Doctor

Another hope tomorrow.

Another Doctor tomorrow.

This one ASKED to see him. This one may see something challenging, we like people who are challenged, they try to help, they can become obsessed, they can find answers. But they can also throw their hands up if the challenge is too great, if it makes them look bad. And Doctors are the worst at this. I make no apologies, I have been to far too many waiting rooms and Doctors to know the exceptions are few and far between. Still, I have *some* hope but mostly I have a list. A list of tests I want performed or a valid explanation why they are not required. And I have a Merck paper too...and I almost understand all of it. Merck, gave me more direction, and more questions and more possibilities for diagnosis. I have almost ALL of his medical records, I have his CAT scan and EEG on disc. I am prepared.

This Doctor, better show me what makes him different than all the rest, he will prove to me that he is the smartest Doctor I have encountered and the aggressive one that wants to do everything immediately to find the cause or...I will find someone else. I do not believe in trusting any Doctor without question, after all, someone had to finish at the bottom of the class. I have been known to ask how many times the Doctor took O Chem. It's a crappy thing to do, but if they tell me: Oh it was easy...I have a tendency to think they lie. O Chem takes work, and all the GREAT Doctors I know admit it. Sure, some of them passed it the first time, but they ALWAYS comment on it being their toughest class. Those Doctors, I keep. As long as they can tolerate me being a partner in the medical care they are providing. If I ask a question, I want an answer, not 'a look'. K, done with that.

This week has been good for Bug. He had a development day. A development day is a day where he sleeps almost a full 24 hours. The next few days after will be interesting. His seizure pattern will change, his personality will alter. He has one of these a year, at least, sometimes more. The curious thing is his seizures happen exclusively while he is asleep, and he had none. He slept for hours, and would wake up, cuddle a little, run into the other room and then cover his eyes and go back to sleep. No seizures.

Tonight could be night number 6 with no seizure. If he sleeps well and has none, it is a new year record. He has only gone this long one other time in the last year and 4 months. Did I just jinx it? I hope not, but still, he is a happy little guy now. REALLY happy, annoyingly happy and very Mommy oriented.

Because of all the Mommy time he desires, Taylor desires even more. She has been reverting to acting like a baby to get attention, and if I don't validate that, she just gets mean. The girl KNOWS how to push my buttons, and to make messes and to apologize and to bite. She bit her brother, and I punished her, She didn't like it, I didn't like, but I DO NOT abide biters. In any way, for any reason. Now she REALLY knows it.

She also asks the same question with every Doctor visit: Will buddy talk? She wants to hear him talk as much as Glenn and I do, maybe more, because we understand that he may never talk, she thinks it's just about finding the right Doctor or Teacher. I wish I still felt that way, but...I don't. My hope dwindles with every week that goes by. Every medication step up and seizure that has followed. It's hard to see that this may be working now, hard to see it when all I have seen is the failure time and again. The regression. It has taken on a life of its own, become this thing that I can try to chip away at, but looms ahead of me all the same, never getting smaller, never giving any part of him back to me. I have fought a lot more than most in my lifetime, but the battle was always mine, this one is his and I have no way to give him my strength except to be his advocate...to learn as much as his Doctors know about what is going on in his body. To give them all the details they need to put this puzzle together as much as it can.

Idiopathic to me, is really saying: Don't want to look anymore. Idiopathic will not be tolerated. Poor, poor Doctor. He has no idea how much this means to me. God help him help Bug.

Bug's First Day of School!

Leading up to the big day was all sorts of emails, and research and nervousness. I followed him around, I cuddled with him, made sure all his medication was set and then he got on The Bus monday morning and headed off to start a new adventure.

Monday, Glenn had to fly to San Francisco so we were up at 6:00AM. I THOUGHT Bug's bus arrived at 7:07 so I got him up as well. When I verified, it was 9:07. Crap. Oh well, so off I went to take Glenn the airport and man, it was snowing pretty darn well. Yippee!!! We had repaired the brakes on the Land Cruiser so the ride was not as scary as it would have been in the Highlander. I got back, Mom had fed Bug, who had refused to eat earlier, and I made sure all his 'stuff' was ready to go.

Snacks? Check (and a lot of them)

Water bottle? Check

Diapers? Check - 5 times check

Unaware, beautiful child? Check

And I got a phone call. It was Charlie. Joan was not driving that morning and they weren't sure where the church was. He asked if we could meet at Cabella's. Why sure!

Cabella's? Check!

Deer + Headlight = Bug

We waited for a few minutes, and I took a few picts, trying to distract myself so I didn't cry too much. It was then, I realized my Sony Camera had a broken LCD. Darn it, but the guts still worked and the pictures are cute, as are most pictures of Bug.

When those Bus (ya The Short Bus god bless) doors opened there were these two smiling Grandpas! I was thrilled! The Bus Driver (notice the caps - yep intentional) looked like Dad! Bug was a little taken aback and then climbed up and took his seat. Charlie put his seatbelt on and I said my goodbye, talked to his new Grandpas and watched them leave.

Because I had been sick, I was not able to get him registered so I followed

The Bus

them to his school. I say that matter of factly, but I had to call Jen to talk me down I was so close to crying. In my head, I knew this was the best thing for him, in my heart, I saw him trying and trying and not being able to do what he wanted. And Jen reminded me that this was not about ME, it was about HIM and this is how he develops, and how he will learn to cope in the world. It would be silly to see a High School student walking in with his Mommy. She was right, of course, and I tried to calm down and think of all the things that are now available to him, and of all the people trained to help him. I never went to school to learn these things, his care was just dropped in my lap one day. I am not the one that will do the best by him at this point in time. I am the one that will help him succeed, but he has to get the tools to succeed from people better suited to teach him in the manner that he can learn. And yes, all these things went through my head as I was driving. Luckily, I had a big target to follow without thinking about the silly rules of the road.

 

Mount Mahogany

When I got there, Bug was walked off the bus, hand in hand, and taken inside. I went to his classroom, passing by all the screaming children gathered for a school assembly and thought: Uh Oh. I got to his classroom and his WONDERFUL teacher, Bre, had him by the hand. When I first saw Bre my thought was: YEA, she's tall and looks sturdy. :) Stupid thing to think, since she is so much more than that. But, realistically, with a strong boy that doesn't communicate, strong people taking care of him are a neccessity. So, I apologize for relagating my first meeting with Bre to such a shallow thing, but it is of the utmost importance. I said my hello's and told her: He's strong, and as much as love him, I know what it takes to keep him under control, use whatever means you deem neccessary. :)

And with that, I left him. Bre walked Glenn to the assembly and I walked to the Office.

I filled out all the forms and talked about lunch and other things and then I went back to his classroom to see how everyone was holding up and give Bre back the papers I had filled out for her. When I walked in, I was thrilled to see him standing in line with the other kids, coat on, hand being held, ready to go outside to play! Oh boy, was I thrilled! He didn't see me, which was good, because earlier he had reached for me and was a little upset I didn't take his hand. It was then, I knew I couldn't stay. I had planned on it, but it was not the best thing for him or for his evaluation. So, I said my goodbyes, assured Bre that if she needed me, I was at her disposal and I walked out the doors. I didn't really really want to, but I had to. I felt like I was abandoning him, even though I KNOW I wasn't. I got in the car and headed home. It was quiet. There was no coat hanger spinning hitting the back of my seat. His seat was empty. No little feet kicking, no little giggling behind me, just complete quiet.

Tay went to school, Mom and I went shopping for Dad's Birthday present, we picked up Tay, I signed up for her Parent Teacher Conference on Wednesday (no joke - preschool parent-teacher) and then I rushed to try to beat the Bus to get Bug. As we got to the school, his bus drove passed. Snap. But I parked and went in to talk to Bre, knowing I had some time.

The first thing Bre said to me? He is not truly Autistic. I shook my head, yep, I know. And he can't do a 6 hour day. Yep, I know that too. :) We went through what the next steps will be, she had two district personnel visit him and evaluate him. Bre created his IEP and we will be detailing it tonight. I thanked Bre and Camille for everything, got his pants and shirt from their dryer (LOL) and rushed back to meet The Bus.

When those Bus doors opened, there were still two smiling Grandpas and one smiling redhead! And the

Getting off The Bus

unmistakable odor of stinky boy (which I can't imagine the Grandpa's smelled because they WERE still smiling). I talked with them for a bit., thanked them profusely, asked how Bug had been and then made arrangements for the next day. Then we drove to Ogden for Dad's birthday.

I can't help but feel like all the things we have done in the last year have led up to that moment, the very moment that I handed my son over to his Bus Grandpa's and watched them treat him like their own. All these wonderful people in his life right now, are exactly as it was supposed to be. But, I have to feel that way don't I? I have to or I will feel hopeless, and it may be, but I doubt it. I doubt it very highly. Bug's first day of school is over and everything else begins.

 

The big let down

We're sick. Thanks Tay, we are all very sick. And because we are, Bug can not go to school. Sucks. He needs to get into school. but it will have to wait until he is better so he can come home sick again in a week because he is now around a lot of new kids and people that carry bacteria and viruses we have not built up an immunity against. There ya go, one of the longest sentences I have written but I am upset he will not be getting on the bus in the morning. And yet, I am glad to have him one more day. It will be a shock for them at his school, to have a seemingly perfect child that really has NO IDEA how to communicate. Aside from hugs an kisses and tugging...he doesn't really even try to get his point across. I PRAY they have had someone like him before, but I fear, it will be a learning experience for them and a frustration for him. I hope I am wrong. God help me if I am right.

 

 

Edumecation

Oh we are all about school this week. All about it.

Bug will, most likely, be starting school on Tuesday.  We will meet with his teacher on Monday to discuss goals. He will be put in an Autistic Classroom for evaluation and then we will re-evaluate at the end of the week or two weeks or a month. Glenn and I both think it will be the end of the DAY. :) But we will see. I am concerned but I suppose every mother is. He is so sweet and....determined. I hope he isn't too bossy, he can tug like no one I have EVER known. But, this will be exactly what he needs, it does not help him being home with me, it only feels better for me. I am able to protect him at home, I am able to accept or not accept what he does with his poopy diapers. And I am to see him whenever I want, to cuddle with him when I need a cuddle. Because, he is the sweetest little man.

Tay brought home the flu or some type of other crud and didn't go to school Wednesday and probably won't go tomorrow either. Poor thing. But she was OK about staying away until she was "all better", UNTIL she saw the picts of her first day. Game over after that. And then the game of negotiation began. It played out slyly. She acted like it was no big deal after I told her no. Gave it a few minutes and then said:

Mom, I need Afrin.

I said: You can't breathe?

She responded: Nope. (sniff, sniff, cough, cough)

She has had Afrin once before and it helped her sleep so I gave her a little. After a few minutes:

Well, I have my Afrin, I can go to school now.

After I stopped laughing, I said, as if it mattered : Afrin just masks the symptoms, you are still sick.

She sniffed again and said: Nope I can breathe better, I can go. (cough, stiffled cough)

I told her: Ya, no. NOT gonna happen, you are still sick and we have to think about the other kids, It's when sick girls and boys go to school that the healthy kids get sick, so you have to stay home until you are not coughing, sniffling or have a fever.

She said: Oh, OK Mom

And went into the family room to watch SpongeBob.

First Day of Preschool

Taylor has been begging and demanding to go to school for, oh, almost ever. I called on Wednesday and got her in on Friday. It was a long wait.

Taylor - before school

But Friday arrived, as we knew it would, and we got her ready to go. Her excitement dwindled, I can only surmise, replaced by a small amount of fear, but still she jumped headlong into picking out her outfit and taking her shower. Oddly she wore red. But I suppose it is a variation of pink.

Mom and Dad were here for a Train Show Dad was helping in, and so Nana stayed home with Bug. Glenn was a tad under the weather and worked from home but still dragged himself out to see his little girl off on her big day.

We left in plenty of time and arrived with a few minutes to spare. She sat

On our way in

down with us at the front desk and then we walked to her classroom to meet her first teacher: Mrs. Johnson.

Mrs. Johnson was VERY polite and schooled us about the preliminaries, whilst Taylor played, waiting for the rest of her class. She was unusually quiet with everyone, all the while, watching everything. After a few minutes she ran halfway back to Glenn and I, gave us a thumbs up and returned to her playing. We laughed and took it as: It's all good, you can go now. So we did.

