22 months!

You guys, if you hadn't already heard, Otis is AWESOME! But don't take my word for it. Check out this interview with Sir himself. 

O’s recovery from his surgery and the healing of this two incisions has gone really well. The incision sites never once seemed to bother him. We're so relieved that the scary part, the surgery, is behind us. Now we're just playing the waiting game. 

The vagus nerve stimulator (VNS) was activated on April 3, and we’ll be taking him back every 2 weeks for a while so they can increase the intensity of the signal that it sends up the vagus nerve to his brain. Tomorrow will be the next adjustment. It’s currently set to go off for 30 seconds, every 5 minutes. We have magnets that we keep with us at all times that we can wave over the device (just below his left collarbone) if we see him having seizures. Doing that will activate the device if it happens to be an off-cycle time. We haven’t really seen any changes in seizure activity yet, and it could be months and months before we do. Right now, we are just practicing patience! (emphasis on practicing)

While we haven't noticed any real changes in seizure control from the VNS just yet, Otis has been doing some amazing things since its activation. Just before the surgery, his awesome Tiny-K coach pointed out to us that Otis was very purposefully making his own sign for "more" (YAY!!!), which is HUGE. It means that we not only now know that he understands what we’re saying to him, but we know that HE now knows that there is a way for him to communicate back to us. We are SO proud of our little smartypants. Since the VNS activation, he has also begun to use his right hand more and more. The movements are still a bit awkward and clumsy, but it has been so incredible to watch him try to use it to assist his left hand. The other day, we looked over at him as he was sitting in his high chair and he was holding a toy IN HIS RIGHT HAND. I know that doesn't sound like such a big deal, but this is really really huge for Otis! We think the VNS must be helping to clean up some of the extra static (subclinical seizures--tiny "silent" seizures that we don't see, but are detected in his EEGs) in his brain.

He also seems so much much more alert, and we've seen quite a few more (non-seizure-related) smiles than we have in a very long time. Just last night when Ryan was playing with him, he discovered that Otis is ticklish! Ryan was tickling Otis's tummy, and O's response was to squeal, laugh, and squirm. Aside from an isolated incident a year ago when Otis was on his first round of Prednisolone, Otis has never shown any signs of being even the tiniest bit ticklish, no matter how hard we've tried. I don't think I am capable of sufficiently putting into words just how much these little things lift our spirits and fill our hearts with joy for the present and hope for what is to come.

Otis is now teething his 2nd year molars, so the rage we were seeing and blaming on his new seizure med was actually due to teething pain. Great job, Mom and Dad! Sometimes we get so caught up with the seizures and the diet and the drugs and the therapy that we forget about the normal kid stuff that's going on as well. This has been a good lesson on paying attention and staying present to that stuff along the way as well. For now, we are thankful for amber teething beads, Tylenol, and cold teethers (including this crazy Teethifier that we found at Babies R Us), celery, and carrot sticks. Otis also enjoys trying to grab our fingers and pull them to his mouth so he can chomp on them! Another good lesson we have pulled from all this: if you want to keep your fingers, keep them AWAY from Otis’s mouth!

Pre-surgery

Post-surgery

Wagon ride around the post-surgery observation unit

Snug as a bug

Headed home!

Recuperating

When I was a baby, I had a tee shirt (or was it a onesie?) that said "Teething is the Pits."
I think Otis would agree, and then some. You know what he also thinks is the pits? Waiting for his silly Mama and Daddy to catch on!

Playtime with Daddy and Uncle Taylor

Learning how to use those razor-sharp chompers for good (and not evil)

Gazing into his crystal ball...