I Hate FREAKING SEIZURES!!

Why can't our lives ever go right? Why do we constantly have to worry about all this crap? Why do I feel like no matter what I do, it gets f'ed up? Sometimes I just want to close my eyes and disappear.

It is soooooo unfair, this whole brain malformation, epilepsy, cerebral palsy crap. He didn't do anything to deserve any of this. And as far as I can tell neither did I or Lonnie, so why does Daniel have to deal with this?

Why does he have to struggle every day just to do what every one else takes for granted. Yes I know, I should be counting my blessings, it could be worse. And I do, but I feel like most of the time I'm in a bargaining match with someone/something.........OK I'll take the CP, just no seizures please. OK, I can handle that he won't talk, but can you please let his hands work to form signs? The one thing I can't handle are the seizures, because I have no way to fight them, I can't stop them, I don't know when they are coming. Talk about feeling so helpless. Its like watching some invisible monster beating on your child and making them writhe in pain and having absolutely no way to stop it. Knowing that each time it strikes it is damaging them more and more. It is all so vicious. Daniel hasn't been himself the last couple of days, he's been kind of quiet, not real active, but there is no sign that he is sick, no horribly elevated fevers or anything, just seems.......quiet. I on the other hand have been very uneasy. I get this way when Daniel gets his way because I get nervous, maybe something is wrong? Because Daniel is non-verbal he has no real way of saying HEY this doesn't feel good, or my head hurts, or whatever the ailment might be. But for whatever reason, I dug out from the drawer yesterday his Diastat medication............just had this feeling that we might be needing it sometime soon. Isn't' that weird? Then he had seizures today, and my first thought was please stop, please please please stop, I don't want my feeling to come true. I have even checked with the pharmacy to see how long its good for. No one should have to live in fear of frickin' seizures their whole life. Why cant' he just outgrow the seizures. There are other children that have the same brain malformation as Daniel and they don't have seizures. They don't have CP. Yes they have issues, but sometimes I wish I only had those issues to deal with. Granted that child's parents think its the end of the world too.........for them. They should count their blessings I say, and then I chuckle because I am sure people read this blog and say the same about us. Count your blessings. I guess everyone has their demons to fight. I am just not so sure that Daniel has the right person fight for him. Not sure I can fight this battle anymore, let alone win it.

Well we're in the count down phase to Daniel's 2 yr birthday. I don't know if the word I should use is "bitter-sweet". There is happiness that Daniel is two years old, and then there is an abundance of sadness that comes along with it. I am very thankful for Daniel, do NOT get me wrong. We have said many times, if someone asked if we'd change what and who Daniel is to get rid of his illness, we say no, not if it would change WHO Daniel is now. Because Daniel is almost always happy, he is Daniel, and he makes EVERYONE, and I mean everyone smile. I know it sounds corny, and as corny as it may be....it is the Truth.

Some people will say "be thankful for what you've gotten", and we are. But there is that part of me that is fearful of Daniel's happiness when he realizes that he is different from other people, and that the people out there are mean, mean people sometimes. That they are not as accepting as his family and friends. That they might stare and treat him different then others. Little do they know, if he were given enough time to show you, you would see that he is a very mature and intelligent little boy. And what is sad, is that people are in such a rush that they don't' give him enough time. Daniel has a diagnosis that makes it hard for him to quickly respond. But you know that what you ask of him is being processed, you just need patience. You might say "hi" to him, give him 30 seconds or so, and he'll respond with his "hi" but he is smiling while he is trying to process how to get his mouth to move the way it needs to. Some people will say "it could be worse", and you're right it could be.

I hope you will help us and remember to celebrate Daniel's life on his second birthday in 8 days!

Counting Down.....

Well we're in the count down phase to Daniel's 2 yr birthday.

I don't know if the word I should use is "bitter-sweet". There is happiness that Daniel is two years old, and then there is an abundance of sadness that comes along with it. I am very thankful for Daniel, do NOT get me wrong. We have said many times, if someone asked if we'd change what and who Daniel is to get rid of his illness, we say no, not if it would change who Daniel is now. Because Daniel is almost always happy, he is Daniel, and he makes EVERYONE, and I mean everyone smile. I know it sounds corny, and as corny as it may be....it is the Truth.

Some people will say "be thankful for what you've gotten", and we are. But there is that part of me that is fearful of Daniel's happiness when he realizes that he is different from other people, and that the people out there are mean, mean people sometimes. that they are not as accepting as his family and friends. That they might stare and treat him different then others. Little do they know, if he were given enough time to show you, you would see that he is a very mature and intelligent little boy. And what is sad, is that people are in such a rush that they don't give him enough time. Daniel has a diagnosis that makes it hard for him to quickly respond. But you know that what you ask of him is being processed, you just need patience. You might say "hi" to him, give him 30 seconds or so, and he'll respond with his "hi" but he is smiling while he is trying to process how to get his mouth to move the way it needs to.

Some people will say "it could be worse", and you're right it could be.

Update Medley

Update of this week, its almost Friday and I'm still trying to figure out what happened to Monday through Thursday! I'm sure you've all had one of those weeks where there really isn't an excuse to why my house is messy or why things didn't' get done because I can't really tell you what happened except for 2 days!

Besides the 2 PT sessions, the 2 OT sessions, and the 2 Speech sessions, Daniel also visited his neurologist for a check up and his dietitian to make sure we are still on track with his weight and making progress.

Dietitian: His weight is up to 27.4 lbs at 23 1/2 months old. (By the way we have a birthday coming up, the big 2!) and measured 34 1/2 inches tall. So all in all, he is doing good in this area.

Neurology: This was just our normal 4 month check up that we do. Dr. Chugani stated that Daniel is doing well and we currently have the latest form of seizures under control. So until these are controlled for about 6-8 months we will not change any medicines or begin and weaning. We got his latest results from the Video EEG that we had in June.

We also have all the paperwork submitted into insurance and are awaiting the approval (cross your fingers) for Daniel's power wheelchair. After all is said and done, it seems that Daniel's new ride will be equivalent to the cost of a new 2008 Escape. This just rubs me the wrong way. That the cost of something, a piece of equipment, for a child to be able to get around and explore his environment would have to cost as much as a brand new vehicle. Sickening.

Question of the day: Which would you pick??! A power wheelchair or 2008 Escape?We of course, opted for the wheelchair in a nice shade of blue, to match our 2001 piece of crap car! LOL

Daniel also got his new DAFO's, which are might spiffy if I might say so myself. These are his second pair, and these ones have hinges. Today was the first day of Daniel wearing them. He wears them for 1 hour only, and each day we go up by one hour. During that one hour, Daniel decided to walk down the sidewalk and to the corner of our street in his Pony. This is a fairly long distance for him, but he did really well. And of course he had quite a few cheering bystanders!! WAY TO GO DANIEL!! Below is a photo of Daniel attempting to use a walker for the first time that does not have the trunk support or the seat. He found out quickly that this piece of equipment didn't' have any place for him to rest! (No worries......No Daniels were harmed during this therapy session!)

Oh, by the way......another disgustingly priced item were the DAFO's coming in at around $1,800. You'd think they were made out of gold! We will be donating Daniel's smaller DAFO's to a family that does not have insurance but are in need of them. Don't these companies realize that they are just raping people who are caring for their children with special needs. I know damn well that these DAFO's DO NOT cost that much in material and/or time.

Frank A. Gatto: July 4, 1972 - July 16, 2007

On the 16th of July 2007, a good friend of mine passed away. He had battled diabetes his entire life. It kicked his butt pretty good, but he never let anyone know it.

There are few words that can express the loss of a family member or close friend. My brother, Marty, was especially close to Frank. As close as any two people could ever be. I am copying a letter he wrote about Frank and read at his funeral. A lot of it won't mean anything to a person that didn't know him, but it meant the world to me and the dozens of other friends and family that heard it. I wanted to post it here as a farewell message.

I am uncertain about exactly when the friendship between Frank and I first began. It seems like it was just forever. Our friendship was a constant; it always was and always will be. Our mothers brought us together. They met at our grade school. So, I guess you can say that our friendship spawned from the friendship of our mothers. Rose and Dreena are a couple of sweet, kind, caring and loving women. They took an unwritten oath when they gave birth to their children. They said that they would take care of them, not just until they were old enough to be on their own, but until time no longer permitted them to do so. Frank and I had no say in this. Our mothers worried about us every day of our lives, every day we walked out that door. For me, my mother worried because I was a nut case. Frank, his mother’s worries were doubled. Rose worried about Frank’s battle with the unfortunate disease he was dealt at a very young age. I’m sure she also worried that he was hanging out with a nut case. In all seriousness, I am certain she knew he was in good company. Our families were much alike. We are what you call good people. It was that awful disease, diabetes, which kept her awake till Frank walked back in the door at night.

