Tay and her cavities

It seems that no matter how careful one is the children WILL eventually get cavities. And Tay did. And she needed

Tay before the knock out

to have them repaired. And Tay did.

Although she was VERY good at the Dentist's office a few weeks ago, she would need to be sedated in order to get it all done in a timely manner. So off to the Riverwoods surgical center we go.

She was nervous about the needle. The I.V. that is. But there was no need. She was sedated by mask BEFORE the needle. Yippeee!!!!

There are all sorts of details I will provide but I have to do that later...gotta run out again. She did well and her teeth look lovely! And she got to go to the Hello Kitty store and go wild. Ugh.

Phone hate and redemption

Hate my cell. I have for a while. Piece of bad cell phone..ness. I won't tell you which one, doesn't matter and I don't usually bash products openly. MY experience is not EVERYONE'S experience. The SERVICE I will complain about openly and with great zest. After the phone call I missed turned into a voice-mail message 2 hours later...I was officially done!

Now, I talked to a few other Sprint users who have been having the same problem here in Utah, so no new phone would do, MUST change carriers. Glenn has a Blackberry on TMobile for work and when he is in London, it's seamless. Bonus for TMobile. AND every time I try to log in to my Sprint Account on-line it tells me I don't exist, that my phone number is NOT one of theirs...well it won't be very soon. I have been with them for over 10 years and at least that many phones, but their Customer Services BLOWS.

I had TMobile for business a few years back and they were VERY helpful and their rates where fabulous! Another Bonus for TMobile.

I am a pretty straight forward cell user. I don't care if I waste minutes, I don't care if I pay extra for going OVER my alloted minutes, BUT I DO care if I can change my services without signing in blood for two more years. TMobile lets me change AND lets me add a phone without a new plan unless I need one. This may be a limited offer but still...another Bonus. With Sprint, if I bought a new phone for me but didn't get Glenn a new one AT THE SAME TIME, I had to sign up AGAIN when I DID buy him one. So, I would sign the contract for my new phone and then a week, or a month later, sign another one when I bought him a phone. Dumb is an understatement.

I hate ATT. For apparent reasons..anyone remember Ma Bell?

Verizon was too expensive.

TMobile has the G1.

G1 Android

 

And now *I* have the G1. It's sexy. Turning out to be the best phone I have owned in a LONG time. It has all the things I need and more. I can call people with it. :) I can check my Gmail and launch my Chat, I have maps and internet, unlimited text messaging with a data package that is still LESS than my Sprint package. Cool. Sprint charged me PER message and I couldn't add a text package when my friends and family started hitting me with texts, unless i signed a NEW contract. I have a G1 and a new service and I couldn't be happier...NOW if I can get my number transferred without a penalty....

Truth, justice and nothing good

It seems that everywhere I turn lately I am reminded of how I have failed instead of the ground I have gained. It's very tiring and emotionally draining. Once in a while it's nice to actually FEEL like I've done something valuable for someone else or to feel like I can do all the things everyone else can do. But, I have been tormented lately by my shortcomings, tormented by my own hand and by little things I read INTO what is happening and, also, by real comments made, not imagined. When did I become so delicate? When did I require this much validation and support? Because this is out of character, it troubles me even more. Makes me look at myself with more scrutiny and more contempt and yet. I lack the energy to change any of it. Some may call it depression, but I disagree. When members of my OWN FAMILY make little comments, well then, it really is something I have to examine.

I suppose, I am lacking in a lot of ways as a Mom. I am lacking patience and selflessness and dedication. I *thought* I had those qualities but I must not really otherwise the people in my own family wouldn't correct my children. Wouldn't have to remind them to say thank you and please, even though Thank You were Tay's first words and she does say them pretty regularly. There are people that have actually told me, and really do believe, that all I have to do is just be more consistent with Bug. I feel judged, I feel ignored, I feel lonely and isolated. I hate it.

The frustration from chasing around the 6 year old and turning off the lights he turns on every few seconds, and from sweeping the floor for the 3rd time in 3 hours...that frustration has no words. It has no voice, for when I tell my Doctors that he is bouncing off the walls, they ignore it and ask about his seizures...his seizures are bad enough but then his ADD/ADHD and OCD aren't even being discussed. And this, is my fault, I am to blame, I should be screaming and yelling and begging and crying for someone to help. I should be doing all sorts of things that, apparently other Mom's have done. That I have not.

