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:

Sunday, February 21, 2016

One Year Ago

Proud Daddy

A year ago Mia's life changed forever. It is hard to believe it has been a year since we packed our bags and headed to Cincinnati, hearts filled with fear, sadness and anxiety. At the same time, it's hard to remember that a year ago Mia was still in pull-ups and we were administering her enemas rectally. For Mia, her life before has become a distant memory. In fact, she recalls nothing negative from her surgery and recovery, or she has blocked it out. Either way, she often asks to go back! She wants to see the the doctors and nurses and take wheelchair rides that she apparently loved. She remembers friends from the Ronald McDonald House and all the fun things I had to force her to do!! I can never forget how much she protested all of those things, yet her recollections contradict mine. We are so grateful time has healed her physical and emotional scares.

Time has also allowed Dave and me to heal. I remember researching Mia's surgery and reading posts from my Spina Bifida group. It was unanimously the worst surgery had by those who went through with it. They also wrote it was the most life changing and, as painful as it was, they would do it again and would not have waited so long to do so. I can honestly say, my feelings echo theirs. Having the surgery at such a young age has allowed Mia to forget the immense pain, become more independent and increase her ability to partake in activities like her peers. It has taken me almost a whole year to say it was "worth" it. We pray that one day Mia will feel the same!

As we put last year behind us, we will never forget. Never forget the pain. However, we will always remember the bonds we formed with new friends and the ones we strengthened with old friends, the generosity that surrounded us then and still does today, the strength of the human spirit, the presence of God in our lives and the immense beauty of others. We look forward to a year of new beginnings!

Wednesday, November 25, 2015

Thankful for Heroes

Thankful and very blessed to be surrounded by real, live heroes.

My very first hero is my Mother. Not only has she overcome numerous obstacles in her life, in doing so she taught my brother and me about determination, perseverance, success, values, importance of family, unconditional love and compassion for others. She has embraced all of her grandchildren and has made no exception for Mia. She traveled with us when we first went to Cincinnati for our initial week long evaluation, lent a helping hand with Mia's morning procedures when Dave was out of town, learned how to assist the nurse so that Dave and I could go on vacation last year, stayed with me at Ronald MacDonald House and since Mia's surgery she has learned about her care so that Mia can spend the night at her house. Mia's medical needs do not stop her from taking Mia places and doing all the things she would do with any of her grandkids. She amazed me one day when I picked up Mia and she said, "She looked "mucusy" so I flushed her and had her drink more water." Not only is it a wonderful feeling for me, knowing Mom is able to assess Mia's medical needs and take care of them, it allows Mia to have time with Grammy like all the other kids, independent of me.

Next, of course, Miss Mia!! When I sit back and think of where she started, where she is today and all she has been through to get here, I couldn't be more proud of her! Not only does she face her challenges, she conquers them with grace! She is so brave, so resilient, so inspirational! Her bright smile and positive nature make me strive to be the best person I can be each and every day. She reminds me to count the smallest of blessings and take nothing for granted. She has shown me strength I never knew existed. Looking at her, I am reminded that life is unpredictable and fragile and we need to hold on to hope, faith and unconditional love!

Finally, I thank those heroes big and small who touch my life every day! Heroes who give selflessly, radiate hope, heal, cure, protect, teach, spread kindness, fight for better tomorrows and shine in the face of adversity and loss. I can name so many.  This year has redefined "hero" for me. It's not always the one who has climbed the highest mountain, braved the toughest storm or won the biggest battle. It is, in fact, the ordinary person who makes this world a better place by the way he/she lives life, making the most of each  and every day no matter how good or bad the day may be! They can be 1 or 101. They can be loud or quiet. Look around. They are everywhere if you wish to see them.

Happy Thanksgiving and happy birthday Mom, Mia and Gabriella!

Tuesday, July 21, 2015

Super Strong!

THE picture of the year! These two ladies have earned every bit of their accolades! Miss Mia continues to amaze and inspire everyone she meets. To meet her, you would never know what she has endured and how she has conquered all of life's challenges thrown at her from the day she was born. Her strength is much beyond her years!!!

Miss Magliocca's amazing dedication, compassion, and love for her students is not only admirable but a beautiful example of teaching with heart. We were very blessed to be a part of her first year of teaching and know she will have many years to touch the lives of children that walk through her classroom door.

Since my last post, Mia has grown up so much.  Her last catheter was removed June 4th and so was her immense anxiety. Within 24 hours we were able to lift her shirt and look at her belly without any flinching or pull back! She began a new chapter in her life. Now accepting of her new body, she is self-cathing! We couldn't be more moved by her ability to be independent. It is amazing!

On the other side of her recovery, we can finally say it was worth it. Although, "worth" is still a strong word for me. "Worth" doesn't seems to coincide with so much pain and suffering. However, it was an amazing transformation to watch and we are so thankful that the hard part is behind us!!! Her quality of life has definitely been changed for the better!

We are all enjoying a wonderful summer together. No matter what the weather is like, for us, this summer is perfect in so many ways.

Thank you all for carrying us through a difficult time! Thank you also for all who joined us for our annual Stroll for Strong. We had just over 80 members representing Mia's Marchers!!! A true example of how blessed we are!

Tuesday, May 26, 2015

Almost There!!

I can't believe it has been a month since my last post. They say no news is good news! I will say it hasn't been easy but we are in a much better place than we were a month ago. In fact, I've started this post at least four times. Each time I erased what was previously written and begin again because each week was a little better than the one before.

