Saturday, June 30, 2012

Family Photo Session

A new friend of ours, Heather (Heather P. Photography on Facebook), was nice enough to take pictures of Oliver's adventure at the fire house and offer us a family photo session at home. Below are the sneak peaks she has already sent us. We're so excited to get the rest!

Heather is also working in collaboration with Dream Come True to establish the Heartsong Foundation that would offer similar services to families that find themselves in situations such as ours.

I am the “special” child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the “special” child.


Thursday, June 28, 2012

Summer fun.

Here are some pictures of the fun we've had the past few days. Ollie has been very sleepy, but it appears his nerve pain is under control with his new medicine. Let's pray that it continues to help him.

Playing in the pool in the backyard.

The fountains of water are a lot of fun.

Playing with my remote control firetruck from Sarah and Tim :)

Hanging out and supporting the Mets with my uncle Steve.

Uh oh, it seems we have some loyalty issues...

We drove fire trucks, I was sleepy, but I still had a great time!

Don't make me leave the fire trucks Mom, I could sleep here!

A delicious lunch at the Green Granary

3 seconds later...Ollie is never patient waiting for his food!

Watching Aladdin with my buddy.

Tuesday, June 26, 2012

This disease is horrible, it has already taken so much. 

We found ourselves watching Iphone videos on our computer as Oliver napped today. They may have only been from a few months ago ago but the difference between what Oliver could do then and now is so clear that it brought us to tears. 

Months ago we knew he was struggling with walking, but when an experienced Doctor explained to us that it is was "tight heal cords" and "he'll have no problem participating in sports when he's older." you tend to believe him. You want to believe him. Despite your doubts, you choose to believe him over what your eyes are actually seeing.

Watching the videos:

In December he could squat down and pick up toys while walking around.

In January he could walk around the house in his Frankenstein way,(at the time we noticed an issue and made a Dr appt which couldn't be fulfilled until March 2012)

In February he could still walk around the house but needed to be holding on to walls or walking toys

In March he could still take independent steps if we motivated him

In April he could still crawl or walk while holding on to our hand

In May he could walk while holding both hands and sometimes with one hand. 

 Not only has his walking been impacted, but he used talk all of the time and now we only get an occasional word or two. He would try to say everything, his voice was clear, strong and adorable. He used to crawl, roll over, sit up without assistance, reach for toys, interact with books, and feed himself. None of which he does now. He still smiles and laughs, and for this we are so greatful.

Tonight, as I held him in my arms and rocked him to sleep, I could not stop staring at his peaceful, beautiful face. He is an angel here on earth. How will we ever say goodbye to him?

Sunday, June 24, 2012


At the end of each June the Ciparelli family has a "Mega-Party" where we celebrate multiple birthdays, anniversaries, the 4th of July, and the beginning of summer. This year was different since it was the first time a number of relatives were able to see Ollie since the diagnosis. Even though he napped for the majority of the party, we were able to capture some great moments.

Happy birthday Dad! Your cake looks delicious!

Four generations of Ciparelli men: Papa, Grandpa, Dad, and Ollie.

Happy birthday Great Uncle Dennis. Cookies?...for me?...don't mind if I do!

Thanks Great Aunt Maryann (G.A.M.A) for letting me play on Grandpa's tractor. You know the only thing that could make this even better...

ICE CREAM! Thanks dad!

- Posted using BlogPress from my iPad

Location:Colchester, CT

Saturday, June 23, 2012

Touch A Truck

Take bright colors, flashing lights, extremely loud horns, continuous sirens, put them together and what do you get? An awesome time for Oliver!

Oliver "drove" a police car, a firetruck, an ambulance, an 18 wheeler, and even a racecar! He had so much fun and we were so glad he felt well enough to go today because this event was truly a little boy's dream. :)

Look Dad, I'm driving a firetruck!

"license and registration please"

This car is almost as fast as my Daddy's Corolla.

This truck is much bigger than the ones at home...."

Friday, June 22, 2012

Thank you Oliver's Team

Chris and I would like to thank all of the members of Oliver's Team. Friends, family, colleagues, and more than a few strangers have opened up their hearts to help our amazing little boy. We appreciate your love, support and generosity more than you will ever know. In addition to helping us pay his medical bills your donations have already helped us purchase several items that are helping to keep Oliver as happy and comfortable as possible.  Follow the link below to see a glimpse of the good you are doing.

