Wow…we left this blog on a downer for three whole months. Yikes. Thank God we’re back with hope in our hearts. It’s been a rough go, but Jackson has indeed risen again. He is using more spontaneous language than ever before. Hurrah!
Today, as I was driving Jackson into school and preparing to meet with his teacher for a mid-year review, I prayed a simple blessing over Jackson. I watched him in the rearview mirror, and as I prayed a huge smile crept across his face. I wrapped up my blessing with a cheerful, “Amen, Jack?” He gave a saucy grin and said, clear as day, “Yep!”
So…the past three months on our medical journey with Jackson have been focused on trying to figure out the why behind his serious regressions. He will go through a week or four making one to three word spontaneous requests, imitating practically everything we say, interacting, following directions, completing many routines almost independently, and then, BAM! He’ll wake up the next morning and look at me with that spacey look, pull me by the hand and stand helplessly. Waiting…unsure how to ask for the waffles he’s asked for over 100 times before. The words are just…gone.
I’ll shake my head at this altogether different boy standing in front of me who now couldn’t care less about interacting, would rather stim and stare and must be reminded 10 times that he’s in the bathroom because he supposed to “GO POTTY!”
Then slowly over the next days, weeks, and months we get it all back again. 0-10 spontaneous words expand to 15-20 a day, imitated language skyrockets. He’s an engaging, smiling, connected Jack again, and we even start moving forward, carefully, hopefully…waiting to see if this time it’ll stick.
Now the Neurologist tells us to “wait for another regression, and we’ll do a longer EEG” not knowing how crushing that waiting is. He’s ruled out brain tumors and brain damage with an MRI and metabolic disorders with lab tests, now he’s looking for seizures. Not the fall on the ground shaking kind (grand mal), but absence seizures, where the seizure-sufferer just blips out for a few seconds, staring into space, utterly disconnected, then returns. Apparently these absence seizures can cause regressions like we’re seeing in Jackson.
The problem? It’s one thing to see an engaged four-year old break off his conversation and eye contact for a few seconds mid-sentence, then resume as though nothing happened. How do you catch that when your four-year-old rarely GIVES the engaged eye contact and more than 10 single-word utterances in a single day? These 2-3 second blips are easy to miss when he’s more interested in staring at the socks he’s whipping madly back and forth in front of his face. Still…we have caught him staring and been unable to get his attention for several seconds: call his name, clap your hands, touch his face…no response. That’s cause enough for the Doctor to order an EEG. Now we just have to wait for the next downward dip that may indicate increased seizure activity. Not much to look forward to, but still something to hope for…
Do I hope for seizures? Not on your life. I just want an answer. Then we can move forward. I just want to move forward. I want to hear his voice again loud and clear. “Are you with me, Jack?” “YEP!”