Early Intervention

A couple of weeks ago 2 ladies came from Early Intervention to assess Easton's development.  They said his developmental level is at 2 months old.  So I've been carrying around a 19 pound 2 month old!  It's no wonder I feel like my muscles can't keep up with this kid.  He is a big boy, plus much more floppy than a 7 month old should be, and he doesn't hold his weight like he should at this point.  As a result, we have gotten to enjoy his baby stage for a lot longer than most people.  Especially when medications or sickness, like his recent croup, slow down his development.
Because of his lack of development, it feels like everyday is a celebration.  We notice the smallest improvements. He finally has been smiling more, laughing, cooing, getting excited and trying to reach for toys. He tries to hold up his head while lying on his belly and he can last a few seconds.  Then just today he started pulling his legs up in the air while lying on his back and turning to the side like he is trying to roll over.  I know, sounds simple, but just the act of pulling up his legs and trying to touch his toes with his hands is a huge accomplishment, especially when he usually just lays there like a puddle.  He gets to hear the whole family clap & cheer in excitement every time he lifts his head or his legs.
Excited Mom!

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!

Infantile Spasms

So, got a call back from the neurologist. Right now, we don't know anything. But they've classified the seizures as "infantile spasms". They've decided to put him on some steroids with the hopes of making the spasms go away. (now he's on 5 different medications, each with different restrictions on when they can be administered based on feeding times and such--my wife is amazing! I have no idea how she keeps up on all of that!)

Now, being the knowledge seeking parents that we are, we searched out all we could find out about "infantile spasms" . . . and didn't much like what we found. The Child Neurology Foundation put out a pretty detailed pamphlet on infantile spasms. They are characterized by an specific, but irregular brain wave pattern called hypsarrhythmia--which isn't present with epilepsy. Unfortunately, hypsarrhythmia is also strongly associated with cognitive impairment.

Another website, epilepsy.com, gave a less than positive outlook. It did say that the earlier the spasms are stopped, the better the outcome, but if they are a cause of a brain disorder (such as having nerve clusters in the frontal lobe and under-mylenation on the nerve cells??), then they have a higher likelihood of moderate to severe retardation.

Like I said, we don't know anything. We're just looking into possibilities and trying to learn as much as possible. One thing that has us worried is that taking steroids weakens your immune system. I know what you're thinking, perfect timing, right? Right smack dab in the middle of flu, whooping cough, rsv, pneumonia and every other nasty bug season. Please don't be offended if you don't see him much in the next little while, and please help us out by keeping your children away from him. Sorry, I know that's sad, but it's one more thing we don't want him to have to deal with.

Anyway, more doctor visits coming soon, and lots of prayers ongoing. 

Thanks to everyone for your concerns and prayers.