We went up front, paid her dues and then went home to wait. Two hours, no Taylor. It was VERY quiet. And Bug loved every minute of it.

I went to get her and she was reluctant to leave. In fact, she told me she was not going because she wanted to paint some more. So I went in and took a few pictures, had her show me her room and talked to the rest of the children, who, had gathered around once they saw the camera :).

Look! The Alphabet

After a few minutes, and a promise to come back on Monday, we were able to leave. On the way out, she saw a play kitchen. Uh oh. We had to pause to play, or should I say *I* had to pause while *she* played. I thought she would regale us with her tales of 'preschool - the beginning' but she was surprisingly quiet.

 

Yep, THE kitchen.

Nana and Bug came with me while Daddy stayed home and napped, did some work, and medicated. We went down to get Megan and still, no stories. On our way back, she slept. AH HA! It was at that moment I knew I would hear her stories, after she awoke. And, we did.

She learned where to sit, she sang her ABC's, she made a snowflake, complete with sparkles, because sparkles make everything better, and she also told us how she learned to raise her hand before talking (OMG) and how to stand on the X (still not sure what that one was about but I am positive I will find out eventually). She said she had a blast and couldn't wait to return. It was good to see her dream fulfilled. And then she asked when she was gonna go to Ballerina School.

Only Tay. :) 

 

Great Day!

Today = Great Day!

Tay will be starting Pre-School on Friday! VERY nice woman signed her up over the phone since I have to replace the rear passenger roter and brake pads before I can go anywhere.

AND Bug will be meeting with the fine folks of Ridgeline Elementary School next week for us to go over the IEP and get him in school! So thrilled, so very, very thrilled! He is finally ready, we think.

And TWO dear friends that I hadn't heard from in a while touched base today! They must have sensed I needed it...or it's just blind stinking luck. :)

But I am really bad at the PSP. Tay keeps reminding me.

Christmas picts..LATER...for now..

Lately, I have heard A LOT, how life is not fair. How one person gets what they want and I don't. I hear Why Why Why? And I have the juvenile...but very real answer:

Because.

No deep insight there is there? It is what it is and we can obsess about why it is that way, and ponder what message is there to be learned, OR, and here's the difficult part: we can just accept it and move forward. I like that. I like accepting that sometimes there are no reasons, and sometimes there are. We look for them, we build the puzzle but sometimes, just sometimes, you lose one of the pieces. It didn't come in the box, or puppy ate it, but either way, it's not there.

Does that mean that puzzle is a waste? That you will never find that piece? Maybe. But once you search for it and give it your all, just realize that you can't find it at the moment and go about your daily business. Because we have all done it, searched and searched and couldn't find something, and then, when we least expect it, there it is. Sitting in plain view as if it was never missing.

And sometimes, we find it in a pile of shit. Graphic. Sorry. But in all the feces, there is something valuable, or that we perceived had value and there it is. Surrounded by crap. And then puzzle is complete.

So, sometimes the answers you are looking for can never be found, and sometimes they are found when we least expect them, and then again it might be in the trash. But if you really care about the outcome, you pick it out, clean it off and use it to your benefit.

LOOKING for answers is one thing, building your life and your happiness around finding them is quite another.

A very VERY wise woman once told me (via my Mother since I was bedridden): God himself could come down and explain why things are the way they are and you STILL wouldn't believe him, You would STILL not like the answer, because you had to suffer. So no matter what the reason is, it will never be good enough. I always wonder if she lived very long after that. She was 30+ years old, had 2 or 3 children and had cancer. I, was 15, and crying about being in the hospital. I didn't CHOOSE what happened to me and I do NOT think I was being punished. I was 15 for heaven's sake. And I did wonder why for a day. ONE day. And then, I looked at the drains in my leg and realized that I was wasting my energy on something that I would NEVER have the answer to. Ultimately it didn't matter HOW I got the infection, did I carry it in, was it the hospital, who was to blame? Who? Eh, who cares. It happened, and I had to move on. Once I focused my energy on getting better, on beating the infection, on getting out of the hospital...and once I had gone through withdrawals from addiction to Demerol (not ingested by me, shots to alleviate pain) I was out of the hospital and on my way to recovery.

