Welcome to the World

bebe max
Originally uploaded by xenophod. Here's Max, king of all Wild Things.

A Meme! A Meme!

I've been tagged! Woo hoo!
Margaret tagged me because "Amberthyme cause she always has something good up her sleeve". Um, I'm sleeveless today but maybe I can connect the dots on my arms and come up with something!

A Game Of Tag


Here's how you play:

Once you have been tagged, you have to write a blog w/ 10 weird, random things, facts, habits or goals about yourself. At the end choose 10 people to be tagged, listing their names and why you chose them. Don't forget to leave them a comment ("You're It") and to read your blog. You can't tag the person who tagged you. Since you can't tag me back, let me know when you've posted your blog so I can see your answers!

1. I cry over just about any touching moment. I even got mentioned on the front page of the local newspaper for crying. Sigh.

2. I hate hypodermic needles with a passion. Actually blood draws creep me out more than shots. I will not watch when they draw my blood. I force myself to watch when they draw my daughter's blood & insert IV's to make sure everything is O.K. not that I can do anything about it if they mess up, but if she has to have the poke the least I can do is watch.

3. I am math impared. A math teacher of mine once told me that I should buy a calculator that could do fractions for me because I wasn't going to get it on my own. Same teacher told me that it was better to be the top of a lower level class than the bottom of a more advanced class.

4. Girlz nite out ROCKS!

5. I am a close and personal friend of Weird Al Yankovic. Along with everybody else who belongs to his fan club. I saw him at RenFaire one year though. No lie!

6. I get paralyzed by indecision at times.

7. I pick at my eyelashes.

8. I belong to the cult of Apple Products. I was indoctrinated in the 2nd grade when I was in a "special" math class that used Macintosh computers and math games to try and improve my math skills and give me warm fuzzy feelings about math. I now have warm and fuzzy feelings about my computer. As for math. . . see #3.

9. I disolve into laughter at the most unusual things. Most recently when I found out that Paul Simon was inspired to write Mother and Child Reunion by a Chinese chicken and egg dish. Most frequently whenever I botched the "this is my brother larry and this is my other brother larry" joke when attempting to introduce my brother and his best friend. You had to be there.

10. I am a Major Geek. I took the Geek Test online and I scored over a 50%. And I'm weird. But you figured that out by now.


I'm tagging -

Xenophod, Krystal, Berzerker Librarian, Anne-Marie T., Anne-Marie M., and anyone else who would like to do this.

Paranoia, sort of.

O.K. So a few months ago my husband wakes me from a dead sleep to tell me that I need to change some stuff on my blog because murderous psychos could find us and steal our kids. I'm sure I got a very long explanation at the time but as I was very tired (and it was 2 a.m.) I fell back asleep, "honey are you listening to me" he says. "Um. Ya. Tell me again in the morning," I say. But he didn't. It was all very surreal. So I asked my berzerk friend if he had, indeed, scared my husband with tales of doom and destruction. "Yes. Here's how a psycho could steal your kids . . . " There is no way I'm divulging that info on the web. My berzerk buddy may have a psychotic mind but at least he's on my side. Now how to fix it is to change the names of the innocent so that nobody knows who they are again. Especially since I keep getting mentioned in our local newspaper and anyone can google me and find out more. Grrrr. Eventually this ploy will succeede -- cashed pages eventually die, don't they? And Bob, Snicklfritz, and Gertrude will once again be anonymous.

The moral of this story: O.K. psychos I've got my eye on you - just don't look at my Flickr. Or my seestor-in-law's site. I'd like to meet all of my nieces and nephews some day. And just don't blog for a few months and all the psychos will go away (um, that one has a flaw - all the not psychos go away too. I've missed you all.)

Lot's to say, but not today . . .

I have so much to write about but since I'm already a sleep deprived wreck I'll do it another time.
Things I want to post about (teaser for you, reminder for me so I don't get brain drain by the time I log in with a great idea)

- Brenna & Preschool (yep, she started!)
- Rowan & Kinder
- Therin in 3rd (and the 1st IEP of the year)
- Staph infection
- Oh, Dad, what was that cute thing that Brenna said that we were supposed to write down but didn't
- My Dad & stories (board books for babys & the banilla pony)
- Work (but I probably won't say all of what I want)
- Responsibilities
- Vampires
- Renfaire!!

100th Post!

Don't know what to say about my 100th post other than WOOT!

Better late than never

Well, it's been since mid April since we last saw the Endocrinologist & the D-Team. I started making phone calls in late July. I left a couple of messages but didn't pursue aggressively. Just a polite "um, excuse me, don't we need to make an appointment to see the endo soon? It's been 3 months." I had to go down to the Hospital Under Construction in August to pick up a prescription from that pharmacy instead of the one right across from my work so I stopped by the office to make the appointment. Long story short, last Monday was the endo appointment.

The lowdown. . .
A1c 7.5 Woo hoo!
We changed some pump settings.
Signed off on the preschool plan.
There was something else cool about that visit
but I lost my train of thought.
I guess it's OK to lose a train, especially if it's a Thomas train covered in lead paint.

Not so good news. Someone forgot to order the other blood tests . . . so we have to go back to see the vampires again.
Sigh. Poor baby.

Chicken?

So the burning question generated by the last post is how is Brenna doing in preschool? Well, she's not going yet. I felt good about training but there were some things I wanted to talk to her Endocrinologist about and Al lost his job. So the combination of those two things helped make my decision to keep her home for just a little bit longer.

And I really AM chicken. I just couldn't part with all three children on the first day of school.

D-Teacher is In

Aaak! Tomorrow is D-day I get to teach Brenna's preschool about d-care. I have too much information at my fingertips. I hope I don't scare them away. I got some great advice from parents on my CWD email that I subscribe to so I'm going to use it. I'm going to keep it mellow tomorrow and get Brenna's routine set up and let her play with the kids while I talk to some of the teachers. I want to stress that we do not expect perfect numbers and that it is difficult some days to see really good numbers in a 3 year old. The very very basic stuff is if she's low - feed her, if she's high -- give her insulin and/or have her run around. If she's acting wierd -- poke her finger and treat her. If for some reason you can't poke her pretend it's a low and if it's not we can fix it later. Wow. So much for my 12 page instruction booklet. I just hope I can figure out how much to reduce her basal rate for play time while I'm with her there so we all don't have to worry so much about scary lows while they learn the basics. Wish me luck. I'm going to need it.

Diagnosis

Brenna's Story:

Toward the end of July last year we had a heat wave. Brenna had just turned 2 the month before. The weather was over 105 degrees for a full week. The kids and I were all hanging out at the refridgerator waiting to take our turns filling up with water. The temperatures dropped to a somewhat more normal summer temp. 90 - 100 degrees. I noticed that I was changing a lot of wet diapers so started to try and potty train her. She had just gotten tall enough to reach the water dispenser in the fridge all by her self. Usually she would fill a cup, dump it on the floor and play in it. I heard her filling up her cup and ran in the other room -- she was just drinking. Whew. Then I watched her fill up the empty cup to the rim and drink it all gone, not a drop spilled. That day I counted 12 diaper changes - as many as she had as an infant. The next day I had to work so my Mom was watching the kids. She said that it was strange how much she was peeing and suggested I look up stuff about diabetes. I looked on the internet and the only symptoms she seemed to have were the drinking and peeing. This was a Friday and my dad called me that night to tell me that mom was worried and that I should take her in to the doctor's office and get her checked out. That evening between 5 p.m. and 6 a.m. I changed a bunch of really full diapers. At 2 a.m. the diaper exploded. Not literally but it was so full it was like we had soaked it in the pool for twenty minutes and her bed was sopping wet underneath her.

Early the next morning I called the advice nurse and she got Brenna an appointment. I blogged a little bit about this last year here. The doctor we had the appointment with is Kaiser's Diabetes Peditritian in our area. I hadn't met him before and I felt like I got the brush off when I mentioned that I looked up the symptoms on the internet and that when it pointed to diabetes I brought her in. She was quiet and very "good" the whole time -- and wouldn't drink water while we were at the office. It took a while to get a urine sample and once we had it they did two tests: glucose & ketone. She had Moderate Ketones and no glucose in her urine. He told us she was dehydrated but didn't have diabetes, just give her more water. MORE WATER! Other than the doctors office she was drinking constantly. I told him that and asked him why she was dehydrated when she was drinking so much? He didn't have an answer but I was relieved when he said no diabetes I counted my blessings and took my daughter home. That night we went camping and ate a ton of marshmellows. She was having so much fun that day and Sunday that she didn't drink as much and I thought we were out of the woods (figuratively & literally).

Monday and Tuesday were heavy water drinking days and on Wednesday a friend suggested I weigh her diapers and keep track of the amount of water she's drinking and take her back to the doctor soon because there might be something else wrong. I called that afternoon to see if I could get an appointment with her regular pediatritian. Thursday at 3 p.m. Thursday while I was at work my Mom called me. Brenna was lethargic. Mom was having a hard time keeping her awake. She woke at 7 a.m. and went to sleep at 9 a.m. slept until noon and wouldn't really eat more than a few bites. She said that she thought Brenna could wait until the Dr. appointment. Mom dropped the boys off with one of my best friends and met me at the Doctor's office. We saw Brenna's regular Pediatritian. She took one look at Brenna, asked what was going on, and sent in a lab tech. The guy pricked her heel and put this little white strip up to it flipped it over and it was dark black. He kept flipping the strip over and practically ran out of the room. Dr.E came back in and helped us gather up our stuff and took us to a back room with hospital beds and had Brenna hooked up to an I.V. At that point she gave me a hug and told me how sorry she was that my daughter had diabetes. She said that there wasn't much that she could do at this point so she would be going to a Kaiser hospital in Sacramento - they had a bed but they needed a doctor that would take her. Then, we waited a while longer. They found a doctor but didn't have a bed. I didn't understand but held my daughter. Mom took off to go get stuff packed for me. I called my husband at work to tell him the news and he came as soon as he could get away. For an hour I held my sleepy girl in my arms and cried quietly and listened to the Nurse call Sacramento. I called my work and told them I was going to be out for a few days and I wasn't sure when I'd be back in. Al came in and sat with us. By now it was after 5 p.m.