Even in a better place, Mia has nights she is up with nightmares and spasms and is hard to resettle.  The remaining catheter causes much discomfort and anxiety.  Thankfully, this last catheter comes out June 4th. We cannot wait!!! We think once that is out, Mia will move forward and be less anxious about her belly. There will be no more tubes taped to her body and she will be able to take baths again, lay on her belly, run without worrying about pulling the tube and so much more. This means Dave and I can also let go of some anxiety! I can't wait to be able to hug her close without worrying about her tube!

Mia has adjusted very well to cathing thanks to some wonderful nurses, phenomenal support from school and Mia's amazing strength and acceptance. Dave and I have also adjusted to cathing. Once Mia's anxiety decreased ours followed suit. I think it's safe to say that when you are comfortable enough to cath in the car, you have reached a new level of acceptance and performance.

We have begun to celebrate once again with friends and family! We are ready to begin our new chapter.

The older kids have resumed play dates and sleepovers and are mostly well adjusted to our new norm. We still are working a few things out, mostly with Nick. He says our family balance is not right because of the nurses. Keep in mind, the nurses only come 3 evenings from 3:30-7 so that I can attend Nick's track meets and run errands. Nick is literally home for about an hour, two max, when they are here. Samantha, on the other hand, loves having them and so do Gab and Mia. Samantha said they are so nice and she likes when they are here. Gab and Mia count down the days until they come! We told Nick this is only temporary. We will be done with nursing the second week in July. 

This roller coaster was a tough one to ride but we didn't fall off! We are all still here. Still hanging on. Still loving each day God has given us.

Thankful to be in a better place, we continually pray for friends back at the Ronald McDonald House who continue to struggle. Our prayer is that they too can move to a better place along their journey. One thing is for sure, this experience has left me questioning my faith more than ever. I have seen kids endure so much pain and suffering that it is very difficult to accept this as God's plan.   Not only was it difficult to watch Mia's suffering, but to witness child after child suffer in ways no one should have to. Imagine a two year old whose side effects from cancer treatment are so severe that his skin cracks, bleeds, weeps and his eyes are sewn shut in order to avoid infection and hopefully save his vision. In addition, they partially paralyzed his body in order to allow it to rest while healing. A sixteen year old, healthy and athletic, contracts a virus and in a matter of two days loses his heart. He is being kept alive by an artificial, mechanical heart and needs to remain until a heart becomes available (could be two weeks, could be two years, could be more). The stories are numerous! It's an entire hospital full of children fighting through illness, injury, disease, and surgery. A whole house full of families able to find smiles though the pain. I do see God's work in the generous volunteers, the love of all who share a common theme and the smiles of so many children who find beauty and joy among pain and suffering. These are the things that fill my mind as we count our blessings and move forward in our journey... happy to be in a better place...wishing for so many others to be here with us.

Sunday, April 19, 2015

Finding our new "normal"

I intended to post much sooner but every day seemed crazier than the one before! Between phone calls, getting Mia's new medical supplies in order, visitors, visits to schools and everyday happenings of the whole family, it took a full week to unpack! I still have not finished sending "thank yous" so if you have not received one yet, please know it will hopefully be on its way soon!

When we arrived home last Saturday, all the kids were waiting for us in the driveway. Gabriella was so anxious to hug Mia that she climbed in the car and began unbuckling her before Dave or I opened our doors! The rest of the night they were inseparable. They immediately went into their room and began making up for lost time. The girls are so happy to be back together!!! For me, it was heaven hugging my other kids again! 

Two days before we came home, while in the hospital, we learned how to cath Mia through her new "port"/stoma (the Mitrofanoff). This process, while not painful but a little uncomfortable, left Mia hysterical! She needs to be cathed every two hours so every two hours were dreaded by all! Thankfully, we had WONDERFUL nurses this week (two who took care of Mia at Daystar!) who helped Mia work through much of her anxiety. She went from screaming to helping in just one day! Thank you Monica! Although she is trying to accept her new body and life, she has a long way to go. She asks the same questions daily. "Why did God make me like this?" "Why do I have stoma?" "What is this for?" "How long will we have to cath?" The questions go on and on. 

Being home has definitely helped Mia's spirits and mine, however, it also has its challenges.  Home, and everyone at home, is the same but Mia is different. Because Mia is hooked to a urine bag at night she cannot get out of bed without one of us. We have a baby monitor set up so we can hear when she gets up. She continues to have spasms at night which wake her and her anxiety comes out at all times throughout the night. She will wake with all of those same questions. It is like having a new born all over again! Because we have to cath every two hours, our daily activities/schedules need to work around that as well. It's just a matter of finding our new normal.

As usual, Mia continues to amazes all of us! Although she is working through anxiety and varying emotions, she wants so much for things to be normal again. "Normal" includes going to school! Yes, she wanted to get on that bus with her sister this week! Thursday morning she decided she wanted to go, ride the bus, attend school and ride the bus back home. No half day for this girl! No rides from mom. I was nervous but also know that the quicker she gets back to her old routine, with her new changes included, the quicker she will accept things as being what they are. She went to school Thursday and Friday but did have a meltdown Friday afternoon. All the questions began and tears were flowing. She said, "I'm sorry. I didn't mean to cry but sometimes I just randomly cry. I don't know why!" Again, school and friends haven't changed yet she has. She will have to find her new normal at school as well! We are blessed to have our Plank North Family helping every step of the way! Mia is so happy to be back with Mrs. Roumpapas.

So much for this little girl to process and accept yet she continues to smile and push forward!