Somewhere around high school we became inseparable. It was Spezia that reunited us. From there on; Frank was my right hand man, and I was his. Soon thereafter he was dubbed “Nitty” by the crew. A name of respect, we called him Frank Nitty. He was very close with many members of the crew as well. You need look no further than his pall bearers to find the individuals that shared many of the same memories that I have with him. I’d sit on my couch at home on Stephens and wait till I heard the thump of Nitty’s kicker in his black Lebaron as he left from home on Pingree. The first moment I could faintly hear the sound of the bass was my cue to walk out to the curb. The timing was perfect. I would ride shot-gun and we went on our way. The destination was never in question. The Sheikh’s house was the place to be. This is where everyone was. This is where Frank was Frank. He was cunning, he was sarcastic, he was funny, and most importantly, he was completely happy. These were the best years of my life, and please let me tell you, they were most certainly the best years of Franks as well.

I wouldn’t know where to start if asked to tell some good stories from that time. I have a million of them. Suffice to say that we never had an uneventful day. I believe that people live on through the experiences they shared with others. I assure you that Frank will shine bright within me as long as I live. Every time someone shares a memory of Frank that they have with another, his existence will persist. I am very fortunate to have shared the amount of time that I did with him. With all the memories that I have, I can assure you that Frank’s soul will remain immortal. His soul will remain immortal until the day I face my own mortality.

Frank was a very loyal, kind and caring person. He was what I call a genuine human being. I spent most of my life with this man, and never once did we have a falling out. Frank was an old-school Italian at heart. He didn’t like to be double-crossed. We never had to worry about that though. We had more than a friendship as we grew older together. We became brothers. He was part of my family. I loved this man. I spoke those very words to him on the phone just a couple weeks back. I loved him as much as I could love another man that didn’t have the same blood as mine pumping through his heart.

I will miss you terribly my friend. My life has been changed forever. Thank you for being the best friend I ever had Nitty. Thank you for being my brother. It makes my heart feel good knowing that the majority of our lives were spent with each other. I told you many times that you would be the best man in my wedding someday. This has not changed. No one stands next to me that day my friend. That spot remains reserved for MY BEST MAN!!!

Immense Love,
Marty

Happy Birthday Auntie Ann!

HAPPY BIRTHDAY AUNT ANN

HAPPY BIRTHDAY AUNT ANN

HAPPY BIRTHDAY DEAR AUNT ANN.........

HAPPY BIRTHDAY TO YOU!!

Smiles!

Daniel's typical smile for the longest time was his mouth wide open and sticking out his tongue. He has now mastered what we call "the old man smile". This is my favorite picture of that smile yet! His cheeks are so chubby they push his eyes closed! And he is so pleased with himself. Generally we get the "old man smile" and then he starts laughing. What a cutie, but of course that is my opinion only!

Augmentative Evaluation

Daniel had an extensive evaluation this week through Children's Hospital of Michigan to see if he is ready to learn some sort of "communication". I say, ABOUT TIME, as I am sure he would too if he could talk! I am sure he is getting tired of me picking the wrong things that he doesn't want to do. :)

The therapist said he is doing wonderfully with the eye gazing and PECS that we have been doing with him. We decided to try some of this stuff at home on our own and it seems to have worked to our benefit. She was impressed, which is always nice. He was able to acknowledge pictures that she wanted him to look at. For example, she would blow bubbles and then ask him to look at a few pictures (one containing bubbles, of course). He would look at the picture of bubbles and then look at her. We were very proud of Daniel, he did awesome. Then she also had him selecting things by pressing buttons that would say phrases. She had two buttons with two pictures, one for "I want to play with bubbles" and the second with "I want to play music" (both are winners with Daniel, so no matter what he picked he would have been happy). But he selected and figured out that what he looked at last was what he was going to get.

Then last but not least, Daniel got to use the computer, which I might add, really impressed Dad! She wheeled him up to an adjustable table and put the computer monitor within arms reach. It was a touch screen monitor, so when Daniel would touch the screen it would play music for a few seconds, then turn off. He learned quickly that to get the music (he LOVES music) to play he had to reach up and touch the screen again. That's my smart little boy!

