Saturday, December 24, 2011
Thursday, December 15, 2011
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!!!
Wednesday, December 14, 2011
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!
Friday, December 9, 2011
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!
Tuesday, December 6, 2011
Monday, December 5, 2011
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.
Sunday, December 4, 2011
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.
Evie doesn't panic as they take her away
I don't panic as they take her away
Anethesia goes well
Surgery is sucessful
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.
Monday, November 28, 2011
Monday, November 21, 2011
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.
Sunday, November 13, 2011
Wednesday, November 9, 2011
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 (:
Sunday, November 6, 2011
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!
Wednesday, October 26, 2011
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.
Thursday, October 20, 2011
Wednesday, October 5, 2011
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! (:
Tuesday, September 27, 2011
Sunday, September 25, 2011
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!
Saturday, September 24, 2011
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 (:
Monday, September 19, 2011
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
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 (:
Saturday, September 17, 2011
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.
Monday, September 12, 2011
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.
Sunday, September 4, 2011
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.
Thursday, September 1, 2011
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 (:
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.
Sunday, August 28, 2011
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:
Thursday, August 18, 2011
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 (:
Sunday, August 14, 2011
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 (:
Thursday, July 28, 2011
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 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!
Tuesday, July 26, 2011
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.
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!
Thursday, July 21, 2011
Tuesday, July 12, 2011
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.
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.
Monday, July 4, 2011
Monday, June 27, 2011
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 (:
Tuesday, June 21, 2011
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 (:
Monday, June 20, 2011
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,
Wednesday, June 15, 2011
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 (:
Friday, June 10, 2011
Sunday, May 29, 2011
isn't she beautiful!?!?!?!?!? (:
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
Friday, May 20, 2011
Wednesday, May 18, 2011
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 (: