Well the curse of Halloween got us again. On Thursday afternoon I received a call that Oliver has spiked a fever and that I should come pick him up. When I arrived at daycare he was flushed, panting, and looked completely miserable. Got him home and got some Tylenol in him, comforted him while he cried and called to get him into see his doctor that evening. After a full check nothing was found and they figured he just had a virus and to give him fluids and rest. We were worried (as always) that it was something more sinister like kidney stones or some other type of infection due to his history with neutropenia. All that worry was for nothing as we quickly found out it WAS just a bug when I got a call on Friday afternoon to come pick up Tobin, who had vomited several times and was miserable with flushed cheeks and a fever. Our family and Halloween just do not mix. Luckily, Tobin fell ill after his big Halloween parade at school and ended up recovering within about 8 hours. Jason came down with the bug on Sunday night, and I got it Monday morning. But WE DID NOT SPEND HALLOWEEN IN THE HOSPITAL! So at least we broke that streak. And, for the first time….I took my children trick or treating. Amazing. Oliver, still feeling sick, slept pretty much the whole time but allowed us to put his Octopus costume on. Tobin had a blast ringing all the doorbells and looking for other Buzz Lightyears. Jason was feeling increasingly sick as we walked around so we called it quits after about an hour and he went straight to bed while Tobin and I took candy inventory.
Oliver is just starting to feel better and drinking bottles again. We haven’t got him back to his regular keto meals yet so we actually have had a nice break from weighing and measuring the past few days! Now that he is on the mend we’ll get back on track with our butter and oil filled existence. Got some blood results back today and should have the rest by tomorrow. So far he is still in the normal range for neutrophils. They are on the lower end of normal, but still normal so that’s good. His cholesterol is fine and triglycerides are high (which is normal being on the diet). White blood count was low, which might be concerning but he was just starting with his virus when the blood was taken so it might not be anything. We will wait to hear the rest of the results and then find out if he’ll go up in his ratio to 3:5 to 1. We meet with our neuro next week and will discuss medication weaning. Very anxious to have him off the clonazepam.
Both boys have been waking randomly throughout the nights and for the past three days in a row, one of them has woken up at 5:51am exactly. I’m feeling pretty tired as I’m just getting over this flu bug thing myself and have been waking up during the night and early in the morning. Late next week Jason has to be out of town for work for 3 days so I’ll be alone with both boys for those days. I am hoping that Oliver stays healthy and that everything goes smoothly.
We had PT yesterday and the therapist mentioned that she thought we should ask Oliver’s neuro about a movement disorder. She said it almost seems as if his movements are rhythmical and dance like, similar to what you’d see in a person with a movement disorder….rather than him being unable to control his movements. So, when he lifts his head and dips it back down , he’s doing it on purpose and it’s not that he can’t hold his head up, it’s that he won’t. It’s an interesting theory and I’m not sure what to think of it. Because, when you face the facts…either way he can’t or won’t hold his head up and that makes life very difficult for all of us. We will mention it to his doctor next week and see what he thinks. As with anything I’m sure the answer will be “only time will tell”. Perhaps I’d like a psychic reading for Christmas?
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