Things are looking up!

Things are looking up!  We took Easton to the Nephrologist (kidney doc), for high blood pressure.  They ran all sorts of tests and couldn't find out why it was high. They put him on meds, & told us we had to get it checked every week at the Pediatrician.  His blood pressure dropped back to normal within a couple of weeks & now they say he should soon be able to get rid of the blood pressure meds.  Yay!
Also, I took him to the neurologist this week and the doc says Easton is doing well.  I haven't noticed any seizures for almost 2 months.  He has another EEG scheduled.  If Easton's brain waves are normal they said he could get off the seizure meds,  if abnormal he'll be on them for another 6 months, and then do another EEG.  We feel so blessed.  Thank you for all of your thoughts & prayers
Interesting tidbit - every doctor we've been to asks us if Easton was born early (he was born a week late).  So many things coincide with a premee baby, even the high blood pressure thing.  So, whatever syndrome he may have, it seems to have slowed down his development while in the womb.

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!