little answered prayers running around...

Hey Friends!

Well Evie has reached her next milestone... She gets to go to the "playroom" with the other kids at Sunday School and can play in the "big kid side" of the gym child center. She can finally walk fast and steady enough that we feel like she can play safely with bigger kids (:

I am going to go to the Sunday school playroom with her for a while, to make sure she doesn't get trampled. The past two weeks Evie has played with a little girl named Hope. When John and I were first considering adoption/foster parenting Hope's parents came over to tell us about their journey with international adoption. That week they had gotten Hope's picture from the agency. They had finally been matched with their daughter. Unfortunately they waited over a year to bring her home after complications, it was a heart wrenching roller coaster of a waiting game. There were times they didn't know if Hope would ever come home.

Hope has been showered in prayer just as Evie has been the past 3+ years. It was so fun to see these two little girls, with their big sparkley eyes running around at our home church. God conquered mountains with his LOVE, goodness and promises to carry them through. I wish I could see how many prayers God has heard for both of them, and how many lives He has touched watching them grow! It is such a blessing to see Hope's family grow in their love for Jesus and kids all over the world through their adoption process.

This hit me during a week when I was questioning where God will take our fostering process, especially as I fall more in love with the little girl we have in our home. It was encouraging to see Hope and Evie and remember that God has a good plan, he never changes, and he knows what the next year, 5 years, and 50 years hold for us. Whether that means our foster daughter will stay here with us, or if he has other plans for her. He is good. I will think about Hope and Evie running around smiling when I get discouraged (:

I hope you are all having a blessed, God-filled holiday season! I will be back soon with holiday pics (:

Love you all, thanks for checking in on us (:
Lindsey

We did it!!

Hi Friends!!

 

We had a wonderful long weekend in New Orleans. It was surreal almost, after not traveling much for the first few years while Evie was sick. To be able to fly with no oxygen and travel without monitors was wildly normal (: We stayed pretty close to the hotel with our limited knowledge of New Orleans, but as long as the girls got to ride the trolley at least once a day they were satisfied.

 

The conference was amazing and really fun to be a part of. It was fun to walk the exhibition hall and see all of the latest pediatric innovations. One of my favorites was my free sample of "lice shield", you can never be too careful!! (: I had "faculty" on my name tag since I was speaking, so when I had offers to take samples back to my "patients" I got to explain that I was actually there as a mother and share a little bit of Evie everywhere I went. It's hard not to have a heart full of gratitude with such a glimmer of sunshine to share wherever I go!

 

Monday afternoon was my presentation. First in the program was a panel of medical geniuses; pediatricians with jobs in pharmaceuticals and research... a tough act to follow!! I was second, and shared Evie's story with a PowerPoint full of photos starting with her first hospitalization and ending with her walking on her 3rd birthday. Evie's geneticist followed with the medical/physician view of Evie's story. When we finished presenting, John, Lyla, and Evie came up with Dr. Lutz and I and we had a short Question and Answer. It was fun to hold the girls and answer questions from doctors who work on clinical trials, and had really good questions for parents. It was validating to both us and them as Evie is a beautiful example of the combined efforts of research, parental love, and God's provision.

 

What a journey we have been on. It is very emotional to retell Evie's first few years. When her disease was still life-threatening, every day had a tinge of fear. On the same note, I miss the days when I was on Heaven's doorstep every hour (sometimes more) asking for help. Begging for wisdom and discernment as we went through the whirlwind beginning of Evie's treatment. These past few years I have spent more time with my precious Savior than probably the previous 25 years combined. It is a joy and an honor to have a God who listens, responds, and loves me dearly. 

 

Here are some pics from our trip:

 

Evie getting her face painted (:

 Lyla holding a baby gator!

 Evie wasn't really into holding gators...

 kisses on the trolley after our presentation

the star of the show (:

BIG weekend!!

Hey Friends!!

After Evie's story was published in Spirit magazine, I got an email from a pediatrician in the pharmaceutical industry talking about Evie's story and asking if I had done any advocacy for her. At the time we were still recooperating from two years of hospital stays and doctors visits and I wasn't really sure where I would even start; then this past spring he asked if I would be willing to speak at the American Acaedemy of Pediatrics conference for his section, Advances in Therapeutics and Technology. Well, YEAH!!! Sign me up!