I put in 3 days a week in PT. Three LONG, PAINFUL days a week. And had two more surgeries but at the end of 8 months I was running on the Soccer field again. Against the advice of my Doctors, but I was doing it. And I never wondered why I was able to run again. I was grateful I had worked to achieve it and had the support of my family to help me achieve it and I NEVER, NEVER blamed anyone or anything. I took my lesson: Perspective. I took *that* lesson and the ability to put a value on every little thing.  To gage what was important in my life and what wasn't. And I never thought again about fairness. About why it happened to me, because it didn't matter. What mattered more was what I did with it. What manner of a human being it would make me. About how sweet life itself really is, not just what I want and can't have, but that I breathe.

I guess I should talk about Christmas

A few folks have asked me about Christmas...where are the picts? Did the kids have fun? What did they get? So I respond:

The picts are on my computer. Some are cute, some are scary.

Yes, Tay had fun, Bug wanted to eat.

They got everything they wanted EXCEPT Tay says she NEEDS two flying horses. Maybe for her birthday...:)

Will post the picts and all the gory details later...it's coming I promise.

So the details...

Are as follows:

The night before, Glenn and I decorated the place with orange, yellow and blue streamers, we placed the presents, unwrapped (because he really isn't that into opening things anymore) on the kitchen table and went to bed.

Bug woke up and opened the door, took a step back when he saw the decorations, but ran headlong into the kitchen to scrounge for food. I was feeling under the weather and made him waffles instead of eggs, don't judge me. He ate ravenously and began tearing through the house like a caged bird.

Because I was so sick (sinus infection...AGAIN) I didn't have very much inclination to do anything until Mom and Dad got here. Thank god Mom and Dad got here before I strung him up because BOY, was he full of energy. So they got here and I began to get ready to take him to Chuck E. Cheese. Glenn got home, cuddled with Bug, calmed me down and made me smile and then we went to the restaurant/den of disease and munchkin overzealousness.

Bug was typically Bug and just wanted out of the place and back into the car. We, of course, couldn't give him what he wanted but instead walked around with him and let him ride some of the car rides and such. Mom has video, my battery was dead. Considering that Bug gets a little overexcited in crowds, he did really well.

We finished at the Chuck E. Cheese spending a little less than a hundred dollars on things that would have cost 30 bucks and headed to the Albertson's to get a cake.

About the cake...it was under glass, behind the counter and well, I wanted it. Glenn called for someone. Waited, called again. Waited some more and then we looked at each other and I went and got it. Found the little plastic cake cover and took it to the check out. Minor infraction and no DO NOT ENTER signs so...I suppose no harm no foul and it was a good cake.

We got home, had the cake, complete with candles and singing and then...had to play with the gifts. All the big people played, Bug wasn't too interested. Glenn got Bug an Air Hog. A small one but cool enough. I had to laugh...ages 8+. Bug didn't look at it once, he played with the Doodle Pro Mom and Dad got, and a little with the Little Einstein's Piano but after the 2 days he had before this, I was pleased he was even interested and mobile at all.

I never imagined the last 6 years would play out like they have when I first took him home so long ago. The future was completely different in my mind but he is still the little man I imagined. Loving, sweet, mischievous and tenacious. He is my little prince, and as trying as it can be at times, I simply adore my 6 year old boy. Now I just have to adjust to telling people he's 6. Wow.  

6 year old boy!

Bug made it to six! There was Chuck E. Cheese, Air Hogs, some minor rule-breaking and THE chocolate cake. Details to follow...it's just too darn late.

 

Happy Birthday 6 year old boy!

EEG's and a strong little boy

I walked the halls looking at the faces of all the Doctors and Nurses that passed by, wondering if one of those minds held the key to the lock that took my boy from me and left me with so many questions. I walked the halls on my way to sedate my boy, place electrodes on his head and HOPE he has a seizure. HOPE he HAS a seizure. I never wanted him to have one before, never! But today, I was hoping beyond all hope that he was actually going to misfire and have the very thing I dread. And he did. BEFORE the electrodes were on. We missed it by 40 minutes. It was the first time that any medical professional had seen one and for that I was somewhat grateful, but saddened all the same.

