Fun December Ahead of Us

It's easy for us to see how different this Christmas will be, there is no denying it. The differences are huge. We are in a completely different world than last December. Last Christmas Ollie could walk around and say "Ho Ho Ho", he could sit on Santa's lap, he could talk about snow and presents. He could ride his roller coaster and eat Christmas cookies. This year, well, we strive every single day just to make him smile.

Although it may seem impossible, we're really trying to only focus on the holiday season we are in right now. We have so many fun things planned this December, starting as early as tomorrow.

The Scotty Fund, who has given so much to our family, is holding a Gala in Danbury. Ollie is going to have a "date" with our favorite nurse while we attend. We're also going to cut down our Christmas tree with Uncle Steve. On Sunday we're attending a Breakfast with Santa with our Dream Come True family (they sent Ollie on his dream trip to Disney). Next week our good friends Suz and Col are visiting. We also have Christmas parties with several great friends including the amazingly supportive Grimes family. (Chris' fellow Bethel track coach) We have the Ciparelli family party, and we'll also be heading to Long Island to see my family. We're going on the Polar Express Train with Santa with Ollie's cousins and Aunts and Uncles. And of course Santa is visiting Oliver on a firetruck. (That's a minimum of 3 Santa sightings if you've been counting.) :)

So while we could easily sit around and cry about how different this Christmas will be for our family, we won't. We're choosing not to. We will celebrate this Christmas like no other. We will laugh, hug, kiss and we will smile. We will shed tears, but it will still be amazing, just like our Oliver.

'Tis the season

Ollie Claus is starting to double-check his list. He hopes you've all been nice this year.







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Santa AND a firetruck?!?

We got a call from Sean at the New Milford Fire Department tonight. Apparently an amazing individual contacted them and told them about Oliver and his love of firetrucks. He called to let us know that on December 16th Santa would be coming to make a special visit to our sweet Oliver on a firetruck! How cool is that? Right now the only thing Oliver loves more than firetrucks is SANTA! All we have to do is say "Ho Ho Ho!" and his face lights up with a huge smile! We are so excited! I hope he's on Santa's "nice" list!

Here's our little sleeping Santa :) Oh and he's wearing his firetruck sweatshirt!




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First movie and great trip

Oliver saw his first movie on Friday, accompanied by almost 20 family members, including cousins, aunts, uncles and his great grandparents. We had a great time! We saw Skyfall. Yes, I know, not your typical first movie for a 2 year old, but you try convincing 20 adults to go to Finding Nemo 3D. ;) Ollie doesn't know or understand anything about violence/guns anyway. He doesn't have the processing capacity for it. His enjoyment came from the loud sounds, the car chases and being around so many people. Besides, he slept through two-thirds of the movie! We brought his cuddlebug wheelchair, but he only sat there for 2 minutes before we took him out and Chris held him throughout.




We had a great 3.5 day trip to Long Island. We weren't sure how being out of the house for so many days would go, but Ollie since birth has been a go-with-the-flow kind of kid, and this trip was no different.

The hardest part of the trip was actually the ferry trip to LI on Wednesday when he had two seizures and two diarrhea blow outs in the new van. After that the rest of the week was much better!

Ollie slept like an angel in his inflatable bed and was held and cuddled by the entire family. Including his Great Grandma and Poppy.












He was alert and awake for most of Thanksgiving except dinner itself. :) Here he is "eating" turkey. I had planned on drawing a turkey on his pediasure bag, but I forgot.




This Thanksgiving we are especially thankful to have the love and support from so many wonderful people. Thank you for being part of Oliver's Team.

Happy Thanksgiving everyone!




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Ollie's New Ride

After receiving Oliver's new wheelchair we quickly realized that putting it in and taking it out of our trunks would be no small task. The wheels would have to come off and the chair would have to be wrestled into the just wide enough opening.

So we decided that it was time to trade in Kate's car (affectionately known as "teal flash") and buy a van. We got a really good deal on a 2009 Sienna with only 14,000 miles on it. So far we're really happy with it.

Bye-bye teal flash! You served us well.




That's more like it.




Both mommy and Ollie are comfortable and smiling!




Oliver especially enjoys the leg room and us not bumping his head as we put him in and take him out of the car. In our other car his legs stick out between our two front seats and Kate continuously tickles them, so two thumbs up from Ollie.




Fold down seats make it much easier to bring my chair and wagon to Long Island for Thanksgiving.




We wouldn't have been able to make this purchase if it weren't for the generosity of our friends, family, and surrounding communities. We can't thank you all enough and feel so blessed to be supported by such wonderful people.

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Yah!

After putting the Klonopin back into Oliver's medicine routine he hasn't had another seizure! I just realized that it's really only been about 2.5 days since his last seizure, but it seems like much longer to us. I don't want to jinx it, but Oliver's been so much more comfortable and alert. Those seizures really wipe him out. He seems like he sees and thinks more clearly and can pay attention to what's going on around him, not so zonked out.

Other good news, his Cuddlebug stroller arrived Wednesday evening, and it's perfect. The features on this stroller rival a top of the line car! It costs almost as much! Thank goodness insurance covered most of it.

Ollie took it for a cruise around the house with Dad. First Dad had to adjust all the straps:


"Hey Dada , whatcha doing?"

Then he broke indoor speed records around our house:



"outta my way Mama!"

Ollie's new set of wheels!



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look at that little smirk...




Ollie woke up this morning with no seizures. I really hope the rest of his day goes smoothly.

