Saturday, November 05, 2011

Language I hope becomes like Latin..

.. words that are no longer spoken but in very unique circumstances, like Med School or history class..
  • "Do you know the carb count of this?" 
  • "Have you bolused?" 
  • "What is your basal rate?" 
  • "Your last A1C was WHAT??" 
  • Continuous Glucose Monitor 
  • Personal Diabetes Manager 
  • Glucagon
  • OmniPod 
  • Humalog 
  • Ketoacidosis 

Soon... JDRF is working tirelessly to find a cure. I hold out hope that SOON, all the above will be useless vocabulary. I know that I, for one, would be happy to never speak those words again.

Tuesday, October 04, 2011

Happy Diaversary!!

Happy Diaversary to my Marvelous Middle!!! It is hard to believe that two years have gone by. Many times, it seems like it's been forever. All those late nights, all the blood tests, all the worrying, all of the high numbers, the low numbers…

In many ways, it has become second nature to us to live with diabetes. In many other ways, this is still something new, something foreign, something we don't fully understand. It is an old acquantaince, and a new fear. We get it, and yet.. there is still so much we don't get. I was thinking it had been longer since we were diagnosed. I was convinced that we were about to recognize 3 years. I think that is just sometimes how the mind works - things unpleasant seem to take longer, don't they? So, to those newly diagnosed, folks like us who have been dealing with this for 2 years are "old hats" at it all. But that's not really how it goes at all; you get better at the carb counting, and knowing what will trigger highs or lows, but you still live in a constant state of alert... you still get up every night to check blood sugars even though you have alarms and technology.

You will still be befuddled by unexplained highs, and terrified by lows. Yes, I now know that, for the most part, a piece of white bread has 19 grams of carbs, and M's favorite pizza is 38 grams per slice. I know that a Capri Sun at 2am will bring his sugars into a good range within about 30 minutes... I know that a snack with protein will help him stay stable throughout the night. But there is still much I don't know. I don't know why some days we are in a great range, and others seem to be all over the map...why some days he over-responds to insulin, and others make us wonder if the pump has failed.. We don't know the whole story. There are so many things going on in the background that cloud the picture; so much we can't see, we can't know...

But we do know this.. he is here, he is healthy, and contrary to some "medical experts" who don't know their ear from a hole in the ground.. he can eat cake! So we will... Happy Diaversary my amazing young man... many happy, and healthy, returns of the day..

 .. Until there is a cure...

Sunday, October 02, 2011

2 years, and a lifetime ago...

This is a repost from just about 2 years ago, exactly.  Today, the 1st Sunday in October, 2009, our lives changed forever... As we get ready to recognize Middle's 2nd Diaversary, I wanted to revisit the time when our world started spinning out of control.

I've been quiet lately, not for lack of something to say, but for lack of time to get words down.

Middle and I spent 3 days at Scottsdale Healthcare hospital this week. He has been diagnosed with Type 1 Diabetes. Up until last week or so, he was asymptomatic, so we had no idea. Then, everything started to more or less fall apart for him.

It's funny, though, how you respond to what, looking back, are glaring changes in your child. Middle has always been our bright, cheerful boy who has a twinkle in his eye and won't sit still unless he is building something. For the last week or 10 days, the twinkle was gone. But we didn't really see it.

He had also been drinking water like a fish. This was more noticeable to Steve than it was to me, because Middle would hijack Steve's water in the middle of the night, after he'd gotten up to use the bathroom. I never keep water by my bedside, so I didn't notice that it was mysteriously gone by morning.

We had noticed that Middle was losing weight, but again, it didn't alarm us. He had gotten to be a little chunky last year, topping his brother on the scale by about 11 pounds. But then he started slimming down. His shoulders got broader. We thought he was growing and shifting in his shape from a little boy to a young man. Then he got on the scale. 9 pounds in 3 weeks. That scared me.

When he didn't want to go play in the park, that got our attention. Middle is always looking for an excuse to play in the park... always!! He wanted to go to Oldest's baseball game, but just sat with us, his head on either my shoulder or on Steve's. He was no longer talkative.

The thought crossed Steve's mind.. do we take him to the ER? "And tell them what... he's tired??" But clearly something was wrong. Emergency-room wrong?? No.. but maybe MinuteClinic wrong.

We went to CVS on Sunday after Oldest's baseball game. We didn't bring him home until Tuesday afternoon. His blood glucose level was 474. The nurse practitioner looked at me and said "I think you are going to go to the ER now.." and we went. He was a trooper with the IV, and the emergency room, and the poking of his finger 1000 times a day, and the shots and the knowledge that this is for life.

In fact, Middle has handled this whole transition better than I could have imagined. I expect he may have a fit sometime down the road, but for now, as we learn about carb counting and how to successfully draw insulin into a needle withOUT bending the poor needle.. Middle is almost looking at this as a science project. He enjoys seeing his glucose numbers, and figuring out how many units of insulin he gets depending on what he eats. "So, I have to make some changes, but this is so much better than some of the other things that could have been wrong with me."

