Wednesday, March 20, 2013

Catching Up

First, we want to apologize for not updating the blog recently. As many of you know, we have been communicating through Facebook and Twitter much more often than the blog. It's just easier to update both through our phones but we're going to make an effort to keep this blog going. If you didn't already know, you can also keep up with Ollie on Facebook at and follow him on Twitter @OliversTeam. 

Also, two Bethel High Students,  Jenny and Haylee, worked with Dean Suhr at the MLD Foundation to set up a donations page specifically for Oliver. You can find the page at This link will allow you to donate to the MLD Foundation directly in Oliver's name. This organization is the driving force behind education and research into MLD.  Their website and discussion board have provided Kate and I with most of the information we have about MLD and have made this difficult time much easier.

A lot has happened since the last post on February 28th. The most important event was Ollie's 3rd birthday on March 16th. Here are some of the highlights.

Mom, Jess, and Angela Ciparelli put together a book entiled "Cars, Trucks, and Things Ollie Loves" modeled after the Richard Scarry books (Ollie's favorite series). They went all over the state getting pictures of fire companies, politicians, police cars, and anything else that moved holding signs of support for Oliver. It was so touching. Neither Kate nor I can look through it without tearing up.
(Photos courtesy of Casey Diminico Ragan and Alicia Craybas)

Ollie spending some quality time with his great grandparents. What made this party truly special was seeing all the people in our lives celebrating together.

The kids made dalmation faces out of paper plates and felt. They came out so cute!

Kristie from Dream Come True set up a cotton candy machine and a sno-cone maker for the party. These were huge hits with the younger crowd. She made sure that the kids were nice and hyper for the ride home.

The candy bar was donated by Pam from I Want Candy of Brookfield and was also a really big hit. All the candy even went with the firehouse theme.

Kate made this wonderful cake which was even more impressive than her previous two cakes. Ollie had a dinosaur for his first birthday and a giant Elmo for his second. This cake even had Jolly Rancher lights!

Addy the firedog was a big hit. She gave Ollie lots of kisses which made his day.

Ollie was the center of attention all day long. Of course!

We had a LOT of food for this party. Many people went home with "grab bags" of leftovers. A big thank you to everyone who brought delicious appetizers, side dishes, and desserts!

Everyone had a great time celebrating Ollie's special day.

More kisses from Addy.

The New Milford Water Witch Company stopped by to wish Ollie a happy birthday with their truck and a fire helmet autographed by the whole company.

A huge "thank you" to everyone who helped make Oliver's party a success! Kate and I would not have been able to pull it off without the support of our friends and family. 

In other news, Ollie's health has not changed much since our last blog posts. A few of his medications have been adjusted to make him more comforable. He has had more difficulty with his breathing but it seems to come and go without cause. Our nurse believes that it's neurological and there's nothing wrong with his lungs or airway. The good news is that he hasn't had any signs of pnuemonia since mid January.

We have plans to start Ollie in the Excel Program through New Milford Public Schools on April 2nd. We are hoping he can go two days a week for a couple hours while the program does their music and library time. If he can't tolerate it then we will go back to PT at the house twice a week. This is a realy big step for all of us. We really want him to have more experiences outside the house and feel that the first day of school is a life experience he should have. We have also seen how he reacts to youngsters and how they react to him. It's so different than when adults interact with him. Kids just include him in what they're doing and treat him like he's no different than them. We adults can't help but look to the inevitable future and feel sorry for him. 

Everyone keeps telling us how big Ollie looks. He just had his three year physical and his 33lbs and 37 inches tall.  His height puts him in the 25th percentile but his weight is in the 65th! Kate says he's becoming a little "chunky monkey".

The past two days we've gotten several smiles from Ollie. They are getting less and less frequent but they still come with some effort. Each one means the world to us as we never know which will be the last. Each one gets us through the day and helps us prepare for the next. It's time to go work on today's smile.


  1. You make such a wonderful life for your little boy. He is so lucky to have gotten you both as parents. I'm sure that you will cherish these beautiful memories for a lifetime. May God bless you and your beautiful child and provide you with a miracle. Your family is in my prayers.

  2. Danielle could not have said it better! Happy Birthday Ollie!