Walking on air.

>> Sunday, April 26, 2015

Feet shouldn't leave the ground? Ha! Kiss my...er...feet leaving the trampoline.

His little sister, Taylor, was celebrating her 10th birthday with a few friends at The wAIRhouse trampoline park. I thought it would be great for her and her friends, since Bug would probably sit upstairs with the pizza and water and the focus would be on her. Once she got into the park and onto the trampolines...we ceased to exist. As it should be. So we thought: this will be a breeze. But then something amazing happened.

Bug hasn't jumped spontaneously on his own for at least 7 years. He used to love to jump on trampolines, we even have a small one downstairs, but he wouldn't jump on it. We tried to entice him, show him it was there and drag him into it. He sat there. Would NOT jump.

This was entirely different. When Glenn got him onto the tramp, he realized immediately what it was and jumped. For an hour, off an on. He didn't fall once. NOT ONCE. He did trip once because he was looking away when he was stepping over the padding. But the rest of the time, and all the video we have shows that he adapted to compensate for the tramp.

Not only is he on the road home, he's jumping on it.  Happy almost birthday Taylor!


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The Road Home

>> Wednesday, April 22, 2015

Bug's seizures have calmed down now that he isn't as congested and sleeping better. Sitting at one a day for the last 4 days. I'll take it. Even more surprising; he let us do this:

Why is this a big deal? If you don't know, it takes effort and neurological 'muscle' to turn hands-up and sustain it. We have never been able to take a picture of his palms without holding his hands for him. AND we got 4 pictures of his hands open. His spinning toy was sitting next to him but he sat there while we photographed ...hands open. It stunned us.  Thank you Epidiloex. Thank you Cannabis.

About that....this last month the Idaho Senate passed a bill, (Senate Bill 1146)  the House Committee rejected and then REVERSED their decision on the bill, the House then passed this same bill and then, last week, the Governor vetoed the bill. Vetoed. And then he throws this gem out:

"Of course I sympathize with the heartbreaking dilemma facing some families trying to cope with the debilitating impacts of disease. They find themselves grasping for an answer - any answer that might help reduce or eliminate the pain and suffering, or that might provide some hope for a better, healthier future."

Well, of course he does (sympathize) no one wants to be the insensitive ass that says no to dying children.  His statement is not anything I haven't heard before but I still the feel need to share my thoughts on what this statement DOES NOT address.

First: There IS no dilemma. That ship has sailed. The research that exists, the children and families that have had access to and are using cannabis for various conditions are no longer being silent about it. They are telling their stories, sharing their good and their bad, it's all there, in the interwebs for any reasonable parent of a child with a severe and potentially life-threatening condition to peruse, cull and base their decision upon. It's everywhere and the nation has not yet fallen apart.  The question for legislators now is: how do you get ahead of it?

Not by negating its safety and efficacy for a variety of conditions, not when there are people standing in front of you testifying truthfully to its impact on their quality of life. You do it by allowing your citizenry access and you follow their progress. You partner with the people that have placed their trust in you to continue to trust YOU to watch out for their best interest. By slyly saying: I do not believe you, you are calling people liars, people who have NOTHING to gain BUT hope for an improved quality of life.

Parents are now becoming criminals. It's that simple. They are not going to be dissuaded for any reason, from trying a cannabis-based treatment. They are now willing to take it further then ever before, just so they can rule it out. And guess what? They are completely OK with it. You forget, these same parents have held the hand of their dying child, helpless to do anything, they have heard the words 'kidney failure' and had to stop the drug that was helping the most with seizures because it was killing their child. They have buried their children and will NOT let that happen again.

Second: If you have never heard 'Idiopathic', then there is NO way your platitude will placate those that have. Stay away from even alluding that you know what I, what WE are going through.  WE came to YOU to help with our problem and we provided the very reasonable, scientific-backed solution and you say only that you understand the desperation? What? If you did, you would NOT say we are grasping as if we should be doing something else.

Third: Hiding is never done from a position of strength. And by saying there is no research to support the request from parents and patients is not just a lie but a denial of facts in hand. Let me provide you with a link to research we compiled a little while ago for those of you that haven't learned how to use Google yet:

http://hope4childrenwithepilepsy.com/research-links/

And lastly: I give you Glenn, my son, the light in my day. Glenn, who has found his way home.

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It's called being strong. And it sucks.

>> Friday, April 17, 2015

There's not knowing and then there's knowing you will never know. The difference is very maddening.