Amen, my amazing child ... Amen!

Sunday, September 25, 2011

Matthew's Miracles JDRF video



Walk with us, November 5th, 2011
Or donate to help us find a cure..

Walk for the Cure -->   Team name: Matthew's Miracles

Friday, September 16, 2011

The post where I shamelessly ask for donations

The Walk is less than 2 months away.. and I am VERY far from my personal fund raising goal of $1000!  I decided to jump in with both feet this year (Get it.. sneakers... feet... walk??) and try to double what I earned last year.

The Walk is November 5th this year, and hopefully the weather will have realized it is FALL by then, but no matter the heat,  the boys and I, along with any of the folks who support us by joining our team, will be walking.  It's the least I can do to help Matt.. it may be hot, my feet may swell, but that is nothing compared to what he lives with every single day.

So I am asking... for your support.  Either through a donation ( our fundraising page is HERE) or by joining our team (I promise a Nifty Difty Matthew's Miracles for any team member who joins before Halloween). 

If you can't donate right now, and we get it - times are HARD for everyone, please support by sending us a text or a tweet the day of the walk!

Thank you all for your support.. I promise this will be the only Blog-Beg I do this year! 

Monday, September 05, 2011

Agree to disagree?

Anyone who has raised a baby through teething will tell you:  teething will cause a fever and an icky diaper, not all the time, but it certainly happens with regularity.  Most, if not all, pediatricians will say, NOPE - teething doesn't cause all those things.  So, who is right? The professional with the degree, our countless mothers and fathers who share similar experiences?

I ask because I'm in a professional disagreement with our Endo. It has been HOT here, like holy hinges of hell, Dante's Inferno, sort of hot.  Twice last week, Middle started throwing ketones, felt generally miserable but never had crazy high sugar numbers, nor a fever.  And, amazingly enough, with a pump site change and new insulin, VOILA, he was all better in about 2 hours.  (we repeated the cycle 2 times in 4 days).

Nothing else changed, his canula was properly inserted, there were no changes in ratios or anything to warrant this - and given how things improved with FRESH insulin, I chaulked it up to the heat rendering the insulin in his pump inactive.. he was getting insulin per the pump instructions, only the insulin was bad.

Dr. Endo, however, disagreed with the assumptions and thought it was more an absorption issue, or bolus amounts or basal rates.. but NOT cooked insulin.

Nonetheless, we made the executive decision to put as little insulin in the pod as we could get away with so that we were changing it nearly daily until the heat wave was over (still waiting on that, by the way). We also took Dr. Endo's advice to up his basal rates for the majority of the day, but now are battling lows at 3am. (I swear, if it is not one thing, its another...) 

But those of you in the Diabetic Online Community - what do you think? Absorption or heat? While I truly trust and appreciate Dr. Endo's advice and counsel, just like I did with my peditrician on the whole teething issue, I will respectlfully agree to disagree.

Sunday, August 28, 2011

Kickoff for a Cure!

Yesterday, the boys and I ventured into foreign territory - Downtown Phoenix! Oldest gets there more often as he and Steve will go to D-Back games, but the rest of us go only once or twice a year. The boys always comment on just how different it is from Scottsdale; they are so right! We ventured into such a distant land to take part in the Kickoff Rally for the Walk for a Cure, the JDRF fundraiser walk coming up in November.

Lunch was served, and I loved it that the carb count for every part of the meal was accounted for on little table toppers, so the kids could all cover approprately. No one batted an eyelash when I suggested Middle test at the table. The kids compared diagnosis stories (for those who were diagnosed at an age when they would remember) and pumps and meters. It is easy to feel more normal when surrounded by people who do what you do.

Many ideas were shared about ways to gather donations, and there was a feeling of excitement in the room (which, yes, I know, is what a kickoff is supposed to do). Personally, I walked away with 6 new ideas to try this year to help raise money. A cure is getting closer by the day; I follow some manufacturers on Twitter, and can see from their weekly or daily reports that the funding they receive is certainly bringing them closer to a human cure. Many have been able to successfully cure mice already, and just that is HUGE!

And this week has been a very typical example of why this disease needs a cure. I tell people about living with Type-1 Diabetes, and often hear "How do you do it? I could never do that"... well, first of all, yes, you could if it meant the difference between life and death for your child. Trust me, parents can walk over fire if they have to when their child is in danger. Secondly, I think, its just life with a chronic illness. We have good days, and we have bad days.

This week has been rough. We were warned that Puberty, with the Capital P, would wreak havoc on sugar levels. Our Endo alerted us to the fact that the big P is right around the corner, and to buckle our seatbelts, cuz' it's going to be a bumpy ride.. He wasn't kidding! First it was lows we could not shake, so we changed all the pump settings and cut way back in his insulin. Those lows mean alarms going off all night, waking him no fewer than 4 times in the middle of the night to check sugars (Dexie is great, but accurate she is not - more on that later!) and offer sugar when needed.

