Maddox started his ACTH treatment this week, and we are feeling super hopeful that this, combined with vigabatrin, will finally be successful. The first few days didn’t seem to change his mood much, but on Thursday I got a call from his daycare saying he was extremely fussy and they had tried everything. 

They ended up giving him the paci like I suggested, and he fell asleep shortly after. That evening, Thor and I tag-teamed snuggling him and giving him his paci because that was all he wanted. Yesterday he slept a lot. This is mimicking a lot of his behavior from the last steroid, so I’m not too concerned, we just have to power through the next few weeks. 

 We still haven’t scheduled the follow-up EEG because the scheduler has been out, but hopefully we’ll get that set up next week. 

On a happier note, Maddox also got the chair we’ve been waiting on from insurance, and it came much sooner than expected! My sister came over so he could be fitted in it, and I can’t wait to start using it today. The tray will be perfect for toys and playtime, and it’ll make feeding him purées so much easier since it’s higher up. 

The next piece of equipment we’re waiting on is his hand splints, which should be here in the next two weeks 🤞🏼. OT also sent in the script for a compression vest, so hopefully we can get that started soon. OT and PT also suggested a consultation for a helmet to help with head reshaping. His pediatrician wasn’t too concerned before, but it never hurts to get a second opinion, so we’re adding that to the list too. 

It’s all part of the journey, and we’re just taking it day by day over here. We are so incredibly thankful for the generous love, prayers, check-ins, and support we’ve been receiving, it truly means more to our family than we can put into words!💙