So, that was Part 1 of his evaluation. She said she wanted to see how well he would do with joysticks and figuring those out. I already know he'll do wonderful because he figured out how to use it very quickly with the powered wheelchair!!

Graduation Party

Well our graduation party went off without a hitch, well except for the tent blowing over from a big gust of wind! Otherwise, I think it went well and the food was good! Here are some pictures from the gathering.


The Party was for Brandon and Brittany who graduated this year.

Pictured: Brandon - off to Ohio
Kelly who goes to Central, Blair - off to Italy in August to study(WOW! scary)
Brittany - off to Central to STUDY with Kelly.

Here is Katie - who is off to Australia this week, all by herself to study for a year.

The Most Beautiful Flower

This is a story I read, and thought it nice.

The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.
And if that weren't enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said with great excitement, "Look what I found!"
In his hand was a flower, and what a pitiful sight,
With its petals all worn - not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.
But instead of retreating he sat next to my side
And placed the flower to his nose
And declared with overacted surprise,
"It sure smells pretty and it's beautiful, too.
That's why I picked it; here, it's for you."
The weed before me was dying or dead.
Not vibrant of colors: orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, "Just what I need."
But instead of him placing the flower in my hand,
He held it mid-air without reason or plan.
It was then that I noticed for the very first time
That weed-toting boy could not see: he was blind.
I heard my voice quiver; tears shone in the sun
As I thanked him for picking the very best one.
You're welcome," he smiled, and then ran off to play,
Unaware of the impact he'd had on my day.
I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he'd been blessed with true sight.
Through the eyes of a blind child, at last I could see
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind,
I vowed to see the beauty in life,
And appreciate every second that's mine.
And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose
And smiled as I watched that young boy,
Another weed in his hand,
About to change the life of an unsuspecting old man

_________________________

What is wrong with people? I read this article from the UK and it sickens me.
I sat and cried when I read it this afternoon. This poor little baby. I know that perhaps there are some people who feel that the father was trying to help end the baby's suffering. I'm sorry, I feel nothing but hatred towards the father. Yes, I know hate is a very strong word. That little boy, bless his soul, did not ask for anything that was dealt to him in his life. That poor baby, that is all I can say.

I am sorry that you had to suffer in your short little life, and I am sorry that your father did this to you. And I am so sorry that there wasn't someone there to help you, and love you like you should have been loved. It is not fair, and it is not right what your father did to you.

God looked around His garden,

And found an empty space,

He looked down upon the earth

And saw your tired face,

He put His arms around you,

And lifted you to rest,

God's garden must be beautiful,

For He only takes the best.

He Knew that you were weary,

And he knew you were in pain,

He knew that you would never

Be well on earth again.

He saw the road was getting rough,

And hills were hard to climb,

So He closed your weary eyelids

And whispered "Peace Be Thine"

Smells?

Let me first start this off that this is not about Daniel, just a little ditty that happened.

So for months now I have had no sense of smell. NONE. Don't know why, just one day it was gone. The kids and the rest of the family will say things like, "Smell this doesn't that smell nice?" and I'll kindly remind them that I'm sure it does but I can't smell. Or "oh mom smell this food, doesn't it smell delicious?" Perhaps it does....I can only guess

So on with my story, remembering I smell nothing. I am trying to get my house cleaned for a big graduation party for Brittany and Brandon tomorrow. So I am cooking many different things and cleaning. Child walks into the house, no more than 5 steps, and this is how it goes

Child: "What is that rank smell?"

Me: "No clue, what does it smell like?"

Child: "Like nasty, gross"

Me: "Care to be a little bit more specific with that?"

So I start to walk around the house, looking for what the stench could be....because I CAN'T SMELL....."well does it smell like food?" as I am having her smell the different foods I am making.NO. "well does it smell like gas? Maybe there is a gas leak?" as we walk over to the oven. NO. "does it smell like garbage?" NO "well come on, help me out here." We go backand forth for about 5 minutes with me asking questions her telling me NO.

Child: "It smells like ass"

Me: "Excuse me? what exactly does ass smell like? Because I don't think I've ever seen you smelling any ones butt!"

