Thursday, April 21, 2016

It's Time To Make Our Mark


Calling all old and new Mia's Marchers!!! Many of you know the new Golisano Children's Hospital opened its doors last summer. Dave and I were invited to see the hospital. On our tour, we were shown a "classroom" for children needing school during their stay. The room plaque names a family of a former teacher that sponsored this classroom. At that moment, Dave and I had the same thought, "Why can't Mia's Marchers sponsor a room?"

Since the birth of Mia's Marchers in 2009, our team has raised over $50,000. That would have been enough to sponsor a room, but an opportunity never presented itself. Lucky for us, phase II of the hospital is still in progress. The surgical floor has yet to open its doors. We have agreed to raise other $50,000 over the next five years. We will be sponsoring a "surgical consult room". This room was designed for important conversations with families prior to and/or following surgery. The room in on the fourth floor and is 10'x10' in size. Having used surgical consult rooms for each of Mia's eight surgeries, we loved the idea of this sponsorship. After Mia's 13 hour surgery last year, the consult room has a deeper meaning to us than ever before.

So, let the fundraising begin. Gather your peeps and give us your shirt sizes. We are so excited and hope you are too! 

Follow the link to join our team or sponsor a Mia's Marchers member. This year, and all sequential years until we meet our $50,000 goal, we ask that contributions go toward the new building. Under available programs, choose "New Building Fund" located under the "select a program" drop down menu. This will ensure it goes to the Mia's Marcher's room.

Sunday, April 3, 2016

Never Say Never


Since 2008, the words "never" and "may/will not" have been used far too often in our life. It began at our 16 week ultrasound when doctors said, "Twin B may not make it through the pregnancy. With less than a 50% chance of surviving, twin B's grave situation will significantly compromise twin A's chances of survival." At that point doctors suggested fetal reduction. Next was, "Even if twin B survives the pregnancy, he/she may not leave the hospital." Giving twin B's critical situation, we needed to determine what level of extreme measures were to be taken at birth, keeping in mind that, "He/she may never walk, talk or comprehend and will need lifelong care." Images taken after birth confirmed the significant absence of brain tissue, along with a new V.A.T.E.R syndrome diagnosis, making Mia even more medically complicated, and confirming the neurosurgeon's belief that she would have a life full of cognitive and physical limitations. 

Surgery after surgery, Mia defied odds. Still her neurosurgeon at the time did not want to replace her failing shunt because, "She is already doing more than she "should" be doing. She has a very disorganized brain and is missing crucial parts."  In addition, he did not want to approve a helmet which would give Mia's head a more normal shape. His response was, "No one is going to see the back of her head in a wheelchair and she won't know the difference." These conversations shaped our decision to find a new doctor.

I apologize for those of you who have heard this story numerous times, however, it is important to preface this post with that background knowledge. Our response to every "never" or "may not" is "WHAT IF?", always thinking about how she was never suppose to be what she is today. Since Mia's birth we have found health care providers, therapists and educators that share our philosophy of what if.   It is our job to question, research and follow through even when things seem to defy medicine.

We aren't willing to settle for "never's" without pursuing "what if's". Mia is walking, talking, running, reading, writing, laughing and scoring average to above average on all her cognitive testing. I am not mad at the neurosurgeon who doubted her potential. He is an excellent surgeon and performed Mia's first life saving surgery within minutes of her birth. But, he was not willing to explore the "what if's" with us. As parents of a child with special needs and medical concerns, we have to question and pursue the what if's. 

Mia will have limitations but she will also have many possibilities. With half the brain tissue and a never predicted overall IQ score of 112, imagine her possibilities!!!

Many have been asking for the Mia's Marcher link:
 http://teamraiser.rochester.edu/site/TR/Events/General?team_id=3077&pg=team&fr_id=1130