Supporting Epilepsy Around the World - Purple Day

On March 26th, people all around the world are encouraged to wear purple in support of Epilepsy Awareness Day. Get involved and show your support!!

Here are a few important facts about Epilepsy:

• Approximately one in ten people will experience at least one seizure during a lifetime. A single seizure, however, is not epilepsy. Epilepsy is a condition that is defined by multiple seizures.
• Seizures cause a change in function or behavior. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or a convulsion.
• An estimated 50 million people worldwide have epilepsy. That means approximately one percent of the general population has epilepsy.

First Aid for Seizures

Generalized Tonic Clonic Seizure

In convulsive (tonic-clonic or grand mal) seizures, the individual loses consciousness and falls. The body is initially rigid (tonic phase). In the clonic phase, the arms and legs jerk or twitch rhythmically. Consciousness is regained slowly.

• Stay calm.
• Time the seizure – Usually there is no need for a trip to the hospital, unless the seizure lasts longer than five minutes (not including the postictal phase), the person has more than one seizure in a row, or if a person is injured, pregnant, or has diabetes.
• Remove objects that may cause harm - clear the area of sharp or dangerous objects.
• Do not hold the person down or restrain their movement.
• Do not put anything in the person’s mouth: it is not possible for someone to swallow their tongue.
• Turn the person on his or her side as the seizure ends to allow saliva or other fluids to drain away and keep airway clear.
• Do not offer food or drink until the person is fully alert.
• Stay with the person until they are fully alert and thinking clearly. Reassure the person when consciousness returns.

Complex Partial Seizure

For someone with disturbance of consciousness and undirected behavior, such as mumbling or random movements including head turning or pulling at clothes:

• Speak calmly.
• Do not restrain, but gently guide the person away from danger.
• Stay with the person until he or she is fully alert.

Please note, the seizure and post seizure confusion may last as long as 20 minutes.

Absence Seizure (Petit Mal)

For momentary lapses of attention (absence or petit mal seizures) no first aid is needed; the seizures only last a few seconds. The individual may appear to be daydreaming. Because these seizures are so mild looking, they may go undiagnosed. If you suspect someone of having absence seizures, bring it to the attention of an appropriate person.

There are many types of seizures from the ones listed above to absent seizures, tiny twitches to infantile spasms (this is what Daniel suffers from currently). Regardless of the name of the seizure, they are all scary to see and even more so to experience.

To find out more about Purple Day and what it means, visit the site by clicking the link. Here is another cool kid, Cassidy Megan who is making a difference in this world.

We have made a few Purple Day T-shirts to show our support.  Let us know if you would like to purchase one.

A bad case of guilt, why's and the what if's?

When does the overwhelming guilt stop?
When does the feeling of helplessness lessen?
When does the "what if's" go away?
When does the questioning yourself of "why this is happening to us? we're not bad people.."

Today I dropped Daniel off for school. In one part of my head I know he enjoys school, his teacher, and learning. He thrives on learning, show his a flashcard, ask him where colors are, spell something to him and he is hooked on you and does not want to stop.

In the other part of my head I wonder if he is thinking, "Why is she leaving me? Doesn't she want to be with me?". And I feel like I am abandoning him. I say bye bye to him and I'll see you in a while and he just looks at me with those big brown eyes. I am assuming he is ok with all of it.

But maybe he's not, he can't voice his opinion. Some people say if he wasn't happy he'd cry. Maybe he knows that his cries don't do any good and I won't understand him. Maybe he just sits in his wheelchair and thinks.."I can't say anything she doesn't understand that I don't want her to leave."

I don't know why today it hit me hard. Today was no different that any other day except that I cried all the way home. Just have this knot in my stomach, of this big ball of guilt. Guilt for not protecting him from all that is harmful, from not keeping the monsters away, for not keeping him healthy, for not doing everything humanly possible. Guilt for making him suffer with this brain malformation. Maybe if I had done something different when I was pregnant. Ate better, took better care of myself, if he felt loved enough, if I did something and this is suppose to be a punishment for me but God is making my child suffer instead. I know in my head that there was probably nothing I did wrong, that it was just a fluke. But there is always that little part of my brain that is so strong and it over rides all the other areas and says I am to blame. That I did something to hurt him, and now he must suffer his whole life.

There is the guilt that I don't do enough for him in the day. But I am torn between getting him all the therapies possible each day and just letting him be a little boy. If I let him be a little boy and watch tv or play with him, I feel like I am holding him back and if I put more hours of therapy in, maybe he would have been walking by now. Maybe he could talk more if I spent more time trying to get him to say words. But I don't want to constantly be asking him to repeat words because I don't want him to get frustrated when and if he is trying but it just doesn't come out. I don't want him to think I don't love him/like the way he is, because I do.