Our decision to move back to Utah was validated in spades the last two days. It was the ONLY place were we could have gotten 2 EEG's in 2 days, the only place where 5 nurses held him and cuddled him and tried to comfort him. And the ONLY place where a very kind Doctor took the time to explain to a worried Mom about Precedex®. Dex is a sedative that mimics sleep. Very mild, as far as sedatives goes, and essential for a precise view of the brainwaves our boy creates. He needed to be sedated because, as sweet and easy as he was the first two times he had EEG's, he WAS only 3 then and 5 is a whole different ballgame. 

On December 2nd at 7:00pm we began the sleep deprivation. I was concerned it would be a battle we would lose and he would run headlong into deep, peaceful, sleep. But he didn't. We played music loudly and Tay helped by shaking him and screaming at the top of her lungs. In an enclosed car...it wasn't pleasant. At 10pm, Mom and I took him to WalMart thinking it would be easier to keep him awake with the bright lights and noise. And hey, I can Christmas shop so: Win Win. WalMart worked. A little too well. At 12:15am we headed for home. At 12:25 we were home, at 1:00am I was begging him to go to sleep. At 1:15 he complied.

Glenn's job was to wake him up at 5:15. He woke up at 7:00. Oh well, he is used to 12 hours of sleep so he was pretty deprived. But he was happy. Too happy, too energetic. K, that worked against us. At 10:30am we got to the hospital and heard: your appointment is tomorrow. Snap! How did I do that? The wonderful, kind and sweet lady said the most spectacular thing: Wait a minute and I will see if they can get you in! What? Cool. We'll wait. And Bug paced and ran the halls and I talked to some nice ladies and eventually we were called in. It was amazing.

Bug does NOT like small rooms. DOES NOT. So when we had to hold him down to get the electrodes on, there was a great wailing and moaning and gnashing of teeth. I thought he did fairly well, but it was a battle. Once the electrodes were on and the room was available we laid him down. And he got up. I laid down next to him, held him in my arms and he screamed at me and tried to get up. After changing parents and about 40 minutes I called no joy and asked for sedation. 

They called the Sedation department and, well, Bug had a cracker. *A* cracker, 3 hours before so he couldn't be sedated. To be so close and miss it because Daddy was thinking his Boy would be hungry since Bug refused breakfast, well it pissed me off. I believe my comment was: 'Well thank God all those emergency surgery patients were smart enough to not eat for 12 hours before they got in the car accident'. The room was quiet...except for Bug. I heard: 'They don't want him to aspirate anything. ' I said: 'A cracker? His own spit is worse'. And then I apologized and told the VERY nice nurses and techs that they were fabulous to get us in and I really did appreciate it more than words can express. And then something amazing happened. We got an appointment for the next morning WITH sedation. Glenn and I were surprised, no, we were stunned! Stunned I say! We got the instructions and headed for the car, stunned. 

In the car, I looked at Glenn, he looked at me and he said: A fucking cracker! We laughed and Bug played quietly with his Doodle Pro. We thought he would sleep. Shows you what we know.

Today, I was again in the Hospital walking its halls heading to Pediatrics. I hate going to Ped's in Hospitals, I spent some time there as a kid and I easily imagine all the heartache in the place. And I also imagine the hope, but mostly I imagine the Mom's and Dad's who resolutely sit by, helpless to intercede in the battle their child wages. All they can do is be supportive and strong and pray. A lot. I know how those prayers go. Too many prayers for too many children that should be outside running and playing and getting dirty but instead are hooked to machines and spending Christmas in sterile rooms. I looked at my boy holding my hand and I felt the same way I felt almost 6 years ago when I saw him the first time. Awe, love and fear. I adore this boy. He is is father and he is perfect to me. He is a handful and I would not trade it. Ever. But I must have answers, and I must find a way to ease these seizures.

There are some parents who would argue: It is who he is, accept it and live with it and make him comfortable, this is normal to him. We have accepted this is who he is, we have to put locks on the outside doors that he can't operate or can't reach, and we do it and we don't complain. But, when he wakes from a night of 2 or 3 seizures and he paces and cries because he is aching...people forget that ALL the muscles in his little body constrict. They tighten, as tight as they can, for a minute or two and then they relax only to do it again few hours later. By the look on his face, we know he hurts, physically hurts, we give him Ibuprofen and hope it helps. We may never know if it does, he may never talk and I accept that. BUT, I must do all that I can to alleviate the pain I see in his beautiful face almost every morning. This is my mission!  So I placed him on the bed and answered all the questions and watched him slowly start to get upset.