At around 6 p.m. Dr. E came in and told us that Brenna needed to be in a hospital and that Sac was taking too long. She called an ambulance and they would be taking her to Memorial - across the street from my house. She was strapped into her carseat, her carseat strapped onto a gurney and I wasn't allowed to ride in the ambulance. We arrived at Memorial about 20 minutes after she did and I sat with her in the emergency room in a daze. Mom got to emergency around 9 ish? I don't remember much. We sat together and the doctors didn't do much other than bring her some diet 7 up. They did take x- rays and I think they gave her some insulin. At one point Brenna was acting like she was drunk. It was hard to tell, she was really happy, animated, giggled a lot, but when she started to slur her words. (Two year old words are hard enough to understand when they aren't slurred) Nurses and doctors at Memorial couldn't tell us about what hospital she was going to or what else was going on. Finally around 11 p.m. I get a call from my Dad telling me that she would be going to Santa Clara. The ER staff couldn't verify that (Kaiser & Sutter don't get along) but at Midnight we were sent by helicopter (after a few scary minutes I was allowed to fly) to Santa Clara Kaiser Hospital. It was the most amazing flight over the valley, over the mountians, to San Jose airport. It took maybe 25 minutes. I found out from the Helicopter nurse that Brenna's number was over 400 and that her number at 12:15 a.m. was 80. I thought that was good at the time. He explained that they'd prefer her BG to drop slowly so that she doesn't have a reaction. I have never (and will never) have such a short trip to San Jose ever again (I hope). Usually traffic is so bad that it takes 2 or more hours to get there from here. A short ambulance trip and we were in Santa Clara.

They immediately hooked Brenna up to 2 more IV's and put some other "stickers" on her chest and stomach. They took out the old I.V. and ripped off the tape. (It took us 6 months to get her to be O.K. with "stickers" again). I stroked her feet while these people decended on my baby like a pack of vultures. Later, they become friends, but at that point they were just taking care of business. I told her it would be O.K. everything would be just fine while she screamed. I don't remember what all was going on but it was over and she was asleep. At 3 a.m. I started on some paperwork and the night nurse told me some stuff. I told him I hadn't eaten since breakfast - I had no cash only my atm. I wandered around the hospital until I found the atm got to the snack area - no change machine. Back up to Brenna's floor and a kind nurse finds change for me. I go all the way back to the basement to the snack machines get a sandwich and eat only half. By 4 a.m. I curled up on a matress near Brenna and fell asleep. 7 a.m. they are poking and prodding my baby and I wake up to her cries. That first day was a blur. Little food and little sleep. There were a ton of people coming in and out of her room telling me everything would be OK and she'd be on a pump in no time (I had NO visual picture - the only pump I knew about was my BreastPump which I needed about that time- Brenna was still nursing occasionally). I watched videos and took notes and the day nurse must have thought I was going to be noncompliant because I refused to take her number. I don't think that I even left the room to go to the bathroom all day. Mom finally got to the hospital late in the day. I had just been talking to some lady, an administrator I think, who was telling me her husband's D-story. She was the only person who asked me how I was feeling. I told her the whole story (I'm sure it wasn't very coherent at that point) and she took my Mom aside and told her to get me out of the hospital and let me sleep. Mom took me to a hotel and went back to the hospital to stay with Brenna while I slept. I called Al & spoke to him for a bit and then crashed into sleep from about 5 - 8 pm. I called Mom to come and get me and I spent more time with Brenna. She was watching the Wiggles on her TV. She fell asleep and I went to sleep at midnight. I woke to somebody poking Brenna again. I was amazed that she didn't wake when they took her number. I asked the nurses to wake me before they do something to her so that I knew what was going on.

Over the next 3 days in the Pediatric ICU I learned a lot about diabetes and how to care for Brenna. I wanted Al to come and visit and learn but I knew he wasn't in a state to drive and it would be unfair to have him drive the boys here for and back (4 hours round trip) for a short visit so I called him to give him updates. DKA was scary but now past and they needed the room for somebody else so we were moved to a pediatric room that we shared with 2 other children and their parents. One of them left before the end of the day but overnight we shared the room. That first day in the Pediatrics wing I barely saw a nurse and I took care of her diabetes the whole day, carb counting, mixing NPH & Novolog, Lantus in the morning, everything. The nurse was trying to get us discharged that day but the doctor suggested one more night, just to be sure. I had to prove I knew what I was doing to two more nurses, on seperate occasions the next day and, finally at 2 on Tuesday, Brenna was discharged and Mom drove us home.

We've come a long way. One year and one day later.

Here's where it used to be!

Here's where it used to be!
Originally uploaded by amberthyme.

Rowan lost a tooth. It seemed like it was a very short time between loose tooth and an empty space..
He's growing up so fast! He's such a sweetie. At work we do our monthly "Books and Brags" meeting where all of the noteworthy comments (good or bad) are read aloud for the whole department to hear. During July's Books and Brags meeting there was a comment for me. Someone had written down "This treasure chest is as beautiful as my Mommy!" Rowan age 5. I'll have to add a picture of the treasure chest later. Such a love bug.

They're listening

You know kids are listening to every word you say. Usually this discovery is made in the grocery store line at top volume. A small sweet “Shit” rings clearly through the store as you look around and all other parents are giving you the stinky eye. Or a child takes the Lord’s name in vain with a loud “God damn!” in front of the most religious person you know. But in those quiet moments just before sleep or when you’re trying to bring comfort to a child in pain you question that knowledge. Is he listening? Can she hear me?


For each and every blood draw, IV, or vaccination I hold my children tight so they can’t move. When I was 4, I got a shot in the leg and was told if I moved during this vaccination the needle would break off in my leg and they would need pliers to pull it out. This is my fallable 4 year old memory talking here but it has been a key memory that contributed to my needle phobia. I don’t know if I hold them too tight but I know my kids can’t move. I try and distract them or give some small comfort by kissing their hair an saying “I love you sweetie, everything will be alright. Mommy’s here.” Like they could forget that Mommy was squishing the movement out of them while someone else slides steel into delicate parts of their flesh.

Brenna, obviously, has been the recipient of this loving torture quite a lot in the last 9 months. I never knew whether she could hear me over her screams and I figured I was the only one gaining some small shred of comfort from my words.

One Sunday afternoon Brenna started a game. She would poke my arm with her finger and tell me to cry. I humored her. “Waah, waah.” We played this game a couple of times. I was only half paying attention when I realized that she was whispering something into my armpit while I was hamming up the cries. I bent down and put my ear next to her lips. She patted my arms and hair and whispered. “It’s O.K. my baby, Mommy’s here. Mommy’s here. It’s going to be O.K.” When she realized I was listening she patted my arm.“Here’s your sticker,” pat on my chest, “here’s your band-aid,” pat on my arm. “Good girl, my baby!” She patted my hand then went to find another game to play.

Guest Blogging

One of the wackiest people I know has gone on vacation and left me the password to her blog. Well, me and three other people. If you're curious. Take a look at Drunk Drama Queen to see what we're doing while she's away.

On the Horns of a Dilema

101_4538
Originally uploaded by amberthyme.

I recently contacted Stanford University to become a participant in the TrialNet Natural History Study. In this study, if you have a family member with type 1 diabetes they draw some blood and test to see if you have any markers that indicate that you might develop type 1 diabetes. This study is open to parents, siblings, cousins, and more. If you're interested just follow the link.

This study to me is a no-brainer. Give some blood. Give more blood if markers are found. Hey if Brenna can get poked EVERY DAY I can do it when needed to allow scientists to learn more about diabetes.
So where does the dilema come in? If I want to have Therin participate he has to sign an assent form. He is 7 years old and must legally agree to a blood draw and even if he signs the paper he can back out at any time. I can't force his participation in a blood draw when it is medically necessary. If by some bizarre chance he developed diabetes I'd have to hold him down for his A1c anyway (they still do blood draws rather than finger pokes at my daughter's doctor office). But even THAT isn't what's bugging me. Therin gets to choose whether he helps but if I were to enroll Rowan, because he's 5, all I have to do is sign the consent form and force him to do it. How fair is that? Not at all. I think he's more likely to follow through than Therin but should I ask it of him? Should I demand it of both?

