Friday, November 09, 2007

Bring it on.

(creepy, but sort of fitting picture isn't it?)

I’m just going to take the liberty of purging with one more downer post. Then I’ll stop complaining for a spell. Because after all, we've got so much to be thankful for! I never forget this beautiful fact.

Here’s the thing: Ethan is probably (I think definitely) apraxic. That is, he’s likely got a new diagnosis on the way of a developmental apraxia of speech. It’s a neurodevelopmental disorder that can be very serious. I’m in that mindset right now of facing a new foe, in full on warrior mode. I mentioned the possibility of apraxia awhile back and could barely deal with it then. Now I’m feeling resigned and ready for battle.

It’s extremely complex (for my pea brain) and I’ll share what I am learning more in future posts, especially as we have a true diagnosis and take steps to deal with it in therapy. I’m ready to request that Ethan’s local pediatrician sign off on some labs that I would like done so we can get a very clear picture of the biochemical state of Ethan’s gut, of his food allergies (such as milk, soy, gluten), possible malabsorption issues, vitamin and mineral deficiencies, etc. My research (from medical databases and experienced parents of apraxic children) shows a very strong correlation between apraxia and the health of the gut and intestines. So the hope is that fixing the gut will thereby fix the brain. I find it interesting that this is the same path that many parents and doctors of autistic children take to heal their children, and on paper Ethan shares many characteristics of autism.

Once the local pediatrician is on board with running these labs we will map our course. It’s nothing radical or experimental, just diet and supplement changes. We’ve already started the fish oil after many weeks of reading about brands and types of omegas. I’ve also found a new vitamin recommended by parents and DAN! (Defeat autism now) doctors that I ordered online this week.

One thing is for sure, we are prepared and ready to do battle and we’ve got one smart and strong-willed little boy fighting right along with us.

16 comments:

Jeannette said...

Aww. Hetha! What a strong family. I pray that you'll find the strength each day to take on each thing. I hope that the diet changes will help, too. I hear so many times how profoundly diet affects so many aspects of childhood, not to mention the kids with "extra stuff". It's astounding really.

Eileen said...

Heather,
You need to vent as much as you want! You are not being negative, you have been through so much, and I am glad you are "talking" about it. You my friend are amazing, all the research you are doing, on your own, it must be over whelming. I was trying to google some information and I got overwhelmed because there is so much! You are his biggest advocate, as always, but it would be nice if you had someone in the medical field who truly understood Ethan completely, and could help you navigate the system. I thing the diet changes are good, and I know they have helped a lot of people. Have you checked out Michelle's blog, Full Soul Ahead she has seen major changes in her daughter, with the diet changes. Her daughter is autistic, but the changes have been HUGE!! She actually use to see the doctor who started the diet changes, before she recently moved to Ohio. She still kept up the diet.
Also, you have probably checked this out before but the American Speech-Language-Hearing Assoc. (ASHA) www.asha.org has some info. that seems up to date. If you ever wanted to go there, it is in Maryland and you are welcome to stay at my mother in law's house, which is very close by. (It is very nice, and would not be a problem at all) They are in Rockville Maryland. But, you probably know that. It just seems it would be nice if you had one central place, that treated Ethan, or monitored him, for everything. I know that is hard in where you are, but at least all the different medical providers working with Ethan could all talk, and come up with one, common plan. Wishful thinking,I guess.
Bottom line, you, as always, are his best advocate, and I am in awe of you. It must get overwhelming at times. However, you know your beautiful son, and your gut feeling is always your best guide. In the end Ethan will lead the way, as he always does, surpassing expectations and growing and thriving. He has been through a lot in his young life, but he continues to make progress, maybe not on the time table set by professionals, but on his time table. Celebrate the progress and I really believe it is going to continue.
Ok, Heather, you are kind to let me babble on and on. Just know I am here, and thinking of you and E-boy. Sending love and prayers to the BEST mother I have ever met.
XOXOX

slouching mom said...

Yep, that picture is creepy.

I'm so sorry, Heather. But this is YOUR space. If you're down, be down in it. We'll still be here listening!

Your son is a fighter, and, as with everything else that's been thrown his way, he'll do battle with the apraxia, I'm sure.

Hugs to you.

Kyla said...

Vent, lady. Really. I know how you feel, like you don't want to be a downer...but from this side of the screen you NEVER seem like a downer. So allow yourself the space and freedom to talk about what is weighing on you. And if you don't want to do it here, my email is always open. ;)

flutter said...

You do, and he has some amazing parents.

Jennifer said...

Yeah, the picture is creepy, but it tickles me, I need it for my site ;). Don't worry one bit about being a downer...I've done my share of venting this week, and you've been such an incredible encouragement, just by being there with a kind word. I didn't realize that Ethan had such severe delays...I think I just thought that perhaps because of his deafness he was a little behind his peers speech-wise. I also didn't realize that apraxia had environmental/food-related ties...Ethan's blessed with a mom that's done all her homework and is ready to get in the ring and fight for him! I'll be interested in seeing what you find out...this fascinates me, as it's something I know very little about.
You, your hubby, and Ethan inspire me...just thought I'd let you know :) ((HUGS))

Mom to Toes said...

I LOVE how you are so well equipped to fight the battles that must be fought get Ethan what he needs in life.

He is a lucky boy - and was born to the perfect mom.

:D

KC said...

So agree with the others. Great mom, you. And if you do go to ASHA in Rockville, you MUST stay with us. We're 15 min away.

Hetha said...

Thanks so much you all. It is uplifting to have such support, and truly appreciated.

Rich works in Rockville on occasion, maybe I'll go with him the next time and check it out Eileen.

And if I do, I'll look you up KC and we can have a playdate!

jen said...

you have each other. you will figure this out. you will.

Kellan said...

Yes, if you need to tell about what all is going on with you and Ethan and with your family - this is the place to do it!!!! You have a lot on your plate and you are in my prayers! I am in awe of your strength and that little boy's strength - I pray it will all work out! Take Care.

Anonymous said...

Just to clarify, the ASHA headquarters in Rockville is sort of a corporate office. They don't do any clinical work at all, as far as I know. They are a great resource, and can point you in the right direction, but I don't think you'll get any help by actually going there.

Sarah said...

Your such a good mommy to Ethan, and your where he gets his strengh!

R@T said...

It has been too long since I have checked out the page and seen you two. And I even live here. So your kid looks like a cyborg... The next time you two are somewhere and people look at you funny just start making robot noises or some sort of beeping like the aliens you are...... Tell them that he is just getting used to the gravity and atmosphere and that the rest of his family will be ariving the next full moon. Joke 'em if they can't take a .........

Anonymous said...

Even if he has apraxia, can he still communicate with his sign language? My older kid never learned to talk, only signed, and now he is in college.

Loudest Mom on the Block said...

Vent away! (Have you seen my blog lately? It's all venting...sigh). It sounds like you are doing everything you need to, to get Ethan moving in the right direction. It's always disheartening to find that you have more 'mountains' than you thought you did though ((((hugs)))) We're facing potentially having to remove Trey's implant due to an abscess (from a simple ear infection)- I guess sometimes you just gotta roll w/ the punches and hope for the best (but it's NOT fun).

Hang in there, and again- Vent as much as you need to-
Melissa