I smiled when he was upset, only because I know what will happen next and I like to watch people, especially women, react. I am cruel, sort of. When Bug gets enclosed, he will reach for and/or grab anyone he thinks can help him escape. Once he secures him/her in his very strong grasp, he will kiss and then tug. It is hysterical. True to form, every woman in the room, two BYU nursing students, Susan (the sedation nurse), Linda (his nurse) and the very wonderful lady that helps him adjust to being in the hospital (forgive me, her name escapes me), all got hugged, tugged and smooched. He makes people smile, even when he is grumpy. That's my boy.

After a great conversation with Dr. Osguthorpe, Bug was given the IV. I say that matter-of-fact-ly but...it was interesting. By the time they were ready for the IV, all of the people in the room had felt his strength. *I* am used to it and can muscle him back, but they were concerned. SO...I held him, Dr. O held him, the two BYU students held him and Linda had his arm, needle poised precariously above it. I joked; he has good veins. Linda agreed, to which my response was: You're welcome, they're mine. Everyone giggled and Bug wailed. Now, with 4 adults on him, he stood up. No joke, he STOOD UP, and I took him back to his knees but had to let go of one arm to do it which he promptly used to grab at Linda. She brushed it away as if she were a linebacker protecting the quarterback, she's that good. Oddly, the needle didn't make him jump, the catheter did and we all struggled to keep him still. I knew I should have climbed on the bed and pinned him but...no matter it's done.

A few minutes later, as I was holding him, trying to comfort him, he slowly started to quiet down and then, gently drifted to sleep. This was the part I was dreading. I had to leave the last time I watched him sedated. It made me too sad for some reason. But I couldn't leave ever again and I didn't have a choice anyway, Glenn had to go into work. It was so gentle the way he drifted to sleep, I was surprised and relieved. They called for the EEG tech and ten minutes later I watched him start to lock up. 

'Oh, seizure.' I said quietly. And three nurses ran to his side but I was there first. Linda called out time and I held him, reassuring him and waited for it to pass. I turned him on his side so he didn't choke on his saliva and watched him start to blink. It wasn't bad. Not full T/C. Dr. O came in a few seconds later but it was over. He asked how long. I said: less than a minute and asked Linda how long it really was: 45 seconds. Damn, I'm good. Damn...I don't want to be able to gauge time like that.

We may have missed it but at least we learned a few things: 

1 - The sedation did NOT hinder his brainwaves enough to suppress the seizures (sad but good)

2 - His brain was in pattern for seizure activity. Meaning we would get realistic and a probably VERY accurate look at how his brain acts when he seizes without actually seeing the seizure itself. (good and good)

Glenn came in as they were placing the electrodes. And Bug slept deeply, and contently with no more seizures. He did have sudden all over spikes, which is fairly normal for a youngster, but nothing that anyone there went: Wow, look at that. At one point, he woke up slightly and stretched, pulling 5 electrodes off in one swoop of the hand. They had to stop and reattach them. I couldn't help but giggle. Even asleep he wanted nothing to do with it. They tried a strobe light to see if it would kick off a seizure. He barely reacted to it. When it was over, he did NOT want to wake up, he was too content. We all tugged on him and petted him and called his name...and he slept. 30 minutes later, he woke up...pissed. 20 minutes after that we walked him down the hall to the amazement of the nurses. I guess most kids aren't that stable that soon after. He has GREAT balance. He was a little lethargic for a few hours and didn't eat much for the rest of the day, but he did fine really.

So now we wait until the 19th. On the 19th, Dr., Vincent will decipher the EEG for us and we will start medication. I am scared and hopeful. I have watched my happy little boy disappear into silence. I have pounded on that wall between us and I am beginning to see the small cracks appear. It won't be too long before it's shattered and he begins to understand, and be a part of the world around him. And I will no longer dread the dark but welcome sleep as renewal  and a break from the madness of active toddlers. Seems simple and yet..still feels so far away.