Friday, April 20, 2007

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.

Saturday, April 14, 2007

Confrence!



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

Thursday, April 12, 2007

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)

Wednesday, April 11, 2007

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.

Sunday, April 01, 2007

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.