So many seizures

Oliver has now reached his maximum daily dose of Keppra and still having seizures! Every day. He's had at least 7 today. The nurse that works with his neurologist said over the phone that we're "walking the line" between controlling the seizures and sedating him. Well he's not sleeping all day and he's still having seizures, so we need to do something! Don't tell me those are his only options, seizures or sedation. There are many seizure medicines out there. She wants us to try to record a seizure and email it to her. That is much easier suggested than done, but we are trying.

Oliver is awake most of the day until he takes a 20 minute catnap and wakes up having seizures and we end up needing to use Valium and sometimes with morphine to stop the seizure cycle, THEN he is tired. Between the seizures themselves and the medicines, he is out for at least 2 hours afterwards.

We need to get these under control!

To watch his tiny 27 pound body twist and contort, to watch tears stream down his face and his lips turn blue, to hear his screaming and whimpering afterwards. It's pure torture, what I wouldn't do to take his pain away.

He had a few seizures at PT today, and I tried to catch them on video but I only ended up getting the end and aftermath of one. I won't post a video of his seizure, it's too upsetting, but here is what a still photo looks like:
(clicking play won't work, it's a screen shot)

His hands and feet twist inwards, you can see his lips starting to turn purple. He doesn't breathe during his seizures.


Here is a video of the aftermath of the seizure:

I hold him so tightly in my arms, trying to fathom how one day I won't have him here to cuddle. That thought is impossible, I cannot process it, it's like trying to imagine the extent of our vast universe. You can try, but your brain can't fully comprehend light years, like I can't comprehend a life without Oliver. It's too big, it's too much. He's right here with me, I'm staring at his sleeping face and can smell his sweet breath.

He's right here, in my arms.

How can he ever be "gone"?

I spent my night rocking Ollie in his room. Painful muscle spasms keep waking him up and he needs lots of cuddles and rocking to fall back asleep. Our nurse gets here at 8 and she'll scoop him up, then I need someone to rock me to sleep!

MLD is an orphan disease.

An orphan disease is a disease so rare that the pharmaceutical industry will not adopt because the number of people suffering from the disease is too small to provide a financial incentive to make and market medications to treat it. Current MLD research is being done solely through donations and grants.

Show your support for Oliver's Team and all proceeds from these stickers will be donated to the MLD Foundation to help fund current MLD Research.
Current MLD Research

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Ollie has been running a low grade fever for two days. :( and every time he wakes up he has a few seizures. His seizures always happen when he's waking up, it's strange, but in a way I'm glad they're so predictable. It allows us to be ready with his meds when we hear him stirring in his bed. We'll run in and administer them right away. They've been lasting longer too, almost 30 seconds of back arching and screaming. They are the most horrible thing to watch as a parent, we're so helpless, there is nothing we can do but hold him and wait for each one to end and then pray that no more are coming.

What an awful way to wake up. Our poor baby.


I feel like I sleep with one eye open and one ear alert at all times. I never feel like I actually sleep.




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Bringing Oliver out to places can be a lot of fun, especially places like the aquarium or toy store, but recently we've been getting lots of stares and uncomfortable/uncertain faces in our direction. I try my best to ignore it, but it's there, people can't seem to help it. They're probably just wondering what's wrong with him, but rather than ask, or even smile kindly at us, some people stare and stare like he's some kind of weirdo. It makes me so angry! I even saw a woman today turn to her friend, put her hand over her mouth, and whisper something. Hello! I can see you, you're 5 feet away!

Last week coming out of Kohls a woman stopped and laughed at Oliver.

I don't think she realized he wasn't able to walk on his own. At least that's the only justification I can think of. I really hope that's the case. Maybe she thought we were just pushing our toddler around like a king, in a wheelchair with head supports and a pillow underneath his legs? It was so bizarre. She was carrying a young baby of her own and she actually stopped walking, looked down at Oliver and up at us and started laughing! I wasn't sure whether to yell or cry, but before I could even think she was already out the door.

It ruined my day. That weird woman got to go home and cuddle her healthy little girl and I went home and cuddled my terminally ill son who she had laughed at.

Amazing Daddy plays the guitar while holding Oliver William.

Halloween

Oliver had a great Halloween. We were able to go trick or treating and he even went on the hayride twice!

Showing we were excited to go Trick or Treating. Ollie just thought we were crazy. We all wore one of Ollie's many animal hats!

We rode the hayride twice!

Can we do this every night Dad?

Collecting candy

Collecting hugs

I would stay like this for a thousand years if I could.

I found this bag of pancakes deep in our freezer, it must have been from April before he was diagnosed. Oliver loved pancakes so much that we use to make huge batches like this to freeze. A few mornings a week we'd warm some up for him. We'd top them with fruit, sometimes we'd make smiley faces out of them with bananas and whipped cream. He'd devour them and always ask for more. They took exactly 22 seconds to heat in the microwave. 25 seconds and they'd get too tough and chewy, 20 seconds and they were still too cold.

This stupid bag of pancakes brought me to tears, it made me want to crawl into bed and stay there forever. I can be having a "normal" day and something like this reminds me that my life is a nightmare.

Oliver has been very tired recently, he sleeps on and off all day and sleeps most of the night. His breathing is strange quite often now, it's either rattly, shallow, too fast, too slow and he has periods of high pitched stidor breathing. It still worries us, but now it's his new normal. A horrible new normal.


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Daylight savings + last night's hockey game= very sleepy Ollie



I can't wait to post pictures from the hockey game last night, but as you can see, I'm a little preoccupied at the moment. :)

It was wonderful to see everyone and the love and support warmed our hearts. Thank you all so very, very much.



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