SO we are headed to New Orleans tomorrow, and Evie's geneticist and I are presenting "The Importance of Clinical Trials from a Parent's Perspective" on Monday!!!!! I couldn't be more excited to share Evie's story with pediatricians, researchers, people in the pharmaceutical industry, the FDA, etc. What an enormous honor for us to be included, and I am prayerful that Evie's story will encourage pediatricians and pharmaceutical companies to work together for the health of other kids. The research that has gone into Evie's medicine and treatment brings me to tears as it has sustained her life. I hope that I can show a glimmer of the gratitude that I feel in my heart as we have been given the gift of life by researchers who may never meet Evie, or other kids on the trial, in person.

Prayers are hugely appreciated as we travel with Lyla and Evie to New Orleans, make our way around a new place and enjoy some beautiful weather!! If my weather channel app is correct we are looking at 82 degrees and sunshine all weekend (: Sounds like a little piece of Heaven!

God is so good. My biggest prayer is that God's love and unchanging awesomeness will shine through our family as we share our experience, meet new people, and reflect on the past three years. That God will bless us, so that we can be a blessing to others.

Love you friends!! Can't wait to tell you how things went.
Lindsey

Photos!!

Evie's family birthday lunch!!!

 big girl at the zoo (:

 party at the nail salon!!

Evie and her buddy at the ice cream shop

Evie's new brace

THREE years of blessings...

Happy 3rd Birthday Evie Jayne!! (:

How do you put into words three years of God's ourpouring of love and hope! We are thriled to have shared the past three years with both of our girls, and watch them grow into amazing kids!!

Evie has had an EXCITING birthday month. Excitement here in the Elsaesser home can be good and bad. We'll start with the good. Evie had an amazing birthday week, filled with family lunch, the zoo, and a birthday party at the nail salon with a girlfriend from school (: Her walking is getting amazing!! Here is a video from the zoo:



Unfortunately Friday night after her birthday party she fell in our basement and was in a lot of pain. We went to the ER and they thought she may have just bruised it but we saw her Orthopedic Surgeon on Monday who confirmed that she has a fracture. He sent us over to the orthotics company that makes her AFO braces and they made her a fancy HKAFO (hip knee ankle foot orthotic) so she can still move around and keep exercising her leg. After a pretty miserable weekend it was great to have a solution that would help her get around. She was back to school Thursday and back to music class today.

So we have a new brace for the next three weeks before her next x-ray. Hopefully things will heal well and the brace will keep the fracture from getting worse. We feel super blessed to live in a city with so many pediatric specialists (:

I can't get my photos to upload, so Big Girl Birthday Photos will be coming soon.

Here's to many more years with our sweet Evie!!

Love you friends (:

Warning:

This post may cause tears and uncontrolled shouts of "Hallelujah!"

Hi Friends (:
After about a month of working on her skills...

EVIE IS WALKING!!!

There is nothing better for me right now than watching Evie take new strides! When Evie's physical therapist was wrapping up a few days before school started she took her first few independent steps, now she is walking independently across the room. She still crawls at times but is more consistently standing up to walk. It's slow and steady and she still uses her walker for long distances (and when she wants to go FAST - as she puts it).
I can't express in words how it feels for me to see Evie walk. Waiting for her to walk these past few years has humbled me and broken my heart (in a good way). It has caused me to stop hoping for the next thing and be content in the present.

I AM SO PROUD of our sweet girl and her determination. When our computer decides to cooperate I will post pictures of her FIRST day of swimming lessons yesterday.

and a big THANK YOU to Suzie from the park... who couldn't wait to meet Evie as she has been following our blog since the beginning. It was a good reminder for me that I need to get on here more often and share our JOY in the craziness of life!

and... we have another new family member! Our first foster placement went home after two months, and four days later we took our second placement. We are back to same-sex children and enjoying a bit of a slower pace (i have a new appreciation for mothers of boys!!!)

LOVE YOU FRIENDS! (:

Evie's life verse (capitals added by myself):

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.

It's the end of the world as we knew it!

Hi Friends...

It's official, we have joined the scores of people waking up early and driving their kids to Elementary School!  No more sleeping in until afternoon preschool. I'll be honest, I think I am more tired than the kids!

