Monday, March 25, 2013

Oliver's School Visit

Today we went into school so Ollie could see his classroom and meet his teachers. We also had our nurse come and we tied up a few loose ends with the school nurses like where to keep his meds and planned for various situations. We've been talking about school with Ollie and keep telling him how much fun he'll be having playing with the other kids so I'm sure Ollie was a little surprised to see no classmates and about 12 adults talking around him! (the morning PreK has school T-F) He was very alert and took it all in, played with some toys, and met some wonderful people. We have a really good feeling about sending him, everyone is on the same page and Oliver was really happy and comfortable.

We signed in at the office

I'm ready to go Mom!

Hey Elmo goes to PreK too?

So many faces to scowl, I mean look at. ;)

I like Mrs. Diana my music teacher already, she loaned me a drum!

Sunday, March 24, 2013


I just finished filling out Oliver's paperwork for school. We are so excited for him to start! His new physical therapist has been over a few times and brought a recording from his classmates singing happy birthday to him.It is so adorable and Ollie can't wait to meet all of his new friends.

He practiced sitting in his chair for school and did a great job!

I had a really hard time filling out the health assessment record for the State of Connecticut. Those forms are simply not meant for children like Oliver and I couldn't help but think how unfair life was as I filled it out. One section has you circle Yes or No for a long list of heath concerns.

The first question is "Are there any health concerns?" Wow, yes. I envy the parent that gets to circle "No" and move on to the next page of the packet. No moving on for us, I circle yes. Daily medications? Yes. Problems with vision? Yes. Speech issues? Yes. Problems breathing? Coughing? Yes. Yes. It seemed to go on and on and with each additional yes I circled I just became more and more sad. This shouldn't be how I fill out my child's paperwork for his first day of preschool! I should get to circle "No" and move on and talk about how he loves building with blocks and crashing cars into walls! I should get to circle "No" and write about how good he is at sharing and plays well with others. I should get to circle "No" to questions like "Is ability to use hands a concern?" and" Is moving from one place to another a concern?" But life is not fair, and I don't get to. Yes. Yes.

The worst section was the "Developmental" section. Question 1: Are there delays? Well yes, I guess, but there is so much more to it than a simple yes or no! He wasn't always developmentally delayed, in fact, he was ahead in most areas, horrific MLD just sent him cruelly flying backwards developmentally. And to me the word "delayed" implies being behind in something, but some day perhaps, the possibility to "catch up". Oliver will never get that opportunity. I ended up crossing this whole section out.
Finally I reached the end of the page and laughed out loud at what I saw.

"Please explain all "yes" answers in the space provided below." This was followed by a single 8inch line. Ha! I'd circled over 25! I just wrote "see diagnosis" and signed the bottom.


On a happier note Uncle Steve is over today and Ollie is in a very happy mood. (Though he doesn't show it in this picture)

We also cut his hair this morning.

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.