Hi Friends!!
February 28th is International Rare Disease Day. To start the day Evie was asked to be on the morning talk show, the Morning Blend here in Omaha.
Here is a link to the broadcast!
http://www.omahamorningblend.com/videos/192483851.html
There is also a new video about Hypophosphatasia, the disease that Evie has, featuring some photos of her and many of our friends with HPP.
http://softbones.org/content.php?168
The Soft Bones group has given us access to connections and relationships with other people who have HPP, a forum to ask questions, meet others and not feel so isolated. We are so thankful for them.
We are truly blessed to be celebrating our extra special, ultra-rare girl today. I can't believe how far she has come in the past three and a half years, how faithful God has been every day, and how much we have grown in our appreciation of life, family, and all of you around us.
Love you all (:
Lindsey
Thursday, February 28, 2013
Wednesday, January 16, 2013
Blessed
Merry Christmas from the Elsaessers!!
We had an amazing Christmas this year with a few surprises (: After a wonderful (healthy) Christmas Eve, our foster daughter had a bad temp all day on Christmas... followed by her and Evie getting RSV. If you don't remember, RSV was what landed Evie in the PICU for a month, on life support for 8 days when she was an infant, so we were pretty worried. We stayed home, did a lot of breathing treatments and never needed supplemental oxygen (praise God!). I got a cold about a week later, and this past weekend we all had the stomach flu! I'm not sure what it is about this winter, but it seems like everyone we know has been down with something.
So instead of outings and playdates over Christmas vacation we slept in, played at home, Lyla and I painted her room purple, and had lots of snuggles. It was surprisingly relaxing and a welcome break from the normal hustle and bustle of the holidays. We all needed that long break!
School has started back up again and the girls and both girls are doing great. We are going to try sending Evie 3 days a week instead of 2... her teachers think she will benefit from the extra day. We will see how it goes and if she has enough physical energy to do it.
Other than seasonal illness we are taking Evie to see her neurosurgeon tomorrow for a check up. Her last skull surgery was just over a year ago (hard to believe) and he will check things out. I was a bit concerned about her last x-ray so I am interested to see what he says.
A pretty boring update, but boring is welcome around here!! (: Love you friends, hope you had a blessed holiday!
Lindsey
Tuesday, December 11, 2012
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
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
Thursday, November 8, 2012
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 (:
Wednesday, October 17, 2012
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
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
Thursday, October 4, 2012
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
Friday, September 28, 2012
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 (:
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 (:
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