Friday, February 27, 2009

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


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.

Tuesday, February 24, 2009

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!

Friday, February 20, 2009

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 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 share what you've learned! Come on don't be stingy!!!

Thursday, February 19, 2009

Family Updates

Ok, so its been a while since I gave a family update, so here goes.

We'll start with "D": He makes me so proud with all the things he is doing. Even when just a mere hour ago he was laying with his face pressed up again mine, and he proceeded to belch in my ear and throw up. Awwww, how sweet.........vomit in the ear opening is such an awesome feeling. He makes me so proud!!
Daniel with his cool sunglasses

Daughter "T": uuugh she is growing up fast. Very proud of her grades and how she is holding her own during high school. She is quite the beauty, and has brains too!! And she loves her little brother and showing him off!

T & Daniel at her work
Daughter "B": College suits her. She is doing really well also. Growing up way too fast, and likes to remind me of that too!
B at school

Daughter "A": Well, she is ready to burst in a few weeks with her second baby boy. Her first is just shy of 18 months old and he is the splitting image of her. If it could be possible, I would have thought she created him on her own!!

A with C in her belly!!
Grandson "Z" : a real comedian! and as cute as a button. Tolerates Daniel running him over with his walker!

Z during a jazzercise break!
Grandson "C": still baking! :)

Daughter "C": Well, announced she is getting married in June of this year. AAAAAAAARGH!! What happened to when she was a little girl? Holy Cow, time flies!!

C with nephew Z
Daddy "L" Just had a birthday this more year and he's not going to be able to say he's in his 30's!!!

Aunt "A.P." : Moving to TEXAS, boo hoo but if
it makes her happy.

Aunt "M", "A", "R" and Uncle "G": are all walking in the 3 day Breast Cancer walk in August. I will be posting soon for people who would love to help out and donate to team Betty's Boobs!

Wednesday, February 18, 2009

Loud Shout Out To........"MEMPHIS' MOM!!"


This is a test of the Better Than Normal Blogging System. A blog-casters of your area in voluntary cooperation with the Fun, Silly, and local authorities have developed this system to keep you informed in the event of a shout out for Memphis' mom.

Ok, I couldn't think of any other way to get in touch with this mommy.
I read her blog all the time. She lives in the same state as we do, and her son goes through some of the same things Daniel does.

I CANNOT comment on her blog, she doesn't have that as an option!! Argh!!! I read what she writes, and I'm always connecting in some way but I have no way of telling her!!

Anyways--- so if you check this and you're Memphis Mom....and you feel like it, contact me.
I wanna exchange information with you!!

This concludes this test of the Emergency Broadcast System
We now return to the regular blog-casting system.

Winter Break

The kids are on winter break from school. A whole week off.
While some kids are going with their family on trips to Florida or warmer weather, we just choose to sleep in!!
Take some extra snuggle times, attempt to relax, and laying around watching movies.
The extra snuggles are the best part.
I am lucky that Daniel still tolerates them as much- Victoria on the other hand does not!

We're taking some time to "play" and get familiar with the new ECO that we have. (I will hopefully post a little video as soon as I figure out how to do things on it!)

Update on the potty attempts- he is doing so well! Goes every morning when I put him on. Has gone #2 multiple times now. We're slow to the gate on this, but we're getting there slow and steady.

ABR: This upcoming weekend is the first satellite training, and we're going to miss it. I am bummed about this, but I am trying to roll with the punches. We feel that we need to get these seizures controlled before we start to introduce new exercises. Now this is not the way ABR thinks. The exercises will help with the seizures in their eyes, and medicine is not the answer. But again it is our gut feeling that these types of seizures take priority over therapies of any kind. If we don't have seizure control, we will regress and no matter how much we've done at therapies, it will be gone. So because we are scheduled for a hospital stay (VMR and testing) during this time, we are opting to miss this session and go again in May to Montreal. We are also possibly going to be starting Daniel on ACTH in the next week, and we cannot afford him to get ill by being around a bunch of people. We pulled him out of school two days early last week because there was something nasty going around his class. Difficult decision but in the end, we feel we're doing the right thing for Daniel. We will continue to do the exercises taught to us in October, and hopefully we will not be too far behind.

Now, if you'll excuse me.....I'm off to snuggle with the little one! He makes me feel better when I'm outta sorts.

