Monday, April 7, 2014

Don't Miss Out!

Who doesn't want to be a part of this awesome team?

It is that time of year again and we are looking to grow our team. Please consider inviting a new friend to join Mia's Marchers! Follow this link to either join or donate to someone already on the team:  To join, click "join this team". To donate to a team member, click on  team member's name and "support me".

The Stroll for Strong will be held May 31st at Genessee Valley Park  at 9am and is so much fun. Last year we had an excellent turnout and raised over $10,000.  We have a slow start this year but our team always pulls through. I would love to match last year's amount or, even better, exceed it. Please help spread the word so we can continue to support a hospital that is near and dear to our hearts and helps so many children  in our community.

We are forever grateful to Mia's medical team and all the wonderful support staff at Golisano Children's Hospital. Not only did they save our angel, they gave us hope and reasons to believe in miracles. So, join our efforts in paying it forward. A Golisano angel might touch your life someday too!

Monday, March 17, 2014

Cincinnati...Here we Come

Is it really March already? Believe it or not, it has taken us from October until now to get into Cincinnati's  Pediatric Gastroenterology Program. In my September post, "A Blow to the Gut", I shared results of  an MRI and bladder procedures Mia had, both of which indicated problems that are impacting her toileting. With this new information, we are trying to piece together what may or may not be working for Mia and how we can help her gain independence in her toileting. With issues in both bladder and bowel, we will need to look at each system independently. We, along with her doctors, have decided to focus on bowels first. Mia's current GI doctor referred us to Cincinnati Children's Hospital in order to take a more thorough look at Mia. Our visit is scheduled for May.

Dave and I are very grateful that Mia has a full time aid helping her to manipulate her school and assist with her brace and toileting. Mia remains in pull-ups and is on a daily combination of Mira Lax and Metamucil. It is a less than perfect system. She has an average of three to four diaper changes during her school day and a daily average of eight. She is pulled out of class to get changed in the Health Office and also receives her Mira Lax there. This means more time out of the classroom. Thankfully, this has not negatively impacted her peer relationships. We do fear, however, as she gets older this will begin to set her apart from her peers.

Although we try to regulate Mai's bowel movements, they are extremely inconsistent. There are times when she is just a runny mess and times when she is extremely constipated. It is such a tough balance and daily struggle. Much like an infant, we have to track Mia's bowel movements, how many and what kind.
In addition, we have the added issue of Mia's eating and slow growth. At five years old, she is only 27 pounds, 36.5 inches tall.

All of these things have led us to Cincinnati Children's Hospital, which is one of only five hospitals (Strong is not one of them) that do an extensive motility study of the GI tract. A colonic manometry will determine how well her colon works. She will also have an  upper endoscopy to examine the lining of the esophagus, stomach and the first part of the small intestines and a water soluble contrast enema to help identify continence issues. This week long study will be a combination of inpatient and outpatient. She will have to have anesthesia and be on bed rest for the colonic manometry.

To make this very unpleasant visit a little more tolerable, we are bringing all four kids. My mother has graciously volunteered to come with us and help us out. We have decided to make a mini vacation out of it seeing Mia will hopefully have 4 days outpatient. We plan on going to the Cincinnati zoo, aquarium, museum and other attractions.  Dave and I know the reality, this week will be unpleasant for Mia and difficult for us to watch her. It will be a lot of new information on top of a very emotional week. We are hoping the presence of Mia's siblings will help her and us!

As usual, we are asking friends and family to keep Mia in their prayers as she braves another medical challenge.

Sunday, January 5, 2014

It Doesn't Get Any Better Than This

2013 was an amazing year! 
2013! It began with many fears surrounding the girls' upcoming entrance  to kindergarten that ended with the good news of our new "Mayor". Included celebrated milestones we never thought possible. Gave new meaning to dreams coming true. Brought great health. Blessed us with new friendships. Opened our eyes to a whole new level of human kindness. And created memories with family and friends that we will cherish forever.

