Gracie's Ride

Gracie's Ride began because friends and family saw how hard it was for us to take Grace from place to place in our SUV. In order to take a trip anywhere we had to first load the car with Grace's Wheelchair, feeding pump, suction, and diaper bag. Then put Grace into her car seat, and off we go. Then when we get to where we need to be, we unload it all. It is truly exhausting going anywhere.

So the idea of getting a wheelchair accessible van for Grace came into our minds. After looking into it, and finding out how expensive it would be to get a van with a wheelchair lift, we let the idea go, because it was something we could never afford. This is where the idea for "Gracie's Ride" began.

The planning began about a year before the event. Many of our family and friends spent many hours planning this very special event for our family.  We couldn't believe the support from everyone, even people that had never met our family! It was all very overwhelming.  We can never thank all that were involved enough!

The day of the event came and oh my gosh, it was bigger than we could have ever imagined! Walking into the benefit for the first time, so many feelings rushed over us...I could only cry. All of the support and love for Grace...she has truly brought so many people together! There were over 300 things donated for the silent auction, tons of food,  and great entertainment.  Grace was a trooper, she stayed the whole time, just loving all the people and music.

In the end, we were able to purchase our van and we are now just waiting to get the call that it is ready for us to pick up. I can only imagine how much easier this is going to make our lives. We are so excited and grateful to you all!

We all wore Gracie's Team Shirts, pink of course!

The girl scouts helped in the kids corner, they make Grace her own vest!

A very special wagon donated to Grace!

Grace spent the night in the rocking chair

Daddy, Grandma, and Grace

Look at all the people who love us!

                                 

Grace turns 2!!!

I am not sure where the time has gone, but our baby turned 2 on September 7th!!!  This year was a much happier celebration for me, not sure why...maybe I am getting used to the idea that Grace isn't the average 2 year old. No that is not it...I will never get used to that. Birthdays bring the reminders of the milestones children reach. Two means, running, talking, causing trouble....but for Grace it means another year of challenges, but we are so grateful for another year! It is hard knowing all that Grace has to go through! I just try not to think about all the challenges, and concentrate on the happy things, and there are a lot of happy things! Grace has made amazing progress this year, and I just look forward to what comes next.  Anyway, she was so happy on her birthday! She knew it was a special day. All giggles and smiles this year! We celebrated by having a small party for her. She enjoyed opening her presents and playing with them. The frosting on the cake was good too! She loved looking at her candles and listening to everyone singing to her. It was a priceless day! Happy 2nd birthday to our Amazing little lady! We love you so much Grace!

So Happy to be 2!

Jambos from Mommy and Daddy

I LOVE Elmo!

My first Cake

All my cousins were at my party too!!!

Me and Grandma Great

Grace Rolls Over

Photo and video editing at www.OneTrueMedia.com

Summer Update

Well, I would say it is about time I updated! It has been a fun but very busy summer! I have really enjoyed being home with Grace this summer. She is getting so big and changes everyday.

Doctors and More Doctors:

So we took Grace to the eye doctor and found out that she has good eye sight. Normal for her age...and let me tell you, not many doctors ever use the word normal when they talk about Grace. But what is normal anyway :)! It was still good to hear. We also made our way to the kidney clinic, which is alway scary because Grace always has to get blood work and a urine sample (they use a catheter, not fun). Neither went well, as they could not get the blood from her. They tried both arms while she screamed and looked at her mom for help...it was a horrible day. We had to go back the following week and they finally got her blood in the first try. The good news is that Grace's blood work showed that her numbers for her kidney function are still stable, which means no transplant for now, we just hope they stay stable for a long time!  The kidney doctor is a little worried about her growth pattern. They feel that her growth has slowed down and that she is small for her age. This may be due to Emanuel Syndrome, but can also be linked to renal failure. So she may set up an appointment with Endocrine, which could lead to giving Grace hormone shots daily (we are saying lots of prayers that we don't have to go down that path!)  We also saw the orthopedic doctor and found out that Grace's left hip is dislocated and her right hip is also nearly out. It amazes me that she is not in any pain with this and that she still kicks her legs.  After talking with the orthopedic surgeon, we have decided to leave them alone...no surgery for her. Grace doesn't tolerate surgery well so it is really the last thing that we would want to do. So for now they will just keep a close eye on her hips. The doctor made us feel better about this when he told us that people with dislocated hips can still do everything that anyone else can do...but it may take longer. We are used to that, so for now, no big deal.  Grace had a great visit to her genetic doctor. We have known him ever since we found out that would be born with Emanuel Syndrome. He has been there through it all! He was so pleased with how well she is doing. His words "There were many times that we didn't think she would make it. She has come so far." It is always good to see him.

Some Awesome Firsts!

The first week of summer Grace learned to roll from her side to her back! It was a very exciting moment.

Grace also had her first haircut...which only took about 5 minutes, but was very fun for us!

Sitting Pretty

Beautiful girl!

She also has been very busy teething, which is not fun for anyone. She now has three teeth. Two on the bottom and the newest one on top! Yeah Grace!

FUN this Summer:
Grace's favorite thing by far this summer has been going up to my parent's place on the lake. She loves to watch the trees and enjoys swimming in the lake and the pool! Mommy bought her bubbles and she loves watching them. You can tell she is spoiled because now she has about 2 gallons of bubbles!

Happy 4th of July

Swimming in my pool

Uncle Jared, Cousin Mac, and Grace

Grace and Grandpa John at the lake

The summer is far from over and I am sure we will have many more fun adventures!

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