Tuesday, February 10, 2009

3 Guesses

You've got 3 guesses.

Mr. Fed Ex came to our door today delivering TWO boxes

...Addressed to Mr. Daniel...

Figured it out yet??

Inside these boxes,my friends,
is my little boys voice.

His thoughts...
his feelings...
his words.

And I cannot wait to listen.

Monday, February 9, 2009

Big Boy!!

We have been trying (half hearted or less) to potty train Daniel. Every morning before school about 20 minutes after he wakes up, I've been putting him on his potty seat. Then again at school the teacher puts him on at around 10:30. Sometimes he'll go pee-pee at school. Well EVERY morning when I put him on the potty he pees, and I make a big production out of it. I sing a special song that the whole family knows (and will sing to him!) and he gets to pick out a sticker. This is fun for him.

Well this morning I put him on the potty and he tinkled so I started to pick him up to get him dressed and he started to really fuss. Well just because he is non verbal doesn't mean he can't get his point across! So I promptly figured out he wanted to sit back on the potty, so I put him back and figured he still had to pee.....which he did, but he also went #2. Now, I don't generally celebrate when someone goes to the bathroom but the fact that he made a point to let me know he wasn't finished, and he went poopy on the potty.......THIS IS A HUGE DEAL!!!
He's gone pooh on the potty before but always because I could tell he had to go and I put him there. He let me so many words!

So he got TWO stickers. Yes two because I was so proud of him, and I kept telling him so all day long. He probably was thinking, "Sheesh, I just sat on the potty. Are we going to throw a party every time for Pete's sake!!"

I know you guys are probably shaking your heads and saying....."geez o'peas, this girl needs a life!"
Well I will further embarrass myself and tell you I don't have much excitement in my life because I actually got a little teary eyed afterwards!!! LOL

Friday, February 6, 2009

Current Sit-chew-a-tion (Seizure Control)

Looking for the positives of our current situation
  • There are no hyps current on the EEG
  • We seem to have caught it early
  • There has been no regression yet
  • He doesn't seem any worse off, he isn't grumpy or out of sorts
  • We have a good doctor who has treated Daniel for this before with success
  • Our support from family and outside is great
  • His teacher at school has read up on IS and is watching him closely and gives me daily updates.
  • He is still progressing with things he is currently learning, which is awesome. is doing really well with his colors/matching/sorting. Can follow directions and understands everything you tell him.
Here is the current action plan for treatment
  • In our 3rd week of Vigabatrin 500 mg 2x a day
  • Scheduling another 24 hr. VMR within the next 1-2 weeks
  • If VMR from February is better than January we will continue with Vigabatrin
  • If VMR from February is not better we will schedule to start taking 6 wk course of ACTH within the week
  • If ACTH is started we will start preliminary testing/blood work and have a hospital stay for 2 days to make sure he is handling medication OK.
Current Stats
  • 3 1/2 yr old
  • 42" tall (with shoes)
  • 36 lbs
  • cute as a button and loves to cuddle!
  • social butterfly
Current Medications/Side Effects
  • Vigabatrin (anti-seizure) 500 mg twice a day -1/20/09 First two weeks: Sleeping more. Seems to be in a constant state of laziness/drowsiness. Second week of full dose: Mood seems to be much better, not as lazy. Still taking a longer nap.
  • Robinul (drooling) 1mg twice a day - side effect - constipation
  • Prevacid (reflux) 15 mg meltable tablet - one time a day - none
  • Miralax (constipation) one cap a day- side effect - pooping!

Tuesday, February 3, 2009

West Syndrome, Infantile Spasms, Epileptic Spasms....WTF?

Sigh. Alright last night I typed up a post and kept it in draft mode. I wasn't sure I could explain things well enough, and without the emotions or negativity I was feeling. So this morning I deleted it and will give bullets of what we learned/did without the emotions/negativity.

