It’s been about a week since the last Maddox update. I think I just needed that time to process the fact that another treatment didn’t work. Plus, as a family of five with two other kids, we’ve been busy. 

 

Tatum ended up getting strep last week and had a quick ER visit due to breathing issues from swollen tonsils and also had croup. Aspyn developed a fever today, so that was another doctor’s appointment. I honestly think we’ve seen a doctor almost every day since Maddox’s 9-month appointment. At this point, I feel like I could write a book about my series of unfortunate events 😵‍💫 

Last week, I spent a lot of time dealing with getting his new medication prescribed and delivered. It was supposed to be here Friday but got delayed, and we finally received it yesterday. 

We got trained tonight on how to properly give Maddox his ACTH injections, and I think Thor and I both feel pretty comfortable doing it now. 

Maddox was a CHAMP tonight and didn’t flinch or cry once while giving him his shot (which definitely made it easier on us). He will get two shots a day for the next two weeks, and then we will have a follow-up EEG (praying for good news). After that, we begin tapering down on the ACTH for another two weeks. Once that’s complete, another EEG. All of his EEGs have to be 12+ hours so the neurologist can capture a full picture. 

On Maddox’s last EEG last week, they did capture two physical spasms, and unfortunately, they have started up again. That’s why we are praying this treatment works. 

 

Maddox’s daycare will have to monitor his blood pressure and glucose three times a week (again, praying for no side effects). I really just hope this is all worth it for Maddox. There’s still so much unknown regarding the spasms, but we’re trying and hoping something works for him. 

 

I’m going to end this with a fun/positive note. We did purées for the first time at home tonight, pumpkin! Maddox did great and really seemed to enjoy it. We love this boy so much, and we will continue to do everything in our power to show him just how loved he is. 💛