Then, like day to night, we had highs we could not control, with readings back over 400 and a general unwillingness on his body's part to come DOWN! Always terrified of over-dosing on insulin and seeing a later crash, it was more late nights of watching, waiting, bolusing, waiting some more...

Finally thinking 320 is a perfectly acceptable number to see before you allow your child to go to sleep, finally! Last night it was a little of both - low alarms going off at 3am, so we test, and to find some juice, we reduce his basal rate, and I go back to bed. Oh, and Dexie, his Continuous Glucose Monitor, said he was a 38, which is nearly 911-low, but in reality he was 66, which is still too low, but managable at home. Alarms went off at 4, all was fine; Dexie thought 58 but was 92.

Then at about 5:50, another alarm went off, this time saying he was HIGH, with Dexie thinking 310, when really, he was 205. We test each time, (Middle is really good at basically sleeping through this, which worries me too) set things back on track, and I try to get back to sleep.

This is my normal. This is why I walk..... Please, consider donating your time by joining my walk team, or by donating to our team with money. We are so close... Team name: Matthew's Miracles

Wednesday, July 27, 2011

A Lesson Plan - To Kill a Mockingbird

I've never posted a lesson plan on my blog before, tho I have talked about lesson ideas and such. I read a great post by Deven Black about the one truly great lesson he had last year, and I found it inspiring! Run very much like an Independent Investigations classroom, he gave his students choices over a project, then got himself OUT OF THE WAY, and let the kids run with it.

The following lesson plan is along the same idea, with some backstory and knowledge building exercises mentioned.  I simply love teaching To Kill a Mockingbird, and have been looking for something I can do as a wrap up that is NOT an essay test.  The following lesson plan is something I created for an online class I am taking, and I really look forward to implementing it next spring.  Comments are welcomed!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

• Title of the Project To Kill a Mockingbird


• Subject/Content Area(s) Language Arts/Social Studies

• Grade Level(s) 8th Grade

• Project Time Line 6-9 weeks

In conjunction with study of the Civil Rights Movement and Black History Month, we will read To Kill a Mockingbird by Harper Lee. At the conclusion of the novel, students will be given a choice of several projects they may choose for their final assessment of their understanding of the novel and the social/political implications of the story.

Options for activities: Students may choose one of the following

1. Write and produce a Podcast for “Stuff You Missed in History” on the happenings of the trial.

2. Create a 3-D map of Maycomb County using specifics from the novel (not from the movie set)

3. Use a genealogy site to develop a family tree of the Finch family, including historic significance of any real life characters mentioned.

4. Write and produce a newscast after the trial ended, including interviews with Atticus and Mr. Ewell.

5. Write and enact on video (A Vlog {Video Blog} is acceptable) a conversation about the trial using as many characters as there are members of the group. Be sure to include: Miss Maudie, Miss Stephanie, Miss Rachel and Aunt Alexandra.

6. Write a collaborative blog as Scout, Jem and Dill over the course of the summer of the trial.

Goals: For students to master a deeper understanding of the Civil Rights Movement and its place in the history of the United States. Students will be able to articulate in their own words how the outcome of the trial in To Kill a Mockingbird could have resulted due to prejudice. They will be able to compare/contrast that to how the legal system is supposed to work (there must be evidence to prove guilt beyond a reasonable doubt)

Objectives:

Students will be able to work in collaborative groups to produce a single project related to one of the various choices.

• Students will be able to speak to the events of the novel and relate those events of a fictional setting to the happenings from real-life Alabama and other Southern cities in the 1950s and 1960s.

• Students will be able to use comprehension strategies to refer back to the novel for further information.

Standards Addressed: Include a list of national and state standards and benchmarks that the lesson will address. Be sure to include both content and ISTE NET*S technology standards. This project needs to address the ISTE NET*S Standard 2: Communication and Collaboration.

Language Arts Reading Standards

• Strand 1, Concept 6, PO 7. Use reading strategies (e.g., drawing conclusions, determining cause and effect, making inferences, sequencing) to interpret text.

• Strand 2, Concept 2, PO 1. Describe the historical and cultural aspects found in cross-cultural works of literature.

Language Arts Writing Standards

• Concept 4: Editing: PO 1. Identify punctuation, spelling, and grammar and usage errors in the draft.

• PO 2. Use resources (e.g., dictionary, word lists, spelling/grammar checkers) to correct conventions.

• PO 3. Apply proofreading marks to indicate errors in conventions.

• PO 4. Apply appropriate tools or strategies (e.g., peer review, checklists, rubrics) to edit the draft.

Technology Standards: National Educational Technology Standards:

o 2a: interact, collaborate, and publish with peers, experts, or others employing a variety of digital environments and media.

o 3b: locate, organize, analyze, evaluate, synthesize, and ethically use information from a variety of sources and media.

o 5a: advocate and practice safe, legal, and responsible use of information and technology.

o 5b: exhibit a positive attitude toward using technology that supports collaboration, learning, and productivity.

o 5d: exhibit leadership for digital citizenship.

o 6a: understand and use technology systems.
o 6d: transfer current knowledge to learning of new technologies

Prior knowledge of:
Civil Rights Movement, the Abolitionists, Slavery, Segregation, Jim Crow Laws, Brown v Board of Ed all necessary.

 Prior knowledge will be assessed through classroom discussions and by teacher-led activities to introduce or reinforce concepts before the start of the novel. Resources include The Children’s March produced by Teaching Tolerance, copies of speeches from John F. Kennedy and Martin Luther King, Jr. Students will study a timeline of the Civil Rights movement provided by Teaching Tolerance. American History from the Civil War era will be revisited after learning the topic the previous year.

Materials.

 Copies of To Kill a Mockingbird for every student.

 Internet access at school

 Copy of The Children’s March video produced by Teaching Tolerance

 Blogger or other blogging site such as School Fusion

 Video camera or other recording equipment.

Instructional Procedures:

Introduction: how you will introduce the goals and let students know what is expected of them.

Students will be allowed to choose their project as project ideas will be placed on signs in different areas of the classroom. Students will move to the area of the project they are interested in completing. A brief description of expectations will be at each station.

Main activities: what the project focus is and how the teacher will facilitate the learning experience.

Each activity will have a different focus (writing, speaking, drawing, presenting, and researching) and students will need to facilitate their own activities depending on which project they choose.

Differentiation: how both the content and process of the plan will accommodate the various learning styles and abilities of the students.

Natural differentiation will take place as students will naturally gravitate to an area where his/her skills are strongest. Each student should be able to participate to his/her own optimum learning style and capability. Should the students seem to choose only the “easiest” tasks, they will be allowed to choose their working groups and then the teacher will assign the project.

Conclusion: how you will provide closure and reflection for students and provide feedback.

Students will present their projects to the class upon completion. Teacher will provide written feedback regarding quality of work, but students will also grade themselves on team work and effort, and include a personal reflection on what it was like to work independently and yet inter-dependently with a group.

Assessment: Describe the assessment procedures for the project, including the creation of a rubric to evaluate students' learning. The assessment incorporates a consideration for diverse student needs. A rationale for the selection of the assessment technique based on course readings and best practices is provided.

Each specific project will have its own rubric and check list, as many of the projects address very different skills and information. (A 3D map vs. a blog.. etc).

Sunday, July 10, 2011

Resignation

Those who have followed my blog for a while know that I do not consider Arizona 'home'. I'm not happy here, and while I am not abjectly miserable either, I would really, REALLY like to pick up and move somewhere else.  Somewhere that has snow.  Somewhere that does NOT have insects that are out to kill you and fauna which would love to do the same.  I'd love to live in a place where the kids can climb trees, where I can tell them "Go outside and play", and not see them all day long, knowing they are safe and having fun.

We were close about two years ago.  Then Steve got this promotion and the economy was tanking quickly, and sometimes it does not matter how much you want something, actually doing that something is really just a ridiculous move.  We realized this.  We stayed put.  I was not one bit happy.

But now, for a multitude of reasons, we are moving again, and yet staying put.  We're going back to our old neighborhood, as we found a house that is perfect, that is in our budget and meets all our needs.  The only problem, as I see it, is that it is STILL IN ARIZONA!!!  (insert silent scream here).

In all my grumbling and obsessiveness of housing prices in Massachusetts and Connecticut, I have come to realize something. While this is not •home• to me, it IS home to my boys.  Arizona is all they have ever known. They don't mind the heat, because they have never known a summer where you can frolic outside barefoot in the grass.  They don't know how to make snow angels, or throw a snowball or what Docksiders are.  They don't miss being only 40 minutes from the ocean, because they have never, ever lived like that. I want to give them that experience, I want to be able to raise them as I was raised, with the pleasures of a simple walk along the river, but that is not what is in the cards for them, or for me.

So I resign myself.  I could struggle with it as if it is some foreign body I need to expel. I could stay angry and miffed and shortchanged because we "are still here" after all this time when I have been hoping that would not be the case for nearly 7 years now.

Or, I could just accept it.  I could put away my feelings of loss at what I am missing, and realize what THEY have. 
Friends. 
Teams they love to play for.
Teachers they know and love.
Familiarity that is the embodiment of HOME to them.

So, we are here for the long haul. Unless we have to, I do not want to move them once they get into middle school and Oldest is already there with Middle not far behind. I can retire to the beach and swing my legs over a dock when I am retired.  This is their Home. I may as well make peace with it and try to find the beauty, share with them in their experiences. 

But next summer, we ARE going to Boston for a visit!!  They WILL eat clams and walk on a beach.  Just so they can say they did...

Friday, June 24, 2011

Why Can't Things Just WORK, or Why I had to Drive 700 Miles Yesterday

Middle is in his happy place right now.  In fact, he will come home, begrudgingly, later on today.  He's been at ASTROCAMP for the last 2 weeks and has been having a marvelous time.  Because of his age, he was not able to do the "full two week" camp, so instead he is doing two-1-week camps, back to back.  This means that he had to leave camp last Friday morning and come back Saturday afternoon.  This meant, a weekend in Idyllwild for momma and boys!!

Camp is about a 5 hour drive from home.  It is sort of perfect - close enough that I can drive him for drop off but he can fly home.  He loves that part; flying home!  This year, with it being back to back, I agreed I would drop him off, then go back for the between-camp time.  I was NOT going to make that drive three times in 2 weeks.. Oh, the best laid plans.

There has been much discussion on some of the Diabetic Community boards about letting your CWD (Child With Diabetes) go to camp.  Many go to Diabetes camp, and I hope Middle will do that, too, some day.  Few, if any, were allowing their CWD to go to a "regular" sleep away camp.  Middle went last year, all was OK, and I do NOT want this disease to rob him of something he loves so much.

As I did last year, I packed Middle's supply kit with everything he would need to manage his diabetes, plus LOTS of extras that I hoped he would NEVER need, like his Glucagon pen.  I met with the nurse and his counselors and gave them clear directions while trying to not overwhelm them with the enormity of caring for a kid with diabetes.  I adjusted his PDM for his insulin delivery to be sure he was not dropping too low *he responds to insulin far differently at 5200ft than he does at sea level.

Then the call came.

Wednesday night, around 10pm, the phone rings and it is Middle.  This can't be good.  He was out of pumps and had no way to get insulin.  WHAT??

I sent him with a back up of no fewer than 3 Pods - what happened??

Well, the last one was ripped off during some activity.  I anticipated this and made sure he had a reserve of 2 additional Pods.

Both of which failed.  That's right - his last TWO Pods were both duds.  Alarmed before they were even put on him.  So not only was he getting no insulin, we also lost 300 units of insulin (the nurse did what she was supposed to, because you are NOT supposed to go get that extra insulin, no matter that most PARENTS go get that liquid gold no matter what).

10:30 at night.  A 5 hour drive ahead of us.  No insulin going into my kid. A BG reading of 377.  CRAP.

The Camp folks did the brilliant thing of calling the fire department so at least they had some needles (Because really, who needs to send needles when you have SO MANY extra Pods!!??)  He was able to get insulin before bed, and then again when he woke up, but that would not sustain him until he came home on Friday.  So, up to camp (and back again) I went at 5:45 AM yesterday morning, getting back to Chez Jensen around 6:30 pm.

Yes, it was good to see him when I wasn't expecting to.
Yes, using Audiobooks when you drive makes the time FLY by.
Yes, I would drive to the ends of the earth if it meant my son was safe.

BUT REALLY INSULET Corp??  2 dud OmniPods in ONE group???  Seriously???  I know I will be able to get those Pods replaced but who is going to reimburse me for my gas??  700 unnecessary miles on my car and in my tank ain't cheap, you know??!!

Friday, March 25, 2011

It finally happened..

The tooth came out.  My friend, Kellee, said it would probably come out on Monday morning as we were dashing around the house like crazy people without the time to stop and celebrate what just happened.

She was about 5 days off.

I was dropping the boys off today, where I do every day, in our old neighborhood so they can walk to the bus stop with their friend and take the same bus they took last year.  Only, rather than stick around and watch them get on the bus, I have to make a mad dash down to my school, lest I show up too late!  As Youngest was getting out of the car, I could see him fiddling with the tooth with his tongue.  He got this strange expression on his face, bent over (I had a momentary panic thinking he was going to throw up) and out popped the tooth!

Unfortunately, I didn't have the time to stop and celebrate with him.  I squealed my delight as Middle bent down in the grass to retrieve the tooth (successfully) and I hugged my newly toothless-wonder.  Everyone asked if he freaked out, and I think there was a moment of freak-age, but overall he handled it like a champ!

So now, my youngest, my 'baby' is slowly shedding what's left of his babyness.  I didn't get upset when he started Kindergarten, and I didn't get upset with this loss of his first tooth, but the awareness that he is rapidly growing and soon will be joining the world of BIG BOYS is not lost on me.  I would be happy to freeze time and keep him just like this; innocent, wide eyed, and toothless.  Then I realize the pride I feel when I watch my other two accomplish and discover and grow, and I think... it does only get better. 

I want to savor it all, remember it all.  I know my old feeble brain can't hold it all, so I'm thankful for THIS.. who needs a good memory when you blog?  ;)

Sunday, March 20, 2011

From the mouths of babes

Chris has a loose tooth.  In fact, it is crazy loose, but it won't come out.  This is the conversation he and I had yesterday morning:

Me: Chris, is that tooth EVER going to come out??
Chris: I'm not ready for it to come out yet, and it is following my orders.

I swear, I cannot make this stuff up! 

Wednesday, March 02, 2011

Cutting the nose to spite the face

Like nearly all districts across our state, my district is in dire straights when it comes to the budget.  We already do "more with less" and our class sizes are astronomical.  We've been promised that our district will NOT increase class sizes any further, which means, in theory, that teacher's jobs will not be cut drastically next year.  This leaves the district with the need to cull elsewhere.

The latest lambs that are being led to slaughter are our school nurses. 

Middle and I are going to a town hall meeting tonight to protest this.  I have heard the argument  -  why can't a school secretary put on a band-aid, as if that is the only job of nurses in schools!!

Middle, for one, is chronically ill.  He may not look sick, he may not act sick, but when you think about it, having Diabetes makes him chronically sick.  He needs constant supervision during the day, and during the night, to ensure his sugar levels are OK.  It is a little easier now that he is on the pump, but even so - there are times the nurse needs to use her medical training and knowledge to handle a bolus situation or give an additional injection.  I have no faith that a secretary would take on such a truly life or death responsibility.

Some students in California are being denied their right to a Free and Appropriate Public Education (FAPE) because they are diabetic.  The school districts, in an effort to cut costs, have eliminated nurses on many campuses, or make the campuses "share" nursing services.  Because there is not a nurse on campus in case of emergency, if a parent cannot be at school with the child that day, the child cannot come to school.  How fair is that??  (And yes, the ACLU is all over that!!)

I get it we need to cut costs.  How about we start with our Superintendent's inflated salary??  Leave the nurses alone!

Tuesday, March 01, 2011

Hope

One of my favorite poems is Emily Dickinson's HOPE IS A THING WITH FEATHERS THAT PERCHES ON THE SOUL.  I love the imagery in it, that hope is this little bird that comes to sit on your shoulder.  You have to be ready for it, quiet and still.  A bird is not going to just fly in for a landing in the midst of chaos.  If you are lucky enough for it to happen, you need to be waiting for it.

I think, too, that having Hope takes courage.  It's risky to keep believing something better will come around.  I mean, what if you're wrong?  Then what?

Eternal doubt keeps us from being quiet and waiting for Hope to show up.  It's hard, this waiting. 

Today was a rallying day, of sorts.  Folks from across the country to are affected by Type 1 Diabetes showed their Hope for a cure by either wearing the word on their clothing, or writing it on their hands.  I know medical science is making great strides, and that things for folks with T1D are much better now than they were then, but having hope for a cure - real, strong hope - takes a lot of effort.  When you are concerned with boluses and blood counts, carbs, making sure your son or daughter is healthy, knowing that at any moment the bottom could drop out and your child could end up another horrifying statistic, the noise of is all is deafening.  It's hard to have HOPE during those time.

So we have to STOP the Chaos for a while.  We have to be active in our fear, take charge of it and put it in its place.  Because Hope is real, and Hope is so tightly tied to Faith that they are nearly synonymous.  And it is so HARD to have faith all the time when things are going south.  You begin to ask those unanswerable questions, the ones that, when heard spoken by someone else, sound self-pitying; the ones that look like "why ME?" 

If we can truly stop the chaos, if we can make the effort to calm down, allow peacefulness to wash over us, then maybe, just maybe, we can being to see Hope again.  And soon, when amazing things are ready to happen, we will be ready to have them land softly on our shoulders.

Saturday, February 26, 2011

The boys of summer are here!

Spring training has officially begun, both for those making a gazillion dollars to chase a ball, and for my little all-stars as well.  Oldest and Youngest are playing this year - Oldest is back in the Majors with the Red Sox again (this time, I think it will be a much better experience than last year) and Youngest is playing coach-pitch AA league for the Angels.  We originally signed him up for T-ball, but who knew??  They eliminated T-ball last year!!  He has two good friends on his team, and the coaches seem to be really great with the kids, so I expect this, too, will be a good experience. 

Of course, watching the games will be a tug of war between pride and hysterical, painful laughter. They are so cute, and so bad right now!!  They will get better, and it will be fun to watch the growth.  Oldest has a new position, too - team mentor!  He is volunteering to help coach, and has found his calling for sure!!

Middle still has absolutely zero interest in baseball, but Uncle Tony is here from Minnesota for the big Scottsdale Arabian Horse show, and Middle now has a serious interest in horses.  Of course, those of you who know me know this is music to my ears, this is a child after my own heart, etc, etc...  He will take a real riding lesson (Thank you Groupon) at the end of March and we will see how he likes it. 

Middle's numbers continue to be a source of everything from curiosity to stress.  We will see how is A1C levels look the next time we go see the endo (note to self - must make that appointment) but it is my guess we are in better control now than we were three months ago.

We all love the OmniPod pump, although there is always room for improvement and I have a small list of things they should consider when going through a design overhaul (bigger viewing window so we can see if the cannula is under the skin is one).  I cannot imagine going back to doing multiple daily injections... for instance, I went to check on him when I got up this morning and he was a bit high (221) and I was able to get his PDM and give him a bolus without waking him up.

You might wonder how I knew his blood sugars without waking him to test - but remember we are also card carrying members of the Continuous Glucose Monitor set, and Dexie as we call it, has made a huge difference in our lives. 

While I hope for a cure, I also hope for advances in technology that will allow kids like Middle and the others I know to have an intuitive machine to help them manage this disease.  We can keep him stable, but it is an ever vigilant fight; no matter what else is going on, we are always asking the question "how are your numbers" and adjusting either our meal plans, or our daily plans, or our sleeping plans to ensure Middle is safe.

The whole world of diabetes care is not getting easier, necessarily, but it is getting more routine.  My fear with that, and all things 'comfortable' is that is when bad things happen.  But, puberty is right around the corner I'm afraid, and that will bring with it it's own snake-pit of issues, so may as well enjoy the little bit of quiet before the storm hits!

Friday, February 04, 2011

I'm afraid to say it...

that we are out of the woods with Matthew and this dang cold.  I will say, however, in an attempt to not tempt Fate, that he has had a run of better numbers for the last  two days.  I will take what I can get! 

It seems that living with Diabetes, you are in constant "reaction" mode.  It would be really wonderful if we could go "proactive" here, but then something like a flu bug, or a liver that spontaneously spurs into sugar production get in your way and smash your good plans all to heck.  So, we react.  Matt seemed to be an endless sponge of insulin-need while he was sick, so we tweaked his Insulin/Carb ratio (the IC ratio) and his correction factor.  Now that the cold is gone, we evidently need to tweak them back.  (He spent all day yesterday low because his IC was too high.  Or too low.. not sure how to explain that, its like do you turn the AC up, or down, when you want it colder in the house.)

His Dexie (the glucose monitor) needed to be charged last night, and no one wanted Matt to sleep without it.  It's funny how you become dependent on something you didn't have before - me with my iPad, and Matt with the Dexie.  We lived for over a year as a Diabetic family just hoping and praying the nights went well.  Now, Steve wondered how we would be able to sleep without the knowledge the alarm would let of know if something went awry.

So I breathe a very small sigh of relief that we more or less successfully navigated this first small bug.  Amazing testament to Matt's immune system that this was the very first bug he has gotten in 15 months, true.. And keeping fingers crossed that we don't have any larger test looming out there on the horizon!!

Good number, and healthy children, please!!

Sunday, January 30, 2011

A sobering reminder of what we are dealing with

6 people with T1D lost their lives this week.  None of them were old, decrepit, or ready to go.  One was only 18 months old, and died because the health care system failed and did not properly diagnose the disease until it was too late.

Two were only 16.  One passed away while taking a nap.  One was only 24, and the mother of two children.  I think the one that tugs at me most, however, was the 9 year old girl from France who had come to the end of her rope with diabetes, and took her own life.  One of the biggest "side effects" of a life long illness is depression, and yes, even children can become clinically, desperately depressed.

This week has been cold-central in our house, starting with Youngest who brought his virulent germs home and infected the rest of us.  Luckily, it was just a cold and not something more serious like the violent stomach bug that has been going around the country.  I say that not only because "violent stomach bug" is something of which nightmares are made, but because that simple cold, you know the one, with the sniffles and slight cough?  That one has had Middle's numbers hovering around 300 for days, despite the volume of insulin we pump into him.  We have doubled the amount he normally gets, and were delighted when he finally came down under 200.  (he is back at 247 this morning, so we are not out of the woods yet).  It gives my germaphobe self some reassurance that I need to be over protective, and not let Middle do things like sleep over at the zoo when the stomach flu is going around. (Remember my debate with myself from last spring? Glad I chose the way I chose!)

We were warned that illness can cause havoc with blood sugars, and holy moly, were they right.  The deaths this week snap me back from any complacency I may have been in, to realize that it could happen to us.  I hope, and I pray, that it will not, and it is easy to say "Oh, it's just diabetes" and brush it off because we hear the word so often, and we know so many people have it. 

But it is deadly.  Type 1 Diabetes can strike anyone, at any age, and the results can be fatal.  Parents reading this, KNOW THE SIGNS.  Diabetes can be 'brushed off' as any other bug, such as the flu, when a simple blood test will give you the answers you need before it is too late.  If you, or your child, experiences any of these symptoms, have a doctor do a blood-glucose reading.  It takes only a moment, and can mean the difference between life and death.  Matt had only 4 of the symptoms, so you do not need to have ALL of them. If you have more than one, please get checked.

Warning signs of type 1 diabetes (these may occur suddenly):
  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness

Saturday, January 29, 2011

Product review - The Honda Insight, 2011

The beast's tail end met the front end of another car a while back, and so the beast has been 'hospitalized' for the last two weeks.  In the meantime, we have had the pleasure of renting a 2011 Honda Insight.  It's a stripped down model, I am sure, lacking things such as the between the seat arm rest, and such.  However, to quickly sum up my experience so far, I love this car!

I would not describe it as "zippy", and without a doubt, the Insight will never win a 0-60 race, unless its with a turtle, but then, this is not the sort of car you want to drive like that.  It is not a sports car, it is not luxurious, it does not hold the whole house and your Aunt Mary in the back.  This is a perfectly functional, highly fuel efficient little car, perfect for toting around kids, or making the thirty or so trips to the grocery store.

How fuel efficient?  I am averaging 43.2 MPG.  Not too shabby, considering I am delighted when the Passat averages 23MPG on the highway.  We won't even mention the gas mileage in the Beast.  I filled up today, put 8.5 gallons into the tank, and paid a measly 27$!  WOOHOO!  Oh, and I think I have gone nearly 500 miles on that tank. 

The boys fit nicely, though probably not the car I would choose for a long road trip unless I plan to leave Steve at home.  I am not sure we could even fit both dogs in the back, but I have put Schooner back there and she fits fine. The broken view of the back window took a little while to get used to, but now I can just about see through it.  (The Prius seems to have the same shaped back window, therefore I would assume has the same broken view as the Honda)  For a small car, the blind spot over the driver's left shoulder is a bit too big, but again, it is something I would get used to rather than something that would drive me crazy.

I love the back light on the speedometer which changes from blue when you are using gas to green when the car is pulling from the battery.  I love that it rates me on how "green" my trip was!

Most of all, I love that I have traveled nearly twice as far as I could in the Passat and spent about half what I would spend to fill her up!

Sunday, January 23, 2011

An update on bionic boy

Matthew is now officially "fully wired".  He has his OmniPod (the egg shaped thing on the right side of his belly) and his DexCom Continuous Glucose Montior (The smaller thing on the left side of his belly).  Each device has its own hand held gizmo that gives us all the information we need to keep his sugars in control.

Of course, even technology is not perfect, as we found out on Christmas Day, when ketones took over and Matt felt awful.  But we do know, for example, when his blood sugars are spiking, or plummeting, we have a good general idea of where his sugars are at any point in time, and he now only needs to prick his fingers to verify what Dexie is telling us. (And to sync Dexie at least twice a day).

We are also getting used to new sites for each device.  The one big difference I have seen is that anything which stays under the skin leaves a much bigger mark than a needle.  However, we are all in agreement that we prefer to have to "prick" with a needle every 3 days (for the Pod) or 1ce a week (for Dexie) rather than many times a day.

Not pictured here is Matt's new TallyGear TummieTote, which sits nice and flat against his belly and easily holds both hand-held monitors, leaving his hands free, and rendering useless the pouch he had attached to his belt at all times.  His is in Army Green Cami, and he loves it.  He can even sleep with it on, and that means Dexie has an even greater chance of waking him up should his sugars spike or drop too low during the night.

All in all, not only is it "better living through pharmaceuticals" around here, its Better Living Through Electronics!

Tuesday, January 11, 2011

We can make a difference

As an Arizonan (albeit a reluctant one, but one nonetheless), I have been very concerned with, wrapped up in, and distracted by the "terror in Tucson".  I'm reading the Op Ed pieces with vigor, talking with my students about it, about the culture of hate we seem to be living in, and trying to come up with answers.

While Social Studies is not necessarily on my list of standards, I cannot help but bring into my classroom the struggles of people from our past and then make correlations.  Next week, we will begin reading To Kill A Mockingbird, and I have been working to set up the scene for my students, to try to help them gain a better understanding of the culture in which the book was written, and which it portrays.

This lead to the conversation about our current culture. 

I found an article today in the New York Daily News, an opinion piece, which stated that we really need to listen to the words we use, to choose them carefully because words can, and are, used like weapons.  You cannot swing a club at someone without there be repercussions, and you cannot spew hate at someone without there being consequences.

Some of the quotes mentioned in the article make my skin crawl.  To think that some of our elected political heroes speak in this manner is appalling.  That we PAY others to do it is shameful.

But we can make it stop.  Glenn Beck won't be able to have a microphone in front of him if we stop buying his books, and change the station when he is on.  (I do this very thing when he comes on to our local radio talk show station.)  If he is not bringing money into the station/publishing house/network, he will eventually be silenced.

If Ann Coulter's segments on TV no longer have the ratings, the advertisers will pull out and soon she, too, will find herself listening to her own voice all alone.

We can make a difference, by putting our collective feet down and saying STOP IT!  ENOUGH HATE!  We can elect the other guy when our politician calls his opponent a F******G raghead.  We can vote out of office the guy who takes a shot-gun to legislation he does not like.

We can make a difference.  We must.  I fear for our children's future if we do not stop this culture of hate.

My father had a tremendous respect for John F. Kennedy, and had on the wall of his office a poster portraying JFK in a lone row boat.  The inscription on the bottom read:

One man can make a difference, and every man should try.

It's time we try.