But, that is only the first horn. The second horn is should I enroll Brenna. She fits the criteria to join some studies regarding the testing of CGMS (continuous glucose monitoring system). One of the studies seems fairly non-invasive. Keep the CGMS device attached and download her pump information, CGMS information, and send in her daily food log (that is something we've been doing already). But to join this study she'd either have to have a CGMS device already OR I could enroll her in a study that would give her one as part of that study. The other study basically would hook her up to an IV and induce hypoglycemia. It is in rigidly controlled circumstances and once she got to 60 they would give her a glucose tab or hummingbird juice in her IV (my wording not theirs). She'd end up having to go do this twice, maybe more, if I'm reading this right. Now, Brenna doesn't always present with "symptoms" when she is going low. Sometimes she's really cranky. Sometimes she asks for peanutbutter or a glucose tab. She really likes glucose tabs and will ask for them at any given time. I'd say that she's low about half the time she asks though. Do I just miss the signs when I'm busy? I think it would be facinating to find out what is going on and see what happens in a controlled enviornment. But . . .experimenting on my baby girl seems so callous. Putting her through that kind of stress on purpose seems mean. But. . . if I can get more information in a controlled enviornment then I will be better able to help her if a severe hypo develops. Maybe? I don't really know about that one. When in a stressful scary situation sometimes information flies right out of the brain. Chances are that she'll have icky stressful diabetes related situations at some point in her life and will have to deal with them. But . . .if we could be a part of the solution . . . part of the group that says that CGMS is not only helpful but a necessity for people with diabetes of all ages especially the youngest when their numbers are all over the place and you can take one look and know if she's going up or coming down. To have access to that device for just a few weeks to keep an eye on trends and figure out what's going on with some of her weird spikes.

So, my plan of action. Have Al read through the Research Consent Form and get his opinion. If he doesn't think it would be torture for Brenna then we inform her Endo & diabetes nurse of our plans and see what they say. Then, if all is well, contact Stanford and see if the studies are still happening and go from there. As for the boys? I thought I'd tell them that my husband and I will participate but we're not sure about our two sons..

I Love My Job!!!

Rita Skeeter, Professor Snape, and Professor Lilly (he wasn't in the books)
Originally uploaded by amberthyme.

Hogwarts @ the library has been so much fun. It is a LOT of hard work. I'm not the brains or the brawn behind this series of programs but I'm tring to give as much help to the ladies that are making this all possible. It's sooooooo cool, you know, in that geeky I'm going to dress up and be a character from my favorite book kinda way. I'm an unpublished Slytherin at the moment. I'll post a picture when I've got one available but I'm looking forward to transforming into Prof. Sprout. Too bad she's not Slytherin too. I've become rather fond of being the cheerful, yet ambitious, one in our house. Hey, like I tell the students being a Slytherin doesn't make you evil, it's how you use your skills that sets you apart. After all you couldn't become President of the United States without being ambitious. O.K. not the best analogy because I'm sure somebody is bound to list off their favorite "evil president" story. Anyway, Slytherin contains one of my favorite names in the universe Sly -Therin. Which was totally unintentional and a connection I didn't make until I looked up the proper spelling of that word about 10 seconds ago.

1 More Children's Dept. Event to go. Friday at 9 p.m. will conclude our festivities. There are a few of us that are going to stay dressed up and hit a nearby bookstore to pick up a brand new copy of "Harry Potter and the Deathly Hallows"

Then "Rita" and I will freak out about the Teen Harry Potter Event coming up on Monday.

Transitions

Nope, not the snazzy lenses you see on T.V. that darken in the sunlight. I'm talking about the messy phases of life that everybody experiences.

School starts August 27. Already I have pulled out Therin's yearbook and pointed out his new teacher. My Mom has been awesome getting him to read out loud to her during the day and doing math from last years workbook. I'll need to start tighening up the bedtime and morning routines . . . after all the Harry Potter Events at the library are over. Next week. I hate that I have to be strict year-round about "no T.V. before breakfast". It would be nice to sleep in and let Therin watch Saturday Morning cartoons and get him to come to breakfast without a fuss (o.k. meltdown). That morning transition would be impossible without that rule. The thing bugging me is that I completely forgot about Therin's social story. There was supposed to be a transitional social story that they were supposed to be using at school and then it was supposed to come home with Therin after school was out. Things were so crazy the last week of school that I completely forgot about it. Arrgh. It bugs when I do that. I should have asked for a copy at the last IEP but I didn't. I have been doing some research and I think I have found a wonderful person who will help be an advocate when the school year starts. That is a relief but I do need to talk to her more first. Therin has a hard time with all transitions - positive ones as well as the negative and neutral. Inside to outside activities especially frustrate him. Every day brings a new challenge and this new school year so much more will be expected of him. I hope I can help prepare him enough for the coming months.

Certified or certifiable?

card 1
Originally uploaded by amberthyme.

I was cleaning out one of my catch-all bowls on my dresser and look what I found! If you haven't read the story already check out my version or Anne's version It .

Flirt

This walrus followed Brenna and clapped his flippers.

Butterfly

Casa de Mariposa

MacBox Pro

MacBox Pro
Originally uploaded by amberthyme.

This is the closest I'm getting to my computer until sometime late next week.

Brenna inserted a tomato into the disk drive. Don't worry, it's not a real tomato just a plastic one. Hopefully, it hasn't done any damage to the drive.

Blogging on Al's PC just isn't the same.

Where your friends are

I knew they were around here somewhere. I'm starting to talk to friends again. It's very nice. I love going to Starbucks in the Market and seeing Sam. I need to go and visit her when we're both not working. Friday night I got driven home by Zaid. I went to Chilli's with the girls. Shannen, Donna, Melissa, and I hung out, caught up, and had fun. Zaid took Al back to Chili's (there's one out by the mall sorta where the movie theater where we saw the 15th anniversary edition of Rocky Horror used to be). They'll be picking up the car that I couldn't drive home - 2 margaritas and I was not fit to drive. Very nice end to a barfy day (no, literally, Rowan was barfing Thursday night and a little on Friday too. Therin took a nap so I figure he's fighting off this bug too.)

Al & I were supposed to go our and celebrate our anniversary Friday night but with Rowan sick I didn't want to take the kids over to my Mom & Dad's house. Mom agreed. I called and talked to Jenny on the phone tonight. Gary writes my MySpace (I never look at my myspace) and opened up a can of worms that got buried months ago. Whatever, at least he's writing. I went out to Chevy's with Jim just after my birthday for the first time in ages. This month I've made a big effort to reach out to my friends. It has been very hard. Diabetes is routine, I don't have to think about it a whole lot, just do it, unless Brenna's numbers are all wonky and I have to back up and figure it out all over again.

It's hard to do. Reach out. I don't know why. While I'm feeling better I'm snatching the opportunity before it slips away again. It's a lot easier to lurk, read posts, and when I feel up to it after I've thought about it and come up with something to say then type it than deal with ambiguous conversations that could go anywhere, I guess. Kinda makes me feel a little cowerdly.

After I knew my blog was being read, it became harder to post. I started it for me as a place to vent -- and then I had readers. I thought I had to come up with something more interesting than my whining. I have a lot of draft posts that have never made it live because I felt they were too whiny or weird to post. I love getting comments. It is so much fun to have a dialogue with other people who are reading about me and my family because they care.
I try and strike a balance with positive and negative. I still lurk a lot. Thanks for letting me lurk. Without my online friends I don't know if i would have gotten to this point again.

So, I want to thank my friends. My "here and now" friends for being patient with my absence and allowing me to pick up where I left off. My "virtual" friends for letting me lurk and gain my confidence back. Mom, my friend who listens to me no matter what.

And Al, my partner, my best friend, my husband. The man who loves me inspite of all my insanities. He thinks I'm perfect even when I know damn well I am far from it. He takes my shit and doesn't stoop to throwing it back at me -- even when I deserve it. He kicks me out of the house when I won't take a break on my own and makes sure friends are there with me. And he makes it possible, on a day like today, for me to blog.

Thank you, everybody.

New Post?

I had all these cool ideas for new posts. I sat down at the computer, like, 2 seconds later just to put the ideas down in an "idea" post and just save it to drafts. Now, of course, they're all gone. Where's the rum? I know I didn't get any.

Sigh.

3

3
Originally uploaded by amberthyme.

Every day you get bigger. You already have strong opinions of your own. Smiles like sunshine make my day bright. I love how you love snails and pounce on your brothers (even if I have to hold back my snickers & give you a time out). Gotta, go, go, go you are always on the move -- you'd rather be outside than sitting and watching T.V. You are a beautiful little girl and I look forward to watching you grow into the wonderful young woman you'll become.
I love you Buttercup.
Happy birthday.

Adventures in Potty Training

****WARNING*****
Too much information - unless you've been privy to the prossess of potty "training" -- or maybe even if you have.
I'm just writing this for posterity. And so I can google this when she's 16.


Nakie girl comes tearing into the living room.

"Mommy, mommy! I pooped in the potty! Come see."

She grabs my hand and we both run down the hall to the bathroom.
Sometimes poop means pee - but there it was just like she said.

"Mommy, one is floating one is sinking."

"Wow! That's amazing"

We stand there admiring her work of art and I notice that the view is unobstructed.

"Hey, I have a great idea! Lets get you some toilet paper"

The previous roll had gone swimming during the last potty break.

When I had finished wiping her bottom and tossed the paper in I inadvertantly reached out to complete the next step.

***flush****

"Mommy, I'm so mad at you!"

She stomps out hands on hips.

Ah, I'm so used to walking into bathrooms and having to flush all manner of things (both here and at work) I do it automatically. That she might want to admire it a little longer and flush it herself didn't even cross my mind. I've been through this twice you'd think I'd remember that one.

Those were the good old days . . .

