“Never say Never”
I can’t count # of times this saying has gone through my head in the last 2 years.
Last week we put Gabriel back on a medicine we had just weaned. WHAT?!?
Isn’t the goal to get him off all of these meds as long as we can remain seizure free?
Yep! That’s the goal and we are still seizure free-PRAISE GOD!
However, our sweet boy was a complete and total emotional wreck. He was spending literally hours a day in hysterical tears unable to calm himself.
We are few days away from it so I can laugh about it now, but he literally cried and cried for over an hour because he did not like the screws that were holding the door latch in place. 🙂 Oy VAY! 🙂
After TONS of research and conversations with his various teams we decided to put him back on Valpo (no longer for seizure control but temporarily for mood stabilization). Instant change for the better. 🙂 Never say Never.
We are still adjusting things and I I imagine will be for quite a while. He is still very emotionally fragile but at least now things that upset him make sense. We are in the process of adding a child psychiatrist to his ever expanding group of specialists working for his good.
This has been one of the hardest periods we have been through on our journey. I really struggle anytime I feel like we are loosing his personality and ability to function in the world. There are 3 distinct times this has happened. 1. When the seizures first started. 2. The first few weeks of the Keto diet. 3. The last few weeks. I am so thankful that things are seem to be moving in the right direction for now. Even if it means doing something I would have said we would “NEVER” do.
We have our follow up with the G-tube surgeon tomorrow, so I will post about that after our visit. The best news on that front is that Gabriel does not seem to have any pain associated from it anymore. 🙂 So far he is not at all self conscious about it either!
He is making great strides in both Occupational and Physical Therapy. He willingly practiced chewing, swallowing, and putting on shoes at his last OT appointment. Physical Therapist literally squealed with joy when he land an impromptu jump from one balancing contraption to another. It is something we wouldn’t have ever asked him to do. He totally surprised us by the jump but he STUCK the landing! GO G!. Never say Never 🙂