Saturday, October 22, 2016
Friday was our long awaited urology appointment to address the ongoing blood in Mia's urine. They did an ultrasound of her bladder and kidney. There was no evidence of stones or anything else that would explain her bleeding. Where does that leave us? A trip to the operating room for a scope of her track and bladder lining. In a few weeks, they will go in with a camera and look for vessels that appear irritated/leaky and seal them off. In addition they will check the bladder lining for anything that looks suspicious and will biopsy it.
Having an augmented bladder puts Mia at greater risk for bladder cancer but it would be unusual for her to develop it this soon. The doctor in Cincinnati begins annual checks for cancer 3 year post op. Our doctor here does them 6 years post op. So, the doctor is really leaning toward irritated vessels. Of course, I will keep everyone posted. The procedure is simple but does require Mia to go under anesthesia. It never gets easier watching her go through that but hopefully it will bring us answers.
Sunday, October 16, 2016
Friday, for the first time, Mia participated in the Empire State Games for the Physically Challenged. It was such a special opportunity for her to feel proud of her accomplishments! As she has gotten older, the physical gap between her and her peers has increased. Her teachers, family members and many others that know Mia are always proud of her. However, she is very aware that she cannot keep up in activities that require running and other physical demands. The self awareness of her differences from her peers often prevents her from participating in physical activities with them, for fear of getting hurt or fear that she won't be able to go as fast or do as good. The Empire Games gave her a chance to feel like she could do it and she felt fast on that track! Better than that, she was able to compete on a track like her older brother who told she did so well that next year she will run even further and faster!
She participated in soft shot put and an obstacle coarse. It was her first experience but we certainly think it won't be her last!!
Thanks to her Plank North family for making the possible, especially her adaptive PE teachers, one who put the idea in our head last Spring and planted the seed and one who helped us through this first experience. What a day of proud moments for all the participants. It was wonderful seeing these children of all physical abilities smile, grow and experience a sense of pride in the things they can do!
Tuesday, October 11, 2016
I need to begin this post with a sincere apology for not putting anything up in months. I have three drafts started and never finished one. Those three posts began with Mia's great swimming and baseball accomplishments and all the wonderful times we shared this summer. We were so proud to support her and her Challenger Baseball team. "Baseball ice cream" is a real thing here in the Fallone house and we celebrated the end of every game with some of our favorite flavors.
While enjoying this beautiful, hot summer, we were careful to plan our days so that we could proactively manage Mia's overheating. In addition, we were tracking blood in Mia's urine that began in early June. Throughout the summer it fluctuated greatly, from blood with every cath to the absence of it for a few days. We never knew what the next day would bring. We e-mailed her urologist throughout the summer but he never felt it necessary to schedule an appointment. Then, the bleeding stopped completely for a month!!! It took me a few weeks to let my guard down and when I finally did....
we began to see blood in her urine again. It took on the pattern of previous months until Friday. Friday she had blood with every cath and it got worse throughout the day. Her last cath before bed kept me up most of the night. Of course I was thinking the worst. I thought for sure we were going to end up in emergency, the place we try to avoid at all costs, especially with a medically complicated child. Thankfully, we did not end up in emergency and we are scheduled to see her urologist on the 21st. In the meantime, I am praying we do not have a repeat of Friday.
Mia also had dentist appointments over the summer. During those appointments, they discovered 2 significant cavities that warrant partial root canals, full root canals or extractions. The dentist was in no hurry to take care of those and scheduled her for November 2nd. As luck would have it, Mia's one tooth would not wait that long. Her tooth began to break apart and we ended up at Strong's Eastman Dentistry for an emergency partial root canal and lovely silver crown!
Tonight I am feeling very frustrated. I am having a difficult time accepting reactive medical plans. When Mia was 10 months, we questioned how well her shunt was working. Her neurosurgeon at the time wanted to wait until there were more signs of shunt failure. Dave and I totally disagreed with that plan. With enough suspicion that the shunt was not working correctly, why would we wait to fix it? Waiting meant Mia could wake up one morning in shunt failure, an emergency situation that could have been avoided. We decided to get a second opinion and ultimately switched doctors. Her shunt, which had in fact fallen out of place, was replaced under very controlled and calm times.
Fast forward to today. We have known about these teeth since August. Today's emergency visit could have been avoided. If we had the procedure done sooner, Mia's own dentist could have done it and she may have been less scared in a familiar place with a familiar face. She also wouldn't have been rushed out of school and thrown into a panicked state. Of course, this may happen again as we still have the other tooth that needs to be fixed. We are holding our breath that the other tooth cooperates until her November 2nd appointment.
Holding our breath and waiting to see what tomorrow brings feels so wrong when time and knowledge are on our side now. Instead, we defy what seems logical and wait until something turns into a more serious situation. My fear is always that we might reach a point where we waited too long. When is too long? Friday I feared I had waited too long, that I should have been more forceful in my advocacy. Unfortunately, forcing is not always the best way to advocate either. We all need to work as a team. I truly always respect that but sometimes it's hard to know where to draw the line.
I don't know the answers. I most certainly am not qualified to be a doctor, and I try to keep that in perspective. However, it is difficult to live with the knowledge that something is wrong and then wait, especially knowing that waiting could mean tomorrow the situation may escalate. A controlled situation is always much less scary for all of us than an uncontrolled one. All the other kids have to get notes and texts of different ride arrangements, not knowing exactly why. We have to call grandparents who also panic with the unknown. Dave and I scrambled to rearrange everything. All of that going on at the same time Mia has to face scary unknowns, happens all too often and I just wish I could control that better. Thankfully, tomorrow may also bring peace and reassurance that we are doing the right thing! So, we will wait and see what our tomorrows bring!
Friday, July 1, 2016
Stroll for Strong 2016 was absolutely perfect! With beautiful weather and a team full of friends and family, we celebrated our eighth year of Mia's Marchers. It was our biggest turnout and fundraising efforts yet. The team raised $14, 037.00!!!
We want to thank everyone for sharing this special day with us and helping us kick start our $50,000.00 pledge. Our team is simply amazing!!
Enjoy some pictures from our day.
Thursday, April 21, 2016
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
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
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!