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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