I've been reading DDQ & QoD's posts and reminising. DDQ and I go waaaaaaaayyyyyyyy back. I love all of her stories especially of her bizarre relatives. I want to put one of our stories out on the web but I can't figure out which one to write about. This isn't as well written as QoD or as funny as DDQ but here goes. . .

I'd love to write about our time in Drama Class down at the JC especially because the title of this post would fit perfectly-- I freaked out our teacher by crossdressing and singing "Wierd Al" Yankovich songs (not during the same performance though). Fun as that was I'll take you on a little ride on back to the 1999 County Fair.

This took place in a little town that's home to Earthworm Jim (no, really the cartoon character hails from this place). Turkey Tech isn't too far away and we'd been on an adventure to secure us some Hewie Lewis and the News tickets. It's the armpit of the Central Valley of California during the hottest part of the summer. August. I am a cool 112 degrees because I'm a week away from having my first born. Anne & I got to the fair a little early so that we could get some good seats -- even though we bought tickets it's an elbow your way to the best seat kind of venue. Well, when we got there the monster trucks weren't done kicking up the dirt in the arena area so we thought we'd take a walk around the fair. Anne was afraid I'd go into labor at any minute (frankly I was a little nervous too - at that point in my life all I'd had to compare labor to was cramps and those puppies always sneak up on me).

After a while we saw a vision of air conditioned lovelieness and wrote our names down on the ledger.

It was . . .

Budwiser Brewmaster Bus

Ahhhhh, heaven! Slightly padded foldie chairs and a 10 degree difference from the external temperature. Woo hoo! Now was only 102 degrees!

We sat down and Anne made herself comfortable while I did my best to NOT do my impression of a beached whale. People filed in around us and kept turning to stare. I really was HUGE. Fortunately it was before the digital age of cameras. Anne, darlin', you're going to have to write your version of this story 'cause my memory is a little fuzzy. Did you actually say "What! Haven't you ever seen a pregnant woman drink a beer?" I know we kept laughing and making jokes just to watch these people try and put their eyes back in their head.

O.K. you know when you "taste test" something they usually only give you such a tiny amount that you really do need to go back when that Costco lady isn't looking to grab 3 more just so you know what it really tastes like? That's what I figured was going to happen in the Beer Bus. They brought us samples of 3 beers in dixie cups smaller than the kind I had to pee in every week. I'm sure everyone was thinking pints when they signed up but what they got were thimbles.

The Budwiser Guy did a lot of talking about how the beer was brewed and how it was sacreligious to keep your beer in the garage, unless you have a fridge in there, of course. High temperatures kill the taste, you know. We got 3 more teensie Tinkerbell draughts sipped them and listened to more talking. Not even enough alcohol in all six cups combined to kill a braincell. After 30 or 45 minutes we each got a little card proclaiming us Brewmasters. So now I can say "I was a pregnant Brewmaster." The only thing left to do was see the guy who made it "Hip to Be Square". I'm such a rebel.

Skoolz Out!

Well, mostly anyway. Therin's last day of school was yesterday and Rowan's last day is the 18th (officially). Rowan graduates preschool on June 11th in the evening. They have little cap & gown outfits for the kids. I think he'll have a good time "walking the stage". They're getting so big so fast! Can you believe it?

An ear infection

Barely. She didn't throw ketones with the last ear infection. Why now? Anyhow, back to the beginning of the story. I got home from work and Mom told us that Brenna felt hot during her nap. Her underarm temperature was 102 farenheit. So, she gave Bren some Tylenol. I took her numbers;

BG 296 Blood Ketones 1.4

O.K. so ketones show up faster in the blood than urine and nobody knew what to do with blood ketone info last time.
"Brenna, lets go sit on the potty" woo hoo! she actually peed on the stick!
Within seconds it turns a dark burgandy. Large ketones, second darkest color on the bottle. But her bg number isn't too terribly bad (for her) and the blood ketone number is actually lower than the urine ketones suggest but Al is nervous. So while I wrangle the girl back into her clothes. . .

Al called nurse J and described what was going on. She told us that we should take her to urgent care because her fever had been going on for 3 days. She said that even though she was acting just fine that we should take her to urgent care because things can turn scary quickly for little ones. So I called the appointment line to tell them that we were going to urgent care. They told us to wait by the phone and they'd call us back. Brenna & I headed out with a cell phone and Al waited at home for the call. We were close to the Urgent Care center when he called to say that we needed to head to Emanual Medical Center emergency or north to Manteca's emergency room (side note: I live less than 2 minutes WALKING distance from a hospital but Kaiser doesn't deal with either of the hospitals that are in my town -- grr). We get to the emergency room and I get her checked in then she's the next one called. A nurse takes her vitals, weight, height, listens to her heart, etc. hands us a paper bag with a pee cup inside. We head to the potty to get a sample. She does it again! It is soo rare for this girl to pee on command. We took it back to the nurse and waited. And waited. And waited. I took her numbers again.

BG 186, Blood ketones 0.1

Brenna slides out of my lap and is dancing around and playing hopscotch across the tiles while other folks are waiting to be seen. Can't we go home now? Her numbers are good. As long as we're here we might as well find out about her mystery fever.

A vampire (professional blood taker, I can't spell phle. . . and I don't want to look it up on google -- I get sidetracked) comes out. I can tell he's a vampire not because of his pasty white complexion and cape but because he carries a tackle box full of tubes and sharp pointy things in sterile plastic packages. He calls about 5 names and as we file in we're set up in beds with curtains mere feet apart. Brenna is in the bed closest to the door. Lucky her, first blood. There isn't anothe nurse available to help hold Brenna's arm so the blood tech directs me to lay on the bed with her and wrap my legs around hers. I will need to hold her arm still while this is done. So I wrap my self around her as tightly - yet gently- as I possibly can. I tuck her head under my chin, her 'free' arm under my body and grab hold of her hand and arm. I'm told to keep her arm from twisting. She's very good at twisting. I worry somewhere in the back of my mind about bruises and file it away for later. I ask about a butterfly needle and he says that he's using a pediatric needle but it's going to take a while. I watch as he inserts the needle into her arm and tighten my grip as she begins to thrash and scream. It feels like child abuse. I blink slowly twice to give myself a break from watching the needle then go back to my vigil. If she can feel it -- I can watch it. Have I told you how much watching fake needles on TV make me want to puke? I don't watch my own arm get poked. After a long moment the vials are filled and before I know it he has tape on her arm. I hate tape. They don't use that stretchy stuff that doesn't stick to your skin anymore because it has latex in it. That sucks. The tape is like supergluing a cottonball to her arm. And we're walking to the waiting room again as I contemplate tomorrow when I try and remove that thing. I know what the blood and urine is going to show them. I just took it myself without pinning her to a table. I just hope it shows what's been cranking her fever up.

I watch my beautiful, happy girl dance some more. I count while she hops. We sing songs and I teach her the "I'm a little teapot" song again. Then I show her how to be a sugarbowl. If I were being politically correct I should have told her we were Splenda bowls - but I'm not.

A few more hours pass and a group of us are called into the same bed area as before only Brenna gets the one furthest from the door. First one seen by the doctor, lucky us. A very tired very patient (a doctor that was trying with all his might not to be irritated) gives me the lowdown. No ketones, 186 (I guess her meter is working well), temp is normal (If I could read minds I bet he was thinking "so why the hell are you here!!!!")
"Do you know what this means"
"Yes, everything is good. We get to go home. But what's been causing her fever."
"Her temp is normal"
"That's because I gave her Tylenol"
"Her temp is normal, 97.9"
"But she had a 102 fever underarm temp and we gave her Tylenol. She's had a fever for 3 days."
"A fever is the body's natural defense against infection"
"So it's an infection? What kind? What did her blood show?"
"It's not bacterial, it must be viral."
"Her blood showed nothing?"
"Well, let me check her ears."
Brenna screams . . .he's 2 feet away.
"Oh, she has an ear infection."
He checks the other side "this one's not as bad as the other. Does she respond well to amoxicillin?"
"We aggressively treated the last one so I guess she does well enough"
"O.K. I'll write you a prescription and fill out your discharge papers."

Brenna was in her own bed by 1:30 a.m. I was asleep by 1:31 a.m. if not sooner.

Mystery fever solved. . . or was it?
Stay tuned for the next Adventure of Captain Ketone and the Mystery Fever part 3.

Guess where we are. . .

Hospital waiting room

Pacific Ocean

The Adventures of Captain Ketone IV

It was just before dawn on Tuesday morning. Brenna started fussing in her room and then climbed into bed with me. As we cuddled up I felt her little body was on fire.

I held her long enough for her to go back to sleep so I could sneak out of bed to hunt down the thermometer. I couldn't find the ear beeper thermometer so I put the digital one under her arm and waited for the beep.

101.5

She felt hotter than that to me and I remember that under the arm isn't the best or most accurate spot but I wasn't about to lube it up and give her a rude awakening. Next stop, blood glucose test.

1-2-3 poke. 256.

Not bad, really. The range her Endo suggests is between 100 - 250. I like to see her in the 100's (who doesn't like to see their numbers in the 100's) and I've set her target in her pump at 165 so it's not really that far out of her range.

Drip, drip.

I was getting blood all over. So I figure as long as her finger is still bleeding I might as well put it to good use. Go go gadget - ketone meter! Pop in a purple strip and hoover up all that blood and

::beep:: 1.7

What the ?!?

I shuffle through the stack of info I brought home last month from the CWD confrence and find the colorful bookmark that explains the numbers. Until that morning, the reading on the PrecisionXtra has been 0.3.

