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. 

July 4th Parade

What? In November? Better late than never. Turns out when you loan 'other' people the camera you get picts of the PARADE and not the family. Go figure. So there aren't too many of people I actually KNOW. About the Princess...Tay saw her coming and when she got close enough, Tay blew her a kiss. The Princess saw it and blew a kiss back...this is her right after the kiss is thrown. Bug...well...he pretty much was just hot and unhappy :).

 

 

Bubble Time!

We were in Utah, it was warm, the kids needed outdoor time. So we decided Bubbles where perfect. We bought a bubble grill, took it outside and captured the fun as it developed. Bug was little out of it but Tay and Megan were in full swing!

 

It's raining

I love the rain and the wind. Dunno why actually but I do. Tonight I am in heaven. So...I downloaded the images from Halloween and found so much more that in the rush of moving, I had forgotten all about. Like going up to the mountain in June and letting the kids play in the stream. And July 4th. Glenn's birthday...we played pin the tale on the donkey and I have the pictures to prove it! The Pumpkin Patch in Utah this year and of course Halloween at Omniture and the new house. Sigh..but the images will not upload..so we wait.

 

Is it me?

I haven't felt like posting.

I am a happy person. I have a lot to be happy about. Life is good. Well, except the Boy is still having almost nightly seizures, but at least we have another appointment to see yet another Doctor and I will run this one into the ground before I let him out of all the tests I want. BUT...

I haven't felt like talking. Odd for me.

I look back on the past few months and they have been very painful. I have been betrayed a few times by people I thought I should be able to trust and it has taken its toll. Didn't realize it until today. I can't look as many strangers in the eye, I don't feel like making friends. Most seem to take what they want and leave. Or I become the butt of the joke. It hurts and I am very tired of being talked about. My life is helping people. I make them smile, I give them hope, I validate them and I ask for nothing but friendship in return and I get my whole life made into a sport. I opened my heart, I gave my time and then they talk about how selfish and inconsiderate I am because I don't call (Not you Nando...never you!). I validate their emotions and they make fun of mine. And Glenn, he has been born the brunt of some of it. Poor, sweet man. Just straight and stupid jealousy caused his pain. And I just don't have the energy to be charming at the moment, outside of my own family and a few very select friends. Again, I am rambling but I need to speak it. And so I have. No pity. I am done.

Tagged: 7 times 8 (oops)

8 Favorite TV Shows

1. Top Gear
   
2. CSI (the original)
   
3. Iron Chef America
   
4. NCIS
   
5. Law and Order (any) 

8 Favorite Restaurants

1. Baja Fresh
   
2. Windy's Sukiyaki
   
3. Chuck E. Cheese (the pizza is better now but still..it's just that the kids love it)
   
4. Panera Bread Company
   
5. Sonic
   
6. Wendy's
   
7. Olive Garden (can't get enough of that salad!) 
   
8. Pizza Hut
   

8 Things that Happened Yesterday

1. Slept
   
2. Woke Up
   
3. Got a PO Box 
   
4. Changed my address a the Credit Union 
   
5. Got my halloween costume 
   
6. Unpacked the Uhaul 
   
7. Returned the Uhaul 
   
8. Slept
   

8 Things to Look Forward to

1. Getting settled in Utah
   
2. Getting Bug and Taylor to school 
   
3. Bug to a Doctor 
   
4. Me to a Doctor
   
5. Thanksgiving in Seattle
   
6. Meeting my great nephew 
   
7. Helping other couples get pregnant 
   
8. Sleeping without worry
   

8 Things I Love about Fall

1. That I will actually have a Fall for the first time in 10 years! 
   
2. Not being in California
3. Everything!

8 Things on My Wish List

1. No more seizures for Bug
   
2. No more seizures for Bug
   
3. No more seizures for Bug
   
4. No more seizures for Bug
   
5. No more seizures for Bug
   
6. No more seizures for Bug
   
7. No more seizures for Bug
   
8. No more seizures for Bug
   

8 Friends I Tag

1. Everyone that reads this...that should be about 4 people :)
   

Life is what happens...

On Tuesday morning of last week, I got a call. A bad call. To date, the worst call of my life. Glenn called to tell me his father had passed away in his sleep.

What? No answers, just gone. K, that ain't right.

It doesn't feel right, it doesn't feel real, it feels numb. Even now, after seeing him off with grace and dignity, he's not gone to me. He's in my mind so clearly, sitting beside me, telling me stories about his adventures, teaching me about rocks and minerals....holding our children. How can Grandpa Glenn be gone when I can still smell him and hear him?

I can feel his love and support still, his words echo in my ears: Welcome to the family. That was 14 years ago and I can still feel that bear hug! He's still with me and always will be. I still think in the same terms: Wow, that was spicy! Your Dad will love this!....and I cry.