Child: "I don't know exactly, it just smells like ass. OK I gotta go, love ya bye
and out the door she is gone. Leaving me, the non-smeller of the house to figure out what the heck smells, and get it fixed BEFORE a graduation party!

UGH, so I continue to search for the mystery smell and playing with Daniel in his jumper and figure someone will be there to help me figure out the smell that is filling my house. Daniel starts to get a little cranky, so I take him out of the jumper.......and well I'll be damned! There is the culprit of the smell of ass! Or as we parents call it......a poopy diaper! This I suppose could be a benefit of a a nose that cannot smell! ;)

Boogerectomy

Yesterday was our first day back to therapy, it went well and he wasn't opposed to doing anything. We also took the Pony in for Ms Carol to adjust (and approve). She wasn't real thrilled with the Pony, its not her favorite one but she said as long as we alternate between the Pony and the Rifton Gait trainer we'll be OK. So its a deal!

We also went to the doctor because ever since Daniel was a wee little lad, he gets boogery eyes in the morning, and ALWAYS has these huge boogers in his nose (more than I have ever seen in any of my other children). We actually have to go in and remove them.....this procedure is called in our family a "boogerectomy", so that he can breathe. I have always wondered if the eyes and the nose issue are connected and perhaps that they didn't develop correctly somehow. Anyways the ped. said that Daniel will probably need to have his tear ducts probed. Excuse me? he has to have what probed? OUCH. Does that not sound like the most painful thing? So of course I ask how this is done, where it is done, and who does it, does it hurt?. I didn't like the answers to any of the questions I asked!

First, they numb the eye area........no sedation (OK that means Daniel can move and squirm.....with someone who has a probe by his eyeball?) Second, its done in the office (YIKES!), Third, the eye doctor does it (OK not Daniel's eye doctor. He's OK to examine his eyes every 6 months but he is old and he is semi shaky and I can't imagine him with a probe at Daniel's eyeball!) and does it hurt.............HELL yea!

I Think NOT! I've got to work up to this procedure....until then, we'll have boogery eyes in the morning.

Daniel the Explorer

Well yesterday, the deal went down at McDonald's, and Daniel got his goods! HA HA HA! In a previous post I told of a woman who was willing to sell AND deliver some equipment that we wanted for Daniel. We were going to meet at McDonald's less that 2 miles from my house, I was going to pay her and she'd give me the "stuff". Well Stacey, I can't say thank you enough. Daniel will get plenty of use from these items. So far all we have tried out is the Pony.
Yesterday he was in it for about an hour and he wasn't real sure what to do but he liked being in it. We hooked a jump rope to the base and gentle pulled him to give him the idea that he needed to step to get it to move.

Today, he was in it off and on all day for about 5 hours! And he figured out how to move it himself, maybe not running but definitely figuring out how to maneuver it around. This child never ceases to AMAZE me. Then out of nowhere Daniel becomes an octopus....arms and hands ALL OVER THE PLACE... he discovered that "HEY.......I can reach the top of the telephone stand.......HEY, my favorite thing, the telephone, lets grab that!...........HEY is that FOOD? Did you leave the pantry doors open??? Let me get that for you!! HEY, who is that cute little boy (his reflection) in the dishwasher??" Hours and hours of Daniel walking around pulling things off the refrigerator, off the table tops, changing the channel on the TV, and adjusting the volume!

Its very cool that Daniel can move around, it makes me proud, but what's even cooler, is that he can EXPLORE his environment, play with things, ON HIS OWN, without me guessing what he wants. He can get there on his own, and he has the desire to want to see what things are and to investigate. TRULY AWESOME.

Thank you Stacey from Richmond Virginia.
Stay tuned for more to come of "Daniel and his Pony"

Chillin'

This week we've kind of had a vacation without really going anywhere.

All three of Daniel's therapist all happened to take this week off. Ok can we all say "LUCKY SOB's!" ha ha ha! I hope that they all had a great time and while they were gone with their families, they were thinking of all the great things that they can do to get Daniel going again at therapy. Here's a photo of Daniel just chillin' and taking it easy this week. Hey Daniel....no worries.....you just sit there, take a load off, watch some tv. :)

I do have to say since the medication adjustment this week, Daniel seems to be back to his happy self and strong. So, this is a good thing that we can be happy about. Also, Daniel's friend Drew started ACTH this past week and seems to be doing really well. Yeah Drew!

