Have you seen your Nephrologist lately?

No, seriously, when was the last time you spoke with your Nephrologist? It's ok, you can admit it. It's been a while, hasn't it?

Obviously it has been for us, too. The pediatrician is recommending we speak to our family Nephrologist about Easton's high blood pressure. We tried to tell her it was just a side effect of his super-powers, but she didn't go for it.

But, it's been a while since we've seen the Nephro-doc. He's probably feeling lonely and left out.

Noticing a Trend

You remember our happy post from last week? We had a day of smiles and a few laughs with our little Easton. But then, he was back to his old 'zone-out' self again. 

Great News! The smiles were back today! What's the connection? The smiley day last week just happened to be when we ran out of his steroids. He was off them for one day, and magically he could smile and react to us. Then he went back on his steroids and we lost him again.

Now we're weaning him off the steroids and he's down to just one dose a day (instead of two). Again, magically we got our son back. Are you noticing a trend here?

Can't wait till he's done with them.

Blame the meds?

Easton has always had a higher than normal blood pressure. Not enough to be concerned about, but higher than normal. Now it seems to be going up. We're told it could be a side effect from some of the meds he's on, we're hoping that's the case. The most likely suspect is the steroid, which we are weaning him off right now. So we'll be able to see if that drops it down again. If not, who knows? It could be one of his super-powers . . .

My kid's missing his Hypsarrhythmia

Hypsarrhythmia? No that doesn't mean my kid lost his rhythm in his hips. Be serious here, he's my son. Of course he has rhythm in his hips. No, Hypsarrhythmia means a specific irregularity in your brain waves. And, believe it or not, even though it's a pretty cool word to say, it's not good. So not having it is a pretty good thing.

You see, he had it, and his little infantile spasms, and developmental stop came along with it. But he's been on medications, and has been under the watchful eye of our Heavenly Father, and now, they're gone. Which means we can wean him off of his steroids, though he'll stay on the anti-seizure meds for a while longer. 

Now, to be fair, there is a pretty good chance it will come back, and he may struggle with this for a while, but for now, they're gone. 

And, cue the celebration band.

Day full of Smiles

He Smiles!!!!

What a great day, Easton smiled MANY times!! We even got a few laughs out of him (it's been over a month since he's laughed).

And, due to medication, but mostly due to many prayers and fasts from many of you out there, he hasn't had a spasm since Sunday! We're elated! Huge thanks to everyone who fasted and prayed for our little Easton. And humble thanks to our Father in Heaven.

Today we had a consultation with the Neurologist, who decided to do another EEG tomorrow to see how he's doing. Till the results come back, we're sticking with the medication levels he's on. If the results come back good, with improvement and/or loss of the irregular brain waves, we'll wean him off the steroids.

Doc said that the kids rarely get back to their previous developmental level so quickly (and some never do). And yet, we see improvement from his pre-infantile spasm time. So that is very hopeful! We are so blessed!!

Love you all!