Wednesday, November 4, 2009

Epilepsy Awareness month

November is Epilepsy awareness month. I had no idea until Heather told us. As you know epilepsy is a huge part of Jaxsons life. His seizures started from hospital neglect, and they've pretty much taken over his life since then. He has intractable epilepsy, which pretty much means he has every kind of seizure and they not controlable. He has had infantile spasms, and every other seizure type you can imagine. The seizures that he has the most right now are not horrible, but he has them around 50 times a day. And his EEG shows a constant wave of seizure activity. This is why my almost 4 year old can't sit up, crawl, or even hold his head up. He is like a newborn. Epilepsy can be a devastating disease.

His life consists of constant EEG's
And I can never forget January 08 when his little brain went into full blown status (constant seizing) We almost lost him that month. The coma they put him into to stop his brain activity also stops other organs. His body filled with fluid, they were'nt able to ventilate him because his lungs were so full of fluid, and his blood pressures were non existant. But the warrior showed who is the strongest of them all, him.
(Sorry, the second pic is hard to look at)

So go here to learn about epilepsy and what it means for some kids. And find new ways to help seizures. We've tried every med, treatment, diet you can think of and nothing has helped so far.
I'm hoping to get Jaxson to a world renown doctor in California, in hopes that he can help my little man. Because like Heather said, I know he's in that little body, and if we can control the seizures we will see him blossom.


14 comments:

The VW's said...

Jaxson is definitely the definition of a fighter!!! He is one tough boy!

I pray that Jaxson's seizures can become controlled one day! It is so hard to watch your child having them! I'm thankful that Gavin's are mostly controlled. He still has ones where he gets into a daze and has a far away look in his eyes and he gets another kind every time he gets a cold, flu or sickness...but I can handle this.

Jax has surprised all of us before, so I bet he has more surprises up his sleeve as well! I just LOVE your little man!!! HUGS!

Tina said...

How terribly helpless one feels reading about Jaxson's seizures and what he has had to endure, epilepsy sure can be devastating. Like you said Jaxson is a warrior and he will show everyone just that. I do hope this doctor can help him, so that Jaxson may truely blossom. That is just such a cute picture of him sitting there looking all happy with himself, such a sweet angelic little face.

Rochelle said...

We will pray for that doctor to be an answer to your prayers and stop his seizures.
Thanks for always sharing with us, it brings knowledge to the world.

Kim Rees said...

Oh such a little Champ he is! You know you are always on my mind and in my prayers Lacey! I know that Jax is here for a reason and he's gonna keep on fighting! God love him!

The Lehnick Family said...

Oh, you have no idea how much you have affected my life...My heart aches for how much pain you have had to endure and little Jaxson...he is my HERO! Serioulsy...what a special spirit he is and has taught me so much! I too hope his seizures can be controlled some day...He looks wonderful in his most current picture...what a sweet handsome boy you have...

Emily said...

I second Darlena's comment. Jax is my hero too.

Ruby's Mom said...

My oldest son,who is now 23,used to have seizures when he was a baby.He was on phenabarbitol for 2 years to help control them.We finaly figured out it was his immunizations causing them,after we stopped the immunizations he stopped having the seizures.My 12 year old son had the same problem.Seizures are so scary.
Jaxson looks really good in that last photo :)

sturpin said...

Just when I was feeling a little down.....sweet Jax. What do I have to complain about? :)
He is an amazing little man. Thanks for sharing him with us.

sturpin said...

Just when I was feeling a little down.....sweet Jax. What do I have to complain about? :)
He is an amazing little man. Thanks for sharing him with us.

stephanie said...

Oh Lacey I so know Jax is in there and one day he is going to blossom for sure. I can see the twinkle in his eye! Sending kisses to those cheeks!!!

Cammie Heflin said...

Oh Jaxon, what a fighter you are! The pics are hard to look at but it's okay, it's part of Jaxon's life that we pray for everyday!

Alison said...

For some reason I don't think I had realised just how bad Jaxson's seizures are. It would be great if that doc in California could help.
Jaxson sure has an amazing spirit.

Conrad, Megan and Our Precious Keaton said...

Thank you for educating me on Epilepsy, I knew nothing about it! I agree with all the comments - Jaxson is a true fighter and the most awesome defenition of a hero! Big hugs to awesome Jax! God bless!

Sasha said...

Oh you sweat little boy what you have been through brings tears to my eyes. You are such a fighter!!! Keep up the fight!