  • West Syndrome, Infantile Spasms and Epileptic Spasms are all the same thing. All do the same amount of harm. All suck. This is how it was broken down for me. WS typically has these characteristics: spasms that come in clusters, hyppsarrthmia, regression. Infantile Spasms DO NOT have to have all three, but can have a mixture of them. For instance you can still have IS without having hyppsarrthmia. You can have Infantile Spasms on the EEG but not see them outwardly. Epileptic Spasms are the same thing as Infantile Spasms but because when the person is over a certain age, they now call it Epileptic Spasms. All suck. All have the same potential of robbing your child of what skills he has.
  • A VMR is basically two separate things run at the same time- the EEG, and the video. The EEG is run through a detection program on a computer. If certain criteria is seen, it is then flagged for the doctor of the EEG department. Dr. A. This doctor is not our neurologist, he just reads the reports and writes them up. Dr. A is who showed me the video of what he classified as Epileptic Spasms (IS/WS). Based off what he showed me I came home to research.
  • There are types of seizures that can be induced by certain things, ie: flashing lights.
  • As I stated in a prior post, the movement Dr. A showed me and called ES were something that Daniel has ALWAYS done. So to prove that I knew what I was talking about and to prove to Dr. A and Dr. C that the report was wrong, we induced this "spasm" and video taped it to show them yesterday. I had all the past reports and did my comparisons/said my whole spiel, showed my video, fought my fight. He listened to everything and let me say what I wanted, and when he first watched the video that we made, he said "sure looks like a spasms". I explained that watch longer, listen to the sound, you can hear me tell you that we are bringing balloons into the room, when Daniel will see them he will do this movement repeatedly, and yes they look like spasms, but we are controlling it, we start it and the minute we remove the balloons Daniel is fine, no more movements. He agreed...if we could make it happen and control it like that it was NOT a seizure. Looks like it, but is not. What we learned, don't judge a book by its cover. So I had a moment of glory. I proved Dr. A wrong.
  • Dr C. listened to me, listened to my explanation then proceeded to say in the nicest way possible; "regardless of what the video says, the EEG doesn't lie. We are not seeing correlation with the times you pressed the button so no, those aren't seizures, but he is indeed having epileptic spasms in clusters but they are just not manifesting in an outward fashion for us to see. As much as I think he wanted to tell me they weren't seizures, he did it in the nicest way possible. And he listened to me. He answered all my questions, explained our options, and gave me the time. I might not have liked what he said, but he took the time to explain in a way that I could understand, wrap my arms around. So I don't like what he has to say, but I trust him in the fact that he knows what he is doing and he is looking out for my child. He cares.
So after a long doctor visit, we are still continuing with the 500mg two times a day of the Vigabatrin, we are scheduled for another 24 hour VMR within a week or so, if there is still seizure activity we will do the next course of treatment. That being ACTH, which we did last time to get the seizures under control and stop possible regression.

Feel like I've been kicked in the stomach? Yes repeatedly. Does it suck? Most definitely.
Am I terrified? You bet.

I say I don't want people to look at my son differently because of his diagnosis. I want people to judge Daniel for who he is, not what papers say about him. But I look at him differently too, I look at him with some much love, such an aching heart, scared. I look at his eyes and I see there is life in them, and I see that he knows I love him, that I believe in him. I don't want him to see the fear in my eyes when he does odd movements, when he breathes a little different. But I can't help feeling the fear. I don't want to lose Daniel. Not mentally, not physically, I want him not to lose his abilities that he has fought for. And it terrifies me that I have no control over this. NONE. All I can do it love him, but sometimes that doesn't feel like its enough to protect him. I am suppose to protect him and how can I protect him from something I can't see?

So even though I won a small victory we still have a big one to fight. And it sucks. There are different paths we can take, all of them are scary and leading us down roads I don't want to be on. I want to yell to whoever will listen "HEY, we're lost, we took a wrong turn and shouldn't be in this place, we don't belong, this is not the journey we signed up for!"

Hello, is anyone listening? He does not want or deserve to have this bumpy crappy ass-ed pothole filled road to travel.

OK so I lied, I didn't post without the emotions or the negativity. So shoot me! I tried!
and since I already screwed up the post with emotions for the second time, I might as well top it off:

So to the person who said to me:
"Modern medical literature informs us that there is no evidence of additional brain damage that even severe seizures would bring."

Talk to the specialist that people travel from all around the world to see, I'll send you his phone number and email address. Or better yet, talk to the parents of the children who have IS and who have regressed? Is that not damage enough?

To the person who said to me:
I fully understand your concerns about Daniel's seizures, however lets look at the situation logically, you have to overcome the irrational fear of seizures and understand what they are about."

Yeah, well SUCK IT!