Saturday, October 22, 2016

Still a Mystery

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

A Time to Feel Proud

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!

The first couple of hours, before her events began, Mia was so nervous. She was very quiet and picking nervously at her arm. Then it was time for her to run the 40 meter. Crossing that finish line was a proud little girl with a huge smile on her face! After that, she was comfortable and ready to try new challenges.

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

We Never Know What the Day Might Bring

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!