Friday, August 29, 2014

Summer's End

As we sit bedside at Children's Hospital, once again I'm realizing that Mia's blog has suffered as the business of life takes over and posting updates to things like Facebook make it easy to fill in the gap. 

But the quiet time sitting bedside as we watch for even the slightest improvements in Mia's condition make for good relflection time. 

I was going to post some pictures of Mia in her hospital bed, hooked up to wires and tubes and breathing apparati, as she is right now but it didn't feel quite right. 

What she, and we need right now is love and happiness sent our way, not worry and fret, as a picture of her here at the hospital would only show a moment in time and not the bigger picture. 

The truth: Mia got incredibly sick, and if we hadn't gotten her to the hospital last night and instead tried to manage this at home as we usually do she probably would have died. 

An angel came into our home last night, a new nurse we had never met before who was just coming to meet and greet, to potentially take a few shifts as one of our home care nurses. She saw how Mia was struggling, jumped right in and starting doing some respiratory therapy with her. She asked, "Why isn't this child in a hospital? They could treat this infection much faster with IV antibiotics." 

By that point Mia had gotten much worse, really struggling to breathe and it was clear what had to be done: the ambulance was called. I'm confident Francesca and I would have reached that same conclusion sooner than later but I hate to think that by that time it may have been too late. We both have been so sleep deprived in the last week that we weren't thinking with the clearest minds. 

Divine intervention truly. 

She's improved a lot since last night but still has far to go. Her blood pressure is too low, her heart not strong enough to keep it high without IV medication and her lungs are still clogged with pneumonia. They had to stop her normal diet, which is the one thing keeping her metabolic condition and seizures in check. But they're slowing getting her back to where she needs to be. We, and the doctors are hopeful.  

So with that said I thought I'd post some pics of our little summer vacation from a couple of weeks ago, a great time spent with family and friends. I'd rather you see Mia in this way, more smiles and love being what's needed here than worry or comcern. Thanks for reading, it feels good to write and connect again. 


Friday, October 04, 2013

Off to School

Well we're back into the full swing of school and fall activities after a very relaxing summer. 
Mia missed an apple picking class trip due to being a bit under the weather last week but she is feeling a lot better and has been to school everyday this week!
Today she wasn't quite feeling it and I think she wanted to just stay inside under the blankets. Can't say I blame her as the nice weather we've been having is going to give way to the first fall rains later today. 
Mia has moved up a grade and has a brand new teacher. We're very excited to see all the fun things they have planned this year!


Sunday, February 10, 2013

Mia is 6!!

It's hard to believe that 6 years ago today we welcomed Mia Bella into this world and our adventure began but here we are! In the beginning we used to celebrate a week of her life, then a month - each one a milestone for us as we had no guarantee of just how long we had with her. We still don't, as life is never guaranteed, but as weeks turned to months and months to years we kinda forgot the doctor's grim predictions as birthday after birthday proved that Mia's will to live was stronger than anything.
February 10th is usually a big celebration around here with family and friends but today it was just the 3 of us due to the nor'easter that dumped close to 2 feet of snow, canceling the travel plans of Mia's grandparents. Mia's amazing nurse, Rachel and her husband did manage to dig out and come over for some cake.

Even though we've gone from celebrating her birthday from months at a time to the more traditional annual event, Mia Bella continues to inspire and amaze us every day. Her spirit is stronger than ever and her will to live is never ending. Today and every day she teaches us to count our blessings and they are many.

Happy Birthday Mia! 2/10/13

Friday, January 04, 2013

Mia is a Miracle Benefit!!

Now that the whirlwind of the holidays has passed, we have a moment to update everyone on Mia's benefit.
On December 8th, with the help of our friends and family we threw a wonderful party to benefit our little girl, Mia Bella, and the purchase of a handicap mini van to accomodate her growing size! We raised a lot of money and are so close to our goal! I cannot begin to thank enough everyone who donated, whether it was their time, money or both. Thank you thank you thank you!!

Tuesday, December 04, 2012

Home from school!

Mia had a great day at school today, and a usual she's pretty tired from working so hard.
Here's a nice pic of her new wheel chair. It is amazing how big she has gotten!

Tuesday, November 27, 2012

Heading off to school

And bundled up tight. A nasty mix of rain and snow this morning.

Mia is a Miracle Benefit December 8th!

Click picture to see it larger!

Mia is a Miracle Benefit!
Saturday December, 8 2012
Queen of the Most Holy Rosary Church
Bridgehampton, NY

This is a benefit to raise money to buy Mia a handicap van!

Facebook RSVP/info: Mia is a Miracle event page

Or call 631-324-7581 for more information

Saturday, November 17, 2012

Off to school

Here's a pic of Mia getting ready for school the other day! It's getting cold in Boston!