Years of waiting, of researching, of studying, almost a decade of being overlooked and heartbroken and still....waiting more. Of proving that Mother's intuition kicks ass.

Years of repressing the anger, of crying in private and holding him while he seizes. Thousands upon thousands of diaper changes and seizures. 9 years of watching helplessly while his brain is exposed to the training and changes that lead to continual seizing.

In order to feel like I am doing something, since every time I deal with a medical professional for my OWN child we get swept under the rug making me feel it's all hopeless and worthless, I began to do something to make me feel like my experience can help others. But lately I don't see the benefit.

I watched him seize this morning and I thought: this will never end until it really ends.

The highs and lows are taking their toll. I feel it, and I am almost done repressing it, of pretending I am strong enough to swallow the sadness and still be happy.  But the reality is: I have no choice in the matter so why not just keep doing all the sames things, getting the same responses, and making the same choices? Why not just let it go and accept the fate of whatever this unknown is? Is that in me? Am I capable of that?

I just miss him too much. :(

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Oh, the sickie

>> Thursday, April 16, 2015

Game on hold.

Whenever Bug is sick, we know what that does to his seizure threshold. This one is no different. He's miserable but NO fever which means: no relief from seizures.

Watching him sick is depressing. And I do NOT say that flippantly. It really is. He struggles to play, but then falls asleep, his nose runs everywhere and he doesn't eat...and then...he seizes. The world really does slow down dramatically when he is ill, it has to so we can make sure he doesn't get hurt. Because when he does want to stand up and move around, he falls over, or hurts his foot. We were on broken foot watch for a few hours yesterday.

He had been asleep on the couch and then decided to wake up and try to walk. He stumbled a bit and, while trying to walk, put his foot under the couch. The couch has a wooden frame and, of course, that's where he put his foot. Then he fell over. I lunged to the floor to move the toys and grabbed him. I had to pull his foot out from under the couch and that's when I heard the little whimper. I was gently pulling his foot out, it didn't get caught, he just levered the top of his foot against the wood and scraped it up a little. But the whimpering. He had a furrowed brow and was just making the saddest little noises. I thought: damn. he broke it again. But after a few hours he was walking around normally. Cast: averted.

It just rips my heart out watching him lay there. Other children try to get up and play and mostly, they shake it off. It's gross but not pathetic. Bug is pathetic and sad and drools out a lot of his meds. There is no comfort he will accept and no relief that works. He will be like this for a week. A week. No matter the illness, a week.

I hate this.

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I give up.

>> Tuesday, April 7, 2015

December Ride to PCH
for broken jaw.
5 seizures in the last 12 hours. Why so different? Did he spit out his meds? Drool them out while he slept? Is it allergies? What the hell changes from NO seizures to off the hook seizures? And now, 2 hours later he is smiling at me and being my little pal.

The one at 8:30am was a doozy too. I was sure he didn't know who I was after it. He looked so lost and so frail. He looked confused. sad and tired. And I thought: I'm tired too buddy.  I don't want to be a part of this epilepsy thing anymore. I'm tired of kicking against the status quo, trying to show the world that epilepsy needs more attention all while just trying to get people who LIVE with epilepsy to say: Hey! I have epilepsy. How can we raise awareness and get research grants if you won't step up and say you need help?!

Parents who won't say epilepsy but argue that their child has a seizure disorder and that's 'not the same'.  It's not? How is it not? Oh yeah, WebMD told you so:


"Seizure disorder is a general term used to describe any condition in which seizures may be a symptom. Seizure disorder is a general term that it is often used in place of the term 'epilepsy.'"

And there are the people who think that EVERY little thing that is done, is done to upset them, and to make them feel badly. Suck it up buttercup: It's not ALL about you. Stop whining and hiding and blaming everyone else...get over yourself already. If you aren't in there making the decisions, you can NOT complain about the outcome. When you walk away...be done. Don't just stand there lying and stirring the pot. When it comes down to it, I would have NO problem walking away tomorrow. NONE. I would be DONE and I would not bad talk the people that picked up the pieces I left. But I made a promise and I will see it through.

Group after group popping up to support epilepsy and the one group that COULD bring them all together isn't interested in working WITH people but getting them in line.  Get a grip folks: Epilepsy sucks and we are ALL in this together, choke back your ego's and see the big picture.

While they are fighting amongst themselves to get noticed, we have NO REAL numbers about epilepsy. We can't even decide what to call epilepsy! For the love! People, it's not that hard: more than one unprovoked seizure. Why are we allowing epilepsy to be quantified by adding other criteria for diagnosis?