Red. If your blood ketones are 1.6 or above get immediate medical care. Yikes! Deep breath. Another one. Dial Nurse J. Get an answering machine and leave a message (neglecting in my state of almost panic to leave my phone number). Sift through the cabinet for Tylenol - nada. Call Nurse J's office & leave a more detailed message. Hang up. Call the appointment call center and make a 9:30 a.m. appointment. Run to grocery store for Tylenol. Send Therin off to school with Al. Call work & leave message.

Test again. Blood Glucose: 190. Blood Ketones; 2.1.

Load Brenna, barely awake now, and everything we might need into the van and start driving. Use handsfree Uhura earpiece to call everybody again (why did I forget to call the Endo's pager?) Arrive at the clinic early. Thank goodness we're seeing her Pediatritian. Dr. E. gives her the once over, no ear infection, throat's fine, fever's down by now, she's just got kid crud. Some virus that her body is fighting off nothing particular. Clear fluids & fever reducer and rest. But, diabetes changes everything. Those ketones are worrysome. She's probably a little dehydrated from the fever. But to be safe . . . Dr. E suggests doing some blood work to make sure everything is O.K. Since the lab work is going to take a couple of hours it'll be better to start her on an IV now than find out 2 hours from now we should have started her on it right away. Nice that they were able to draw blood using the IV thingie.

Nobody has any experience with blood ketones so we try and get her to pee. No luck. We snuggled up toghether and watched Land Before Time on the tiny hospital bed-- the same one where we waited anxiously for news of a hospital bed when she was diagnosed. I convienently made my official "I won't be in today" call to work when Little Foot's mommy dies so I don't have to watch it. Call the babysitter, call Al, put the phone away. I want to call my Mommy but she's having fun with Rowan so I hug my girl close and wait. I do BG testing about every hour and watch the normal pattern. 100's, bolus, bagle, 301, bolus, 100's - still working on that postprandial spike.

The IV stand thing begins to beep and the nurse unhooks the tube from the IV but she leaves in the IV . . . just in case. I take Brenna to the potty again and she has a meltdown. Poor baby. I can't really blame her.

Before we can go home we need a urine sample.

Two more tantrum trips and I try a different tack. Finally, we have a cup full. When we get back the nurse tells Brenna that she did such a good job! Woo hoo! High five. Then she leaves to do the urine ketone test. After she leaves, Brenna turns to me and says, "Mommy, she was so excited."

"Yep, baby, you did such a good job! Can I have your finger?"

The blood results are back and things look good. Her bicarbonate level is 22. She was a little dehydrated so keep pushing clear, non-sugary fluids as long as she's eating solids. If no solids give her drinks with carbs -- water them down if you can. And the Endo says start her on the 6 day plan. Huh? What's that? Test her every two hours for the next 6 days. Sigh. Might as well start now.

Poke - 84

Well, it is almost lunchtime.

So here I am. I'm taking the first shift and Al's taking the second. The last two nights I was so tired I was afraid I'd fall asleep so I did housework. Not that it looks like I've done anything. . .

Tonight though, I finished my audiobook while holding my sleeping beauty. When she was safely tucked away in bed I caught up on all the blogs I've been composing in my head for the last couple of weeks.

Time to go wake up Al.

San Diego, revisited

My cute backpack turned 5! We had his birthday party at FunWorks the day before Mother's Day. We played and pizza with just a few of his friends. FunWorks is loud and crazy, but we picked a good time, 10 a.m., so there wasn't a huge crowd. The cousins weren't able to join us but Rowan's best friend from preschool was able to come . . . her birthday party was at the Bowling alley down the street at 1 p.m. so it worked out to be a party kind of day for the birthday boy. Rowan had a blast!

My parents took a trip with Therin to Disneyland during the summer before he started Kindergarten and they took a trip with Rowan earlier this week. They left early Sunday morning, just the three of them and arrived in Legoland at 1:15 ish. So after their 7 hour car trip they played there for about 4 hours and went to their hotel to crash. They went to Legoland again on Monday, SanDiego Wild Animal Park on Tuesday, and SeaWorld on Wednesday. They got back into town about noon today. I missed Rowan but I'm so glad that my Mom & Dad got to spend time with him. I'm glad that Rowan got to talk without having to compete with his siblings for attention. As soon as I get pictures, I'm posting them! He was so excited and he called us every night. They're making a scrapbook of their adventure.

I sent Rowan with his birthday money. I was talking with my Mom on the phone and he walked up to her and handed her his money. "I'm buying the phone so I can talk to my Mommy." I laughed so hard. He bought me zebra socks and he tried so hard to keep it a secret. He told me on the phone each time we spoke that he had a "secret that he wasn't going to tell me about the zebra socks." He whispered to me often and sent me lots of phone kisses. What I noticed most over the phone was how very little he sounds. I know that sounds wierd but he's growing up so fast and I ask him to take responsibility for so many things and expect so much that I forget that he's still just a very little boy. Still my baby. I'm not saying that I want him to grow up fast, but if I don't encourage him to try to do things that might be difficult for him then he won't know a sense of accomplishment. I forced him to try and buckle his own seatbelt for months before he could actually do it. "You try once and then I'll help." Twice, three times, five times, then one day; "Mommy, I did it! I buckled myself!" Somedays he still has a hard time buckling but if he tries first I help him. But that little voice on the phone made me want to just scoop him up and take care of him but I've got to let him go be his own little person. He had a great time doing it this week too! Ah, growing pains. Does that mean I'm growing up a little too?

Sweet Victory!

On May 16th, I stayed home sick. On the 17th at 8 a.m. I had an IEP to go to that I was positive would be no way to reschedule should I need to cancel. Luckily, I was able to drag myself to the meeting - I felt LOTS better than the day before but had no energy for anything.
The Autism specialists from the County have been working with Therin to put in place a self-monitoring system to take the burden off of the teacher and give him the tools to keep himself on task. They reported that while Therin is a very smart boy and could be doing the school work he is unable to self monitor with the amount of time they are allowed to spend with him per week to teach him the system. Since they've seen him 3 or more days a week for a couple of hours each time during many times of the day (recess, math, reading, direct instruction, morning, afternoon, etc.) They collected A LOT of data. Therin is very smart but he doesn't do his work in the large classroom setting unless he is being prompted. The teacher is doing her absolute best to promt him and be able to teach the rest of her class. And their conclusion is that to properly teach Therin the self monitoring concepts and keep him on task for classroom learning -- he needs an aide. Then she point blank asked the District Guy "Who are you going to get to do this? This is beyond the scope of the services we provide. We will be unable to come out and be there as often as Therin needs to learn the system." In a way, it was probably good that I was sick so that I didn't stand up an whoop! The tension was so thick you could scoop it with a spork. The District Guy grudgingly agreed to an aide for Therin at 3 hours a day for a 6 week trial period. Then he signed the IEP looked at me, and tersley told me that he felt that he felt that all of the FAPE protocols had been met . . blah, blah. . . basically it seemed like a sour grapes kind of thing or a CYA kind of statement. Gee, the Autism Specialist collected data to back up what I had been saying about my son since Kindergarten! I wasn't surprised - it just ticks me off that it took so much red tape to get what my son needs. But we got it!

But it makes me wonder. . . did I get it because of all the hard work from the team of wonderful people that I'm working with? Or did it happen because Therin's teacher let slip (on purpose with my blessing) that I was looking into getting an advocate?
So when I sip from the victory cup -- there is a bit of an aftertaste -- but not enough to stop enjoying the taste.

Life as We Knew It

I've been listening to audiobooks. My most recent book is called Life as We Knew It by Susan Beth Pfeffer. Follow the link for the publishers info page, I think it has just enough information there were some good reviews but they gave away too much plot. It's a very interesting book. I'd put it in the Apocalyptic science fiction genre. We have it in the Children's Department but it woud take a VERY mature 6/7/8th grader to handle this book. I could have eaten this book up after reading Watership Down in the 6th grade if it were around. It might even appeal to the Lurliene McDaniels fans - a little bit anyway. It's a "what if" book. What if the moon was hit by a huge asteriod and knocked it closer to the Earth. It starts in mid May and I don't think it'll give anything away that California gets dunked by Tsunami's (LA always ends up "falling into the Pacific" in some way or other). What's wierd is that I started listening to the story about the same date that the moon is knocked out of orbit in the book and they mentioned SanDiego being hit - Rowan was in SanDiego at the time so I felt a momentary panic thinking about him. Then I walked into Walgreens to pick up some diabetes suppilies and had to stand in line right in front of a tabloid that was talking about a little girl that had been kidnapped right out of her parents hotel room while they were on vacation. Rowan was on vacation with my parents. They just got back today. It makes me feel so much better to have him home safe and sound. I love Sci-fi and I've been fiddling around with a plague story since 1996. As much as I like the story (Ms. Pfeffer's, I don't have a completed draft of mine) -- don't read it while you're depressed (although if you did have a draft of mine it would still be good advice). Oh, "Catherine, Called Birdie" fans might enjoy this book as well. It's similar in that it's written as diary entries. Something else reminds me of Catherine too but I just can't put my finger on it. Two plucky young ladies handling circumstances beyond their control the best they know how? Perhaps. If you happen to read it let me know what you think. Oh, if you read the autism fiction books tell me what you though as well.

