Macsen has been learning lots of new words. His favorite thing now is to say "High five. Down low. Too slow" as he yanks his hand out of your reach and laughs. He's a little stinker. He's not eating nearly as well as he was when we first started the CBD oil but he isn't gagging on solids either. Maybe he is just being a typical picky 3yr old. He also seems a little sturdier going up and down stairs and in general - not falling nearly as much as he was a few months ago. I think he is getting stronger.
Nights are not great for us though. He still cries many times during the night - sometimes it's because he is having knee or foot pain and I have to rub his knee or his foot. It's always just 1 that hurts. Sometimes a heating pad or a middle of the night warm bath soothes him enough so he can finally fall back asleep but other times nothing helps. It's not every night of the month but sometimes it can be every night of a week and then we can go a week with no mystery pain. And he still drinks 1-3 bottles over night. We tried to cut them out but after a week of being up all night with him crying for milk Aaron and I were losing our minds and he was losing weight so we went back to letting him have them. Things we never did with our heart healthy girls we allow with him :( He's still so small if he wants something to eat or drink I always say yes.
Tonight while I was putting him to bed he got the hiccups. He was completely confused and I realized he hasn't had the hiccups since ... The last ones I remember were when I was pregnant with him. I wonder if the surgeries somehow messed up the mechanism that triggers hiccups and he's only now healed enough.... He kept saying "Uh oh Mama. They no go" bc they wouldn't stop lol.
He had an absolute blast bowling on Father's Day. We've been before and he was bored but this time he was always asking if it was his turn yet and was ready to shove his ball down the kiddie ball ramp towards the pins. It was the smar bowling alley we had our fundraiser at while we were pregnant for him. It's incredible to think back to those days of constant fear and doubt that we would ever get days like this with our boy. And here he is - bowling, drawing on himself, putting imaginary stuff together, learning, growing... We are truly blessed. 
So great to hear that, Alexandra! I am glad Macsen is doing well and enjoying life! Sorry about you bad nights! I hope this will pass soon so you get your night's rest again. Checking in with you guys every once in a while. Thank you for updating!
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