Atty's story: How can it be possible?

Thursday, May 27, 2010

How can it be possible?

I feel like I just woke up from a really bad dream.

The kind of dream that hangs around even after you've crawled out of bed and you just can't quite shake it off.

It feels weird, all that we went through, I find myself questioning the whole thing.

How can we be having seizure free days after non-stop seizures for months? It's been one stressful event after another since January. The ER visits, the hospitalizations, the falling, the bumps and bruises, bloody lips, medicines tried, medicines failed, phone calls, doctors appointments, blood draws, and on and on and on. It feels so deadly quiet now. I find myself not relaxed like I thought I would, but on edge like a lull in a storm, waiting to be hit again. Can it really just get better like this?

Things just can't go from what they were to what they are so fast. Can they? So it must be that I was startled awake and it was all just a bad dream. Such a surreal four months could not possibly have existed.

Except we have the pictures, and the scars, and the journals, and the follow up visits.

I need to shake this feeling off and keep on moving on. We have a whole new set of issues coming up...like potty training, behavioral issues, and speech therapy. As well as keeping this diet successful, which is the most important thing of all. It may be the end of one part of this (for the most part) but we still have a long ways to go.

3 comments:

Kat said...: I can imagine how you are still on edge. Like waiting for the other shoe to drop, so to speak.
But you also must remember, this was not an easy road. It didn't REALLY happen just overnight. Ya know? I suppose it kind of feels that way.
So amazing how much better he is feeling now. It seems that his body was "allergic" to certain foods, huh? And YOU were the one to research and find that out. SOOOO amazing. :)

Continued prayers!; May 30, 2010 at 8:04 PM
Liara said...: I hope it all continues to go in this direction. He is such a lucky little boy to have you as a mom, to care for him and to pour your heart into helping him get better. I will pray for you and your family that he outgrows these "allergies" or what ever they may be!; May 31, 2010 at 1:35 PM
lifebythehandful said...: It's been forever since I've been on here so I hopped over to your blog in hopes of some good news, saw the new link and am so happy for you and your fam. I have only a limited time, so I will have to come back, but I am praising God for such great news!; June 2, 2010 at 11:59 AM

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Side note and a little history~

Please NOTE that I am in No Way giving medical advice on this blog, and I am not a dietitian, so although I think it is a great idea to learn new things from others I also strongly believe that no one should blindly follow anyone. You should always do your own research. If you are making medical decisions ask a medical professional (or two or three). What works for our family will not necessarily work for yours. All recipes are simply suggestion that you should research or talk to your dietitian about before using. Remember as you are reading this blog that it is simply the journal of a tired mom searching for answers to her sons health problems and a place to document our journey. By sharing recipes as well I hope to inspire and help others out there in similar situations. :)

And now for a little history on Atty:

Atty was originally diagnosis with grand mal seizures after his first seizure in January of 2010. Now 6 medicines later, some of which failed miserable, none of them working optimally, I have been told that my child has intractable seizures . His seizures branched off from grand mal to include petit mal, tonic spasms, and drop attacks. As well as some that just seem to baffle everyone. He's had numerous hospital stays, appointments, a muscle biopsy, a spinal, more blood draws then I can count or care to remember, an MRI, a CAT Scan, an EKG and a few EEG's. During his last EEG they noted 60 seizure spikes in about 45 minutes. In April of 2010 he was not walking or sitting up on his own, he could barely talk, he was throwing up all the time, had lost an interest in food for the most part and was continually at risk of becoming dehydrated. My happy Atty was struggle to smile and instead cried the majority of the time he was awake. It was heart breaking. We were about to start the Ketogenic diet, but while waiting until our turn his dietitian started him on the Modified Atkins for seizures diet. What we have witnessed since then has been nothing short of a miracle! We are not sure if we are going to go all the way onto the Ketogenic diet now because what we are doing is already working wonders! I can hardly believe we have come so far so fast. I wish there was a good way to spread the word to give hope to more parents out there that were in the same place we were. More people should know about this because it truly has worked for many! My son is one of them!

Once again to make myself perfectly clear this blog is simply for me to journal our experience as we start down this new path together. I want Atty to know that I never stopped searching and I never gave up.

*To the world you may be only one person, but to one person, you may be the world.*