RSV, a blizzard and a pancake

So we've had some eventful weeks lately. After spiking a fever last Tuesday, Oliver was seen at the pediatrician the following day and tested positive for the respiratory virus, RSV. After 2 breathing treatments at the doc's office, his oxygen levels were still low so they sent him to the ER. Tobin and I arrived to meet up with Oliver and Jason just as Oliver was getting an iv put in. Of course, our super deep veined baby was unable to have an iv placed, so all that trauma for nothing. After a couple hours of hanging out at the hospital they decided to admit Oliver because he's so incredibly medically fragile that nobody wanted to dismiss him without giving him lots of treatments to help him fight the virus.

After 5 days in the hospital filled with Respiratory therapy every 4 hours, Oliver was deemed healthy enough to return home...much to the dismay of Tobin who thoroughly enjoyed sleeping in the big bed with mom or dad , riding the bus to and from the hospital, taking the train to school and getting happy meals at the McDonald's in the hospital basement every night.

We are surely glad that Oliver fought and won his RSV battle last week because this week we had Chicago's 3rd largest snowstorm in history. In a mere 24 hours we received 20 inches of snow and experienced thunder/lightning, 70 mph winds and pieces of people's homes blowing down the street. We all weathered the storm (oh how I love puns) very well and had plenty of food and entertainment to keep us content.

While we were hanging around the house I decided to try a new food texture for Oliver. Being on the keto diet is a challenge because I like all in one, pureed meals for Oliver so that I am sure he gets every bite on the right ratio. But I want to expand his horizons and try new foods as well to teach him to chew. I decided pancakes might be a good idea.... but how do you make pancakes without carbs? grind up macademia nuts (high in fat and perfect for the keto diet), mix with a bit of egg, some oil , and a couple drops of unsweetened applesauce...and you have a keto pancake!

Oliver did great! He chewed and swallowed and didn't choke once. Because he is getting over being sick he has not been in the mood for food lately so he only ate a little bit of the pancake (but it was just a snack sized portion so it was ok to not finish it). I am excited to come up with some more new food ideas for the little guy.

Oliver had his neuro checkup yesterday but it was cancelled due to the blizzard. we are hoping to reschedule soon so that we can show the neuro some videos of Oliver's latest new suspected seizure type , talk about weaning the Sabril now that we're almost off Clonazepam (last crumb of a pill to be administered tomorrow night!), and figure out plans for going forward. We are wondering if we should have an EEG and then decide if we want to continue the diet or move on to a steroid based on results.

He has a developmental pediatrician appointment tomorrow morning. It's part of the early intervention program and we're hoping it will help us secure more services and equipment for him. It will be hard to hear the blunt truth about how delayed Oliver is. While we see it and live it every day, it's still hard to have discussions about it...even with each other.

Last night I was rubbing Oliver's back and he was just cuddled in bed next to me. These are my favorite moments..when he is calm and comfortable and soothed by my touch. I had a moment of being simultaneously so angry and upset for all he doesn't have while being grateful and feeling so blessed for how lucky we are. I hope this means I am moving past the stage of angry and bitter about all of this and will start to become more upbeat and optimistic about just loving Oliver for who he is and what he can do, rather than who he could be, should be and for all the things he'll never do. It's my ultimate goal in life to be more accepting and courageous and I am working very hard to see only the beauty in our lives.

Today Oliver is 16 months old. He has lived 16 wonderful months, and has been fairly healthy during most of them. His hospital time is limited compared to many kids with CDG, his seizures are far fewer compared to many kids with epilepsy. Despite some GI discomfort and trouble, he is overall healthy and content and a very easy baby. He sleeps wonderfully (perhaps because of his medications, but we count it as a blessing anyway), he enjoys being on his playmat, he lights up at the sound of his brother's voice and at the scratchy feel of his father's scruffy face, he laughs when you clap his hands for him, he will fiercely hold a spoon even if he's only drinking a bottle for dinner, he tries SO hard to roll over and wonders why his leg won't follow his upper body and then looks so proud of himself when you give his leg the final push it needs, he is the best cuddler of any other kid his age and he coos , sings, hums and babbles when he wakes up from naps.

At the time Oliver was diagnosed with CDG, a month after the infantile spasms diagnosis...I was the only one in the hospital room to hear it. I had to tell my husband that our baby had CDG and tell him all of the issues he would face because of it, that the seizures would be hard to control, that Oliver might not develop past the stage of a newborn and that he could have other complications and organ trouble down the road. He looked at Oliver and back at me and he said " But he's still ours". And that he is.