Lyla started Kindergarten this past Tuesday. I had a few weeks of intense prayer over her teacher and classmates and she is off to a good start. I am praising God that she likes it so much! She was very apprehensive about it this summer which made for a very apprehensive Mama, but she (and I) have survived our first week.

Evie on the other hand can't wait for me to get her walker out of the car so she can run inside and play with her friends. She started school on Tuesday morning with the intention of her going two days a week, Tuesday and Thursday. I took Lyla to school on Wednesday morning and while pulling back into the driveway heard a little voice from the back seat "No mommy! Evie's school! Go Evie's school!!" It was an intense negotiation but I got her inside the house. Many tears were shed. A few minutes later she was sitting on the living room floor, put her backpack back on and said nicely, "Evie's school please mommy? Please?" followed by big round hopeful eyes. It was her last ditch effort to see if I would take her to school if she asked nicely (: Needless to say we are going to try three days next week (: She uses her walker the whole time and can finally take some independent steps. I am really proud of her.

Lastly, and least importantly... mom. I did so good the first day, no tears, it was really fun to see the girls start a new chapter. It wasn't until last night that I finally had to cry out the fact that I just really miss Lyla during the day when she's gone. The three hours that Evie goes to school are do-able, but the 8 to 3 thing is really hard for me.

I'm praising God for the giant leaps both girls made this, and praying for restful weekend days, or "family days" as Lyla calls them (:

Love you friends!

love this girl.

Evie had a big day today!! During her PT session she put on some of Lyla's old Christmas shoes that squeaked... this must have been what she needed as motivation to walk with just one cane! Later we found some similar shoes in her size and shot some more video (: Here she is!!

We are back to a family of four, and after being gone two weekends in a row we are looking forward to some good old family down time.

Thanks for checking in!

Love you guys, Lindsey

It's all relative (:

big days!!

Evie had her first day of preschool yesterday!! This is her "transition group" for younger kids who will be entering preschool in the fall. She loved it!! 

She had to find her purple "Evie" fish...

take it into class...

and put it on the wall.

Here she is afterward, walking her proud self to the car (: She is amazing!

Last month, Lyla graduated from preschool...

turned -

had a birthday bash with her preschool friends...

and celebrated with family...

at Lyla and Papa Steveos annual birthday party (:

 Love you friends!

We're okay! and we're a family of 5 (:

Hi Friends! Or should I say long lost Friends?

I sincerely apologize for taking so long to update my blog, about a week ago people started asking me to update... now they are just plain telling me I have to. I agree, it's been way too long.

So where were we... During my last post I was talking about the big decisions we have for fall. Those decisions have been made and we are pretty excited about it. Evie is starting "transition group" for kids entering preschool in the fall!!! PRESCHOOL!? Yes. We decided to send her 2 days a week instead of the usual 4 to get her introduced to preschool, get her some extra time with a speech therapist and social time with other kids. Evie may be the only two year old who doesn't need help socializing, we were out to eat the other day and a little girl shouted "Hey mom! That's my friend Evie from the gym!" It was pretty darn cute.

Lyla will be going to full day Kindergarten in the fall. We have been having a really hard time deciding, but I think we have decided she's ready. Lyla loves structure, activity, routine, and playtime so we are praying that full day kindergarten is the right fit. She has a pretty soft heart so hopefully we can tackle the "hurt feelings" as they come. Lyla turned 5 on May 19th. I think her 5th birthday has been the first that was a little hard for me. It's hard for me to imagine that we have a "school aged" child. She has promised that she will still hug me when she's 13 and wants to live at my house forever, so I'm just going to have to hold her to it (:

Lyla's 5th birthday questionnaire:
What do you want to be when you grow up?: nothing. ("what do you mean nothing?") nothing, like you mom. (ha!)
What is you favorite thing to do?: play, color, and play games.
What's your favorite color?: pink
What's your favorite thing to eat?: breakfast and golden grahams.
What's you favorite TV show?: PBSkids.org
What's the best thing in the world?: movies and My Little Pony
Best present?: Twilight Sparkle (pony)
If you could be an animal what would you be?: a flying squirrel

And to address my blog title, I'm most certainly NOT pregnant for those of you who were wondering! We took our first foster placement two and a half weeks ago, and so far it has been great. The first week was a tiring transition but I think we're definitely getting the hang of things. For the sake of confidentiality let's just say we have a new little person, between the ages of our girls, who prefers trains to barbies. It's been an adventure! I wish I could write more about what's been going on, God has shown up around every corner and it's been amazing to watch Him grow in our family.

