Tuesday, July 31, 2012


After 2 blown veins in his arms, 4 different nurses and 1.5 hours of crying they finally got Oliver's IV in and drew blood for lab work. It took us a half hour to calm him down and they came back and told us that the blood they drew had clotted and they needed to draw it again! Thankfully they could just use the IV port, or so we thought, but it didn't work! So they then had to stick him again and draw from his other hand. He's going to be bruised for weeks.
We're not sure what's happening next but they're doing a surgical consult for the Gtube but it looks like the OR schedule is booked solid and they won't be able to fit Ollie in. One Dr is really trying to convince us (in a not so friendly way) about different things that "need to be tried" first. Like an NG tube(through the nose for nutrition) No, I'm sorry, but that's unnecessary. I am my child's advocate, and during the past 3 months I have learned A LOT about this disease and NG tubes are not the path for Ollie. We don't need to put him through the trauma and pain of an NG placement, we know he needs a Gtube. The trouble with MLD is that it's so rare, that we usually find that we know much more about the disease than most of the Drs he sees(other than his neurologist) We may only consider an NG if they really can't get his surgery done for a week and he doesn't do well on his swallow study and upper GI series he'll do tomorrow. (more about that tomorrow) But not with a "hey let's try this" medically invasive procedure attitude. Geez, he's 2 and very sick, let's not put him through anything we don't have to.

I'm sorry if this post sounds angry, but I really am angry, at one point today there were 6 Drs in the room and it was just too much, we were like a freak show and the one Dr. wasn't asking direct questions, she was saying "Tell us about why you're here." well, where do we start... We have repeated the same case history over and over and over during our 6 visits here over the past 3 months. I'm not joking, over 20 times. Read his history for goodness sake! It's very painful for us emotionally to have to retell how he slowly lost his ability to walk, crawl, sit up, talk and eat to different people every time we're here and multiple times per visit too. To retell about his seizures, previous MRIs, and medicines. Today when the fourth person asked me "what medicine is he currently taking? in the span of 30 minutes I actually laughed out loud! I said "I'm sorry, I didn't mean to laugh, but you're the fourth person to ask us that, it's a little crazy." She was very nice and I felt bad for laughing, but really, too much. I have definitely found my voice though, anyone that knows me personally knows that I'm usually pretty timid about talking to people I don't know or worse, asking people for things, I hate talking on the phone(I don't even like to call for pizza) but when it comes to taking care of Ollie I don't mess around. For example, the nurses usually come in every 4 hours to check vitals(heart rate, blood pressure etc), including 10pm, 2am and 6am. He was dehydrated, and he's doing much better now, we don't need his vitals every 4 hours and waking him up at 2am and taking 2 hours to fall back asleep only to have more vitals 2 hours later. So I told them not to come in while he's sleeping, just like that, and the nurse said "Okay, no problem." I didn't know I could do that! Haha, I wish I had asked at our 2 other overnight stays. So they checked him at 8pm and they aren't checking him again until he wakes up. Now I'm going to sleep. I apologize for the grammar and angry Katie that has run amuck through out this post. It's been a tough day.
Oliver is being is being admitted to Connecticut Children's hospital because we can't get him to eat or drink.

- Posted using BlogPress from my iPad

Sunday, July 29, 2012

A good day so far

Ollie has only been a little crabby today, and we've been able to get lots of smiles. Nana called to talk to him and he loves that, he thinks the phone is some kind of magic object and laughs in his funny way the entire time she talks.

We got him to eat almost 400 calories so far, which is a ton for him! He hasn't been chewing very well, so he's been most likely to eat if we offer him things like yogurt and applesauce. If we give him something he needs to chew (even if it's soft like macaroni and cheese-his favorite) he cries and lets the gross drooly food fall out of his mouth and right onto Mommy or Daddy. So fun!

He's going to need gtube surgery soon, he's been losing weight. He was 26.8 lbs at his 24 month check up and only 24.6 pounds the other day at 28 months. That's not good, he's fallen off the weight chart and we worry about him getting dehydrated since he really struggles with swallowing liquids(he coughs a lot) but he's been good thus far with wet dipes and all. We've been talking about the surgery with the neurologist and are trying to schedule it soon so that we can have it before he actually needs it, it's safer that way. Rather than have him wake up one morning having lost his ability to swallow completely and need to rush him in for emergency surgery. He's napping now, so I'm going to clean up this pigsty.

Daddy massages Ollie's legs and Ollie massages Daddy's face

Saturday, July 28, 2012

Fundraise with a simple "like"!

Calling all members of Oliver's Team!

 We have a great opportunity to win thousands of dollars for Oliver and MLD research. As of 1:00 on Saturday afternoon we are in the lead to win a facebook contest being thrown by the minor league Rock Cats baseball team here in CT. You all know how competitive I am, and this is for the closest cause to our hearts.

It's super simple, just follow the link below to the Rock Cats Facebook page (you'll need to be logged in to your Facebook account to vote) and look for the post on the charity voting.

Once you arrive on the page, scroll through the comments and look for the comment made by "Wendy Jolly Ciparelli" and "like" her comment. And that's it! 

The Rock Cats will donate $1 for every ticket purchased for their August 14th game to the charity with the most votes. The Rock Cats average attendance is 4,901 people, that's an awesome amount of money to win! We currently have 273 votes but I know if we work together and all ask even 5 friends to vote on Oliver's behalf, we will definitely win. Link them to the blog, cut and paste this post and email them, Facebook message them, whatever you like. Spread the word! The contest ends 8/3.

Make sure you are "liking" Wendy's comment, not just the original post itself. And also be sure you are not adding your own Oliver's Team comment.(which would split our votes and those won't count). Thank you so so much!


Oliver taking his "yum yums" (his medicines) and getting a leg massage

Thursday, July 26, 2012


Toys make me sad.

Every day I carry more and more toys down to the basement for storage, ones that Ollie no longer plays with. At first it was ride-on toys and other toys kids sit on. Shortly after that it was the more complex toys that required fine motor skills, such a puzzles and toys with small buttons. Now it seems like most every toy is finding itself moving downstairs, even toys he just received for his 2nd birthday, four short months ago.

In the past month Oliver has lost most of his meaningful arm control and doesn't reach for or grab things very often. For the most part his arms are kept pulled in towards his body, like he's getting ready for a fight. And although he wants to be independent so badly his version of "playing" now involves sitting and watching Chris and I play with his toys on his lap. Sometimes he laughs at us, and giggles when we make his toys kiss him or run up and down his leg. But sometimes he cries. He cries in frustration when he tries to join in but can't. He'll reach out to grab a toy but his shaky arms cause him to miss, he'll try to push the siren on one of his six firetrucks but his fine motor skills aren't precise enough to even push the buttons anymore. His body is failing him, he can't even play.

Today, while sitting in my lap, he looked up at me while we "played", and I've never seen such deep sadness in his beautiful blue eyes, he doesn't understand any of this, he's only two years old, it's as if he was saying to me "Why can't I do this anymore Mommy? Please help me." And I just kissed his head and apologized over and over, "I'm so sorry baby, I wish I could, more than anything I wish I could."


Tuesday, July 24, 2012

Not having the best two days, it seems we may need to up his medicines, though we're trying to figure out which ones, maybe all of them. The past two nights Ollie has been having strange and painful movements in his arms, whether they are seizures or muscle spasms we don't know yet. But we know they are causing him quite a bit of discomfort. His neurologist thinks they sound like seizures and has told us to double his dose of Keppra at night and schedule a sleep EEG. It's been taking us hours to get him to sleep at night. 2 hours last night, over 4 hours on Sunday night. He can be simply exhausted, he'll fall asleep, but within a minute or two the painful jerky motion in his arms wakes him up. We haven't been able to leave the house because he's been really uncomfortable in general. All he's comfortable enough to do right now is sit in the glider with one of us and read or watch TV.

Sunday, July 22, 2012

We miss his sweet voice

Ollie hasn't said Mama or Dada in over two weeks. He only says about 3 words a day now, all one syllable words. We can get him to say "Go" if we say to him "Ready, set..."

But there is no more "Get down Poppa", no more "firetruck", "cookie", "choo choo", or even "Elmo". There is no question that the saddest of all is no more "Love you Mama" or "Love you Dada". It breaks our hearts. Bit by bit this disease is taking him from us, and we have to watch it, helpless, knowing there is nothing we can do to stop it. We miss his sweet voice, true and beautiful music to our ears. The melody, so sing songy when he'd tell us his colors or count to 3 and clap for himself, the softness of his whisper when we were whispering to him first and he thought he was supposed to copy us, even his loud and boisterous "No!" We miss that one too. We miss the little boy who used to point and call out everything he saw when we'd drive in the car. "Car Mama! Truck Dada! Goooooo! Stop! Bye bye house. Bye bye Poppa." No more. Now we spend our days trying to figure out what he's asking for through his frustrated cries and tears. And when he's not crying, he sits silently, sometimes we all sit silently, missing the sound of sweet music that once filled our home.

Friday, July 20, 2012

Join Ollie at a Rock Cats Game

The Ciparelli family has been working with the New Britain Rock Cats to set up a game honoring Ollie on August 3rd with first pitch at 7:05 pm (Ollie may be involved in pre-game activities so be sure to come early). Tickets are only $10 and will be on sale until July 27th. Half of the admission of all tickets sold through the family (not purchased at the game or through the Rock Cats) will go to Ollie.

Tickets can be purchased through Wendy Ciparelli or any of the Ciparelli siblings. For questions or tickets call (860) 267-5874 or email ciparelliw@sbcglobal.net.

We'd love to see you there wearing blue to raise MLD awareness.

If he's up to it, Ollie will get to throw out the first pitch!

- Posted using BlogPress from my iPad

Wednesday, July 18, 2012

Another Magical Day

After a long night (fireworks at Epcot!) we slept in this morning and then put on more matching shirts. Ready for another day with Mickey and gang.

Before we went back to the Magic Kingdom, Kate and I decided it was time to put Oliver's star in the star tower. We knew this would be an emotional experience. Give Kids The World gives each child who stays there a star which they write their name on and then place it in a magical box. Overnight the star fairy comes and then places it on the ceiling with thousands of other stars for all the kids who have stayed there. It's overwhelming to see all of the stars representing so many kids just like Ollie and to know that his name will always be there. Kate and I did our best to hold it together but a few tears snuck out.

He also was able to create a wish pillow out of all his hopes and dreams. He pushed a magic button and a friendly, wise owl took him through the steps to turn his hopes into a pillow he would have forever.

Oliver's favorite part of Disney has been the character meet and greets. We've seen Mickey six times and hope to see him again tomorrow morning. I'd have to say that no one puts a smile on Ollie's face like Minnie.

This whole experience has made us cry so often in both joy and sadness. Everyone who has interacted with Ollie has done as much as they could to make him smile and make his day a little brighter. The volunteers at GKTW have been amazing and really do their best to make the experience special for the kids. The memories from the past few weeks will always be with us and we really can't thank everyone involved enough.
- Posted using BlogPress from my iPad

Sunday, July 15, 2012

A Magical Day

We are incredibly tired from a long day, so instead of writing I will let the pictures speak for themselves. Goodnight!

Saturday, July 14, 2012

Universal Studios

This morning we went to Universal Studios and we had an awesome time! A big part of that was the special pass Oliver got to bypass all the lines, he was treated like royalty! We were also very impressed with how simple it was for him to be allowed to use his stroller as a wheelchair, and thus be able to bring it anywhere a wheelchair can go, and not have to "park it" out front and carry him everywhere (when he gets tired he is a real sack of potatoes) We simply asked at Guest Services, and they printed us a card, took less than a minute and it was really helpful.

We went on Despicable Me Minion Mayhem, Shrek 4-D and Disaster. (this was his favorite, he liked the rumbling and rocking of the subway car). We also walked around Curious George Goes to Town but Ollie was getting sleepy at this point and wasn't paying much attention to his best little monkey buddy. As we were leaving we walked right past the Simpsons family and had our picture taken.