So many proud moments this year. Looking back it is amazing how blessed this year was. First we found out Mia was being granted her "dream" to meet Cinderella. The trip, given to us by The Dream Factory, was nothing short of magically unforgettable. It truly was the trip of a lifetime! Our Give Kids the World Star shines brightly in our family room, our own little "Castle of Miracles". During this trip, we were fortunate enough to travel with another Rochester family and  began a new friendship.
Upon returning, we quickly began wrapping things up for the annual "Mia's Marchers". Marking our fifth year, we decided to set our goal high and celebrate big!! We raised over $10,000, bringing our five year grand total to just over $32,000. In honor of all our supporters, we gathered at the house to share some food, friendship and good times. The memory of gathering together in support, love and for a greater cause is priceless.
Three weeks later, we found ourselves celebrating again as Mia and Gabriella walked across their preschool stage. Oh, how proud these preschool parents were! I should not forget to mention how proud their grandparents and siblings were too. They had a whole cheering section, complete with a cousin from Italy! These girls!!!
Summer was filled with new adventures and plenty of fun. The girls took swim lessons for the first time and Gabriella was even swimming by the end! Mia was able to ride along with the other kids in her new adaptive bike. Both girls participated in the Penfield Library Reading Program. We spent an overnight in Old Forge with our best friends/family the Davenports. Let's not forget swimming, kayaking, boating and jet skiing at the Stuvers on Canadaguai Lake.

Of course, Fall did not disappoint. School began with a bang! All kids love their teachers and are doing great! On our first long weekend, we were able to take a drive through Canada's African Lion Safari. The monkeys hitching  rides on the roof our car  was definitely a highlight for us! All the kids enjoyed our annual trip to Stokoe Farms for some Fall Fun. The main event....Gabriella and Mia turned five. They thoroughly enjoyed their Princess Sofia party and all the accolades that came along with it.

The year ended with holiday celebrations and much needed family time! 

  2013. We are grateful for all you brought. Love and laughter filled our house and the memories we made are some of the best we've had.
Goodbye 2013.
Hello 2014.
Here's hoping for another banner year.

Friday, November 8, 2013

The Mayor

Dave and I breathed a sigh of relief when we sat down with Mia's kindergarten team and learned of her new nickname, "The Mayor".  In true Mia fashion, she has endeared herself to so many at her new school, Plank North. We suspected she would win over the adults but were apprehensive about her peers. Well, we couldn't have been more wrong. Apparently, there is never an empty seat next to Mia at lunch. On the afternoon bus, the kids fight over who is going to help her get out of her harness. And, when we went to Open House, we couldn't make it two feet without someone stopping to greet Mia. Because Mia takes extra time to navigate her environment, she leaves  five minutes before her classmates when going to specials and lunch. Staff members have been instructed to just give a salute or finger wave to Mia because her popularity is slowing her time travel even more. "Mayor" is music to my ears!

So, let me back up. The night before Mia and  Gabriella stepped foot on that bus, heading to kindergarten for the first time, I cried for hours. My emotions were just a mixed web of feelings: pure joy and gratitude for a milestone which was once said would be very unlikely for Mia, disbelief that Dave and I ended an era of  our "babies" at home, fear for the girls now going to a brand new school for them and for us, sadness for the girls being separated in different classes for the first time and an overwhelming terror for a  whole new world of vulnerability. Although many of these feelings are natural for sending any child to kindergarten, they are magnified when sending your child with developmental delays and medical issues. My head kept firing question after question. How will we be able to protect Mia from the cruel things kids might say? Will someone make sure she has a friend to sit with? Will we be able to repair her feelings when she is always the last one picked during PE class because she cannot physically do what her peers can? Will she be able to focus long enough for a full day of  school? Who will shelter her from the commotion and noise that bother her in the cafeteria and on the bus? Why can't I hold  her hand up steps and on the playground? Will kids notice she is in a pull up? Will they question why she needs assistance with toileting all the time and begin to pick on her or distance themselves from her? Will Gabriella miss be lost without Mia? Will Mia be lost without Gabriella? Are we doing the right thing by separating them? Can Mia get the right amount of  help  in order to  achieve academic success in a whole new world of "Common Core"? The list went on and my head just wouldn't stop!!

Now fast forward. I still have some of those fears but, thanks to a wonderful transition, I am not losing sleep over them (except for tonight as I write this blog at 1am).

Dave and I could not be happier with the faculty and staff at Plank North. The Principal, Vice Principal, teacher, nurse, aides, therapist, psychologist, bus driver and  many more have gone above and beyond. We met a few times over the summer and were in constant communication. Everything was in place for Mia before the start of school. They installed a coat hook she could reach, ordered a smaller more supportive chair, measured her against sinks to see where she would need stools, installed a five point harness on her bus, became familiar and successful with taking her brace on and off, and thought about things proactively so Mia was set the day she stepped foot in that door. In addition, they made Gabriella feel special and included. It was amazing!

It is with immense joy that I report Mia and Gabriella are doing very well in kindergarten. Mia is always working on something but is learning so much and growing stronger everyday. She knows  all her letters and letter  sounds, sets of numbers, some sight words, daily routine and is making a ton of  friends. She needs extra processing time, reminders to stay focused and a great deal of support with handwriting but is keeping up with kindergarten. Most importantly, both girls LOVE their new school. Mia reports about her "funny" teacher daily. Her aide is a special blessing that takes extra care of her throughout the day and always gives us a daily report! We are grateful to her and all those who have made the girls' experiences all positive!

