We got on a trial thru Emory for a new medication to try and help control Tanner's seizures. For the first time in tanner's life, we saw positive results from something! At the beginning, Tanner's seizures had significantly decreased during the daytime. He was still having a lot of seizures at night though and seizing all night long, waking up a few times at least. BUT, it was a little progress. He started to come to life, seeming more aware, active, alert and talkative again. That only lasted a few weeks and in typical Tanner fashion, all hell broke loose again. As of today, I'm happy to report that his cluster seizures (spasms/myoclonics) are gone! so the medicine HAS helped. but he has started to confuse nighttime and daytime. he has awful tonic seizures now during the day and passes out, only to wake up around 1-2am and is then awake. His molars could be coming in and causing additional seizures, but we aren't sure because he can't express when he's in pain to us. he doesn't cry, he doesn't talk, he can't use his hands to even point to what hurts. welcome to the world of a special needs family! We got a new nighttime medicine approved for Tanner that we have been trying to get him on for awhile, so we will start that this Friday, and hope it solves some of this. We had such success when Tanner was on a lower dose of the new medicine, so the next step will be to lower the dose and see if that helps. Like I said, clusters are gone but come spend a full day in our household and try to imagine 3 years of watching your kid seize almost all day long, with rough, hard to watch tonic and tonic clonic seizures, trying 15-20 different AED's and steroids, 3-4 different CBD and THC oils, a very strict diet, a total holistic approach and a VNS surgery, and STILL having to watch him seize so bad his little body literally just passes out. You'd feel defeated too. Seizures are part of his disorder...the worst part. They will more than likely never go away, but what I wouldn't give to see the day where he is able to live a consistent life of only 1-2 seizures a day at most. To have any sort of seizure control. These seizures have left us feeling completely defeated. Yet we go on.
Terrified...(yet slightly excited). Tuesday, March 7, Tanner will begin school! He will start off with only going 1 day a week for 3 hours a day and we will work up to 2 and then 3 days a week, but 1 is all momma can currently handle. The school seems great and the teachers all very nice! He will be in the severe and profound classroom, so not just special needs pre-k but better, one on one attention. After multiple meetings, I actually feel more comfortable than I thought I would, but for the past 2 years, Tanner has been home every day. Brian and I work from home when we are in town so we get to see him all day! If he has a bad day, we are there to help. If he has a good day, we are there to witness it. If WE have a bad day, we get to see his sweet face and kiss him and feel better. He's now going to be in the custody of (at this point), complete strangers. He will not come home each Tuesday and tell me about his day. He will not tell me how much he loves his school friends and teachers. He will not tell me if he enjoyed playtime or therapy time. and most importantly, he will not tell me if he was mistreated.
When Tanner was first in the hospital at 3 months old, the doctors ran a ton of tests. blood work, MRI, EEG and spinal tap. they needed to put him under anesthesia for the MRI but planned on doing the spinal tap the morning following, with NO anesthesia. can you imagine how painful that would be! A spinal tap to an infant, with no warning and no anesthesia! I said, "over my dead body"! I argued and fought and convinced the 2 departments to work together and schedule both procedures while under anesthesia, one immediately following the other. I spoke up for my kid and protected him because that's what a mom/parent does. But how can I protect my child when I don't know if there's anything to protect him from? Tanner still feels. he still knows when he's loved and when he isn't. He still knows when someone cares about him and when someone is neglecting him. He still feels pain. How will I know. How will I know anything. Terrified is the only word I can think of, but it doesn't do justice to what I actually feel. I will shed a LOT of tears on Tuesday, happy for my baby boy to be growing up and experiencing new things. Happy that he will be in a classroom with peers and make friends. Happy for him to get to meet new therapists who will help him. But sad to let go, even if only for 3 hours. Sad to lose a little bit of control and not know how he spends every second of his day. So friends and family who are reading this, here's what I need:
prayers that Tanner's seizures begin to improve with these 2 new medicines. Prayers that Tanner gets back to restful and peaceful night sleeps. Prayers that he has a fun and enjoyable first day of school and every day of school following. Prayers that he is treated with love and compassion and patience. and Prayers that momma survives Tuesday! ;)