People look at Bug and see a pretty little boy. They don't see any CP, or Downs, they don't see a cripple, or a child with apparent issues and that makes it so much more difficult. Even my own family thinks he can do more than he can. I am beside myself and feeling like a total failure. And there it is. In all it's glory. Where it HAS gotten better, it has also gotten worse. 

I will, most likely, overcome these feelings, probably later than sooner, and I will do what I have always done: Go it alone, bottle it up, because who really wants to hear this from someone that is mostly happy? Even now I write this and only a few people will read it, a few that are genuinenly good people who would help if they could. But I don't expect anyone that can ACTUALLY make a difference everyday to read this, because, they don't. So this is my way of venting. It's as bad as it gets for me. And nothing good will come of it. I will do what I have to do, because it is what I have always done. I will be there for everyone else, sharing their triumphs and their joys, being judged by them in the process only to be left behind. It is the way it has always been, and so I move on.

The record ends...

Bug had gone 13 days with no seizure. 13 wonderful days and nights, we are seeing the old Bug more and more every day. And then, last night, a little over 30 hours from his latest vaccines, he had one. Then early in the AM he had another. Two. Two that I had NEVER seen before. They were not full T/C, he was rhythmic in his convulsions but only mildly. He did not blink, and instead of hard swallowing, he was breathing hard. And he reached for me, over and over and looked terrified. It was tough. These two ones, were VERY tough for me but he seems himself today. And the terror lasted for over 2 minutes each time. Just shy of 3 in fact. I hate them. I hate them for he is so sweet and so darling and so frustrated with not being able to talk to us. We are starting to see that frustration again, he displayed it when he was 3 but not since then. Not until now. I hope it was just the vaccines exacerbating his condition. I pray it was, that way, I know he will sleep peacefully again soon. If not, we may have another longer road ahead of us. Either way though, 13 was a great run!

The need to create

I need to do something, to create something, to paint, to design, to build. I need to do something. I can't do anything because Bug will get into what ever it is I decide to create. The desire to create, very strong in this one at the moment. Maybe I'll paint Bug's room. While he is at school tomorrow of course. I have to do something.

Knock Knock

Bug's MRI went very well. He was still very tired (of course being sick and 6:30 in the morning helped that part.) so the IV and sedation went smoothly. He had a tough time waking up after the MRI but with a little coaxing, we left a shade after 10am. Which was good, because ALL of us were still sick and getting more exhausted as time went on. The MRI appears normal, not a surprise, the last one was good too and so we wait. Thankfully, Bug slept the rest of the day.

On our way home we decided lunch had better be Grinders 13 in Salt Lake. None of us were up for eating inside so Tay and I ran in.

Grinders is an institution in the Maughan family. Glenn himself, has been eating there for over 30 years and his father was one of Mo's first customers. Dad gave Mo a 5 dollar bill and told him that if anyone can find a better Grinder than he would buy it for them. Mo put it in glass and it hung on his wall for at least 20 years. Yeah, his subs are just *that* good.

Tay and I ordered and sat down to wait. No sooner had my fanny hit the chair when she looked at me and said:

Knock Knock.

I smiled: Who's there?

Taylor

Taylor who?

Taylor Nicole Maughan. And she's three!

Yep, that is very much a 3 year old Knock Knock joke. And so it begins.

Bubble wrap and oxygen tents for everyone!

THIS is getting stupid.

Another fever, another upper respiratory ickie something-or-other.  It's Tay. I blame her. I blame her and her damn friendliness, I hope the other little booger eaters are sick like we are too. Cuz if they ain't...she's going back to the McDonalds playland to slobber and drool over EVERYTHING IN THERE.

I knew moving back meant some introductions to illness we haven't encountered, but seriously? 4 in 2 months? 2 rounds of antibiotics and a lifetime in bed.

The worst is when Bug is sick, he sleeps, and when he sleeps...although he has been asleep for a few hours and is fine, except for the fever, which comes back every three hours or so. And he has been cuddling, Tay has been running around trying to get Daddy to play with her Barbie Diamond Castle like all is well. She sounds like a truck driver but she has plenty of energy. And I can not wait to see Daddy behind that Castle playset galloping those horses.

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.