Both girls look forward to going to school each day, which means all is right in their world!

With Mia being the Mayor, everything is right in our world too!

Sunday, September 1, 2013

A Blow to the Gut

This summer was filled with wonderful adventures for all. However, was also filled with stressful times for Mia. Mia does not like being out of her routine and new adventures can be difficult at times. Here are happy times she had at a dear friend's cottage on Canandaigua Lake.

Summer is also a time of many doctor appointments for Mia which is extremely stressful for her. In July Mia visited her ophthalmologist. In an effort to improve her vision in her right eye, we are placing drops to dilate the left eye, forcing the right eye to do most of the work. Thankfully, that has been going well and in October we will see if it has been successful. We also visited her neurosurgeon, orthopedic surgeon, urologist and gastroenterologist. All of those visits resulted in an MRI. The MRI resulted in a new diagnosis for Mia, Caudal Regression Syndrome. That's a mouthful for saying Mia's sacrum (bottom portion of the spine) did not form. The new diagnosis sheds light on Mia's weaker lower limbs, feet sensitivity and toileting. The latter was a punch in the gut!

Last week Mia had two more procedures that confirmed a neurogenic bladder problem which will prohibit her from achieving bladder control. This means she will need to stay in diapers or empty her bladder using a catheter placed in her abdomen. There are a few other bladder issues that will need medication and/or surgery to correct them. Similarly, given her bowel incontinence, our options are diapers or the MACE (Malone Antegrade Continence Enema) procedure, which empties her colon using fluid (similar to an enema) through a catheter in her abdomen.

This news is not the worst, we know, but it most certainly has left us with a sick feeling in our stomachs. So vivid are the memories of her colostomy days. So vivid are the memories of procedures and surgeries to reverse the colostomy. And so vivid are the memories of hopes for a better independent life for Mia. The measures we took to reverse Mia's colostomy as an infant were to improve her quality of life for the rest of her life. To be more "typical", to not stand out from her peers in school, to decrease her chances of being picked on, and most important to gain independence throughout her life.  Given Mia's shunt, we also wanted to minimize her chances of infection. All of this now erased! We are back at square one and Mia will have to face challenges we never wanted and thought we had avoided for her. I guess God has other plans, even though we don't agree with them!!!!

As she begins kindergarten (that is a whole other post of worries), she will have an aid to help her through her day and take care of her toileting. We do not need to make decisions right now but the older she gets, it does become more immediate. We do have more appointments coming up and will be doing more research before we put Mia through any permanent changes. All of this requires more surgeries, more chances of infection and more challenges to daily life for Mia!

Monday, August 5, 2013

Thank you Dream Factory

Last November, my sister-in-law said she really wanted to submit Mia’s name to The Dream Factory. Having never heard of this organization, she explained what she knew about it. She proceeded to tell me that she could not submit Mia’s name. We, being Mia’s parents and due to HIPA laws, had to facilitate the process. Dave and I felt guilty accepting such a gift, even before knowing all the details.  My sister-in-law, seeing our hesitation, said, “I think Mia really deserves it! I wish you would consider it.” 

That night I thought about her words, “Mia really deserves it.”  In our many stays at the hospital, Dave and I met kids as sick as Mia and those much sicker.  How does Mia deserve it more than another one of those kids? Dave and I read the website again! The Dream Factory grants dreams to kids with chronic illness.  Mia most certainly has chronic health needs. It is then that my mind began to shift.

Mia has been through so much. You would never know by meeting her today that by the time she was 13 months old, she had 6 surgeries, three of them brain surgeries, and one more surgery before she was 2. Mia was born with a head the size of an adult’s. When we took her home, the plates in her skull were still moving. We carried her around on a pillow for weeks because her head was so heavy and awkward, you couldn’t cradle it safely in the crux of your arm. Mia’s Early Intervention services began as soon as she came home from the hospital. She has worn helmets, Ankle-Foot Orthotics, used standers to stand, walkers to walk and most recently a scoliosis brace encompassing her torso, which she will wear 23 hours/day well into her teens.  She has had a colostomy, been through numerous x-rays, CT scan, MRIs, and so much more.
It is with Mia’s hard work and the help of so many others, that she is standing here today. We were told she had less than a 50% chance to leave the hospital. If she did, she probably would never stand, walk or talk. Mia didn’t stand or walk within the normal time frame. But at age two we rejoiced as she took her first steps.

