Monday, January 31, 2011

say No to the Stress...

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!

Tuesday, January 25, 2011


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.

Saturday, January 22, 2011

she caught the bug...

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.

Thursday, January 20, 2011

blue is NOT evie's best color...

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.

--- 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!

Tuesday, January 18, 2011

my thoughts on Holland...

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...
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.

Monday, January 17, 2011

sleepless in january...

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.

Monday, January 10, 2011

not yet.

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 (:

Thursday, January 6, 2011


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!

Tuesday, January 4, 2011

orthopedic appt...

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!

Sunday, January 2, 2011

introducing.... 2011!

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:

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.