Nocturnal tc's

Damn these darn things!

They are back.

So is my disappointment.

I REALLY thought "this was it!" I knew it was a long shot, but I simply just had "that feeling!"

Jake, aside from the tc's, has been doing AWESOME, though! His critical thinking, memory, talking, and coordination are just amazing to me. I had thought he had been so much better for a while, so it is such an astonishment to see how much he can continue to improve and how resilant kids are!

I truly believe his attention is TONS better too. For the first time, maybe ever, he sat and we played a good 45 minutes worth of board games Sunday night. Usually, board games, would last maybe 5 minutes, and that was on a good day. For him to sit 45 minutes and stay on task, was nothing short of a miracle to me.

His teachers have been reporting similar stories at school.

He still has much room for improvement, but for now I will rejoice these baby steps.

Although, I am very pleased with the positive side effects of Jake's steroid treatment, unfortunately the seizures are back.
For the past two nights his seizure activity has been quite active. Last night he had at least 4 nocturnal tc's.

Nocturnal seizures are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.

Eventhough, he has had seizure activity and maybe even increased seizure activity, we are going to try and follow through with the rest of the 9 day wean of his oral steroid, prednisone.

Last night, as Addison and I watched meanigless tv and Jake fell into a slumber beside us, his seizures started. We were able to capture a couple on video. This is what we see several times on most nights.
(As this one seeems longer than many, you will see me swipe the "bump" on his chest. I used the magnet to activate the VNS, vegal nerve stimulator)
(


I see these in person quite often. But witnessing them on a screen, is pretty disturbing. I absolutely can NOT believe that I am watching my little baby boy. His contorted face and body, the weird noises, the helplessness....how is that my precious son?!

He has been battling this beast for about 18 months and I simply can't believe this is my son. I have watched him fall, bleed, cry, slur, drool, seize, and completely regress. I have accepted it all, but seeing it on a screen is absoutely unbelievable. There is no way I am watching my baby boy!


No matter how steep the mountain - the Lord is going to climb
it with you.
- Helen Steiner Rice