Oliver, our team captain, thanks you.

Oliver with his new lion neck support

Thursday, June 21, 2012

Out on the water

While we were upset to have to miss the fire trucks this morning, we were able to make up for it with a boat ride this afternoon courtesy of my friend and coworker Diana Yonsky. We met her at Gerard's Marina up the street from our house and had a lovely time just cruising Candlewood Lake. Ollie liked the wind in his face and when we hit another boat's wake. He would get the biggest smile on his face whenever I said "whoa" when we hit a wave. It made Kate and I feel so good to see him smiling.

Thanks again Diana. Ollie really enjoyed it.

Check out my sweet shades. They have doggies on the lenses.

Mommy smiles while Ollie takes a cat nap. Living the luxurious life.

Quick quick! Get a family picture before the sun sets! Smiles all around.

Location:Candlewood Lake

All dressed up, but no firetrucks today

We are so disappointed, Oliver really wanted to see the firetrucks today, we've been making firetruck sounds for 3 straight days we were that excited.

Unfortunately Oliver  woke up in a lot of pain. Simply picking him up or repositioning him made him scream. The pain seems to be mostly in his back and neck but his legs and arms are stiff too. We gave him some pain medicine and he's more relaxed but only if he's held really still and it's making him groggy.

Thank you so much to Allie, Heather and the fire department, we truly hope we can make it another day.
My firetruck shirt
After some medicine I feel a little better and am watching a movie with my daddy

We talked to the neurologist, and we will need to keep altering his medicines until we find what keeps him the most comfortable, we're doing the baclofen 3x a day now and he said it was okay to spread the Keppra into 3 separate doses like I mentioned in yesterday's post. 

Wednesday, June 20, 2012

Myoclonic Seizures

What we originally thought were muscle spasms the doctors now think were myoclonic seizures. After he had the big seizure early Saturday morning, he should have recovered within 24 hours or so, but instead he got worse as time went on.

The doctors think that because these smaller "spasm" seizures kept occurring it wasn't giving his brain a chance to rest and recover, which is why he just kept getting worse until they gave him an extra dose of his anti-seizure drug at the hospital. We didn't count the seizures, especially since we thought they were muscle spasms, but between Saturday afternoon and Sunday afternoon he must have had close to a hundred of them. So now they've  given us a "rescue drug" to administer to him, should he have episodes like that again. It should keep him from getting to that "altered state" he was on Sunday when he couldn't see.

 He hadn't had any since early Monday morning, but he just had a couple (about 4 of them) an hour ago when were were walking around Michael's  craft store looking for iron-on letters to make shirts for our trip to Disney. He was very uncomfortable and each one made him jump and let out a small yelp of pain. His eyes started to get glassy so we rushed out of the store, but thankfully they stopped as we put him in the car and Beauty and the Beast started playing on his DVD player (thanks Sarah, I'll get it back to you soon!) It was just around time for his second dose, so we're going to ask the Dr about spreading out his current morning/evening doses of 1.5 ml to 1ml(his old dosage) 3x a day since the drug isn't time release and we think it was "wearing off" when he started having the seizures.

We brought him to the pediatrician this morning just to look him over and check his vitals to follow up on his hospital visit. All looked good, except I was right, he's lost a pound since his April visit. The regression of his fine motor skills is really impacting how much food he's taking in, and Chris and I try to help feed him but he's so accustomed to feeding himself that he gets frustrated with it all and won't eat as much. So we're trying to fatten him up a bit, tonight he had  a plate of pasta with spinach and alfredo sauce, peaches without the syrup rinsed off and a bowl of peanut butter ice cream with whipped cream on top. He was a very happy boy! 

Tomorrow we are going to the firehouse to drive firetrucks! Yah!

Here are some of our special moments from yesterday and today:

Dragon in the Box is funny

Eating Dinner on the couch and watching the Red Sox with my Daddy

Tuesday, June 19, 2012

We're home

After two long days Kate and I have our son back. He is now on an increased dosage of his anti-seizure medication and is close to being back to his baseline (where he was as of Friday).

