6.30.2008

Go Tell Aunt Rhoady...

He's been awfully cranky. But he's also cutting teeth. Two at a time is his pattern.


I figured that explained the grumpy.


But it seemed like the cranky-ness continued coming up a notch. A little worse every day!


Until I finally noticed why.


Dr. ENT had warned me. But still...


it's nasty!


Trevy has an ear infection...again! That's 12 since November. Although...it's the 1st since his tubes.


Those very tubes allow the yucky to drain out for all the world to see.


We're talking Go Tell Aunt Rhoady Groady! Brown slime spilling out the ear groady!


But it's nothing a round of anti-biotics can't fix! And our early morning walk in with Dr. Pedi was VERY valuable. After reading Trevy's BEAM report she wants him to start receiving more services from Early Intervention. Just when I had started giving up on trying to bridge the gap between Trev's cute & the reality of his challenges too! More on that later though...

Tonight...I've got a cranky, gunky eared baby to tend...

10 comments:

Ian Marrey said...

Y'know for all the stuff I've had to go through with all my kids - ear infections are the one thing I have struggled with more than anything. Inconsolable they are, absolutely inconsolable.

Strange.

Get well soon little man.

baby trevor's mommy said...

What is it with the ears, huh?

Trev is usually so patient & easy going...except when it comes to the ears. As soon as he sees that little scope doc uses to peek inside he starts with the wailing!

I read Jude's post today...I'm SO happy that your home is filling with smiles again!I hope the sleep isn't too far behind!

...danielle

Shanna Grimes said...

EWE! Sorry to hear he has another ear infection. Ethan has another one of his eye infections. Too bad they can't fix those tubes. He gets them all the time!

I didn't realize that you weren't seeing an EI therapist. Kay not really making a lot of progess with EI, but we see one 2x's a week. She does new things, but the gap in months behind is widening. Hope it helps Trevy.

Feel better, little dude.

JSmith5780 said...

OK, I am going to second Shanna's EWE! Poor kiddo.

EI works IF and only IF they are getting tons of it. At the peak of Austin's delays he was seeing someone, either speech or special ed, every day. And remember it took nearly 2 years to get him back to near typical! He still has delays, he still gets therapy, but it was that early bombardment of services that made all the difference! Good luck to Kay and Trevy!

baby trevor's mommy said...

Shanna - Trev gets services from EI...but it's like a once a month monitering...making sure he's on target. Which his fine motor skills are behind...and his speech is non-exsistent. I know it's heart-breaking when you see your little one trying to make forward steps...but seeming stuck. Trev's speech has been that way forever. And even tho I celebrate the successes he does have (and I know you do too with Kay) it doesn't take away the pain of wishing he were just *typical*. Ugh...if that even makes sense!

Jen - Honestly, I've just really gotten frustrated with EI. It's like I've had to fight for every treatment...because these girls work with kids who are VERY challenged it's hard for them to see Trev as needing their help. Or maybe it's me...maybe I'm not doing a good job communicating the challenges Trev is facing. I told our pedi yesterday that yes, Trev looks fine...but that's only because he doesn't walk around with an EEG screen on his forehead! Ugh...anyway...maybe now that pedi is involved it'll get better?

...danielle

baby trevor's mommy said...

Shanna - Trev gets services from EI...but it's like a once a month monitering...making sure he's on target. Which his fine motor skills are behind...and his speech is non-exsistent. I know it's heart-breaking when you see your little one trying to make forward steps...but seeming stuck. Trev's speech has been that way forever. And even tho I celebrate the successes he does have (and I know you do too with Kay) it doesn't take away the pain of wishing he were just *typical*. Ugh...if that even makes sense!

Jen - Honestly, I've just really gotten frustrated with EI. It's like I've had to fight for every treatment...because these girls work with kids who are VERY challenged it's hard for them to see Trev as needing their help. Or maybe it's me...maybe I'm not doing a good job communicating the challenges Trev is facing. I told our pedi yesterday that yes, Trev looks fine...but that's only because he doesn't walk around with an EEG screen on his forehead! Ugh...anyway...maybe now that pedi is involved it'll get better?

...danielle

Molli Salzman said...

Danielle,
I had to fight for services for Charlie as well. When they evaluated him, they only recommended OT and PT every other week. He was 6 months and doing everythign that typical 6 month old do, but behind on gross motor. I thought he should have each weekly, and so did the neuro. I called EI and said the neuro recommends weekly OT and PT and they just asked for a letter or prescription from him, because the state pays for it. I know how it is. They think that everything is O.K. and he is just a little behind, but I want as much services as early as possible. I have an OT that is actually coming today, who is fantastic and she is the owner of her therapy company, Charlie is in great hands. BUT--we are STILL waiting for PT to come to the house! THe eval was done mid April. After 3 weeks of waiting, I asked for any type of service, so now we go to the hospital with a ped PT. I guess my point is...demand, demand demand! Good luck!!

baby trevor's mommy said...

Molli - It's just so frustrating, ya know!? But I did read one of your posts & it got me thinking. I've changed Trev's pedi because our original is fabulous...but has zero IS experience. Trev was his first case...and he was MY pedi! But our neuro has been very laid back too...she's approachable & wonderful & I still love her...it's just she's laid back & was okay with the once a month visits. I should be more agressive. I'm just SO tired! Ugh! And Trev has been making progress even w/o EI... I think it's partly because of his older sibs...they keep him busy trying to tag along with them! :O)

Anyway...thanks for the encouragment! You're right...I need to get my *pushy groove* on! :O)

...danielle

Molli Salzman said...

Charlie has 2 older brothers, who love him a little TOO much at times. He learns from them as well. I can tell from your posts how much you love your family and how much you are doing for Trevor. Actually, your blog was one of the first that I read along with Broc's when he was diagnosed. You seem to do a fantastic job.
Yesterday was our last ACTH injection. We said a prayer and gave him a kiss. His OT said today how well he really is doing, but he seems slightly agitated. He had bad "roid rage" from ACTH. Did your neuro ever tell you how long it took to get ACTH fully out of their system?
Take care,
Molli

baby trevor's mommy said...

Molli - Our neuro told us two weeks...altho honestly, other parents said it was a lot longer! Trev had a horrible time during the wean...not sleeping well...not eating well...just really grumpy. Some of that was ear infection too...we just couldn't seem to get rid of them.
Trev's Endocrinologist told us it would take a good 6 months for his cortisol levels to return to normal. Trev's are still slightly lower than he'd like to see. Just something extra to keep in mind. That's why a lot of parents (including us) choose to wait at least 6 months after ACTH to start vax-ing again.
The weaning time was really hard on me emotionally. After seeing Trevor go from 40 seizures a day to none...it just turned my stomache thinking that I was taking away the drug that had him SF.
I'm thrilled that Charlie is doing so well! Broc's site was the first one I found too! Their story is so beautiful...and filled with hope.
Anyway...I'm realizing I should have just emailed you! lol
Good luck...I'm praying for you & Charlie!

...danielle