Day 10 and Freedom!

After 10 very long days here at Childrens and a long 11 days total from being away from home and we finally get our discharge papers. It's been a long time coming. Well, not a long time coming per say but...it has been an interesting time away.

I miss my big kids. I cannot wait to hear all about the wonderful things and adventures they have had. We've picked them up a little present while we have been down here. Just something to let them know we've missed them. Because we have so that's not to bad. Going home means we can eat real food again. I can cook again. And bake. And just....be home. Get everyone back into their own routines, but being here, I hope will help Dinky learn to sleep through the noises of the house.

It's been just over 72 hours since he's had an episode. Success in our books! So now we have a schedule that we need to follow in regards to increasing one of his meds and decreasing another.

He's had a small battery of tests and blood work. It will be a couple of months before we know what it is exactly that he has. But having a diagnostic label won't change anything other then the help we cam get for him. I'm sure there will be a few frightening moments where we will feel helpless and hopeless, but those moments will pass.

Because regardless of what it is, Dinky is loved so very much by everyone and he knows it!!

Good news is our new neurologist also deals with genetics AND she has clinics in Terrace which is SO much closer to us! We do need to be back down here for July for followup appointments with the eye doctor here and the visual impairment specialist, but fingers crossed we can see Neuro closer to home in 6/8 weeks for a followup. I don't want to have to come back so soon.

All I can say is I am SO thankful that I am so in tune with him. We could have ignored the twitching and shudders. On his discharge sheet it gave us a small diagnosis of myolonic epilepsy. I'm going to be googling when I have more of a chance to check things out.

But for now, Dinky is doing really well. And that's all that matters. Whatever the future holds...

We will do this as a family. Through thick and thin.

Have I mentioned that my husby is SO wonderful? He's been a great pillar of support. And my parents. And his. I don't know what we would do without them.