Sunday, March 28, 2010

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!