The adventure continues 🙂
Gman has been doing so well! We got to go to a family wedding in St. Louis a couple weekends ago. It was awesome to have family see him acting like a real kid! We only get to extended family a few times a year. They have seen the worst, the constantly seizing kids, the laying on the ground exhausted and loaded on medication kid, the all over the place ADHD kid. We tried to live life as normal as possible during the worst times, but what a delightful difference to be able to participate in the celebration like “normal”. His eyes are bright again! He smiles his HUGE smile often and loves to run and play. His physical strength continues to grow.
We had a very successful an easy wean off of Onfi. So Gabriel’s doctor gave us the green light to wean Valpo! Yippee! After this wean Gabriel will be down to 1 medication to control is his seizures! We view this as very good. The less medication the better!
We will be weaning for 4 weeks. We are two weeks in. Ironically this wean has not been smooth sailing. We were prepared for the Onfi wean to be rough, which it wasn’t. However, we were not prepared for Valpo to be tough.
It feels like we are once again back to that 2 year old super impulsive and hair trigger emotion stage and crazy sleep patterns. He is forgetting basic safety tips like not leaving the house without and adult or staying away from the hot stove. So we are back to lots of locked doors and no cooking on the stovetop unless 2 adults are home. He is awaking up and staying wide awake in the middle of the night again 🙁 Waaaaa! 🙂
At least the impulsiveness comes and goes. The ADHD medicine is not able to control everything but it still helping. I am higher alert than I have had to be for quite a while but I do feel like I can at least the leave the room for 30 seconds to go get something. Thankfully we have LOTS of great times. I would say on average his days are 50/50…balanced and normal kids verses my neurons are not firing correctly (emotional/impulsive)
He gets incredibly sad over small things. He will cry and scream not able to communicate what he needs. When he does finally get it out, it something like I put the Orange Juice on the wrong shelf. His frustration on these things doesn’t seem to be out of stubbornness but a sense that something is really wrong.
The sleep is the hardest for me. I think I have been able to sleep all the way through the night maybe 10 times in the last 2 years. Since we started ADHD medicine he usually wakes up 2 or 3 times a night but goes right back to sleep, not ideal but workable. The last week or so he is getting back to waking up and staying awake for a bit. Last night he was awake from midnight to 4 a.m. The lack of sleep is toughest because he is full steam ahead all day and I am exhausted. Then the impulsive things happen and I have no reserves to handle situations well.
HA! I just realized reading over this blog that the lack of sleep has Gabriel and I functioning about the same…50% of the time everything is good; 50% of the time I may or may not be able to think straight. I know this wean is the right thing and we will stay the course! After it is done we can reaccess his ADHD needs.