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.
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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

 Family!

 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!

Wednesday, July 17, 2013

In honor

By virtue of similar paths, we have had the privilege of meeting an outstanding family. A family that smiles amid all the adversities they face. A family whose strength inspires me beyond words. An 11 year old boy who has had more surgeries than his age and continues to face more. Yet, somehow, this amazing boy manages to conduct himself like any other boy his age. Another boy, a teenager, with his own challenges, who handles them with such grace that one would never know his daily obstacles. A toddler whose smile warms your heart. A father and mother who fight for their children and love them unconditionally. A mother and father who have more on their plates than any one family should have. It just doesn't seem fair! Still, meeting them, you'd never know.

About 2 weeks ago, my kids and I went to the hospital to visit the 11 year old boy who had been at Strong for almost 3 weeks! Having just had surgery, he played air hockey and foosball with gusto, not letting his IV or aches and pains stand in his way. The kids had a great time together! I never heard him complain once. Not about missing the first half of his summer, not about how sore I know he must be, not about the hospital food or about any other of the million things that he could have! His mother, looked as beautiful as ever and wore a smile that I know is difficult when your child has been suffering and you have been juggling home and hospital for 3 weeks!

Why do I share this with you? I share this in hopes to honor this family. I share this so you can understand how Dave and I keep things in perspective. So many children and their families we have met, each with a different story and yet all on the same path of  watching their child go through countless doctor appointments, procedures, surgeries and treatments. I share because this boy and his family deserve a moment of praise! I share because if they can smile, so can a lot of other people!!!!

Last week Mia had to go under anesthesia for an MRI. Most hospital days, I put on my yoga pants, comfy shirt (often my "Mia's Marchers" shirt) and put minimal make up on, if any. Not last week. I thought of this family. I got up, put on a nice outfit (well, not yoga pants at least), did my make up and wore jewelry. If that mother can do it, so can I! I thought of her much of that day, not out of pity but admiration! I thought of all of them and all they are going through and I smiled.....because they smile!

Saturday, June 29, 2013

Beyond A Dream Come True!!!!

Three major posts are coming your way but I have to start with Mia's dream!!!

On May 4th, our family boarded a plane for the first time all together!  The anticipated plane ride and days that lied ahead brought the Fallone children  so much excitement......and that was just the beginning!

We arrived at the Orlando airport and were greeted by a Give Kids the World volunteer, Roger. He held a welcome sign and took over from there, not letting us lift a finger. After helping us with our luggage and rental van, we went to the greatest place on Earth, Give Kids the World.  At the "House of Hearts", we were given an overview of the resort and all of its magic and wonder.

This was the villa we stayed in.

 
Kitchen stocked with pots, pans, toaster, dishwasher and soap.
Family room.

Kids' room.
The villa had a full kitchen, two bedrooms, two full baths and a washer and dryer. The kids all shared a room which had its own bathroom complete with a jacuzzi tub! As you can see, it was very spacious and clean!

Each day, the "Toy Fairy" would visit and leave presents on the kitchen table. All food was included and we could even have meals delivered whenever we wanted. On lucky mornings, you could catch the breakfast cart that drove around the village offering breakfast as you walk out your front door!

Here is a trip around the resort....

The Gingerbread House
 This is where we ate most meals. Volunteers serve your food and carry your tray to your table. You are not allowed to carry, stack, clear or clean anything. Okay.....very difficult for me!

The Ice Cream Parlor
The parlor was opened daily for breakfast, lunch and dinner!
Yes, ice cream for breakfast was  a MUST!

Marc's Dino Putt
This miniature golf course we did not actually make it to! Just so much to do.

Amberville
At Amberville, you could take a train around the resort....
play with an elaborate model train set....
play in the arcade with old school games as well as the latest Wii games.....

or race your remote control boat!

Julie's Safari Theater


This theater was the stage for "Village Idol", where kids performed, were judged and all received trophies.


Castle of Miracles
This castle was equipped with throne, princess spa, wishing tree that made wishing pillows, magically lit play area and ceilings that were lined with stars representing each "wish" child that has been granted a stay at Give Kids the World. The "Star Fairy" put Mia's star in Star Tower which was added to the castle because the ceilings were out of room. All stars remain forever!!!!! 
Enchanted Carousel

Keaton's Koral
Horse back riding is offered with therapeutic instructors!

Happy Harbour Pond
Nicolas went fishing but didn't have much luck!

Matthew's Boundless Playground
A Candyland replica playground!

The Pool and Splash Area



 Absolutely everything in the village was magical! Kids are not kids, they are princesses, guppies, princes, knights and pirates! Everyday is special. Sunday is the World's Largest Candy Land Game on the playground. Monday is Halloween in the village, complete with trick-or-treating. Tuesday is Mayor Clayton's Birthday Party. Wednesday is Village Idol. Thursday is Winter Wonderland where the village comes alive with snow, carriage rides, a parade and time spent on Santa's lap ending with a Christmas present for all. Friday is Pirate and Princess Party. Saturday is a poolside cookout and Big Splash Bash ending with family drive in movie by the pool's ship stage.

In addition to all of that, Disney characters come and visit the village throughout the week. Kids can  sign up to be tucked in bed by Mayor Clayton! And parents don't need to carry cameras. Photographers are there to capture your moments and put them on your very own disk. Even Village Idol was taped for us. However, if you want to take your own pictures, feel free. If you run out of space on your memory card, they will download your full card onto a CD to make room for your new photos. If you forget your video camera, just borrow from them. They will download all videos before you leave!

As if all of that wasn't enough, each family has their pick of tickets from just about any park in the Florida area. We were given 3 days at Disney, 2 days at Universal and 1 day Sea World. Any of these could be traded in for other theme parks such as Lego Land, Bush Gardens or air boat and helicopter rides. All of these came with free parking, stroller and wheelchair rental. Disney included a complimentary photo pass! The list just kept going.  

As far as Mia's dream......the pictures say it all! The moments were priceless. This unimaginable gift has left us humbled and changed forever!
Enjoy some of my favorite moments.

Our greeter, Roger

Mayor Clayton

Fun at the Pool





Horseback Riding



Character Visits at Give Kids the World





Sea World






Theme Parks






 






 











The kids wrote thank you cards to The Dream Factory. To sum up our trip, here are a few of their quotes cards:
"Without The Dream Factory, we wouldn't have had this once in a lifetime experience. This was one of the most incredible trips I will ever go on. I hope to someday volunteer at, not only The Dream Factory, but Give Kids the World too. I will never forget this trip." -Nicolas
"My favorite thing at GKTW was everything. I want to volunteer at Give Kids the World when I get older. That trip was an opportunity of a lifetime. There is nothing else like going to parks for a week and the amazing things at GKTW!" -Samantha