Maybe all these things I want for Daniel (walking, talking..) he doesn't want to do and when I push him during therapy, he is thinking I don't accept him? But if I don't push him, will he think I give up on him?

When does the guilt and the questioning of "why" and the "what if's" go away?

Littlest Heroes Project

This weekend Daniel had the privilege of getting his photo taken by Andrea from Mishka Photography, here is our "Sneak Peek"

A little bit about Andrea: She is one of the sweetest people we've met on our journey. She was so easy going, and pretty much let us do what we wanted, as many outfit changes as we needed. She'd let us take breaks if Daniel needed a rest. She acknowledged Daniel. That was an important part, walked right up to him, got to his level and talked to him. No uneasy feelings, no nervousness, and Daniel knew right away that she was "good people" and gave her his signature smile. Take a look at her blog and business web site. Her photos are awesome. She owns Mishka Photography, in Michigan and dedicates some of her time to the Littlest Heroes Project. I believe we were her first "Littlest Hero" client, and I will say..."She rocked!" She carted all of her gear and set up in our house. We didn't have to travel or do a thing!! How cool is that?!?! And she captured Daniel's personality with ease.

Littlest Heroes Project: This project is a non profit organization that started up last year by a high school student. Yep, a high school student...again, how cool is that? This project was created for children (1-21 yrs old) who suffer from serious illness or life altering disabilities. To see if your child qualifies or you know someone who does, check it out!

A few lines on the site says,

"This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses."

"We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about. But when everything is done, and either the child has reached the end of their battle, or has proven the odds against it many wish they had more time to stop, and capture the journey that they lived through for so long."

How true is that? Sometimes we just get so caught up in the day to day of having a special needs child, an ill child, fighting battles to get things for our children, stressing about being able to get back to that "normal" life you had before.

This experience with the Littlest Hero and Mishka Photography, let us stop for just a few hours. It let us relax, stop thinking about who we had to call to get something covered by insurance, about therapy, stressing on paying bills, and just let us enjoy each other and have fun while getting some pictures taken. The best thing ever...just being a family. Hopefully people see, we are just trying to be a normal family like they are.....we are a normal typical family, and sometimes its nice to just stop, enjoy each other and smile.

Take A Deep Breath....

We obviously survived the night at the hospital. I stepped outside my comfort zone and did the unthinkable (in my book). I begged Lonnie to do it but he refused. It was either me stepping outside my box, or suffering with Tweedle Dee and Tweedle Dum all night.

Regardless, we had to anyways....5 hours into the 24 hr. EEG I was going nuts with the room mates. Frustrated, is putting it mildly.

Daniel wasn't happy, Lonnie wasn't happy...I WAS NOT HAPPY. I don't think I've seen 3 people eat potato chips with such gusto as they were. It was obvious that no one ever taught them to chew with the mouth closed. I need to tell you these were not children. The guy getting the EEG was 16-18 yrs old. The older brother was in his early 20's and then the mom who couldn't control either of them.

So I came up with this thought....we already knew our course of action if there were seizures on this EEG. We would be starting the ACTH. So it was 4:15 p.m. and I ran to the neurology department and found the head nurse for Dr. C. Explained that no one was happy, could someone possibly go upstairs and look at what they had so far for Daniel's EEG. If there were seizures, unhook him and send us home there was no use in suffering for another 19 hours.
To my amazement, she didn't laugh in my face (see Lonnie I told you!). She said, let me see what I can do.

Less than 30 minutes later in walks a group of neurologist. I have to tell you at that point I was regretting asking because I was afraid they were going to tell me he did indeed have a seizure and send us home. Double edged sword...I wanted to go home, but I didn't want to find out Daniel was still having seizures. So for a brief minute or so, I wanted to tell them to back up out of the room, I wasn't ready to hear the bad news.

Good News/Bad News: Good News was that in the 5 hrs that Daniel had been hooked up, there were no seizures. Bad News, we had to stay the rest of the night with the room mates. But it made it a little more easier knowing he hadn't had any seizures yet.

So today I waited for the phone call/email from the hospital. They know we are anxiously awaiting the results. All of a sudden an email comes in with the Subject: Daniel EEG and I froze...I didn't want to read it....I was scared. Just stared at it for a couple minutes

Lines in Blue are from the nurse - Lines in Red are my thoughts

Ok – deep breath – (THIS IS WHERE I STARTED BRACING MYSELF FOR THE WORST NEWS)

no spasms!!! (YEA!!! Do the celebratory dance of joy) So - the vigabatrin is working.

