The Decline

The Decline

I apologize to my readers for my absence this week. I haven't spoken much about the present as I have our history. Lately, we've been having difficulties with AJ's health. On the surface he looks well and healthy, but on the inside he's struggling.

This week AJ had a few follow-up appointments, but I'll only be discussing two. The first one was his home palliative nurse. I expressed that since AJ had weaned off his Clonidine, his behavior changed.  I basically told her I had concerns he was beginning to experience symptoms similar to epilepsy. I explained that he's fussing for 3 hours or longer in one period sometimes twice but at least once a day, waking up out of his sleep screaming uncontrollably to the point where we cannot console him, and seemingly dazed more than usual. I told her AJ also went down on his G-Tube feeds of 5 ounces to 4 due to excessive baby acid reflex. During our discussion, she observed what appeared to be AJ having a focal seizure. She urged me to take him to see a Neurologist ASAP. I explained to her that I tried earlier in the year, but he was placed on a waitlist since the only available appointment was in July. She told me to call back and tell them it was urgent, and he needs to be seen sooner. So, I did just that and scheduled the appointment for next week.

The second appointment we had was at AJ's Pediatrician. As his vitals were being performed by the Doctors assistant, I realized that not much had changed in his weight, height, or head circumference. She checked what they were for his last examination in January, and they were the exact same. 26 inches in height, 15 pounds in weight, and a head size of 16 inches.

I can't express it, but this bothers me. I knew that with his chromosome disorder he would not grow as a normal 8-month-old, but it still feels different watching it in real time versus reading or hearing about it. I look back on videos of August, my one-year-old, and he's feeding himself, crawling and standing up with assistance of our furniture, and exploring what he likes and trying to figure out what he doesn't. I want that for AJ! He deserves that. Instead, my baby is not growing, he's down on feeds, and his health is declining. Honestly, I am scared. I am not ready, and I don't think there will come a time that I ever will be. I don't want to go much further with this blog for today, but please just keep my son in your thoughts.