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. 

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.