If you have seizures EVERY TIME your glucose is low...you would just be Diabetic. Oh, excuse me, a person with Diabetes.

If you have seizures every time you are around strobe lights, they would say you have photosensitive seizures.

If you have seizures every time you go from hot to cold or cold to hot, they might call it stress-induced seizures.

Why NOT call it epilepsy? Because there are factors that CAN be controlled to reduce the likelihood of the seizures? That's a cop out and it fudges the numbers because of fear.

What it really does is set people up to get no services. What do I mean? If you have seizure disorder and can't hold down a job, you will, most likely, apply for government assistance and you will, most likely be told: it sucks to be you. Why? Because seizure disorder is not on their list of diagnosis that qualify. But if you have a diagnosis of epilepsy....they give you the paperwork that you need to fill out or bring in, and you have a MUCH greater chance of getting services.

So while Doctors and Researchers are arguing about what to call epilepsy, people with epilepsy are losing out. Epilepsy is protected under the ADA, seizure disorder is not. One may argue that if they also have X condition then it would be. Ah, yes but it was X condition that qualified, not the seizures.

And I am very tired of this. I have seen thousands of seizures and spent thousands of hours trying to find out why. He has three diagnosis and none of them are the reason he still seizes. We are spending too much damn time arguing and not enough time learning from each other and moving forward. We are begging for money to help and that money is being spent on WHAT exactly? It's not research. And it sure as hell isn't on services to actually HELP people with epilepsy live their lives. But that's another post for another day.

Right now...I'm trying to figure out what is so damn different?




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And....

>> Monday, April 6, 2015

More of the same.

Not because of any actual results, but because the appointment was cancelled.

I have no words.

Actually, that isn't true, I do: typical. This is very very typical. Nothing with Bug is ever easy or proper or sane. It ALWAYS goes bad and then....months or years later we find that had we known earlier...things would be different.

So I ponder: what will this cost us?

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Easter and then some.

>> Sunday, April 5, 2015

Bug is doing pretty well, he is smiling and laughing when we tickle him, and he is just so much happier.

He hasn't seized, that we have seen, in 3 days. Which is really nice after the last two weeks he had. Nothing horrible just seizing daily. Still, when I want to take his picture and I call his name, he looks at me.

HE LOOKS AT ME!

You can not know how huge of a deal that is. How my heart smiles when he just turns his head. It's silly, it's simple and yet, it is amazing to have him back in our world after being so long in only his.

Easter was lost on him. He didn't look for his basket or eggs, he didn't want to open any candy. He just sat and played with his blue car, spinning the wheels.

And tomorrow is a big day. Or tomorrow is another day like every other day with nothing new to tell.

If it IS a big day, we may have some answers. His genetic information is available for viewing tomorrow (as if we didn't view it every day by just smiling at him). Tomorrow, the whole exome testing will be discussed.

I'm terrified, excited and...nervous. This is big. A REALLY REALLY big possibility for us. We have been looking for this for 9 years. Looking to find why he has so many markers for a genetic issue. Why he SHOULD test positive for Trisomy and doesn't. Why he is so damn healthy in EVERY other way but these seizures. He is so profoundly delayed and has so many really bad things neurologically, but he is healthy and strong. He has all these seizures, can not communicate (not just talk, but COMMUNICATE his needs or wants), he can not potty in the toilet, he can not understand danger. He wanders away, he will trust anyone and he does not understand the simplest of things. BUT...he has a strong heart, great lungs, perfect eyesight, decent hearing, can walk and run and eat and swallow and is not fragile in any way. And WHY? He SHOULD be fragile with all those delays. He SHOULD be completely breaking down, we expect it, but he isn't.  His geneticist at PCH was sure he had something but 'nothing comes to mind'. He recommended that we look into it more and then his Neurologist at the time said: It would be pointless. Hmph. So it really IS possible they will have some actual findings for us.

I want to hear: we found something. I want to hear: and we can do something about it. I want to hear: It's an anomaly and none of your other children have it.

I am prepared to hear: Unremarkable and within limits. It's what we are used to.

I have been doing what I can to ignore it, this pending realization of disappointment, possibility or despair. It has me reeling in so many ways. I shouldn't be so focused but there is so much to focus on! A million scenarios have been going through my mind, playing out in my subconscious while I sleep, I can not get away from it. At least, tomorrow, I put that part to rest. Either we will have some AH HA! Or we will have more of the same. The world may be different tomorrow and it may be more of the same with more action, nothing to do but see what we see.

Breathe. Breathe.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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