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21 thoughts on “Guestbook

  1. Praying for you – for a quick recovery for Evie and peace for mom and dad:).
    Under His Wings,
    Sheila Van Gorp

  2. You guys are in our prayers. RSV is scary, I spent a week in the hospital with Charlie with RSV after our 2nd ambulance ride, not fun but he still has his little ambulance bear. Evie is a fighter. The Lord has a plan for these little miracle babies. God bless you guys. Hang in there.

  3. Thanks for sharing about Evie. We continue to pray for all of you. The pictures are precious. God Bless you.
    Marlene Hettinga

  4. She is just adorable and beautiful. Her smile is contagious. I love the different banners that you made. They are a sweet testimony to our Great God who cares so much for you. Blessings…and may you always stay under the shadows of His Wings. Linda Verhoef

  5. Hello,
    I am Ronan great aunt. I am also severely profoundly deaf on the left side, and totally deaf due to nerve damage on the right. Has anyone suggested a bicros hearing aid system? It would transmit (fm frequency) input from the non-functioning side and transmit to the functioning ear. It would not have to amplify the ear that is struggling right now. This system allows me to at least get auditory input from both sides without turning my head. A lot of audiologists do not think of it as a viable option as it is seldom used. I have used the bicros for 25 years with great success. This might allow you guys a little more time to see if healing will occur before deciding on the CI. Blessings!

    In Christ I smile,

  6. Evie, you are a very special little girl, with very special parents. I admire your tenacity, your fight for survival, your determination to tackle the challenges you face and your amazing, incredible smile. I stumbled upon this blog by accident, but I’ll be following your story, to see how you are doing.

    God bless you, and your family. Merry Christmas to all of you!!

    Pamela in Calgary, AB

  7. Evie, I know your grandma and grandpa, and they’re so proud of you and they love you soooo much! Your mommy and daddy are doing such a wonderful job taking care of you and your big sister, and it’s really fun to read about how you want to play with her. I pray for you often (but probably not as much as I should. 😦 ), and I will always be glad that your mommy (who is a very good writer, by the way) decided to share your story this way. You are a very special little girl, and I know that God has special plans for you. He loves you very, very much. Have lots of fun at Christmas. This will be the first one you remember, so it will be special. God bless you and your mommy and daddy and sister and everyone who is working hard to help you get bigger and stronger. Sharon Lauer

  8. Hi there,
    I ran across this site because someone in our local parents’ (of kids who have Down syndrome) group linked to the “We are not special parents” post. I appreciated the post and stuck around to learn a little more about Evie, and just felt compelled to comment on a couple of things. First, you have a terrific voice and I feel privileged to learn a little bit about how your family is dealing with the difficulties facing you. And second, speaking of voice, the video of Evie giggling and doing high-fives with dad but then face-planting and crying — all without audible voice — is so incredibly expressive and precious! (And this is a total aside but as I read the post about your trying to decide what communicative path to go I found myself illogically rooting for ASL for no reason other than that our son has been in love with the Signing Time videos for years — I remember so vividly his first independent sign! I was pushing him in the stroller when I saw him pat his leg for “dog,” which momentarily puzzled me until I suddenly heard a dog barking in the distance… Such an incredible and proud moment!) Anyway, many more of those moments await all of us, of course, so best of luck on your journey with Evie!

  9. Evie, you can count on my prayers for you – particularly for your good health and encouragement as your dear parents endure the long wait for your next surgery in April. I so appreciated your Mom’s “We are not special parents” blog entry. I can really relate to that – especially the part about how you marvelous little kids teach us parents so much – our little Frances certainly did, and her Daddy and I continue to carry all that with us. Love and hugs, Mrs. Greene from Valpo : )

  10. I was looking for Wm Cowper’s God Moves in a Mysterious Way; but came to Johann Schutz’s All Praise to God Who Reigns Above:

    All praise to God, who reigns above, The God of all creation, The God of wonders, pow’r and love, the God of our salvation! **With healing balm my soul he fills,** The God who ev’ry sorrow stills, To God all praise and glory!

  11. Hi Megan! The Internet is a small world! I came across your post on a Down syndrome site (our middle daughter has ds) about special needs parents. I read all about Evie because I was compelled by her sweet smile and spirit. I came across a picture of you and realized Megan Schoon is Evie’s mom! Thank you for sharing her with the world. Your family certainly has had a journey and I am inspired by your positive outlook. Congrats on two beautiful daughters! I look forward to seeing Evie learn and grow.

    Emily (rosinko) Lammers

  12. Hi Evie, Im a random stranger who read your mummys fab post about special parents having special kids and cheered for her great words. But then I looked a bit further and saw this gorgeous kid down on the right column and it was you!!! I realise at the moment you have just had surgery (or maybe Im a bit late for that part) but you are such a ray of sunshine. Keep smiling girlie.

  13. Ruth,
    Hi Evie. Your picture has been popping up on my computer everyday from the family photos and I have been praying for you since you were born, of course, but everyday for the last two weeks. God be with you and I pray for healing. Blessings on you and your family from your Great Aunt Ruth.

  14. Thank you for sharing your special story and experience at GKTW Village. I am a proud member of the staff and your blog has inspired us all – we are blessed to have shared in your journey.

  15. I saw your blog shared by daughters therapy practice. It caught my eye because my daughter’s name is Evie Jean. She is a 16 month old 25 Weeker. Your little Evie is so cute! Look forward to reading more about your family.

    Jennifer from Texas

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