My Backpack

Mornings are always hurried trying to get everyone ready and out the door but since Therin has been keeping track of the days he tells me "today is Friday, no school tomorrow" and all the little things his siblings do just don't seem to bother him. Brenna is alway a big helper especially after Therin puts out our bowls or plates on the table - she loves to rearrange them. Sometimes I think she does it just to bug him. But my favorite morning thing to do is put on my backpack. O.K. so this backpack is a little heavier than other backbacks but he's just so cute! I love that I work right across from Rowan's Preschool. I can park at work and walk across the street with him. Since I usually give him a piggyback ride somebody from my work notices and comments on my "new backpack" and Rowan always giggles and says, "It's just me, Rowan".

It's been really cold at work recently even though outside the temperature is nice. Last Friday, I was sitting outside eating & reading when my Mom drove by me and waved. Must be time to pick up Rowan from preschool. I took longer to find my stopping point than I thought because Mom was already outside with Rowan & Brenna getting them into the van as I wobbled over on pins-and-neeedle feet.
"Are you coming with us?" asked Rowan
"I had lunch early today. I came outside to read so I can warm my bones. Library is so cold."
"Can I go to your work? I need to cool my bones, it was hot in my preschool," replied Rowan.
That would have been fun if he could come inside for a bit but there was stuff to do. So I had them drive me around the block and drop me off.

Bernard's Blog: Decoding the Dexcom data format. An update

Bernard's Blog: Decoding the Dexcom data format. An update

Dexcom Challenge

Don't you hate it when technology doesn't work right? Me too. Bernard's trying to get Dexcom to help him get to his data. What is a Dexcom? It's a continuous glucose monitoring system. It's great to have that data but if you can't get to it to analyze it and figure out what you can do to fix things it really doesn't help much. If enough people link to Bernard and he becomes number one on the list if you google Dexcom, maybe the company will pay attention to his requests for assistance.
Good Luck Bernard!

TGIF

Friday's are great! Hardly anybody at work so fewer distractions and sidetracks. Mornings are slightly less crazy with the kids. And sometimes I get to go home just a little bit early. I had a teen poetry thing last Saturday so I got to have longer lunches this week and I get to leave at 3. Yaay!

Overwhelmed

I don't know why I do this to myself. I let things back up and get out of control and then I scramble to "fix" them. I'd feel so much better if I could just keep on top of things. I start to work on something and then get sidetracked. I wish I were more organized. It's frustrating to watch people who can look at something and just organize it. Too much stuff. Rowan's 5th birthday is in 7 days and I still don't know what to do. What's so hard about writing up a few invitations and deciding on a place and time? Beats the hell out of me I don't know why I'm so bloody incompetent. It'll all turn out fine in the end but a semi-clone would be mighty handy. Or Martha Stewart. Or just her brain. Any brain? If you've got a spare let me know. This is the "easy" thing to organize there are a zillion other things clamoring for my attention and here I sit at 1:00 a.m. blogging instead of doing any of them or sleeping. Sleep would be nice. I fell asleep on the couch and Al sent me to bed and I woke right up. I don't feel like I deserve to do anything fun until my "must do" list is taken care of.

CWD Pumping Confrence

The confrence in SanDiego was great!
On the drive south, we stopped at a "travel mall" with a bunch of gas stations and a bunch of convienence marts next to them all by the same company. Inside of the mart were these toy dogs. Life-like sleeping puppies that breathe. We saw them in the gift store near the hospital lab last time Brenna had her blood drawn. I got two, one for her and one for Rowan. They were her constant companions the WHOLE trip. She wanted them to be with us everywhere.

We got there on Thursday evening and ate a a little Japanese restaraunt that was across the street from the Marriot Hotel. We spent all day Friday at Sea World. We petted Budwiser horses, sea stars, and almost a dolphin. Raw stinky fish were flung to sea lions. We imagined ourselves in the pool with the beluga whales like the freezing family that was out there. Shopped at every gift shop. Walked through a tunnel as sharks swam above. We got back to the hotel room around 6:30p.m. cleaned up and left to go sign in for the confrence.

We met so many people there! It was so cool. Brenna made lots of friends; child, adult, with diabetes, without diabetes. Mom & I got to go to a lot of the breakout sessions. I enjoyed and got a lot of information from every session I went to. Some were more helpful and more applicable to Brenna than others. I really enjoyed learning about the unteatherd regimen and it didn't really apply to Brenna but it could be extremely useful for teens and I will definately pass the info on to Brenna's diabetes educator. I wish I had chosen to go to the how to choose the right infusion set even though I currently like the ones we get.
Brenna was with the daycare ladies. It was so wierd to leave her with no meter and no instructions. They had a meter handy and stuff to treat lows and were all diabetes educators. Everytime I came to get Brenna, she was getting messy, I know she had so much fun I hope the ladies had as much fun as she did. She made some friends her own age as well. It was so cool. Every vendor waved hi and many knew her by name. She talked to everybody! We wore our conference shirts and name badges the whole time and she'd introduce herself by holding up her badge and saying "I'm Brenna, what's your name?" when they'd answer she'd say "that's a great name!". I love her to pieces!!

So much info in so little time! The food was great but it was hard to remember the carbs from the cards beside the food when you're dodging people and tables all the way back to where we were sitting.
Brenna picked a new pink medicalert bracelet, and a new pink pump pouch. I picked a purple pouch with a clear "window" in the front to make nighttime boluses easier to do - no removing & replacing the pump. We got those from Angel Bear Pump Stuff New books came home with us too! I was hoping Diabetes Mall would have merchandise with them - no shipping and you can actually see what's in the book before you buy! So cool!

The things I remember:
*Make sure Brenna's pump settings are correct
*Don't set a bg "range" to shoot for in her pump pick one number to aim for-- if you were shooting an arrow at a target you'd aim for the center dot not the whole target
*Dry breakfast cereal is the fastest carb in the west (or east, for that matter)
*CGMS are the best thing since sliced bread (or carb counting, or the insulin pump, but you get my point --every speaker mentioned it at some point -- some for a good portion of their program)
*Bolus Bren before breakfast or other meals (at least 15 minutes) to "Strike the Spike"
*Choose your words wisely; don't "test" 10 times a day "check" 10 times a day - testing has a pass/fail connotation - checking is more neutral
*Watch your body language too. If the number is high or low, don't freak or give negative body language just use the data to correct and get back on an even keel.
*Free stuff is fun!
*High & low bg's can affect performance & personality dramatically. Don't pay attention to the words coming out of your child's mouth during a low -- treat the low and ignore the mouth. A few of the T1 grownups gave their kids permission to ask them to test their blood at any time to be sure if they have a grouchy parent or one that needs glucose. Kinda cool actually.

On the way home we stopped at Legoland. I thought we'd be there a couple of hours - we were there until a little after 5 p.m. and then had an 8 hour trip to look forward to. I drove through L.A. (the infamous Los Angeles traffic wasn't backed up too much we traveled at 20 m.p.h. Much better than a dead stop.) Mom and I swapped out a couple of times because we were both tired. I think I may have lost my phone at the Iron Skillet restaraunt where we stopped for dinner after we got over the grapevine. It was also in the same "travel mall" area where we found the puppies earlier in the week. Grrr. All my numbers programmed into it and all the pictures in it of my kids lost. And I just figured out how to send the camera pics to flickr. Oh well. We got home at about 1:30 a.m. Brenna was asleep and I joined her shortly afterward. I think I just recovered from last weekend today. I would have liked to have the boys with us but it was really nice to be able to talk to my mom and just hang out just us girls.

Confrence!

Sleepy girl! My camera phone was taking backward pictures for some reason.

Puppies!

Sleepy breathing puppies. Best friends! Brenna loved to show them off to everybody.

Ol'Blue Eyes

An older picture of Rowan that was in my camera phone.

Therin's Award

You can't really see Mrs. L & Therin just after he got his award for compassion.

Snails Galore

Brenna's newest favorite pastime, loving snails all to piceces. Literally. It's yucky to watch and I try to take them away from her. She peels the shell off and holds them and touches them and squishes them and finds them after I hide them for the twelveth time (darn those Easter Egg Hunts!! Actually, I think she may have found more snails than eggs on Easter . . . If they were Pokemon she'd have caught them all)

The IEP of Dr. Visits

Monday, was Brenna's third Endocrinologist visit. I left work shortly after 2 p.m. and met my Mom at the doctor's office. Brenna was asleep so I put her into a pink umbrella stroller slung her diaperbag over my shoulder and headed toward the building. I saw a BlueBelly lizard streak across the parking lot close by and pause for a few moments on the warm sidewalk before dodging into the bushes. Nobody was in line at the check-in desk. I told the lady behind the desk that we were here for her endocrinology appointment. When I got a blank look I clairfed by saying we have a diabetes appointment. While she was punching in Brenna's Kaiser number she started to tell me that the Chronic Diseases Department moved to the new hospital building and that we'd have to go over there. I explained that we come to this building for this kind of visit when Dr. G comes to town. She was surprised that I was right and sent me over to the waiting area. We weren't there for very long when the nurse called us in. It was a little bit before 3 p.m. and Brenna was still asleep. I had to wake her up to weigh and measure her. I was hoping that I'd be able to leave her to her nap for a good portion of the visit. The nurse insisted that they had to do it now. Bren cried briefly and then was her normal happy self.