The neurologist we were working with believes he suffered a seizure sometime early Saturday morning and the past three days have been the after effects. There was a point Sunday afternoon when he was not responding to visual stimulation and the doctor thought that his brain may have permanently lost its ability to process what he saw. We realized that our son may have already seen our faces for the last time. The pain we felt as we contemplated not only his blindness but his inability to understand what was happening was indescribable. If he was a little bit older we could have explained to him what was happening and how everything was going to be alright. At this age, however, he only knew that he could not see his parents and that he was scared.

Before Oliver began responding to us again Kate and I sat, held him, and cried. We thought that the summer we had planned to "Make Every Moment Count" had been taken from us. Now that we have him back, we will do even more to achieve that goal.

Thanks to everyone who texted, emailed, commented on the blog, reposted the blog link on Facebook, or just sent their thoughts and prayers Oliver's way. The support that we've gotten from family and friends has moved us both to tears of joy several times.

Pictures from the rest of our day:

Oliver gives Daddy his belated Father's Day gift. A collection of historical finger puppets from the Unemployed Philosophers Guild. "Look Dad, I'm taller than Napoleon!"

"Sure, Napoleon is interesting to learn about but I wonder what he tastes like."

"All that Emperor eating sure made me sleepy. Goodnight."

Monday, June 18, 2012

Videos from 3am

Oliver woke up at 3am and right away we knew right away he was looking at us! We were thrilled! Here are two videos we took of him coming out of the really scare state of unresponsiveness from the day before.  They are discharging him soon!

Just had the EEG this morning

He did a great job with the EEG. His least favorite part was getting the things put onto his head, but after she wrapped him up he was fine, he took a nap on Chris' shoulder during most of it. We don't have the results yet, but will keep you posted. He's still interacting with us and able to see, but he's groggy and his muscles are weak.

He's looking good!

He can see! He's talked a little bit too, he said "Mama", "No" "Yugo"(yogurt), "more" and yelled "Ged down!" to the wall mounted TV! Hahahah oh Ollie. He's eaten two yogurts and an apple sauce, and since he hadn't eaten since Friday we were pretty happy with that!

He's still having the muscle spasms but they aren't very frequent. We're hoping the EEG later today will give us some answers. It was just so nice to hear him say our names and want to play with his truck.

What is going on with our little boy?

Oliver woke up at 3am, much more alert than he has been the past 36 hours. Still not back to "baseline" as the Drs keep calling it, but it's good to see glimpses of our little Oliver again. He even said Mama! We think he can see at least a little because he's he's been tracking us with his eyes if we go on different sides of his bed and definetly feels more like he's looking at us not through us. Oh my God I hope so. Some minutes he'll be looking at us and some minutes he's glazed over and we're wondering if he's having absense seizures. We're having the EEG tomorrow so we'll know more then. We even got him to do a small giggle and smile when I played "there was a little mousy" and tickled up and down his leg. His smile melts our hearts. Bad news is he keeps having painful muscle spasms that cause him to clench up his entire little body, all 25 lbs of him, as he's lost a lb since April :( and yelp in pain. They make us feel so powerless, we want nothing more than to take away the pain. Now he's falling back to sleep. Hopefully the spasms will let up enough so he can rest.

Sunday, June 17, 2012

Why is everyday the new worst day of our lives?

We came to CT Children's this morning when Oliver was having screaming fits of pain and acting very unlike himself. His eyes were rolling all around and he has no control of his head or limbs. We were terrified. His Dr. told us to come straight to CT Children's because if we went somewhere else they would end up sending us here anyway. The Drs didn't think it could be the MLD because it happened so quickly. We put him down to bed on Friday night and he was acting himself and 10 hours later on Saturday morning he was a different child, Sunday morning he was even worse. So in the ER they did a CAT scan that showed nothing significant, ran blood work that showed nothing, urine test showed nothing and we finally agreed to a lumbar puncture to rule out meningitis and other infections that could hit so rapidly. Everything came back with nothing. Now he's been admitted. They can't find anything to explain this "sudden altered state" and therefore it is likely a sickeningly quick progression of this awful disease. The worst news is that the neurologist doesn't think he's processing anything he's seeing, and we agree. He looks right through us, he doesn't track objects and he doesn't even blink when something is coming towards his face. It's called cortical blindness. He could see us this morning, and suddenly, horrifically, now he can't. Words cannot express how we are doing right now.

