Three Months

When my husband was diagnosed with type 2 a few years ago I was just thankful it wasn't congestive heart failure which they thought it was at first.  I went into management mode and kept food logs, made him test a bunch and he got a recumbent bike for exercise.  His Ha1C went from a high 10 down to high 5s low 6s.  He does take metformin and januvia.  His diagnosis worried me as my great grandmother passed away from diabetes related complications.  I still don't know if she was a type 1 or 2.  I do know she gave herself insulin.  She had such a sweet tooth.  She made the best tapioca pudding.  I remember visiting her in the hospital when I was in second grade.  I wrote about it and drew a picture on one of those elementary papers for school back then.  I described her feet as looking like black crepe paper.  I still remember it.  She had both legs amputated shortly after that and then passed away.  That memory hit me hard when my husband got diagnosed.  I was adamant it wouldn't happen to him.  He manages his own diabetes.  We don't keep food logs for him anymore.  His recumbent bike has been sitting in the living room with flat tires for about a year, but his Ha1C is still "normal".   I'm not nearly a nag with him like I was at the beginning.  Then three months ago my Sugar Bear was diagnosed with type 1.  My heart broke.  It was hard having my husband diagnosed with type 2 but to have my baby diagnosed and looking at a lifetime of shots and possible complications and restrictions and...and..and...well, it's not been easy for me that is definite.  But last night we got the Lantus solo star.  Injectable pens for his evening insulin!  As you can see in the pic he is much happier!  So are we.  What a difference not using syringes make!  Maybe now I won't get so many of those wet shots!  In other news, we have all been sick this week, even Sugar Bear.  As far as I can tell the little guy doesn't have it as bad as the rest of us thank goodness.  We've seen higher numbers and loss of appetite but no ketones or vomitting.  For a first illness with diabetes I'll take that.  Three months in and we're still learning.

  

Unlocked

So Sugar Bear allowed me to give his very first shot in his belly.  He said it tickled.  It didn't hurt as much as the arms.  And in the process of asking him what he thought and whether we could do more shots in the belly he replied in a deepened voice "New area...unlocked"

So last night I did our normal routine and at the 3am test he was low.  Grabbed a juicy juice, made him sit up and drink it, tested fifteen minutes later and he was fine.  I asked him this morning if he remembered drinking the juice.  "No Mom, I was asleep."

Hope

Went to my first ever diabetes expo today.  It was informative and interesting.  I keep looking at pumps and continuous glucose monitors and I even got a demo pump for Sugar Bear last week.  I know in my heart these two things would give more freedom.  Sugar Bear doesn't want to even consider them.  After the expo today I don't think we're ready either.  I felt like the odd man out.  It seems that the majority of type 1s use the pump.  It was quite evident in how the expo breakout sessions did their explanations that this is more the norm.  We do MDI (multiple daily injections) which is less freedom and harder to get better control.  But it works for us at the moment.

Lot's of discussion at the expo about how great diabetes camp is for the kids.  Sugar Bear is definitely a homebody.  We homeschool and his preference would be to never have to leave.  He's comfortable here.  He's had overnights with his brother at family and friends' houses without us before type 1.  But he's never gone away by himself and he's never gone to camp.  He says he's not interested.  But we are.  I want him to gain confidence.  I want him to have adventures and exciting experiences in a
safe environment. I want to sleep for a week through 3am.   I just don't think I can force him to go even though other diabetes parents have suggested I do just that.

Some things I learned--seashells, seaweed, and reflux drugs are all being used in research with type 1.      With seashells they are working on drugs to help retrain the immune system.  Seaweed plays heavily in the encapsulation research.  And reflux drugs may be helpful in restoring beta cell functionality.  The encapsulation gave me much hope.  An implantable device that just goes under the skin and regulates insulin and glucagon without being destroyed by antibodies and not needing immunosuppressant drugs is exciting and has to be changed out every two years not everyday!  They are planning on doing clinical trials soon!  Another discovery going to clinicals is using Prevacid and a type 2 medicine to restore pancreas function in people with markers for type 1.  Or using a leukemia drug with newly diagnosed type 1s to help retain the beta cells they have and halt the progression.  So much information.  So much research.  So much hope.

One of my favorite Guided by Voices songs has played in my head since diagnosis.  I can't help that it popped in my head today.

"Every street is dark
And folding out mysteriously
Where lies the chance we take to be
Always working
Reaching out for a hand that we
Cant see
Everybodys got a hold on hope
Its the last thing that's holding me"

Holding my breath

The teenager testing Sugar Bear.

My crew.

Sugar Bear heading out with his kit.

Just a few pics to brighten the day.  Spring is just about here and we can't wait.  We had pretty warm weather on Saturday and went to a friends for dinner.  It ended up being a fairly late dinner and Sugar Bears numbers have been pretty wonky since then.  So basically we have had one decent day of numbers and now he's either high or low.  He prefers the lows because as he said "I get to eat more!"  Lows scare me.  We had a talk about it in the car on the way home as we were treating a low while driving.  Plus Drago is still healing from his concussion.  He overdid it at the friend's house and was pretty sick going to bed.  Today is a bit better for him, but something more to worry about it.  

Okay do not google this.  Seriously don't.  Wet shots.  It's actually a term we use when a little insulin or blood comes out after a shot.  The blood is caused from hitting a capillary.  The insulin is an absorption issue.  Anyway, for some reason I'm a pro at getting one of these shots.  I hate them.  I'm needle phobic and I get queasy with the sight of blood.  I've gotten better.  Had too.  I don't have to go lay down afterwards and the cold and clammy seems to have left me alone.  But in the last two days I've had two of these.  I get nervous.  I prep the site, put the shot in, count, and then I hold my breath and pull the needle out.  9 times out of 10 it's fine.  It seems like I hold my breath a lot these days.  

Anyway, that's the most recent stuff going on.

Blue

I'm putting together a team for a walk to raise funds for JDRF (juvenile diabetes research foundation).  I want to participate as much as I can in helping to cure Sugar Bear.  Last night the little guy and I designed t-shirts.  http://www.customink.com/lab?cid=dax0-000z-w1en.  I'm pretty excited about it and so is he.  Fave color blue.  Check.  Now to get some more team members to wear these cute shirts!  If you are interested in participating or donating please go here. http://www2.jdrf.org/site/TR/Walk-OH/Chapter-SouthwestOhio4501?px=8951811&pg=personal&fr_id=3349

It's been a crazy few days.  We did a dinner time correction and that seems to be working in bringing his numbers down but now we're having more lows again.  Sometimes this feels like a seesaw.  Constantly ups and downs.

And guilt is eating me up.  I've been so exhausted and stressed lately that I've missed (slept through) the 3 am checks.  Luckily everything has been fine but I hate waking up panicked because I hadn't checked.  DIB (also known as Dead in Bed) syndrome scares me so much!  Stress outside of the diabetes has not been helpful.  My job, extended family-I wish things were easier.

And finally, I found out I'm going to be a Great aunt to a nephew at the end of July.  My only nephew is going to be a daddy!  I'm so excited.  I wish I lived closer (he lives in another state hours away) so I could help out.  Baby's are such blessings!

Worry

Endo doc made one change to the dinner ratio.  Numbers were better yesterday but I still think we need to change a few more.  I think his honeymoon is basically over.  I worry.  He's been more tired and I'm sure it's the higher blood sugars making him feel worn out.  I worry what kind of damage it's doing to his organs.  I worry about the long term effects.  I worry that we're getting this all wrong.  I worry because he thinks higher numbers are okay compared to low readings.  He can't comprehend the future.  He's only 9.

Fingers crossed

Daylight savings time messes with you even when your not on a regimented schedule, but have something like type 1 diabetes and it really does a number.  More like quite a few unexpected numbers and moments.

This was Sugar Bears mid morning number as he wasn't feeling good.  It was almost lunch time with the daylight savings change and we just corrected with his bolus.  Of course we haven't changed the time on the meter yet.  Will have to get hubby to do that tonight.  Anyway, it was a pretty big shot!  Way more than a normal lunch time shot.  The good news, this was the first blood sugar test he did himself!  Of course it had to be a high number.  When we tested for snack time his number was 169, still not in range but way better and he also did that test himself too!  Then around 3:30 he says he's shaky.  I can visibly see his hands shaking so I do the test.

Really?  Not what we wanted to see.  Grabbed a juicy juice and fifteen minutes later he's back to normal.  Me, my heart was still in my throat.  It's not the lowest he's been but it was physically visible. He literally was shaking and pale.  Sometimes the lows don't seem to really affect him.  But big changes in levels like today definitely do.  Hopefully bedtime is less crazy.    

Drago is still dealing with concussion issues like headaches and dizziness.  It's hard to keep a bored teenager down.  He's supposed to just physically and mentally rest.  Not easy to do.  Wednesday can't come soon enough for him.  (That's his doctor's appointment and he is hoping to be released from his "prison sentence" a.k.a. Return to reading and watching videos and going back to school).  It's awful but I will enjoy not having to be up by 6am tomorrow to get him ready for school.  Maybe I'll be more rested this week.  Fingers crossed.

On Thursday Sugar Bear will be getting some much needed orthodontia.  Hopefully it'll help save his permanent teeth.  I, of course, will be at work-- a nervous wreck I'm sure.  

Anyway, it is about time to test for bedtime snack, then check again at 10, midnight and 3am.  Let's hope that's all I have to do tonight.  

Safety

It came!  And it matches Rufus's bracelet!  Sugar Bear put it on immediately.  When asked if he liked it he said"yeah, I guess.  It's alright."  High praise from a techie 9 year old!

Castles burning

"Don't let it bring you down

It's only castles burning,

Find someone who's turning

And you will come around. " song by Neil Young

Tough couple of days.  Sugar Bear has been having unexplained highs this past week.  His numbers have been really off.  Then yesterday hubby got a call from the school He had to go pick up the teenager who needed to be taken to the children's hospital.  He has a concussion.  No school for a week, no reading, no tv, no computers, no video games.  While at the ER with both boys Sugar Bear felt shaky.  First low in a week!  Of course.  Hubby handled it all beautifully.  Although, Sugar Bear told hubby when discussing brother's concussion that at least it isn't permanent.  Of course it could be if it doesn't heal properly-thus what feels like a prison sentence to my oldest.  So during the 3am check I was also giving Tylenol to Drago (the teenager).  More monitoring.  More stress.  Can I have a padded room and lot's of bubble wrap for my boys?  More and more tears.  And thus the song quote.  It's only castles burning.  It's life.  

Strong

http://diabetes.diabetesjournals.org/content/54/suppl_2/S125.full

http://care.diabetesjournals.org/content/36/4/810.full

These two links are just a little of the "light" reading I've been doing.  I actually find writings like these to be super informative.  The first one is about possible triggers, especially environmental, for type 1 diabetes.  The second talks about dietary fat and how it effects blood glucose and insulin needs.  It's all a juggling act.

We finally ordered one of these for Sugar Bear.
https://www.roadid.com/p/the-Wrist-ID-Slim
He's very particular.  He didn't want buckles or leather or cord.  He only wanted rubber because he said it was more comfortable.  He'd have more options if he wanted to branch out a bit but no pressure.  He has his whole life to accessorize.
And since we were looking at alert bracelets for Sugar Bear we came to the realization that hubby definitely needs one.  He has a lot of health issues and I think we're going to get an interactive ID.

In the last couple of nights we have been having high numbers, even one night above 300.  I think we may need a dinner correction to his ratio.  My guess is the honeymoon is waning.

I did some reading on ISF (insulin sensitivity factor) and think I need to get the book "Think Like a Pancreas".  I seem to run across that title fairly regularly when I'm researching.

Yesterday hubby said it felt like we were able to breathe a little better.  I said it was like getting oxygen through a reed straw.  We're not drowning anymore but this road is tough.  We're tougher.  This family has been through so much:  endometriosis and surgeries, pre-eclampsia, double knee replacements, psoriasis, psoriatic arthritis, gangrenous gall bladder removal, repair to rotator cuff, carpal tunnel, diverticulosis, bone lipping in the neck, vitiligo, Type 2 diabetes, and now Type 1 and the list goes on.  When I said I wanted to grow old with hubby I didn't mean this fast.  But we're strong.

Random Ramblings

Good news, insurance approved the amount of test strips we actually use!  That only took two months!  We probably average 9-10 times/day.  Some days we only test 6 or 8 times and other days are 12 because of highs or lows.  Sugar Bear figured out he's been tested around 6 hundred times since coming home from the hospital.  We've spent around two hundred dollars ourselves on test strips (thank goodness for tax returns).  So this is fantastic news.  Now to look into coverage for a pump.  And see if we can't get that pen for lantus so we can be done with syringes for now.

We've had a week of higher numbers.  We finally got them back to range the last two days and then we had a low last night before bed.  Luckily juice raised it and it stayed consistent all night.

This is a great link with some basic information.  We've been trying to figure out how hubby and I could go out together without children.  We don't have our parents in town and our friends are not familiar enough with taking care of Sugar Bear so we're trying to find sites that might help with educating possible babysitters.  We do have a friend in a city about an hour from us that we found out last weekend would make a perfect babysitter-she knows carb counting, how to give shots, and emergency care.  It's all logistics.
http://web.diabetes.org/wizdom/download/Child.pdf

The other thing on my mind is that spring is around the corner and what am I supposed to put in sugar Bears basket?  We usually have some jelly beans and chocolate bunnies.  I think I may make something like this http://www.food.com/recipe/easy-easter-carrots-peter-rabbits-carrots-249935. I think the little guy would enjoy it and with my new food scale it would be doable to make sure each "carrot" was 15g.

Finally finished the little book I got at Christmas time.  It took me forever to read since time is never enough anymore and I was spending any and all free time researching.  I'm still researching but I'm trying to find a balance.

The teenager went to a gaming night at his school that was a fundraiser to help a child with diabetes get an alert dog.  I would love to eventually get Sugar Bear an alert dog before he moves out.  By then our little mini Aussie would be too old.  It'd be a relief to make sure he had a companion that could alert him when he was dropping or spiking.  It's expensive.  It's a long ways down the road.

First I want to work on the boy giving himself his own shots and the testings.  Get him comfortable with that and then learn the pump and CGM.  Sugar Bear has always loved monkeys and something like this http://specialchildren.about.com/gi/o.htmzi=1/XJ&zTi=1&sdn=specialchildren&cdn=parenting&tm=4&f=22&tt=13&bt=4&bts=4&zu=http%3A//www.fifty50pharmacy.com/Merchant2/merchant.mvc%3FScreen%3DPROD%26Store_Code%3DF5%26Product_Code%3DSKPUMPERNICKEL%26Category_Code%3D might be useful.  Little guy liked the idea.

So mostly boring.  One could even say it's almost normal.  No, we haven't let our guard down but now the boat feels like it's rolling with the waves instead of feeling like we were going to capsize at any moment.  This is less stressful, still exhausting, still awful, but we're breathing, we're living.