19 posts tagged “bug”
I was driving home tonight, having spent a rousing round of 'guess where the book I want is' at the Barnes and Nobel, when I got to thinking (I do that when I am alone). I pondered the things, the really small things, that we take for granted everyday. Not the existential stuff, life and all that. The really simple tangible stuff. Like the fact that I was driving at a rate my Great Grandmother couldn't even fathom. The blackness of night all around me, red tail lights ahead of me, Bon Jovi on the new stereo speakers and the tires spinning at a rate of 21.48 times per second getting me swiftly to my destination. Not that Great Grandma DIDN'T think about traveling at a fast rate, I am sure with a dozen kids running around she certainly would want to expedite delivery to the required destination. It's just, I imagine these things weren't important to think about to her. Why would they be? If she wanted to go anywhere, it was a major event. One just didn't jump in the car and head to the book store. Who gave a crap about speed when she needed to figure out how much food to take?
I also thought how many times I have opened my eyes to the unfairness and injustices of life. How many times I saw the ugliness and yet opted to search for the beauty. How many days I accepted the strain to achieve balance readily. To look at the good things, the simple things, to look beyond the moment. To stretch into that being within us that gives us insight and perspective. To not outweigh the good with our own self-indulgent selves. We shoot down what would take us up, by seeing what had not happened that we wanted to happen. We break our own spirit by deeming as 'bad' what others might be grateful to have.
I recognized that my days are stitched non sequiturs. I wake up, maybe after a good night's sleep, maybe not, to breakfast, a yet to be determined food, and then I check email. The children eat, and the begging to go outside to play begins, these are the constant. The randomness begins AFTER breakfast. Will Bug play with anything inappropriate and create a mess that is gag-worthy? 5% chance of happening so we move onto will Taylor bring home a friend. 25% chance of happening. Bug needs a diaper change 100% and Tay will beg for something sweet and completely unsuitable for the time of day, also 100% but today...here's the really random stuff, the nice neighbor walked Taylor home. She told me she is unexpectedly pregnant. I would be thrilled, but my thoughts are not everyone's thoughts and I can not judge someone on what MY reaction would be. THAT invalidates who they are and what they are feeling. She hasn't decided yet how happy to be, they thought they were done. I get that. I really do. I also believe, perhaps naively, that she will be thrilled eventually. She did the whole trying to conceive thing, all the tests and what not, she understands what it take sometimes. Today, I also learned about the frontal lobes of our brains. The most developed part of our brains, the sets us apart from animals. In most cases anyway. And that led me to the book store. I wanted to learn more about our lobes.
But, not only did they NOT have the book I wanted, I learned that either no one writes books about epilepsy, or they just don't think that they need to carry any. In fact, the Chemistry and Biology section was one bookcase. Physics and Astronomy: also one bookcase. If you want to learn how to bake cookies or entertain guests you have to peruse 6 bookcases. An entire wall of cook books. Eating is important, but so is Chemistry. Cooking is chemistry. But not as many people want to actually learn what ares of our brains control speech and motor functions, they want to learn how to prevent that green film on a hard boiled egg.
That's what I get for thinking. Green slimy eggs.
What a week. Started some new projects:
And one more but it's not ready for debut, as if Tayisms was..but I did it anyway. I needed a place to put all the info about Bug without depressing my few friends here. This will be about the family time and personal stuff. This is Bug is all about his day to day events, or lack of them. Tayism's - just what it sounds like, she says some really great stuff and I didn't want to forget that.
Bug had another EEG and spent some time in the ER this week. He was sick, not because of his Epilepsy. Details are on his Blog. I will try to update with pictures and about the missed events. Easter, Tay's Birthday, Memorial Day, I'd say Mother's Day but...that wasn't that big of a deal. Although, her class did some things I will post about.
After I sleep for a few days.
I was a little surprised that the day I thought was the Kindergarten program was also Bug's graduation. Found out when I pulled the invite out of his bag the day before. Must have missed that part. But wasn't going to MISS it. Tay had to go to school and his program started at 1:30, she gets picked up at 2:15. This was gonna be cutting it close but I figured: How long can 5 and 6 year olds possible sing? The answer is: long enough for me to MISS the graduation ceremony because I had to pick up Tay. Seriously, the program was over a half hour.
Bug did not REALLY participate of course, what with him not being able to talk and all. :) But his phenomenal assistant, Nellie, held him and sang with him, while he spun a car, for half the program. She then filled us in on the practices. (I love this woman, I would adopt her if I could.) Bug had been going to them and doing fairly well. She told us that he made it through the ENTIRE program the day before. She said that he would somewhat participate on a few songs and while he was on my lap, when the kids were singing, he did sound like he was singing along. And he clapped when they clapped and got quiet when they were done.This was a big deal. It was great to see.
We went back to his class for cookies, Sprite, the video and the graduation. Luckily, Cheryl was with me, because I had to leave to get Tay at this point. Now, Tay's school is 3...that's right 3 minutes away. I was there and back in 8 minutes. Yea, I timed it. And in that time, I missed it. They were done. I was upset but Cheryl assured me she got pictures. Turns out she didn't. The picts I have are blurry at best but at least the video is OK. Doesn't matter. He got his certificate, which is hanging on the board, and a hat! They made him a hat! It IS the cutest thing I have EVER seen on him, for the 3 seconds it was on him :). I can't believe he actually is finishing Kindergarten, Resource Kindergarten but Kindergarten all the same. This means we have 1st grader living in our house!
We had his IEP a few days before. Bug is going to a new school next year. 1st Grade will be at Dan Peterson Elementary. We are VERY thrilled about this and I think Bug will do well. At least I pray he does. I still don't think they know what they are in for. With him, or his Mother. Congratulations Bug!
I took Tay to the Thanksgiving Point Museum of Ancient Life a little bit ago and she was anxious to go back. And take Megan with us. So we did. Took Bug too. It's a small museum, but very well stocked with a variety of fossils and plenty of interactive displays. I would have loved it as a kid, I sure do enjoy it as an adult. I could detail the trip but really it loses so much when you haven't already been there. Besides I don't remember it all. The picts tell the tale.
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!
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.
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.
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.
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!
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
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.
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
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.
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.
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