As these thoughts went through my head, I agreed with my sister-in-law. Mia did deserve this. She has defied all odds. She has pushed every day with schedules that include doctor appointments, medical procedures, physical therapy, occupational therapy and even everyday tasks we take for granted, such as holding up her heavy head. I know there are kids who push just as hard and harder and I hope they too can have their dream granted. 

What the Dream Factory gave our family is a gift unimaginable! It has touched us in such a way that no words can express our deep gratitude and emotions. It has left us changed and more humble. When two wonderful volunteers came to our house, I could feel the roof beginning to pop as Nicolas and Samantha’s excitement grew with each new detail of what the trip would include. I had to remind them that this meeting did not mean we were definitely going. 

See, it was just as much a gift for myself, Dave, Nicolas, Samantha and Gabriella as it was for Mia. When a child is sick, as you can imagine, we all live it. Mia’s siblings worry when she is in the hospital. They have spent hours helping Mia during her recoveries, going to doctor’s appointments and participating in her therapy sessions.  We, as a family, have lived through Mia’s many lows and celebrated her many highs. As a twin, Gabriella has had to take a back seat and is too little to understand why and that she is just as important. In fact, on the trip she asked, “Mom, why does Mia get her dream and I don’t get mine?” I had to try my best to explain why and that we were all getting this dream!

Give Kids the World was a place like no other. Really an unimaginable fairytale that unfolded before our eyes! Not only did Mia’s dream come true, it was the first family vacation we had complete with plane rides, meals made and served and unending fun! It is a place where kids are more than kids, they are kings, princes, princess, pirates and idols. From the daily toy fairy, winter wonderland with Santa, horseback riding, magical pillow tree to the adventures of the theme parks, there was not a day that went by that we, as parents, took for granted the smiles, laughs and pure joy of our family. It truly was a vacation of a lifetime. 

Most importantly, our angel finally got a moment for herself, a moment in life that was without fear, without pain, without work. I only wish you could have seen Mia’s reaction as she met Cinderella.  It was everything we had hoped for and more. Upon entering the covered garage at Universal, Mia disappointingly asked, “Are we at the doctor’s office?” My heart aches to know that this has become part of Mia’s normal life yet that day my heart rejoiced to be able to say “No Mia, we are not at the doctors. We are on vacation, remember?”  That vacation allowed all of us to take a break, forget and enjoy each day. For this, there is no thanks big enough. The memories we have taken away truly are priceless! That moment in time, as well as many others, including Gabriella’s dream of meeting Ariel, will live in our hearts always.

So thank you, Dream Factory, for all that you have done for us and continue to do for families like ours. You do make a difference. You do make this world a better place. You did make all of our dreams come true!!!

Sunday, July 21, 2013

Celebrating Five!

It is hard to believe Mia's Marchers celebrated it's fifth year! It's not, however, hard to believe how amazing our team of family and friends is.

Five years ago, I had no idea how much to set our fundraising goal for. I think I may have set it for a couple hundred dollars. That year, 24 members raised $2,000. Each year we grew in numbers and contributions. So this year I set the goal the highest it's been, $10,000! Two weeks prior to the walk, we needed quite a bit to meet that goal. Of  course, we, not only met the goal, but got all the way to $12,000! I am proud to say that in 5 years, Mia's Marchers has raised over $32,000!!!!!

In starting Mia's Marchers, our goal was to "pay it forward" in whatever way we could. Whether you are a parent, grandparent or still just a kid, chances are you know a child who has benefited from Golisano Children's Hospital. Some children know the hospital too well, others for just a brief time. Dave and I have said it many times, all hospitals have their pros and cons but we are so fortunate to have a children's hospital close to us. It allows us to manage Mia's care with ease and with a great medical team. Mia considers Sandy Strong one of her friends! 

Now, with the help of the community and many others, they are building a bigger, better Golisano Hospital!!! So, we are paying it forward and we are so blessed to have the support to do that.
We want to thank our team from the bottom of our hearts. We hope you are proud of your contributions that are helping kids every day! We are.

Take a look at our team!
Mia's biggest supporters!

Our St. Joe's Family

Great neighbors!

Friends from St. Joe's run 5K again!!

 Waiting for the Stroll


 Showing our team spirit

Friends get a chance to talk

 One of our littlest supporters!

Wearing it with pride!

 Inseparable twins!

Thank goodness for our fashion consultant, Holly!
Even our best sitter runs with us!

Chillin' with Grammy

Samantha and Dave ran their first 5K!!! So proud of them!
We LOVE Sandy!