We did take him to an ENT and they scoped his nose and throat to make sure the gagging/choking wasn’t due to anything structurally. It’s not. Everything looked healthy. I knew it would but we needed to rule it out for sure.

He cries and yells and gags/chokes for hours sometimes and was moving a lot. He’s started a new medication and it has helped some of the moving but not his agitation.. I’ve got some new peptides coming to try and see if they help.

I did have a woman in the FB ABI caregiver group reach out to me a couple weeks ago. She’s the only person in the group (even searching years back) whose loved one was similar to Niko. It seems everyone else is either better or worse than Niko. Niko is in the middle. Her son did do the gagging and she said that he eventually stopped but I don’t know how long it went on.  He also moves/rolls nonstop. They haven’t found anything that has helped yet. He’s had his ABI  2 1/2 years longer than Niko.

We started the neurofeedback. It was WAY more than he could handle.  They changed the program 3 times, cut the time down and he’s only doing it 2-3 times a week instead of 5-6.  He is more agitated later that evening afterwards but it’s less than it was when he started. I’ll be interested to see what his scan looks like after he finishes the first 20 sessions.

He’s going to Dr Dearing’s clinic in Cool Springs. He gets regular chiropractic adjustments once a week. I was surprised he could tolerate a regular adjustment but he likes them. He gets acupuncture, some leg exercises and sound and light therapy also during that visit. This coming week he’ll get HBOT once a week there in a hard chamber that is higher pressure than the one at home. We just started back in the one at home. He also wants to wear the oxygen sometimes at night. He shakes his head yes that it makes him feel better.

He can’t say anything anymore and gets very frustrated if I try to get him to make sounds. His eyes have lost some strength and float up more frequently. We’re trying to get him back to doing eye exercises but any exercise is difficult with his agitation.  He struggles sitting anywhere other than the floor, even in his wheelchair.

We seem to have found a small window into his short term memory. He sometimes remembers things and other times doesn’t. Dr Dearing is working on that.  

In all transparency, things are harder than I could’ve ever imagined. Not in my worst nightmares could I have come up with what we live day after day. I personally feel like 2 different people from minute to minute. I never knew you could feel hope and hopelessness at the same time, love and immense anger, faith and fear and endless questions with no answers …. Every emotion and it’s opposite all at the same time. I was at the end of my rope months ago but continue to take one step at a time, only by the power of God. I don’t know what else to do but keep trying to move forward. 

Still no nurse.

I’ve asked and keep pushing for a swallow study and I’m also pushing for stim therapy on his throat (for swallowing and speaking) that is only at Stallworth locally. I won’t stop pushing until someone agrees to do both.

I keep praying and ask the same from all of Niko’s Army. 

Love and appreciation to all of Niko’s Army!

#nikosarmyrocks

#nostoneunturned