Beautiful man, smart, funny, compassionate, kind, firm, dedicated, loyal, diligent, faithful...they don't make him like that, and I mean they never did. He was a unique person, and I do not exaggerate. No one has ever been on this earth, in his way, so purely selfless. So often misunderstood, but brilliance usually is. I see him in his boys, strong men, loving men, totally frustrating men they are so independent. Grandpa Glenn always took the high road, was always honest and never had anything to ever be ashamed of, he lived so wholesomely. People missed that about him because he was so intensely private, they rarely were there when he stopped to help someone on the side of the road, or jumped in his boat to race to a car that had gone off a bridge and into the water, intent on helping (turns out they were filming a TV show :) )but he and his boy, MY boy were going to help no matter the personal cost!

He was always thinking of others, and especially his children. They were the center of all he did. Many years ago, he was approached by the property master filming a movie, Grandpa Glenn had just purchased some surplus equipment and the man inquired if they could use some, or all, of it for a couple scenes, offering payment. Sure, he said: But I won't charge you if my kids get to be on set. So, when Peter Venkman, Egon Spengler and Ray Stantz are thrown out of the University and their office is being cleaned out...yea, that was Dad's equipment. And his kids were there.

I once told him I needed to get an alternator for Glenn's car...and I was hoping to buy a rebuilt as money was tight back then. I told him I would be heading down to the parts store at 7:30 the next morning. At 7:00 am there was  knock on the door and this greasy hand came shooting at me gripping an alternator. Here, he said, I think it's the right mounts for a chevy. I had to dig through a box of 5 but I think this is it. And, I'll be damned, it was. He watched me fix it (not one to intefere unless asked), and we drove it around the block.  You see, it turns out that Geologists are great to have around, the good ones don't trust anyone else to repair their equipment and so they stock the most wonderful things!  I believe I earned his respect when we were at a junk yard and I found him a 5 ton hydrologic jack and bell housing. I dragged the jack over, he stood there with this grin on his face, watching me, and I said: I think you can use this. He smiled like a kid who had just seen the world largest gumdrop and said: I think I sure can!

I am really gonna miss him.

He's a great Big Brother!

We were driving, all of us, and Taylor had her hat. She demanded her pink hat so she would stay out of the sun. So, we fetched it, she wore it and we went outside, got in the Cruiser and headed somewhere. Don't ask, I can't remember, life is a blur right now.

While heading to that somewhere, the princess fell asleep and her hat rolled off her head. Bug saw the hat go, stuck out his foot and stopped it. He brought his foot up, grabbed her hat and placed it back on her head.

All the women in the car: Awwww!!!!!

Bug: Smiles and reaches for a french fry.

Darling Boy

Can't get away from Mom!

The first time I heard John Lennon's Beautiful Boy (Darling Boy) I thought: How lovely. And I learned all the words.

I would sing it loudly, and with great emotion, whenever I heard it playing.
A few years back it took on a new meaning to me. Of course it would be that way, becoming a mother to a son. It is a natural emotional progression. And the song would make me smile.
And it was added to my iPod, of course, to sing and sing and sing whenever I felt like finding it. Two years ago, next month, it became something entirely different. I would hear it and sing it but I would feel a twinge of fear, almost despair that I would never see my son grow to manhood like John. Of course, it would be my son taken from me, instead of his loss of a mother. And I learned to live with the fear and I learned to enjoy that song again and began to gather pictures to create a video for my darling boy using John's words as my backdrop.

Falling asleep at the parade!

One night last year it began to change again. Every night became something to fear. The sun going down turned to dread and the song makes me cry. I can not sing it loudly, I push back tears. I watch him sleep and I listen for any sound that may warn me a seizure is about to occur. I wake at the slightest sigh, it is like having a newborn again, only this newborn is not crying for hunger, he is screaming before a grand mal. He is beautiful, he is so strong and I watch him sleep. I wait for the time in the night when I rush to his side to comfort him until it is over. And I pray, every night as he drifts to sleep., I pray that this night will be restful for him. He must sleep near us, we have to be there, 'just in case'. Just in case he has one and his lungs forget to expand again, and his heart does not slow down enough, or his tongue gets bitten. This is night time for him and for me. And John's song reaches into my heart more than ever...as I watch him sleep.

Beautiful Boy (Darling Boy)
Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Cuz it's a long way to go,
A hard row to hoe,
Yes it's a long way to go,
But in the meantime,
Before you cross the street,
Take my hand,
Life is what happens to you,
While you're busy making other plans,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Darling,
Darling,
Darling Sean.

A girl and her fortune

We had some Chinese food. When one moves houses, one eats a lot of fast foot and ingests jinormous mounts of Coca Cola. All hail the mighty junkiness of it all. So, we ingested some Chinese fast food one night and Daddy gave Taylor her Fortune Cookie.

She has had many fortune cookies. She gets it.

She takes the cookie, turns her back to walk away and opens it. She turns back toward Glenn and hands him the paper fortune quickly and turns away again heading toward the couch. Glenn takes the paper and queries:

What did your fortune say?

Taylor stops dead in her tracks, does a half turn back toward him and points saying:

It says: watch out for alligators.