There was a lot of interictal(between seizure) activity still – but that’s OK, as long as there aren’t any spasms. (Ok Stop Dancing now I'm confused....interictal activity (between seizures)...WHAT SEIZURES? I thought you just said no spasms. Does that mean he is having another kind of seizure? Care to explain to me in real simple terms what interictal activity is?

And – you are not pushy – just concerned, and I’m glad when I can relieve that even a little bit

(She said that because I apologized for being pushy and having someone come up to check something special for us.) I actually found out that she went and grabbed one of the doctors coming out of surgery and asked him to come check Daniel's EEG, he said fine but only have a few minutes before going back into another surgery. Pretty cool eh? Now I don't expect this to happen all the time, but the worse that could have happened when I asked was she could have said no. No actually she could have laughed at me....that would have been worse cause Lonnie wouldn't ever let me live it down!! But because I did do it, and got someone to look........I now rock, and I throw it in his face!! LOL

She definitely rocks in my book! She is one helpful person, she listens when you cry, she tells you things straight out and she is caring about my child. I appreciate that she is on our side. Now I just need to figure out what the one line means and we are good to go.

Wordless Wednesday

Hospital Deja Vu

We are in the hospital again for Daniel's VMR (Video EEG). Odd, but it seems like we've been here before? Not sure why?

Could it be....oh, we were just here last month? Seems vaguely familiar. Deja vu. Could it be because over the last 3 1/2 yrs, we've been here umpteen times? Can you tell how much I despise being here? Oh really I love it.... Can you hear the sarcasm through the computer?

This time seems to be extra special. Why you ask? Well I'll tell you. WE DON'T HAVE A ROOM BY OURSELVES!! This is the first time we are sharing a room. For those people who are in the hospital more frequently than others, lets review;

"Semi-Private Room Etiquette"

• You and your guests are NOT the only ones in the room, therefore it is inappropriate to have the volume on your television set to DEAFENING!
• Do NOT crank the heat up to sweltering on the thermostat. Your mouth flapping continuously will create enough energy to heat the room.
• It is NOT recommended that you have a mini family feud with your older brother about who got to play more of the frickin' handheld video game.
• While sharing a room, it is NOT kind to burp, belch, pass gas and then say "oooh that was a good one".
• That we use INSIDE voices (as in whispering) when other room mate is SLEEPING. Outside voices are meant for "outside"
• It is not appropriate to the you brother (who is the patient) that if he doesn't straighten up you're going to "beat the crap" out of him when you get home.
• It is inappropriate to use the "R" word every hour at least five times.
• When you get up to use the restroom...TRY to attempt to be quiet with the big block of wood hanging by the hinges...its called a door and when swung with force, it will slam.
• When the nurse comes it during the night, this is NOT a good time to share the knee-slapper of a story you have and laugh about it for the next 10 minutes.
• Nor do the next five people who walk by the door want to hear it either.
• DO NOT keep adjusting your bed every three seconds.....JUST PICK ...sitting up or laying down. WTF?!

We've only been here for 12 hours, I am sure to add to the above list before the night is over. I can feel it. And no I'm not being sarcastic. I always joke about which of us (Lonnie or myself) are going to make it home alive because we get so cranky with staying up for 24 hours, the stress of trying to keep Daniel happy while sitting in a bed for the same amount of time. This time I promised myself I would try extra hard not to snap at Lonnie for stuff. Then we get put in this room. This SHARED room. I can barely handle the noises of the person I love, and the hospital puts me in a very small room with three other people that I now have to contend with. Someone is punishing me, I know it.

If you look up the word Misanthrope you will see my picture, I can't stand people. Could be stress, or hormones, nerves, or that I'm getting a zit on my chin and we have a photo session on Saturday. Nope, perhaps... I think its just more of me being a B*tch. I want to be home with my son in out own space, in our own beds without Tweedle Dee and Tweedle Dum!

Daniel Von Whoopidoo

Meet Daniel Von Whoopidoo........

How cool does he look?? He is such a big boy, and loves trying new things! He won't use his posture walker, does not want to hold on to it. He wants to walk but not use his walker....at this time, it won't work! So we were trying to get him interested in doing it another way.
This is the first time he has used walking canes. He's learning to balance by reaching forward and making a toy piano play.
Here is Daniel in his Ti-lite manual wheelchair. For those "professionals" who didn't think he'd be able to understand and use his arms to move the wheelchair.......check out where his arms/hands are?!?!!? Daniel Von Whoopidoo!!!

On a bummer note: We should be in Chicago right now for our ABR 1st satellite training. We're not. We are fighting off the seizure monster instead. Bigger creature than I can wrap my arms around. Bigger nightmare than I ever experienced or that I wanted.

So to those who have recently gone to their ABR satellite- Yipee I'm happy for you guys......I hope you have continued success.....now share what you've learned! Come on don't be stingy!!!