Saturday, June 16, 2012

Long Day

We drove down to Long Island this morning for my family's annual picnic. We were very excited about it, we knew Oliver would love seeing every one and feeding the ducks. He was very tired, cranky and stiff from the minute we got him up. He slept in the car the whole 2 hours (very unlike him) and was crying as soon as we took him out of the car. His body was so stiff, he could hardly lift his head, his neck seems especially tight and he wasn't picking it up. When he tried, or we tried to help him he'd cry like it was acutely painful. He napped on me for over an hour and then would wake and cry and his body was curved into a tight C shape. He seemed miserable, uncomfortable and we were worried he was dehydrated because he hadn't been drinking or had any wet diapers. 

So we decided to come back home at 2:30, we hit miserable traffic on the Cross Island Parkway and didn't get home till after 5, but Ollie was sleeping on and off the entire way, very dazed and out of it, but I got him to say "mama", "dada", and "hop hop" (bunny) so he was a little more "with it" than he was at the picnic.

 After talking to the neurologist on call at Connecticut Children's we gave him an extra dose of Baclofen to help relax his stiff muscles and she thinks it's quite possible that he had a seizure during the night because that would cause his extreme tiredness today. And while he is currently on a seizure medicine, they started him on the lowest possible dose, if he did have a seizure they dosage will be increased. He was scheduled for an EEG to check for seizures on 7/3, but now it may be moved up sooner. 

 We hope it was a seizure and not an extremely quick progression of the disease, that seems impossibly fast, I mean just last night he could sit up, talk, interact and control his head and today he can hardly do any of those things. We would be devastated, we have so many beautiful plans for this summer.  

He's currently fast asleep on Chris' chest on the couch.

Wednesday, June 13, 2012

It's the small things

When we first decided to start this blog, it was really for the purpose of keeping people up to date with everything going on with Oliver. We were finding it difficult to retell sad news over and over again, all while maintaining the ability to go to work and function like a human each day, sleeping, eating, moving.  But now it's become something more, and I'm glad. It's become an outlet for Chris and I to express our emotions, to vent our anger, our sadness, and equally important, to share our happiness and post about the small things we do each day to make Oliver smile. 

When you really think about it, it's the "small things" that make up most of your life. The "big things", weddings, births, first day of school, graduations, etc, they make up a such a small percentage. Our real lives are how we spend each ordinary day; eating family meals together, going for walks, working at jobs we love, singing songs in the car, playing with trucks, reading books together. These are the important things. This all sounds so cliche', even as I type it, but trust me, it's true. I may only be 30 years old, but my perspective on life has changed so dramatically in the past few months that I don't even recognize myself, and my priorities from before. Why did I stress about that silly stuff? Worrying about what cranky, negative people thought or getting anxious about completing every single task at hand, right away, perfectly. It all seems so trivial in the big picture.

We may be grieving our son's stolen future, but we are truly living every single minute of his present. Don't be too busy, don't be too rushed, so stressed, frazzled or removed from the moment. In 30 years you won't look back and wish you spent more time using your Iphone, cleaning your house, or watching TV. You'll remember and dream about those small moments you shared with your family and friends. Live in the moment and make each moment count.

Here was our favorite moment of today:
 Eating whipped cream for dessert. :)

We never knew, but apparently it is Oliver's favorite dessert, it tastes delicious, super easy and as a bonus the can makes a funny noise which he thought was simply hysterical! Had I known this a few months ago I could have saved myself a lot of time and money that I spent making his 20 lb Elmo Birthday Cake! He would have been just as happy with a plate of whipped cream! :)

Tuesday, June 12, 2012


Chris is on his way to the FedEx warehouse to pick up round 2 of Oliver's Team bracelets. They tried to drop them off at the house yesterday but left a note saying we needed to sign for the package, or sign the bottom slip and leave it on the door. So we signed the slip and left it on the door, but forgot to unlock the screen door so they could get it! Today they left a second note today, saying "Screen door was locked" with a little sad face next to it. So rather than wait till tomorrow Chris is driving to get them right now.
We had no idea so many people would be purchasing them, we are thrilled to see all the support around us.  So if you still haven't gotten yours, you should be getting them soon!

A special thank you to Kate, Josh and James for the amazing Disney care package they sent to Oliver today, so many fun toys!! Oliver LOVES the car because it lights up and makes noise. Here he is playing with it...