17 posts tagged “taylor”

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. 

Taylor asked for a Butterfly Birthday Party. Sounds fun. But everyone that could be there, wanted to be there and her Birthday was on a Tuesday and that meant, no one she wanted there would be there for very long. So we planned a Chuck E. Cheese birthday on the Saturday before her birthday and a small get together on Tuesday. We bought a special birthday dress, shoes and wings. Every 4 year old girl needs wings for her birthday. I think.

Saturday, April 25, 2009 

We invited our Neighbors, The Schmidt's, and their 4 children to attend the Chuck E. Cheese Butterfly Princess Party /*-with us. All together, there was 8 adults and 6 children. Good ratio I say.

We made some Butterfly / Floral arrangements (thanks Grandma Susan for the guidance, she KNOWS what kids will like) and Tay and Cassie wore Butterfly....stuff. The Chuck E. Cheese folks had ALL sorts of available swag. And we got the all sorts of swag. The kids loved it and the big people could just sit back and let the kids love it.

Some may say Tay is spoiled and she is, but why not? As long as we keep things in perspective and reign her in why can't she have her Barbie bike at 4? Because she got one, and she got a Barbie Scooter, thanks to Nana and Papa. And that thing is more popular than the bike (although Bug loves the bike and rides it downstairs). She got a few other things but really, nothing was as important to her as having her friends there to run around with. She was on fire, running and laughing. It was lovely and I will do a Chuck E. Cheese party again in a heartbeat!

Aunt Cheryl made Tay a Butterfly cake and we left a little before 10. We were supposed to leave at 7:30. Oops. But we gave them a good tip and they didn't mind. Go figure.

Tuesday, April 28, 2009

Her official birthday. Smaller, at home, much shorter time frame. Nana, Papa, Cheryl and Scot came down and again, we invited The Schmidt's over...to help break the Pinata. Yep, Pinata. Turns out, they are professionals at breaking the Pinata. Us? Not so much.  

Tay opened the rest of her presents, we broke the Pinata and she had her Strawberry cake that she had picked out a few weeks earlier. Seriously, she had been planning her birthday for months. MONTHS. It was cute and starting to get mildly annoying, but she was thrilled with how it all worked out and we were thrilled to have a 4 year old girl living in our house. Now, let's hope she makes it to 5 before I sell her.

Happy Birthday 4 year old Girl! 

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.

She was nervous. Only about the needle. Having had her Hep A vaccine (don't get me started on WHY that particular vaccine is a sham) only a few weeks ago, the memory of the needle in her thigh was very fresh. In fact, since that shot, every few days she asks if I want to see the hole in her leg. We told her that if she had to have an IV the needle, it wouldn't be that bad and it would only feel like a little pinch. Didn't help. On the drive there she asked and asked about the needle and I assured her that if *I* wasn't nervous, there was nothing to be nervous about, she would be fine. She had expressed concerned about 'being put to sleep' earlier in the week. It was funny, and she was relieved when I told her not like a sick doggie.

We got there spot on time and signed her in. We were called back almost immediately and thank heavens there was TV with Over The Hedge playing since we waited almost an hour and a half before the Doctor showed up. It gave us time for her to relax and put on the new shirt the Surgical Center gave her. Pink shirt. Good call. She saw a plastic wagon across the hall from us and asked me what that was for. I told her I wasn't sure but maybe it's what they use to haul kids and/or things. Oh, was all I heard.

When the Doctor got there, he told her what he needed to do to her teeth and how she would wear a mask, blow up a balloon, and then get a Popsicle. Her face lit up. A Popsicle? That was worth it. She then queried: No needle? He looked at me and I explained, he smiled and said: No needle while you are awake. Luckily she didn't catch the "while you are awake' part or I would have had  A LOT more explaining to do. Then the anesthetist came in a explained about the mask again. She was cool with it, told him she liked balloons and was really good at blowing them up. He grinned and then offered her a ride in the wagon...she jumped off my lap and right into the green thing. Didn't even look back, I had to follow her a bit and tell her good luck, love you and I will be here when you wake up. She smiled: OK, bye!

The waiting was tough. Although I have been through all of it with Bug, it does NOT get easier. I texted, emailed, surfed the web, did whatever I could to keep myself occupied for the hour and twenty minutes that it took to see the Doctor again. He assured that all went well, that she was a complete joy and very sweet. She was in recovery and he walked me to a room to wait for her.

While I was waiting, I heard a cry, it sounded a little like Tay and since she would be groggy, I had no idea what she would be like so I went to see if it was her. Now, when Bug has his tests that he needs to be sedated for, we are ALWAYS there immediately following the procedure while he is waking up. Not with Tay, not this time. When I found her little body all curled up with a big hospital blanket on her, she had two nurses by her. They were saying how cute she was and then they saw me and asked me what I wanted and told me to go back to my room and wait. I was a little stunned and then asked them if that was her crying...they told me no and asked me to go back to my room. I did and was a little stunned. I kept hearing a cry and wondered if it was her...but I waited.

After about a half hour they brought her to me, asleep and wrapped up. She opened her eyes and smiled when they placed her in my arms and I cuddled with her tightly. We sat there for another 40 minutes and then a nurse came to check on us...Tay woke up...I told the nurse all was well and she left. On the way out the door Tay said: I didn't get my Popsicle. A few moments later...Tay got her Popsicle and ate the whole thing. It's an old trick to get the child to wake up. The joy of the Popsicle itself is emotionally gratifying and then the coldness of the Popsicle is physically a bit of a shock to the system and wakes them up. She woke up. She woke up a lot and asked when we were going to the Hello Kitty store.

thesisters.jpg

We picked up Megan, went home and ate, Doc said she could eat whatever she wanted and so she did. We ran to Salt Lake to pay rent, get stuff at Joann's and hit up the Hello Kitty store on the way back. She was in heaven and now has three Hello Kitty sisters: Hello Kitty, Daisy and Baby Amanda respectively. She was amazing, and I am in awe of her.

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.

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.

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.

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. :) 

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.

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.