Brenna colored in her coloring book and I drew pictures and shapes on the paper covering on the examination table (I wonder what the nurses think about our doodles). The knock on the door came after a bit and in came CNE J, Dr.G and Dr. Misdiagnosis. Grrr. Why is he here again? Oh well, I addressed most of my questions & answers to the ladies anyway. We changed her Basal rate. I hope it will bring down all those 300's she's had lately but I was warned that she'll go through a lot more lows. Yikes. I don't look forward to that. I came in armed with a ton of information. I filled out all the forms that they asked me to, made photocopies of her logbook and printed a bunch of reports from the Animas Pump program. We now have a new PC in the house (I'm a diehard Apple fan and taxes went to Al's new computer, yay Al!) so I can actually download the pump information and print all kinds of cool graphs. On particularly active days I need to remember to decrease the basal rate from Midnight to 7 a.m. I could also decrease the insulin ration by 10% for meal boluses. Brenna started talking about going home midway through this long meeting. It'll be even better when we get her a meter cord!

Next, I spoke to the Dietitian who was impressed with the food choices - hey I just put it on the plate she eats what she eats. Her favorite foods - chicken, turkey, string cheese, brocolli, corn, grapes, watermelon, milk, water. I'm enjoying this while it lasts. I know the picky phase is around the corner. The dietitian suggested more protein at breakfast to keep the mid-morning spike at bay. Although really there wasn't a discernable pattern to Brenna's blood glucose readings in her log book which is a halmark of toddler-hood. I asked for suggetions for traveling to SanDiego for the conference (woo hoo! this Thursday!) Always have food & water available, make frequent pit stops, let her run around, and watch out for high readings. Brenna was really ready to go during this talk. She kept sitting in my lap putting her hands on my cheeks and looking in my eyes to tell me stuff. "Mommy, need to hold a puppy. Mommy, time to go home. Mommy, the square is red." and other important things.

Finally, we spoke to the Psychologist. She asked about the pinching issues from the last time we spoke. She is doing much better, Rowan isn't a pincushion any more. I think Brenna is adjusting well and is very happy at the moment. She was very responsive to all the other medical personell during the visit. She was running around in circles, not answering questions, and attempting to escape every two minutes.

The stats:
A1C 8.2 - I was really hoping it'd be better than that but the frequent 300's started a week or so before her visit.
Weight is 90th & height on 50th percentile - Wierd, she doesn't look it to me. She's only gained about 4 lbs since last November and has grown about an inch in the last month.
Thyroid is good.

We were out of there at about 4:15 p.m., got a number, had a snack, and went to go get Therin & Rowan. By the time we got to where we were going it was just about 5 p.m.

Autism Fiction

I was looking up the subject heading Autism - fiction at work the other day. I was very surprised that there were so many titles! Here are the books that I have read from that list:

The Boy Who Ate the Stars
by Kochka
An outgoing young girl, Lucy, moves to a new apartment and decides to meet every person who lives in the building. When she meets Matthew, a fascinating four year old with autism, all of her plans are turned upsidedown. She works hard at undertanding what autism is and what it is like to be autistic. It's a quick and lyrical read an gives a refreshing perspective on autism.

The Curious Incident of the Dog in the Night-time
by Haddon, Mark
Currently a very popular book. I enjoyed it. It's written from the perspective of a boy with Aspergers. A friend of mine wrote a paper about it for a young adult literature class she's taking and felt that the author's voice intruded too much. I can see her point of view but I think that your average person who hasn't encontered or interacted with an autistic perston in a meaningful way wouldn't be able to translate the behaviors and since it's in first person rather than third or omnicient there really is nobody else to explain what is going on inside his head. Ah, if only we could get a peek into the brains of all our kids!

The Art of Keeping Cool
by Janet Taylor Lisle
How I discovered this book:
I went out on maternity leave with Brenna in the beginning of June 2002. It was that same week that a volunteer at Therin's preschool suggested that he had a PDD. I had no Idea what that was so I followed directions and immediately called the school district to get an evaluation and was given a brush off. It took me a week to get somebody somewhere to get an appointment for an evaluation. I did no research during that time because I wanted to wait for a professional opinion before I dove headfirst into the information and possibly misdiagnose my child. I know myself well, but I didn't know how long it would take to get professional opinions. Frustrated with the attempt to get Therin evaluated, I googled PDD and found out about Autism and Aspergers. I figured Aspergers was the way to go so I requested the maximum number of books from the library and when the first 2 showed up in my email I went to get them. While I was in, I stopped by to say hi to my colleagues and SC was on the desk. I told her about the PDD/Autism research and asked for a recommendation. "Something good, but out of my normal reading zone," which is usually Sci-fi/Fantasy. She suggested the Art of Keeping Cool. As I read it I expected to "get away" from my research, but I found myself diagnosing one of the children in the book. It is not linked, catalogued, or reviewed anywhere as having to do with autism, however, I figured that one of the characters acted the way he did because he's on the spectrum, so that's why I include this book in this list.
Summary:
During WWII Robert and his Mom move in with his grandparents when his father is deployed. He and his cousin Elliot befriend a German artist that lives outside of town even though he is reputed to be a spy. Lots of internal family drama make all relationships difficult in this coming of age story.

A Wizard Alone
by Diane Duane
You'll have to take a look at the plot elsewhere. I know I read this book. I just can't remember anything about it. Bizarre. I don't remember Kit & Nita interacting with an 11 year old boy who has autism. I'll have to read it again. If you're waiting impatiently for the next Harry Potter read books 1-5 first, then read this one.

Rules
by Cynthia Lord
Catherine is simultaneously bothered by other peoples reactions to her brother David's behavior and yet she is often embarassed by how he acts in public and in other homes. She doesn't think her parents are preparing him for the real world as she sees it so she is creating a list of rules to help David fit in better. Her emotions become even more complicated when she befriends Jason. He uses a wheel chair to get around and a picture board to communicate and helps Catherine realize that her rules are holding her back.

Andy and his Yellow Frisbee
by Mary Thompson
At recess Andy always spins his yellow frisbee. The new girl in school watches and tries to make a connection to Andy and his older sister.

Test Strips

Toes
Originally uploaded by amberthyme.

I think we used 400 test strips in one month.
It took 3 test strips to get her number in this particular instance.
I'm not sure how that happened. I keep checking the cabinets thinking, "Maybe I missed a spot." I haven't. I know she's had a lot of lows lately and we test a lot when that happens. We've also experienced some meter errors but I 'm not sure that that would be enough to suck up 400 test strips. I just hope we didn't throw a box (or two) away by accident.

O.K. math is not my best subject so I broke out the calculator. It's been exactly 46 days and 400 divided by 46 = 8.69.... I looked back through her logbook and we've been testing Brenna between 6 and 12 times a day. I guess we did use that many strips. Considering that it's about $1 per strip I am VERY thankful for insurance. Brenna's diabetes educator is wonderful. She said that she'd order a batch of 600 for her. That ought to throw the pharmacy for a loop! I just went to link to that story and it wasn't there! I guess I'll have to write it again.

Last time I went to pick up her test strips from the pharmacy they gave me one box of 100. It wasn't my usual pharmacy guy who knows Brenna and has seen me about monthly since last August - he'd know better. This pharmacy is almost directly across the street from the Library where I work & I can usually pop across the street during my 15 minute break to pick up prescriptions. Here's the conversation (at least how I remember it):

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Me: "Excuse me, can you tell me why there is only one box?"

Lady:"Looks like the tag says 100 test strips and that's how many are in the box. It must be how many your doctor ordered for you."

Me:"Humm, that's funny. This is a reorder. I used the lable on the box when I placed the order online and there were 4 boxes in the last prescription."

Lady:"That does sound strange. Let me check with the Pharmacist."

Me: "Thanks"

Lady: "She wants to know if you really need that many test strips."

Me: "Wow, really? Well, my 2 year old daughter has type 1 diabetes and we test her at least 6 to 8 times a day --even more if she has a hypoglycemic episode. If she goes low we test her every 15 minutes until her numbers are back to normal. I'll take the 100 strips but it won't last very long. I've got to get back to work soon, I'm only on a break."

Lady:"Thanks If you can wait a few more minutes we'll have those other boxes ready for you."

Me: "Thank you for your help, but my break is over. I'll be back during my lunch time."

So now the Pharmacist is second guessing the doctor? Or did she just think I was lying? The clerk seemed very friendly but I thought it was bizarre that the pharmacist didn't even come out to speak to me personally. Wierd. It was a very nice day for walking and I actually had an hour lunch that day. They had all 400 strips ready and waiting when I got there. I was glad that I didn't get ticked off especially since it wasn't the clerks fault. Boy, won't they be surprised when they get an order for 600! He he he! If they question me I'll have them call Brenna's diabetes educator.

Computer Problems

Or, more accurately internet conection problems. I called my brother and I didn't even get to try what he suggested and my internet works again! Yay! Lets just hope it keeps going. If not . . . pull out my bag of tricks.

In Grampa's Pond

What you can't see is a little bitty whirlpool in the pond.

Something that's been bugging me

I work at a library. No matter where you work it can be very stressful. It's budget time again and everyone that has to put together a budget (or two, or three) is a little cranky. Actually, yesterday should end that in some circles since it was the day to turn them in to Management. Even though there is stress and crankiness everyone is usually kind in other ways. Everyday someone not the same person everyday but someone will ask how Brenna is doing or how all the kids are doing. Depending on how I feel they may accidentally get too much information about the latest illness going around the house and what it is doing to Brenna's numbers or how crusty Rowan's nose is . . . well, you see what I mean. All of you get that info and more but if you didn't want to know you wouldn't be here right?