My next mission is posting photos! Our computer is on the verge of death and sounds like an airplane taking off every time we turn it on, so hopefully we will be upgrading and blogging will be easier and more frequent. Thank you for being patient with me, Three kids is a lot more than two!!

Love you friends, promise to be back soon.

big decisions...

Hey Friends (:

People have started calling, so I guess it's time to update you all. We are doing good over here, getting ready for summer and everything all seems to be changing all at once.

Lyla will be finishing up her last month and a half of preschool soon. A few weeks ago I was losing sleep and having chest pains over where to send her to kindergarten. There is a great Christian school nearby, a great public school, and the homeschooling option. After weeks of prayer and talking with Lyla about it, she is dying to go to our neighborhood school. She loved kindergarten roundup and knows a few kids from the neighborhood who will be headed there with her. Her main reason for needing to go to full-day school is "I want to eat lunch at school." It's still a big tug on my heart but I think this is God's plan... for next year anyway (:

I took Evie to Lyla's school for "sibling day" and she had an absolute blast. After talking to her PT and services coordinator she may be eligible for "preschool" at another public school here in our district after her 3rd birthday. It had never occurred to me to send Eve to school until she was 4... why would she need three years of preschool? Well after sibling day we decided to take Eve over to the school to check it out. She walked in her walker right up to the circle where story time was happening and completely forgot John and I were there. Right now Evie gets speech therapy, PT, and OT in our home about once a week. Evie's walking and speech improve drastically every time we learn a new skill. If she went to school she would go four, half-days a week with a speech therapist present, and could receive all of her services at school. On paper it makes sense, we just need to pray big time about what is best for her and our family.

The thought of sending both of our girls to school in the fall makes me nauseous and teary eyed. Preschool is not a done deal, but Lyla has her mind set on kindergarten. At least with Evie home I will have a shoulder to cry on until I get used to it (:

We also switched to a different foster agency in Omaha. We have been waiting since last August for a placement of a child but haven't had success with the agency we are with, so we decided to try something new. It's exciting and scary at the same time. Big prayers to see where this journey takes us. We are also pursuing infant adoption through the same organization, although this process takes a lot longer and we will probably be waiting on that for a while.

The girls have decided to form the "best buddies club" and now sleep in the same room (: While struggling to get Evie to sleep in her bed about a week ago I asked if she wanted to sleep in Lyla's room (as a desperate attempt to get a single good night sleep without her in our room). She was totally excited and for the next two hours Lyla gave her the run-down... "this is a slumber party. I'm the big sister, that's why I sleep on the top bunk. If you need anything, you ask ME. You don't ask mom and dad, because that is why this is a slumber party." repeat... repeat... repeat... The late night conversations and giggling are slowly getting better, and Eve has slept in Lyla's room for over a week. I offered to let her sleep in our room last night because she has a cold, and she screamed until I put her back on Lyla's bottom bunk. She apparently likes it there (:

Lyla loves being the big sister, and it's really fun to watch the girls grow closer together. It's fun to have them in the same room, but also causes me to think... Switch foster agencies and have an empty bedroom in nearly the same week? What's going on here... (:

Evie is doing great with her walker... she wants to take it EVERYWHERE! It's so great to see her becoming more independent. I love when I open the van door and she says "walk walk walk" because she wants to take her walker with us. She is at such a fun age, I'm really looking forward to spending the summer with both girls.

On the health front, after Evie's seizures in January her pulmonologist (lung doc) suggested we see a cardiologist (heart doc). We did that last week and all of the tests came back fine, Praise God for that. There is still some apprehension about whether or not Eve can hear correctly, so we see the school audiologist tomorrow. It will be interesting to get his perspective. I know she can hear me, I just don't know exactly what things sound like since her speech is off, for example she could hear like she's underwater, people could sound like robots, who knows. Hopefully we'll have a better answer tomorrow.