My parents plane just landed and are heading to The Polynesian Resort in WDW now, we're meeting them for a character dinner at Chef Mickey's later. Right now it is nap time.... for all three of us.

Shrek is funny

"I do not like this Dad"

"Ahhh time to cool down!"

Too tired and hot to enjoy his best buddy

Slept right through meeting the Simpsons


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Thursday, July 12, 2012

A Little Bit of History

Today we visited the Castillo De San Marcos, which was constructed in 1672 to protect the city of St. Augustine from invasion. It is one of only two fortifications in the world built out of a semi-rare form of limestone called coquina (The other is Fort Matanzas National Monument 14 miles south). After we purchased our tickets we were kindly asked not to sit on any of the cannons, so Oliver the rebel sat on a this instead....

He's such a trouble maker...

He was locked up for his insubordination

Daddy gives Oliver a history lesson

There will be a quiz on this later Ollie. To which Ollie replied that he'd rather be put back into that jail cell than take one of his Daddy's history quizzes.

He started to get very hot. Children with MLD have difficulty regulating their body temperatures. That's a small portable fan that clips onto his stroller. It's wonderful. And we just bought a few mist fans for Disney. We leave tomorrow for Orlando and Give Kids the World! We are very excited!

Don't sit on that cannon Uncle Steve

Ariel view of the fort

Monday, July 9, 2012

We've been having so much fun! Oliver's Uncle Steve and Uncle Billy drove all the way down to Florida to stay the week with us. They were here only a few hours before we headed to Oasis to eat dinner. We also went there the next morning for breakfast but who's keeping count?

Pool fun with Daddy

All the boys

Hanging out with Uncle Steve

Just before anembarrassing shuffleboard loss...

Kate makes dinner for the group(butternut squash ravioli)

Jacksonville Zoo today-It was so hot, even though we got there nice and early!

Ollie loved the train

"Those are snakes Dad!"

Ollie didn't nap very well today, despite being exhausted after going to the zoo this morning. He slept about 45 minutes and woke up very stiff and irritable. His neck seems to be hurting him a lot and when we tried to go out to dinner tonight he was miserable before we even pulled out of our parking space so the uncles are bringing us some take out from Sonny's BBQ instead.

We've been watching The Lion King and trying to get him comfortable. We gave him some medicine but even the smallest movement causes him to wince. This has happened before, and after a good rest he's felt better. Let's hope this is the case again.

Thursday, July 5, 2012

Happiness mixed with sadness

We had a lovely day yesterday. We spent our morning at the beach, and afterwards we ate lunch at a place called "Aunt Kate's". It overlooks the water and Ollie liked watching the boats. Chris had a fish wrap and I had blackened fish tacos. I've never had fish tacos before, how come nobody ever told me how delicious they are? I would have started eating them about 28 years sooner. Ollie had a cheese quesadilla, we tried to get him to order fish but he can't bring himself to eat any of Nemo's friends.

We watched the fireworks over the Castillo de San Marcos. They were beautiful, Oliver liked them even more than the fireworks on the ceiling of the limo. Each brilliant burst of color made him smile more than the last, and his eyes didn't leave the sky once during the 20 minute display. Talk about great toddler attention span.

We didn't even see the fireworks, not really, we took turns holding Oliver so that we could each watch HIM. We didn't stop smiling either, watching him enjoy something with such innocence, reveling in the simple joy of bright light and loud sound, was better than any fireworks display in the entire world. But at the same time it brought us an incredibly deep sense of sadness, because despite it all, and despite how hard we try to live in the moment, we could not stop wondering about the very real possibility of this being the last 4th of July display Oliver would ever be able to see.

But we can't allow ourselves to think like that, we can only think about the present, and presently we are about to go in the pool, which Oliver has been loving! Enjoy each moment and go give someone you love a hug and kiss.

Wednesday, July 4, 2012

More photos from the photo shoot

We have so many favorites! Here are a few of all three of us. Happy 4th of July everyone.