______________________________________

On a sad note, my daughters lost their grandfather from their fathers side. He passed away tonight with his wife and children at his side. Mr. L was a very nice man who loved his family greatly. He took care of those who carried his name. And he will be greatly missed especially by all four of his grand daughters. As sad as it is, I can say I am glad to see that at least he isn't suffering anymore, and I hope he is in a happier pain free place. This picture was taken many years ago.

Do not stand at my grave and weep

I am not there I do not sleep.

I am in a thousand winds that blow

I am the softly falling snow.

I am the gentle showers of rain,

I am the fields of ripening grain.

I am in the morning hush,

I am in the graceful rush

Of beautiful birds in circling flight,

I am the starshine of the night.

I am in the flowers that bloom,

I am in a quiet room.

I am the birds that sing

I am in each gentle thing.

Do not stand at my grave and cry.

I am not there. I did not die.

4th of July

Can I tell you how much I dislike fireworks that wake up my son?
Who now is all riled up and won't go back to bed???

Well let me tell you.......I DISLIKE THEM VERY MUCH!

Happy 4th of July!

Medication Update & The Pony

OK, so we are on our second night of the medicine change, and maybe its just me but today Daniel seemed like a new little boy! Full of energy and VERY vocal.

Last night instead of the 750 mg of Vigabatrin, we were instructed to start the wean and go to only 500 mg of Vigabatrin and the 50 mg of Zonegran. Granted, I wanted Daniel back to his happy self, but I don't want the seizures. So, we watched very carefully this morning (his normal time for seizures) and there were none......(counting our blessings..1, 2, 3, 4, 5....). And, like I said before, maybe its just me, but I thought today he seemed to be a little more of his old self. So, we'll hold our breath and see how tomorrow goes.

Is it possible to have a smart-aleck so young? Can an almost two year old be a smarty-pants? Sometimes I wonder with Daniel. He just has that look about him........and it frightens me. LOL
I think he shall be taking after his father!

So, we have seen little Eden from the twins "Holland & Eden" using a Snug Seat Pony gait trainer. It seems like it is very lightweight, and I don't think Daniel is strong enough yet to consistently move the gait trainer we have (Rifton Pace). So, I began a search to see where and how much these things will cost. I know our insurance will not pay for another gait trainer as we have the Rifton already. So, after a few days of digging, I found a Yahoo Group called Special Child Exchange (no, we are not swapping kids!). This is a place for parents that have special needs children to buy, sell or trade equipment they are not using anymore. And lo and behold, I found a woman from Richmond Virginia who happens to be traveling to Traverse City in the next couple of weeks and she has a Pony gait trainer! She is selling us the one she has that has only been used a few times and for about an eighth of what it costs new! And she is going to deliver it too!! I can't wait! I hope it will work for Daniel. She also has a few other pieces of equipment that I've been looking at for a while. Pretty soon you'll be able to call our house the Medical Equipment Warehouse!

Preliminary Report

Well we just got a call from the head nurse who helps Dr. C, Daniel's neurologist.
While doing the Video EEG Daniel didn't have (of course) any of the movements that we guess to be seizures. There were some movements that I wasn't really ever sure about so we mashed the button on 6 different occasions. NONE OF THOSE WERE SEIZURE ACTIVITY! Yeah for that.

Unfortunately, according to just the preliminary report, there are frequent spikes and waves in his left frontal and temporal lobe and a little from the right. So basically bilaterally. Which we knew from previous EEG's. Although they didn't' see an actual seizure, there is still the activity.
UGH.

Kathy (the nurse) is going to talk to Dr. C about adjusting some medicines because since all the changing of meds Daniel seems to not be himself. He isn't focusing on activities as much, doesn't have the get up and go like he did before. So she thinks that maybe we are too high on the Vigabatrin and we need to cut back so she will consult with the doctor.

Daniel is currently taking for his medicines the following concoction:

Morning: Vigabatrin 500 mg
Robinul 1 mg
Midmorn: 1 tsp Omega 3-6-9
Noon: Robinal 1 mg
Bedtime: Vigabatrin 750 mg
Zonegran 50 mg

My biggest fear, a side from the seizures, is that we have Daniel but we lose him and his personality to all of the meds that he will be taking. Its not fair to have someone, and have them taken away because of the different meds.