I took Evie in for a weight check last week because I was afraid she was losing weight, and she had actually gained a pound, she's back in the 1% of weight. I am really proud of her. Lyla has decided that she should eat like an adult and sleep 12 hours a night, and has grown an INCH. Her tight little pants are now loose and too short (:

Easter was incredible this year. When we turned the calendar to April, Lyla gasped "Oh no, Jesus is going to die soon." She pays very good attention to things and it was fun to share the joy of Easter with her and our families, because He Rose!

I apologize for not blogging sooner, with the nicer weather I spend most of the day chasing the girls around outside, or running from one activity to the next carrying Eve, our bag, her walker, and making sure Lyla doesn't run across any parking lots. I haven't been this tired in a while.

Love you friends, I will update soon (:

FREEDOM!

Sorry it's been so long since i've posted... I've been chasing Evie around!! She got a new walker a few weeks ago that we take EVERYWHERE... and today her PT brought her some new canes! We are still getting the hang of them (:

She has managed to stay well the past few weeks and is just doing totally awesome.

Love you friends, thanks for checking in!!

HPP (and Evie!) hit the news

Hey Friends!

This week is a big week for Evie's drug treatment... the results were published in the New England Journal of Medicine today. It is so wonderful how well the kids are doing who are receiving the medicine. As a result I did a few interviews that have been published on line. I will link them here for you to read in addition to a few other articles about the treatment!

http://www.reuters.com/article/2012/03/07/us-alexion-hypophosphatasia-idUSTRE82621F20120307

http://www.myhealthnewsdaily.com/2322-rare-bone-disorder-drug-hypophosphatasia.html

http://www.foxnews.com/health/2012/03/08/kids-with-rare-deadly-bone-disorder-gain-hope-from-new-therapy/

http://news.yahoo.com/experimental-drug-offers-hope-rare-bone-disease-study-220208113.html;_ylt=AuUBt_PtaySS3dwyz5kCaNePscB_;_ylu=X3oDMTNna3NwYWJtBG1pdAMEcGtnA2VjODMyMTQ1LTdhYmYtMzg3Yi1iYjZmLTI5ZGQ0NDYzZjQzNwRwb3MDOARzZWMDbG5fRGlzZWFzZXNfZ2FsBHZlcgMwOGFhOGUyYy02OGRhLTExZTEtYmZiZS03MDA5ZTNmMGE0MDc-;_ylv=3

http://www.livescience.com/18916-rare-bone-disorder-drug-hypophosphatasia.html

http://www.doctorslounge.com/index.php/news/pb/27339

Thanks for your prayers over the past 3 years, it has been wonderful to watch God work in Evie's life. I am in awe of his goodness.

Lindsey

Happy Rare Disease Day!

Hi Friends!

We found out a few weeks ago that International Rare Disease Day was Feb 29th this year, so we ordered our shirts and got ready! Here are a few pics from today of us sporting our shirts to help raise awareness of hypophosphatasia (hpp), talk about how it's affected our lives, and the importance of people reaching out so they don't feel isolated.

It was so fun to look at all of the pictures on facebook of people Evie's age and older, to see how she might progress as she grows. We are blessed to have an active community with so much loving support (:

Hope you all had a blessed day as well!

Love, the Elsaessers (:

She sleeps!!

First of all, Evie finally feels better... Praise God and thank you for your prayers!!!

That being said, we decided she could go back to sleeping in her own room last night. We all thought that was a great idea except Eve of course ): so we let her cry it out for a while and after a few reassurances and drinks of water she finally fell asleep.

I woke up this morning to the sound of the girls chatting about what to do today (: Evie had woke up, got herself out of bed, crawled to Lylas room and woke her up! Lyla got herself dressed and put Evies shoes on over her braces, it was just the sweetest thing.

She is already asleep in her bed tonight, I am praying it goes as well as last. Thanks for your prayers and words of encouragement they mean the world to us when we are exhausted and down.

Love you friends (:

answers...?

I was going to title this post "so many answers" as a sarcastic response to our appointment this week, but I didn't want to get anyone too excited (:

Evie's pulmonology appointment this week went okay. She has been super sick with an upper respiratory virus for about two weeks so it was a good time to see the Lung doctor. He doesn't think that the breathing issues that Evie is having during her seizures is a lung problem and has recommended that we see a cardiologist. We are waiting to hear from their office. He thinks that if she is having abnormal heart rhythms while she is seizing that may be why her oxygen saturations drop so quickly. We did a quick EKG at his office so we have a baseline for future reference.

