It's Amazing How People Come Into Our Lives...

The story about how we found daycare for Grace is one that has changed all of our lives! You see we found our wonderful Grandma Shirley through Craig's List.  I had never even used Craig's List before, but was desperate to find someone to take care of our daughter while Beau and I were working. I started looking before Grace was born, and before we knew that Grace would be born with Emanuel Syndrome.

I sent out many emails to different people on the site and heard back from many off them. Shirley was one of them.  When I sent her an email, her name was not on her "add" on Craig's list. But when I received her email saying that she was looking for another baby part time I noticed her name. It was so familiar, I knew that name.  My mom and mother in-law had both worked for her when she was a principal in Sun Prairie. We met with her and her husband before Grace was born and it was a perfect fit! A huge relief to have someone we knew to take care of our daughter.

Then we found out that Grace would be born with Emanuel Syndrome, Grace was born, and spent 2 months in the hospitals. We had not talked to Shirley about all of the complicated medical challenges that Grace would have until the day we went to her home to have her meet Grace. We were scared that with all of Graces medical needs Shirley might change her mind about taking Grace for daycare. But that is far from what happened! 

After telling Shirley and her husband of all that we went through with Grace after birth, and all that Grace's daily care would entail...Shirley still was willing to take her. Shirley is not only Grace's daycare provider, but she is another Grandma to Grace. She loves her just as much as we all do. 

Shirley and her husband, Ting have been amazing to Grace and our family! They are much more to us than just daycare, they are like family! 

People come into our lives for many reasons, but I truly believe that Shirley and Ting are angels sent from God for our sweet Grace. We just can't say thank you enough to both of you! 

We love you Grandma and Papa! Love, Grace

                Grace and Grandma Shirley cheering on the Badgers!

Another Diagnoses...

Our latest trip to the doctor was to the developmental clinic.  It was a busy day visiting with OT, PT, and Speech therapists as well as the developmental doctor. It was a hard day as the Dr. gave Grace another "label"... Cerebral Palsy.  The hardest part about hearing this is that Cerebral Palsy is NOT a part of Emanuel Syndrome it is something totally separate.

Cerebral Palsy is from a brain injury, which goes back to when Grace was only two weeks old. She had Mandibular Distraction surgery to extend her jaw out because it was so small.  During the surgery Grace had to be resuscitated, which led to multiple problems including her kidney failure, seizures, and brain injury. After surgery, the Neurologist told us that they did not know how the brain injury would affect Grace. We were devastated.

We were never really given a clear explanation of why Grace stopped breathing during surgery. There were multiple stories, but to this day, we don’t know the whole story. It was so frustrating knowing that it could have been a mistake on the part of a doctor. I guess mistakes happen, but it should not have happened!

It has always been hard to tell if Grace's developmental delays are from having Emanuel Syndrome, or from her brain injury.  I can't help but think what Grace would be like if the surgery complication had not happened.  Would she be holding her head up, sitting up...I guess I will never know. It is really hard to just be at peace with it all and to accept what happened!

Our beautiful girl makes it easier, her beautiful smiles are what we need to know that she is happy. Just hard to let go of what could have been...

We were also referred to an orthopedic doctor to look at Grace's spine and hips. He has told us that Grace has scoliosis as well as hip dysplasia.  So now we are going to meet with an orthopedic surgeon to see what needs to be done about her hips...another possible surgery :(  As for her spine, she may need a back brace, but for the most part they just want to watch it and hope it doesn't get worse!  

As for Grace she has had a pretty good winter…saying healthy for the most part. We had one hospital say for RSV, but otherwise way better than last winter! Now that spring is here we are looking forward to spending more time outside and looking forward to summer, when Beau and I are off of work! Oh yeah, and if you know anyone looking for a condo in DeForest, ours is still for sale. We hope to sell soon and move to McFarland where I work.  A ranch home would be a dream, that hopefully will come true soon!