Last week Brenna was sick. When I'm worried that it might be something serious I usually clam up and don't talk to anyone at work about it until I know I won't be crying all over the place. Anyhow, I don't remember if I volunteered the information because I got a doctor's appointment for Brenna or whether she actually asked how the kids were doing or because I needed to let her know I'd be leaving early that day to get her to the appointment on time but I told this person that Brenna was up all night coughing. I didn't go into detail telling her how the cough sounded slimy and wet not croupy or dry and that she was coughing so hard that her face would turn red and and she'd inhale like she had been holding her breath for two minutes after her coughing fit was over. I just said "Brenna's sick, she was coughing all night, and I have to leave at 2 to get pick her up in time so I don't disrupt the kids afternoon routine". I don't know if I did anything to provoke this or not but this person responded, "Well, life is hard." with a get used to it kind of tone. Well, no shit. My response to that was "Too bad Brenna has to learn about it so soon". Most of the time I hold it together really well inspite of sleep deprivation and all the other stuff that happens. This episode didn't bother me until later, I was more worried about Brenna than my co-worker's attitude. Now, I can't seem to let it go. So here I am blogging about it. Sometimes I DO give to much info but I usually catch myself before I go to far. Or so I thought. Maybe I've been complaining a lot lately. I know I've been rather gloomy. I even went to a happiness workshop in an effort to feel better. What I didn't tell her is that I have heard of a lot of kids in this area getting pnumonia and I know that our area has a higher number of pnumonia related deaths compared to other places. There was even an article in our local paper today. I was scared she might be really sick, her numbers were in the 400's that day and the 300's the day before. I really try hard to just keep things brief. If you work with me and are lurking I'd appreciate feedback to see if I'm actually talking more about my woes than I think I am. I don't believe I deserved that kind of brush off attitude. If she didn't care she could have just said, "O.K. see you later." I deliberately kept the info to a minimum and still got a negative attitude. Grrr.

It's been a long time

I haven't posted much lately. I haven't really felt like I had anything interesting to say. It's not that there hasn't been anything worth ranting about (cancelled IEP, fluctuating numbers, heavy antibiotics, pinkeye, budget time at work, etc.) I just don't feel like I have anything interesting to say. I feel kind of blah. I have several posts that I've started and saved to drafts -- maybe I'll finish them someday.

I did it!

Brenna put this shirt on all by herself!

And now for something completely different. . .

When I was little I lived in San Diego. I remember that we had passes to the Wild Animal Park and Sea World because we went all the time but I can't remember if we had annual passes to the San Diego Zoo. It was so much fun. Mom, Brenna, and I will be going to the CWD Pumping Confrence in San Diego in April so I decided to take an peek at some of my favorite places online.
One of the cool things I discovered while poking around was the Shamu Cam I am actually watching two killer whales swimming around right now. It is so cool. Mind you, I watched a lot of empty tank time too today before I figured that I could shrink my widows enough to display the Shamu Cam. If you follow the link it takes you to a cool animation that looks very real but to get the Shamu Cam you'll have to follow their link at the bottom of the page. Apparantly San Diego has a lot of streaming video cams all over. It is way cool but seems to be rather big brotherish. There are a couple of Zoo cams so if you like Pandas, Apes, Elephants, or Polar Bears take a look.

Forwarned is not always Forarmed

Dr. M. did the I.Q. test and initial assessment of Therin to see if he would qualify for VMRC to do an official PhD Psychiatrist assessment/diagnosis when he was in Kindergarten. He spent about 1.5 hours with Therin and when he was done Dr. M told me that if the Psychiatrist saw Therin on a good day his autism might go undiagnosed. So 4 months later durning the 2 hour drive to San Jose for the appointment to get an official diagnosis I was trying to analyze all of the triggers that Therin might encounter. We did what we would normally do for any drive with Therin. We made him comfortable, brought toys, games, snacks, and music to keep him occupied. He had both parents on the trip so that if Therin needed a break and we had to take a walk one of us could be talking to Dr. J. We didn't do anything to "aggrivate" or push his buttons so that his autism would be obvious. I wanted a diagnosis but what I wanted more than anything was somebody else to see what I saw. I wanted Dr. M to be wrong. I figured that Therin would get a diagnosis of PDD-NOS or Aspergers and then he'd get help at school. Yet, when we got there Therin was in his element. Three adults paying attention to him. He was extremely compliant and time constraints didn't bug him at all. Therin was on his best behavior and I hadn't seen him act so well, ever! I figured we were going home without a diagnosis and I'd have to find a way to pay for a second opinion. To my surprise Dr. J gave him the diagnosis "High Functioning Autism" He meets 10 of the 12 criteria for an autism diagnosis. Many of the difficulties on the list are very mild. A few are moderate and 1 or 2 cause him great difficulty. Most times he does well handling his minor sensory issues but if it's a bad day you can tell because noise or shoe problems will be triggers for tantrums.

I was warned at the beginning by Dr. M that an Autism Specialist may miss Therin's autism diffuclties why is does it continue to surprise me EVERY IEP that the people observing Therin miss his problems when they don't have a background in autism. The school psycholigist likes to point out to me "that we ALL observed him and we ALL came to the same conclusion. How could ALL of us be wrong." "If he's on task 85% of the time what do you really thing an aide would do to help him?" He's "on task" for the 1/2 hour that they are observing him and when they leave he melts down or becomes defiant. Doesn't that say something? They probably think that Mrs. L is lying. Who knows. Just because his difficulties aren't always apparant doesn't mean that they are addressing the issues he needs help with. Just because (compared to other children on the autism spectrum) his issues are less intense doesn't mean his teacher doesn't need an extra person to help her when his issues do become more intense. There are 2 other children on the autism spectrum in Therin's class. I would be happy with a whole class aide but there isn't a classification in our school district for this kind of thing.

If you haven't figured it out already this IEP was pretty much just to tell me that Therin isn't severe enough to qualify for an individual aide. It only took 2 weeks of observation for them to come to this conclusion. Whatever. I told them what I thought and I wrote on the IEP that I still feel strongly that Therin needs an aide. There is someone who will spend more time in the classroom with him to help get his behavior plan together. We will see how this works. I'm tired. I don't want to fight them anymore. So for right now I'll wait and see and save my energy for future fights.

IEP Today

I caught some kind of icky cold that's been going around and have been out of it since last Monday. Monday and Tuesday I took some sick time and slept but I still felt awful when I went back on Wednesday. I used up most of my sick time when Brenna was diagnosed so I didn't have the hours and I had to get the preparations finished for two work thingies that were going on Saturday. I carried Clorox wipes with me everywhere and wiped down phones, knobs, and computer keyboards after touching them.

I was so stressed out about work last week and so fuzzy that I forgot to go over the IEP stuff. I keep a red (Therin's favorite color) binder with everything related to IEP from the first note I got from the Preschool to pamphlets and articles on autism. I can't even remember why we're having an IEP. Therin's teacher called on Thursday evening but by the time I got home I figured it was too late to call her -- and now I'm remember it's 5 a.m. of IEP day and waaaay to early to call. Oh well, I have time to stop & chat with her when I drop Therin off.

Wish me luck! I'll be perusing the red binder until it's time to wake up the kids . . .

Doing the Shuffle. . .

Nearest Distant Shore posted this meme & I thought it would be fun to participate.
It was a lot of fun. I discovered songs I didn't know I had. I've made a playlist with all of these songs so that I can listen to them & make comments about the songs I haven't commented on.

The Rules:

Put your music player on shuffle.
Press forward for each question.
Use the song title as the answer to the question.


Here are the questions & my songs. . .



What does next year have in store for me?
Cheese - Group X (huh? Have to listen to this -- taken on face value I hope this year has a lot of laughs & cheezy grins?)


What's my love life like?
I'm A Loser Baby so Why Don't You Kill Me - Weezer


What do I say when life gets hard?
If Had a Million Dollars - Barenaked Ladies


What do I think of on waking up?
All the Waiting - Frou Frou


What song will I dance to at my wedding?
Old Apartment - Barenaked ladies (Kinda close Old Time Rock and Roll was one song and we did the Time Warp with our friends)


What do I want as a career?
What do you do with a B.A. in English - Avenue Q (This was PERFECT!!!!! When I was close to getting my BA in English I asked this question many times. The answer: Work at the Library!)


Favorite saying?
Aikendrum - Raffi (Not my favorite Raffi song but it is silly and fun)


Favorite place?
Marijuana in your brain - System of a Down (huh?)


What do I think of my parents?
Mother Earth - Without Temptation (obviously mom so I'll do two here)
Drive My Car - Laurie Berkner (Another Children's Music Artist. A sailing song would be better here but . . . not too bad for random)


What's my pornstar name?
When You're Magic - Anne Hill (Not sure how to translate this one. . . since it's from a children's album)


Where would I go on a first date?
Buddy Holly - Weezer


Drug of choice?
Our World - Maire Brennan (hey this should be swapped with that Marijuana one)

Describe myself
Botony Bay - Denis Gibbons (traditional Austrailian folk tune - it's about getting shipped off to Aussieland as a prisoner. Guess I'm feeling a little trapped right now.)


What is the thing I like doing most?
It's Tricky - Run DMC and the Beasty Boys (?okeydokey. . .)


What is my state of mind like at the moment?
How do you do - Shakira

How will I die?
Feel It Again - Honeymoon Suite