Evie's x-rays from September until now, it honestly looked like a different child. In September her upper leg bones were bowed about 30 degrees and were short with very broad ends. Her bones this Monday looked longer, straighter, and all around stronger. Don't mistake "stronger" for "strong"... her bones are still very undermineralized and weak, but she is making unbelievable progress. Thanks for praying! The doc also agreed that we can do a minor surgery on Evie when we feel the time is right, to lengthen the tendon in the back of her foot so she will be able to flex her foot (: Exciting!

Secondly, I scheduled Evie's repeat overnight trend oximetry for tomorrow night. They will come around 7pm, hook her up to the monitors, and monitor her until Thursday morning. I'm guessing we will know the results by Friday, or early next week. Pretty exciting to think about taking Evie's oxygen off. I had a great conversation with my second cousin's husband (I'm being serious!) at my other second cousins wedding last weekend, and he asked why I wanted Evie off O2 the most. I can see why people would think it would be carrying around my jetpack (her tank) or the 24/7 rhythmic whirring of her concentrator at our house or people tripping on her tube, but honestly I just miss her face... so. badly. I've said it before, but just to see her little smile light up with no plastic drawing a line from ear to ear, ugh, I just miss it. When I look back at where we were last year at this time, I remember that Evie has healed and improved incredibly so I may just need to be patient, but wow do I miss her face. We had less than 4 months before she had oxygen needs, and I'm ready to be oxygenless again.

So you can pray for me, I have my hopes up way too high for this oximetry tomorrow. I will be fine either way, and there's no question that we always do what is in Evie's best interest, but we are so so so so so very close.

Thanks for loving us, hopefully I'll be back soon with good news.
Love you friends!

introducing.... 2011!

2011-01-02T22:03:00.004-06:00

Hi Friends!

Before I get to the start of 2011... I wanted to note a few of Evie's accomplishments in the past few days, the remaining days of 2010:

1. She got her 5th TOOTH! WOO HOO! Kids with hypophosphatasia have teeth problems, specifically with their teeth falling out, but as of now Evie has 5 big bright ones that seems to be sitting in there pretty good!

2. She is starting to put WEIGHT on her legs!!! This is a huge deal. Usually babies start putting weight on their legs as early as 3 months... well, Evie never has. Partly because her bones are bent and short, and also because she has severe Rickets.... so her joints just plain hurt. Maybe also because she spent so much time being "sick" the first year. Regardless... this past week Evie has started to play in a new jumper, and has also been putting some weight down when we hold her on our laps. BIG HORRAY!

3. Here is a pic of Evie's improvment in her fine motor skills:
AMAZING!

4. Evie is soooooooooo close to getting off Oxygen. I noticed that when I took her O2 off to admire her face she doesn't change color like she used to, so I put her on her monitor to check, and she is sitting easily in the low to mid 90s. AWESOME!

---
After two weeks of no preschool... no gymnastics... no appointments... and really no schedule at all, we are hitting 2011 with a packed week. I am actually really looking forward to it, we have some good things scheduled! Here is the rundown:

1. We see the orthopedic surgeon. Since Evie is putting weight on her legs, we are going to meet with him about straightening out her feet. As you can see from the pic, her feet curve in and don't flex much. This is partly from the bent bones in her lower legs, but also because the tendons in the back of her feet are tight. We will talk to the doc about what we can do about it.

2. We see Evie's eye doc. I have been concerned about Evie's soft spot possibly bulging a little more, and the eye doc can tell us if there is pressure behind her eyes (brain pressure).

3. We see the pediatrician. It's kind of weird to LOVE going to a doctor, but Dr. Pat is someone we truly look forward to seeing. He has been Evie's primary doc since day 1, and seen her through every single up and down. I can't wait to take her in to show off her improvement. Eating, weight gain, growth, teeth, from my perspective it's all been good the past 3 months since we saw him! (:

4. I'm going to call Evie's pulmonologist to see if we can do another overnight "trend oximetry" a fancy name for a test that decides if we can take Evie off oxygen! From how well things have been going I would be really surprised if she didn't pass. (:

---
So we enter into 2011. I have never really thought about "resolutions" as new years approach, but this year I feel like God has really been laying some things heavy on my heart. I'm actually a little intimidated about sharing these but sharing them will only hold me more accountable!

1. Love God more. The sermon this morning at church was about "loving God" and in all actuality that is kind of a loaded phrase. How do we love God... by telling him we love him? Saying we love him? The point that I thought was the most impactful for me was "We show our love for God by our commitment to doing what is right." When we love others, we are loving God. When we tell the truth, we are loving God. When we are humble, we are loving God. When we study God's word, we are loving God. What a good reminder starting a new year!

2. Save $10,000. Okay, for obvious reasons, this is the goal I was hesitant to share mostly because it's measurable and that's a lot of money! But if there is one thing I have learned this year it's that when God has something in mind for your life, he will provide! I'll elaborate. The past few years God has laid adoption on my heart. It started with gentle whispers, but in the past year or so it has become a deep desire. We are still considering the option of biological children, so adopting may be a few years down the road, but international adoption ranges from $25,000 - $60,000+ so it seems appropriate to start saving now. Why $10,000? I'm actually not sure. I don't even remember the exact moment I thought that was a good goal, but I again think it's God's leading. We are still in the "praying" phase of the adoption process, and know God may close that door, but there's my goal.

3. Pray, pray, pray. Prayer is powerful! and God is so good. And where in the heck is $10,000 going to come from!? (: I know I haven't said this in a while, but please let me know if I can pray for you. I absolutely love praying, because I know beyond a doubt that God answers, and he loves us.

Thanks for loving us and letting me share our lives with you, friends! I am truly looking forward to 2011 and the wonderful things God has in store.

Lindsey

reflections on good lessons...

2010-12-28T23:51:00.002-06:00

Hi Friends!

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

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

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

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

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

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

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

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

Love you friends. Thanks for loving us.

Merry Christmas!

2010-12-27T22:41:00.004-06:00

Merry Christmas from the Elsaessers! Update coming soon (:

Love you!!!

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

Oxygen Anniversary & Merry Christmas!

2010-12-20T23:00:00.003-06:00

Hi Friends (:

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

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

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

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

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

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

Love you friends!

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

2010-12-11T21:50:00.006-06:00

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

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

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

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

really pretty scene around Santa

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

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

say "bribery!"

"Go Mommy and Lyla!"

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

strategizing...

placing...

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

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

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

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

quick update!

2010-12-05T22:57:00.003-06:00

hi friends!

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

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

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

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

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

thankful...

2010-11-29T23:00:00.002-06:00

Hi Friends!

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

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

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

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

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

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

I am thankful for YOU! Love you friends (:

where have we been!?

2010-11-23T11:33:00.007-06:00

Hi Friends!

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

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

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

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

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

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

Lindsey

why it's a big deal...

2010-11-13T20:04:00.005-06:00

Hi Friends!

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

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

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

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

Lindsey

downs and UPs.

2010-11-09T18:50:00.003-06:00

Hi Friends...

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

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

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

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

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

no news is...

2010-11-07T21:51:00.007-06:00

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

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

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

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

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

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

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

our little penguin

our little shark

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

... trend oximetry happening now!

2010-11-02T23:17:00.002-05:00

Hi Friends (:

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

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

one down, one to go!

2010-10-29T23:28:00.002-05:00

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

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

pulmonology update...

2010-10-28T11:16:00.003-05:00

Hi Friends (:

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

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

Love you, and thanks for praying!