Grace's new wheels

This was a very exciting week for Grace. She got her new Kid Cart Wheelchair. It is a whole new world for her! She really enjoys sitting at the same level as everyone else!  Her first outing was out to lunch and to Babies R Us.  She loves being out and about in her new chair!

We are planning on doing the Polar Plunge again this year! It is coming up February 20th. If you would like to plunge with us, please sign up on our team…Team Grace. We would love for you to join us. You can also pledge money for a great cause, Special Olympics.


https://www.specialolympicswisconsin.org/pp10/team.asp?id_t=361

About time for an update!!!

Not sure where my time goes...but I found a little bit of time for an update. Grace is doing so well! She is working so hard with her therapists on holding her head up and communication. They have been doing a lot of supported sitting with her as well as tummy time. She really enjoys sitting and looking around...it's a whole new view when you’re not laying on the floor! She is also working on getting used to her stander. She spends only about 15 minutes at a time in it, but this is a big improvement because she used to hate it! As for communication, Grace has really made some progress. She responds with big smiles to let us know that she thinks something is funny or that she likes it. This melts mommy and daddy's heart every single time (we waited a long time for those smiles!) Her speech therapist is also working on getting Grace to show us when she wants something. This has been pretty amazing. If we stop doing something she likes and she wants more, Grace will kick her legs and sometimes "coo" or make a noise to let us know she wants more. We have also been working on the sign for mommy, daddy, more, and all done. Not sure if she will ever use signing as a form of communication, but it doesn’t hurt to try!


As far as her health goes...her kidneys remain stable, and her blood work is down to every other month! We got some great news from her heart Dr., her last ECHO showed that both of her holes in her heart are now closed! He told us that Grace's heart is no longer a concern, and we no longer have to see him. One less Dr, it was a very great day! Otherwise Grace has been pretty healthy, just colds that we pray don't turn into something bigger. Grace is growing and getting heavier everyday! She now weighs 20 lbs 15 oz! In the 65th percentile for her weight!

Christmas was a lot of fun. Grace LOVES all of the lights. She enjoys doing tummy time in front of the tree, and I have to say, she may be sad when we take it down! She got some new toys that she loves...a monkey from her cousin, that we named Marty the Monkey, a sing along stage from Grandma Kathy, and lots of clothes from Grandma Deb. It has been so nice being home with daddy and Grace this week! Lots of time cuddling with her, it is wonderful. Grace will also be going on her first trip to Wisconsin Dells! We are taking her to Great Wolf Lodge, I hope she likes the water. It should be lots of fun!

Hoping the new year brings more great news for Grace…she is such an amazing girl and has come so far in the last year. We are so proud of her!

Halloween 2009

Wow, it has been a long time since I have updated! Grace has been doing well and we are keeping our fingers crossed for a healthy winter!

Halloween was very exciting this year, because we were home, and not trick or treating in the hospital like last year! We spent the night with family, which was very nice. Grace enjoyed listening and watching her cousin Mason. He is very funny! We watched Toy Story 2, and Grace watched almost the whole movie!

Of course Grace was a pretty pink princess...no better costume for her! Here are some pictues of all of the fun!

Grace's First Year...pause music below and then press play

Photo and video editing at www.OneTrueMedia.com

Grace is ONE!

Hi Everyone,
Today is Grace's first birthday. We wanted to thank all of you for sharing in her life...it has been an amazing journey so far! Your thoughts and prayers have been so comforting. We wanted to share these two things, we have both of them hanging on our fridge. Grace is one amazing little girl, we are so lucky to have her in our lives!



"Why I was Born" Author Unknown...

I was born to learn and love like everyone else. My body is imperfect, but my spirit needs no help. I was born to give to you, with open hand and heart. I'm the strongest soul you know, though I don't look the part.
I was born to teach you hope, faith, and patience, too. I came because no one else can do what I do. So the next time you think of me as broken, damaged, torn, know that I am here to lift you up...
That's why I was born.




WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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.

Thanks for all your support, love, and prayers,
Amanda, Beau, and Grace