Eve has been coughing, gagging, and fevering for about 10 to 14 days, hence my lack of blogging. I feel really bad for her. She is slowly getting better as some new steroids kick in and help open up her airways. When she's sick she prefers to sleep with John and I, needless to say we are all a little tired (: Someday maybe Evie's geneticist, pediatrician, pulmonologist, neurologist, neurosurgeon, plastic surgeon, orthopedic surgeon, opthamologist, ENT, (soon-to-be cardiologist), physical therapist, occupational therapist, speech therapist, and services coordinator can all get together and figure out the mystery that is Evie (: Actually, that would take away the pure joy we have at watching her grow into her own little self every day.

Thanks for loving us and checking in. Hopefully I will be back with good news of good health very soon!

Lindsey

"spells"...

Hey Friends,

We finally saw Evie's neurologist this past Thursday, the results were a mix of good and bad.

The neurologist is "fairly certain" that these spells Evie is having are seizures. They get worse when she's sick, better when we up her seizure meds so that would lead us to believe they are seizures.

Evie's EEG the morning after her day of seizures on the 23rd was actually not normal. The hospitalist told us that it was "normal for Evie" yet her neurologist said they were comparing it to the EEGs that she had during the first months of her life when her EEGs were anything but normal. She is having some "spikes" and "abnormal brain activity." Not great. We are scheduling a follow up EEG to make sure we're not missing anything.

My main question was why these seizures are causing Evie to stop breathing. Her neurologist said that seizures can cause shallow breathing or delayed breathing, but she shouldn't desaturate as quickly as she has been. She thinks it could be a heart/lung problem so we see her pulmonologist on the 21st of Feb.

The only good news from our appointment is that Evie's condition in general isn't declining. She isn't "getting worse" overall. If all of her body systems were declining we would have a problem, but in every other area she is improving so hopefully this just means she needs more of her seizure med.

I'm a little unsettled. I hope her heart and lungs are okay. We will see on the 21st.

Thanks for praying for us (: Evie is a light in our life and we are blessed to share her with you.

little comedian...

This is what I saw after I sent my last post... if she could talk I'm pretty sure she would say "Chill out mom, I'm fine" (: love her.

on the upswing...

Hi Friends (:

We have a neurology appointment scheduled for February 13th and I am feeling more positive in general. Evie should have had a neurologist come see her while we were inpatient last week, and the nurse I spoke with on the phone today assured me that it was a mistake that they didn't come by. Evie's neurologist checks her from head to toe, so I am feeling better about that. Plus we just plain like her (: We might stop in and see Dr. Pat (her pediatrician) in the meantime, just to make sure I'm not missing anything. She seems to be running a low fever on and off.

I don't always like to post things about my fears with Evie, but I feel like it's an important part of her story. I've realized that parents are going to have worries about each of their children in different regards, whether they "disabled" or not.

Thanks for loving us (:

Fears...

Is there anything worse than being fearful? Fear has been an underlying companion these days as we watch Evie closely. She seems to be doing fine with some odd behaviors here and there. For example, she slept a lot today... is she seizing or just growing? she was zoning out in the car... is she not breathing or just a little warm?

Like I said last week, Eve has never had more than one of these apnea/seizure episodes in a day, having 6 in one day last Monday was terrifying. I felt myself constantly thinking "is her condition getting worse?", "are these episodes worse than usual?", "are we doing the right things?", "is this the beginning of the end?" We are content in knowing that God knows the number of our days, but that doesn't mean we are ready for that.

All in all, things seem to be normalizing in her little body, just not in her mother's heart. I am being overprotective. I ask her if she's okay every 5 minutes, watch her breathe constantly and tell her I love her 100 times a day. I know God is in control and I need to loosen my grip, but wow is that hard to do when pictures of her struggling to breathe are racing through my mind.

Thank you again for your prayers. We will have pulmonology and neurology follow-ups this month, I will let you know how those go.

Praying for Gods many blessings to each and every one of you (:

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

Fun in the sun!!

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

On the plane...

So far so good! Sunshine here we come!

HOME!

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

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...

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

does she have any underlying medical conditions?..

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!!

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 (: