Back on Insulin

The respite was short and Kaitlyn started back on insulin March 25, 2016.  This time, she's taking shots for every meal, and the logistics are much more difficult. Where do you carry insulin? Supplies?  What if your purse for Prom doesn't fit an insulin pen?  She's still doing well, but it stinks.  She got a Dexcom cgm that she really likes and has already requested a pump.

On and Off Again

Kaitlyn seemed to be doing fine until she woke up with a cold on February 22, 2016.  I innocently asked her to check her blood sugar without any real concern that it would be anything but normal.  137.  Not bad if you're diabetic.  Not good if you're not.  I wondered about it through the day and asked her to check her sugar after school.  175. Later numbers were 177 and 154.  Something was definitely up, but we hoped it was just temporary because of the cold.  For the rest of the week, her fasting blood sugars were in the 100s and she had numbers ranging from 65-226.  By the end of the week, we both felt it was TIME.  Trialnet's purpose was so that we could support her pancreas as soon as it needed help and not wait for poor metabolic memory or DKA.

Kaitlyn took her first insulin shot February 26, 2016.

Her attitude was amazing!  She went to a French Convention that day, but knew that we would hear from the doctor.  She made me promise to tell her as soon as I heard, and she sent a million texts asking if I'd heard.  I had to tell her...even though she was still on the bus.  I texted her a little later to see how she was doing.  She replied, "It's in His plan for His glory.  I'll be okay."  The next day, she looked at us and said, "It''s probably good that this is happening now while I have the two of you here to help me instead of when I'm alone off at college."  You just can't ask for better than that!  Trialnet made the adjustment easier for her.  She still grieved, but it wasn't as much of a shock.  She got to start with only one shot a day while she thought through routines.  It was just a gentler start than Andrew had eight years ago.

Kaitlyn went on just a small dose of Lantus.  So small that the doctor said it was fine to let her sleep through the night.  Her numbers were great the next day, even without mealtime insulin.  So great, that the doctor asked if we would check her at 2 a.m.  Of course, we would!  It was really strange dealing with diabetes without a Dexcom.  She's driving, so she had to check her blood sugars every time she drove, etc.  Andrew can just look at Dex.  After a few days, the lows started.  We reduced the dose, and reduced it again.  Still, she had lows nearly every day.  Last Tuesday, she stayed after school as an Ambassador.  She checked her sugar before leaving - 41 with no symptoms!  So, with the doctor's permission, she is OFF of Lantus again!  She has been off for 3 days and is doing fine so far.

During her week and a half on insulin, we visited the doctor.  Her A1c rose an entire point since her last visit.  Something is definitely happening, but she appears to right on the edge.  She struggles with high carb meals, so she may go on mealtime insulin instead.  We don't really know what's next.

It was surreal trying to adjust to the diagnosis, but only for a week and a half.  We didn't have the learning curve that we had with Andrew, but it was still exhausting!  Even though I felt like I was doing okay in the daytime, my sleep was fraught with diabetes, and the 2 a.m. checks felt like I had a newborn again.  Then Andrew had some complicated nights too (pump failure in the same week!), and we were about to fall apart.  This time, even though I expected the disease to be forever, I knew the exhaustion was temporary.  Even if it was just until we could get a Dexcom for her, we would sleep again.

We are enjoying the respite but are not ready to let our guard down yet.  How long will this last?  We appreciate the insulin free days.  She is starting to carb count to answer the question of what size meal does she need help for?  Thank you, Trialnet, for the heads up, so that we can keep her healthy.  Thank you for taking some of the sting out of a diagnosis I still hate.

The Song That Sums Up How I Feel As A Christian Parent of Type 1 Diabetic

It is difficult to be the Christian parent of a type 1 diabetic.  You honestly trust God, but it is so hard to see your child suffer.  God gave us the instinct to protect.  And then we realize we really can't.  I love the Lord, and I have given Him my fears and anxieties over Andrew a million times.  Yet, when diabetes turns ugly, it still takes my emotions days to recover.  I pray, remind myself of the Gospel, and tell myself the truth, but it still hurts.  And I can't make it stop.  I've decided it's okay.  I allow myself to grieve, again, but concentrate on the truth and what's important until my emotions recover. Praying for wisdom, analyzing numbers, and making changes help too.  This all sounds easy until your heart flies into a tailspin again....

Andrew had a really bad low at school a little over a week ago.  He was so disoriented that he got up and walked out of class without speaking to anyone.  Yes, he had sugar on him, but didn't know to take it.  Yes, the teacher would have sent a buddy with him if he had said anything.  Her room is at the end of the hall, and instead of heading toward the nurse, he went the wrong direction, and headed...straight outside!!!  He has no memory of this.  He turned around and fiddled with the locked door handle and a teacher let him in.  His teacher escorted him to the nurse, who gave him juice and cared for him.  And he was okay.  He was supported by teachers, his nurse, and friends who laughed with him, but didn't make him feel bad.  He was fine.

I was NOT!!!  My first reaction was anger.  How could this have happened?  How did he end up locked outside???  The truth is I love and trust the people involved in the story, and they were there for him.  Was it messy? Yes.  But everyone did everything they could to help him.  We are six and a half years in, and I've learned that when my first reaction is anger, it is often because anger is more comfortable than fear.  If I can find someone to blame, I can convince myself that this will never happen again.  I can pretend that I can keep him safe.  Anger melted away relatively quickly, but fear stayed.  He is getting older, and I will not always be there with him.  It will continue to get harder to protect him.  Driving?  College?  And then I remember he's only thirteen.  I know not to borrow trouble and to pray because God will always be with him.  Trust is a process.  I trust God with Andrew. And I still get scared.  I know God has numbered his days and will be with him every day in this life and the next.  I also know that the number of Andrew's days is not a reflection of God's goodness.  I know that I don't want fear of diabetes to be a stumbling block that keeps Andrew from doing anything that he feels called to do.  Diabetes deserves our constant respect and attention.  I also don't want it to define him... or me.  But it is such a battle to get my emotions to line up with what my mind knows.  I spent a lot of time in prayer those next few days, and this song, " King Of My Heart" by Love & The Outcome, came on the radio and really ministered to me and expressed the desires of my heart.  Here is a link to the You Tube video and the lyrics (parentheses mine):

Love & The Outcome's King of My Heart Official Video

Lyrics:
I'm in a war every minute
I know for sure I'll never win it
(I've given up on perfection with diabetes.  There will always be those unexplained highs, lows, sick days, site failures....)
I am David up against Goliath
And it's a fight for my attention
(Yes!!!  Diabetes is so time consuming.  It requires attention, but with 5 kids there are lots of other important things too!)
I'm being pulled every direction
This world tells me trust what I can see
Lord, won't You help me believe what I believe
(God, I trust You!  Please help me trust You!)

You are bigger than any battle I'm facing
You are better than anything I've been chasing
Savior and royalty, the only hope in me
Jesus, You are, You are
The King of my heart, heart
The King of my heart, heart

All by myself I fall to pieces
But You are strong when I am weakest
I feel Your kingdom come alive in me
My feet are bruised but they'll follow where You lead
(Yes!)

You are bigger than any battle I'm facing
You are better than anything I've been chasing
Savior and royalty, the only hope in me
Jesus, You are, You are
The King of my heart, heart
The King of my heart, heart

Your love is deeper than the ocean
You wash away my brokenness
Your arms are always open
Come and rule in me
Come and be my king

You are bigger than any battle I'm facing
You are better than anything I've been chasing
Savior and royalty, the only hope in me
Jesus, You are, You are
The King of my heart, heart
The King of my heart, heart
You're the King of my heart, heart
The King of my heart, heart
You're the King of my heart, heart

This was and is my prayer.  I feel better now.  I'm still praying for Andrew.  That never stops.  God is the focus of our devotion, and diabetes is back to the back burner.  Not ignored, just not front and center.  We decided the probable cause of the low was that his weight lifting class had shifted to playing soccer and his insulin needs dropped considerably.  We created new basals, and Andrew is doing great again.  I thank God for His wisdom and patience with me! He really is bigger than anything I'm facing and deserving of being the King of my heart!

The "Annual" Update

Every year, we walk in the JDRF Walk to Cure Diabetes.  Around the walk date a couple years ago, I started an "annual" update over email to our church family and a few friends.  Last year, I never got around to the update.  Yes, we were busy, but I think I also just didn't have the heart to share Kaitlyn's news, especially when it was still so easy to ignore it. This year, I've decided that this is where our update belongs.  I'll recap a bit for friends who are seeing this for the first time.

Our lives changed on January 25, 2008 when Andrew was first diagnosed with type 1 diabetes.  Type 1 diabetes is an autoimmune disease that attacks the pancreas and its ability to make insulin.  Andrew immediately began a lifesaving regimen of at least four shots a day of insulin.  He had to check his blood sugar before every meal and before bed and any time that he didn't feel right to see if his blood sugar was too high or too low.  A year later, he switched to an insulin pump, which allowed for more precise doses of insulin and gave us more freedom to adjust his insulin when he is active or sick.  This past January, his first pump went out of warranty, and he upgraded to a touch-screen pump called the t-Slim.  He is a very active young man, and blood sugars and insulin sensitivity are very affected by activity.  Andrew would have lows hours after games and often at night while he was asleep.  Last Fall, he upgraded to a new dexcom continuous glucose monitor which gives us much louder alarms at night when he is low.  It has brought us great peace!!!  I sleep so much better knowing that I will be able to hear if Andrew needs me in the night.  So, this year has been one of good technological advances.  It has also been a good year for Andrew personally.  Though I could tell many stories of diabetes at the ball field, Andrew has persevered through it all and stayed dedicated to being an athlete.  His hard work paid off last weekend when Andrew made the middle school baseball team ... despite having diabetes!  We are so proud of him!!!  He has also been playing football for the first time.  Being at middle school, he has been much more independent in his diabetes management.  He has done a great job taking care of diabetes and learning football at the same time.

Kaitlyn was officially diagnosed with type 1 diabetes in March of last year.  She was diagnosed through a research study called Trialnet when she failed two successive oral glucose tolerance tests.  She is still handling a normal diet though and isn't requiring any insulin!  Praise God!!!  She sees an endocrinologist every three months.  We have seen her A1c (3 month blood sugar average) creep up slowly from 4.9 to 5.1 to 5.4 this last visit.  Though still well below the 6.0 mark, we note the change and just keep an eye on her.  She checks her blood sugar twice a week first thing in the morning and a couple times a week after dinner.  Doctors are certain that she has the disease and that insulin dependence will come.  In the meantime, we thank God for the time that she has without the worries that diabetes brings with it.

We ask that you pray with us that Kaitlyn continues to not need insulin for a very long time.  Please pray for God's protection for Andrew against the complications that are associated with diabetes (kidney failure, heart disease, blindness, loss of lower limbs).  Good control helps, but sometimes complications still come.  Please pray for wisdom for Andrew and us as we have to make frequent and quick decisions about how to handle diabetes given the amount of food, exercise, etc.  Thank you so much!!!

Here is a link to a video that Kaitlyn and Andrew made together two years ago: 
Walk Video 2011
If you are interested in donating to JDRF, the link in the video is old.  Try this one: 
Donate to JDRF
Thank you!!!

Five Years!

Five years. 
Five years ago today, Andrew was diagnosed with type 1 diabetes.  I've thought about this milestone as we approached it, but the great thing is I didn't realize this was the day until thirty minutes ago!  Diabetes is no less important, but I love how it has become less consuming in my thoughts.  I don't know if anyone else thought of it today either.  Of course, thirty minutes ago when I wandered in to check on Andrew and saw his blood sugar was rising despite a correction, diabetes had my sudden attention.  I sent Andrew in to check ketones, and when he asked me to get him some water, I knew what the result would be.  Yes, ketones.  Either his site was bad or he is starting a tricky illness.  He doesn't feel good, but it is hard to tell if sickness is causing the ketones or ketones are causing him to feel sick.  We did a site change and a full correction.  I honestly believe he will be fine by morning, but I'm definitely checking on him in a couple of hours.
Five years.
We have come such a long way.  The first year, every day was new and difficult.  Every meal was hard to carb count  and dose and every new adventure at school or with friends had to be planned so that he could be safe and still act like a normal kid.  It was so exhausting.  I remember when he said he couldn't go to AWANA at a friend's church because he had diabetes.  I replied, "Of course, you can!" and thought to myself, "Now how am I going to make THAT work???"  But we did.  He was seven then, and he is twelve now.  He has grown so knowledgeable and responsible.  He can carb count his own meals and dose his own insulin through his pump.  He can go to a friend's house and carb count and take care of his diabetes all by himself.  He really is amazing.  Day to day life is less stressful because we have seen and dealt with so many situations already.
Five years.
I hate diabetes more now than in the beginning though.  I thought then that I would somehow figure out the patterns, everything would get better, and that his numbers would be great.  I'm disillusioned now.  I'm tired of calling in numbers and even the nurses not seeing a pattern.  Control is a myth and an ideal to strive for but lows and highs are going to happen.  Sites fail.  Like tonight.  I just wandered back in there and now Dex reads High and headed up slanted.  I read recently about three clinical stages of type 1:  not requiring insulin (Kaitlyn), needing insulin for control (Andrew five years ago), and needing insulin for survival (now).  If the site was bad, it was fine at lunch, so ketones developed in a matter of hours.  It's really scary how quickly he can get sick.  His lows seem a little scarier now too.  That's sad, but normal too.  I hate diabetes.
Five years.
I'm thankful for the new tools that we have to fight diabetes.  The pump is so much easier than pulling out shots all the time.  Dex, our continuous glucose monitor, has been a lifesaver, literally.  Andrew doesn't wake up in the night when he is low, so that low alarm is priceless.  If you're convinced he would wake up if he is low enough, go back and read the blog about the night he woke up low, but couldn't move or talk to get help.  We upgraded to the new Dexcom 4(http://www.dexcom.com/dexcom-g4-platinum) in December, and the alarms are so much easier to hear!  It looks cool, and the range is so much better.  The old Dex would say out of range when he rolled over in bed.  The new one picks up from the stands almost the entire time he is playing basketball!  This coming week, Andrew is getting trained on his new pump called the t-Slim (http://www.tandemdiabetes.com/Products/t-slim/Slim-and-Sleek/).  It has a touch screen and holds 100u more insulin per cartridge, which will be important as he approaches his teen years.  I'm hoping he likes it as much as he thinks he will since he is stuck with it for four years.  I am excited about the potential of the dexcom and pump working together to keep his blood sugar in control with an artificial pancreas in coming years.  Technology is great when it works.  I just checked on Andrew again.  Dex says he is High, but headed down slanted.  The new site is working, and Dex lets me know how he is doing without waking him and poking his finger.
Five years.
We have met amazing people and some great experiences because of diabetes.  We've grown and learned so much.  Andrew is healthy and happy.  It may not have been easy, but it has been a good five years. Camps, parties, friends, trips, talks, sports, etc.
Yes, five good years, even with diabetes.

Why I Recommend Trialnet

I've seen some questions lately, so I'd like to summarize our experience with Trialnet and explain why I would do it all over again.

The Trialnet Story

January 25, 2008, our lives changed forever with Andrew's type 1 diagnosis.  Our children were given the option of participating in Trialnet, but none of them were pressured to participate.  Kaitlyn immediately volunteered, and she was the only child tested at the next doctor visit.  She wanted to be a part of science and help doctors find out what caused diabetes.  She was so eager that I'm not sure we thought too long about how it would feel if the results came back positive.  Until they did.  I won't lie.  It felt like I'd been punched in the stomach...again.  They explained that it didn't mean she would get diabetes, because some people with antibodies never get diabetes.  They recommended a genetic study for a gene that they have found protects against diabetes and an oral glucose tolerance test.  Her genetic study revealed that she did not have the protective gene.  In 2008, she had four of five antibodies and was placed in the highest possible risk group with over a 50% chance of developing full type 1 diabetes within five years.  The boys all one by one volunteered and tested negative.  Kaitlyn began oral glucose tolerance tests every six months, and fell in love with the nurses who cared for her.  She loved being doted on, and, yes, she loved getting paid to participate. She went every six months until she failed two tests in a row and was officially diagnosed on March 5, 2012.  She is still doing great without insulin though.  Her highest ever A1c has been 5.1.

So, we've lived everyone's worst fear.  First antibodies and then diabetes.  She was diagnosed so early though, that we could still be blissfully unaware.  Do I hate diabetes?  YES!!!  Do I have any regrets about Trialnet?  NO!!! I have several reasons why I'm glad we participated.  But Kaitlyn is 13 now, and I thought you might like to hear first how she feels about it.  I asked her the following questions and typed her responses.

Q: Would you encourage someone to do Trialnet?


I encourage it because it gives you some warning. Sure, it’s sad when you find out, but at least you’ll be prepared for it when it does happen.

Q: Did it drive you crazy worrying about it?

I wasn’t worried. I just kind of enjoyed myself and got to know the really sweet ladies.

Q: Do you ever wish you didn’t know?

No. I don’t wish I didn’t know, because then I’d be more devastated and less prepared. It would seem so sudden.  At least now that I know I’m diabetic, I enjoy the short time that I have. I know I need to cherish things because it will be harder soon.

Obviously I've worried about her over the years.  I grieved a bit when I found out she had antibodies, when she didn't have the protective gene, when she had her first impaired glucose tolerance test, when she failed the first test, and when she was diagnosed.  But I have never regretted being a part of Trialnet. 
Here's why:

1. Trialnet protected Kaitlyn's health and will protect her from metabolic memory.


Sure, we all know the symptoms of diabetes. But, may I add, that we all know the symptoms when the body is already really struggling with diabetes! We don't know when the blood sugars first start to rise. I don't like to think about metabolic memory much because I can see in hindsight that Andrew had symptoms long before diagnosis. His initial A1c proved he had high blood sugars for a long time. However, Trialnet has given me the opportunity to protect Kaitlyn from this very real threat:

"The concept of a “metabolic memory,” that is of diabetic vascular stresses persisting after glucose normalization, has been supported both in the laboratory and in the clinic and in both type 1 and type 2 diabetes. " ( http://jcem.endojournals.org/content/94/2/410.abstract)

It's the idea that once stressed, the body still remembers some of that destructive behavior. I wasn't able to protect Andrew. But I know this - Kaitlyn won't be in DKA at diagnosis. She won't have poor metabolic memory. She will be healthy and get insulin support as soon as she needs it. Her pancreas won't be burnt out like Andrew's was. We will support it and hopefully have a long, wonderful honeymoon. We will do everything we can to keep her as healthy as we can. For me, waiting until she shows excessive thirst and urination is not good enough!

2.  We know much of what we know about the development of diabetes because of Trialnet.

An adult friend of mine was told that he got the flu, it attacked his pancreas, and he got diabetes that weekend.  Now, we know that isn't really true.  An illness may tip Kaitlyn over the edge where she needs insulin, but that trigger didn't cause it.  This process is well under way.  That is also the reason that we have prevention trials now.  There is hope that we may learn how to prevent this disease even before we can cure it.  That means none of my grandchildren will have this horrid disease.  Those trials wouldn't even be thought about if not for what we've learned through Trialnet and similar trials.

3.  Simple blood tests are giving clues to find a cure for our diabetic children.

They have found people who have antibodies but never get diabetes.  They have found a protective gene that most of these people have in common.  Within that is a clue.  What does that gene do to protect them?  Can we do the same thing for others to protect, treat, or cure???  They have learned to predict diabetes well with antibody testing.  Surely, the functions of those antibodies hold clues as well.

4.  Trialnet offers trials for prevention.

Trialnet has prevention trials for people who qualify.  For example, oral insulin was proven to not prevent diabetes, except that it did have a delay effect in a small subgroup with high levels of a certain antibody, the only one Kaitlyn didn't have.  The oral insulin has no side effects, at least that I know of, and may delay onset of symptoms by almost five years!  Ask any diabetic if they would have taken a pill every day to have five more years before diabetes!  There are a couple of new trials out now.  I started Kaitlyn on some supplements after her diagnosis that my other children are not on.  Her high bgs regulated and she has been doing great.  She wouldn't have that support if we didn't know. 

5.  Trialnet set a positive framework in place for Kaitlyn before she needs it.

She loved, loved, loved the people at Trialnet.  They were so positive and great models for her.  She has been curious about diabetes and willing to learn long before she needs it.  I'm not sure my other non-d kids can carb count, but she can because she wanted to learn.  She has had the opportunity for a gentler intro into diabetes.
I wish I could take diabetes away from Andrew and keep Kaitlyn from getting it altogether.  I have grieved in stages and will grieve again when Kaitlyn starts insulin.  I know it isn't over.  I can completely understand why some aren't willing to know.  To me, the protective benefit of knowing early is so worth it.  I don't check my other kids.  Until diagnosis, I wouldn't check Kaitlyn unless I saw symptoms.  Now, we check about two fastings a week and two after meals a week.  We will call if either of those numbers starts to creep up.  Hopefully, that will still be a long way away!!!

Rising Numbers For Kaitlyn

Kaitlyn has a cold, and has lost her voice.  We watch her numbers more closely when she's sick.  Everything seemed fine until last night.  BG 158 after dinner.  Normal is under 140.  Her fasting this morning was fine, so we hoped it was a fluke.  We set the timer after dinner to get a good two hour reading.  153.  We tested again at 3 hours - 145.  These aren't horrible numbers.  They just aren't NORMAL ones.  Maybe they'll go back to normal when she gets well.  Or maybe the cold will be the straw that broke the camel's back for her struggling pancreas.  She goes to Vanderbilt next week.  Please pray for God's Hand to protect her!!!  Thank you!!!!

A Poem Written Before Last Year's Walk

It's time to walk again to raise money to find a cure for type 1 diabetes, but I haven't sent out any emails yet  about the walk!  I found this poem that I scribbled down one night last year as I prepared to organize last year's walk team.  I'm definitely not a poet, but it still conveys much of what I feel:

Will you walk with me again?
I really hate to ask.
Would it hurt to skip a year?
Should last year be the last?

But then I think of when...
We first learned that life had changed
For precious little Andrew
...Not the life that we had planned.
How every day is fraught with peril
Highs and lows that come so soon
And I think of complications
   that always seem to loom...

I think of Kaitlyn and her carefree life
Despite her antibodies.
Despite the oral glucose test that
   proves her body's fighting.
I think of the sad look
   in the researcher's eyes
As he reminds the stats suggest
   it's just a matter of time.

She too will join the ranks of those
Who fight this mighty beast.
 She too will poke herself
   too many times a day.
Try to plan for each and every thing
   that might could come her way.
They count each carb, plan every bite,
   and inject for every morsel.
They wear contraptions just to live
   as close as they can to normal.

Will you walk with me again?
It really isn't in vain.
They've come so far since
   this race for a cure began.
We have good meters and better insulin.
Better pumps and even better
   continuous glucose meters.
We're running trials not in mice
   but in real, live human beings.
There's even one they hope to use
   for people such as Kaitlyn.
One that might stop this disease
Before enough damage is done.
It might not fixed the diagnosed,
But prevent it so there's none.

The artificial pancreas is an aid
   for those who wait.
Not a cure.  A treatment sure.
One that ends the swings
   from highs to lows and
The fear and embarassment they bring.
Less fear when playing, sleeping,
   pitching, testing.
No future lows when he is driving.
Less chance of complications coming.
Less change of Andrew dying.

Will you walk with me again?
Yes, research needs the money.
But, will you walk with me again
Just because we need YOU coming?
It's our 4th walk
So we're old pros.
But we don't want to be.
The fear set in that this is just
   how it's going to be.
No breaks in sight.  Not one night
When we know for sure
  he'll be alright.

It's not that we haven't learned
The tools and tricks to cope.
We count, measure, calculate
and know just how to dose.
He can go dangerously low
without much adrenalin from me.
Just another story and a dose of reality.

Andrew is amazing.
My little hero man.
He handles all of this as well
   as any young man can.
We're not pathetic.  We're okay.
I'm not telling a lie.
It's just tiring and lonely.
We're thankful for our friends.
Will you say a prayer for
   Kaitlyn and Andrew?
Will you walk with us again?
Thank you!

Surprise Ketones

Andrew had very large ketones tonight!!!  We completely didn't see it coming.  At lunch, his BG was 72 (great number), and he ate a slice of meat and some pears.  He rose steadily through the afternoon, so Gene had him do a correction about 30 minutes before dinner.  He was in the low 300's then, but he was coming down before we sat down to eat.  Andrew ate and got seconds, but then said that he didn't feel good.  He was a little nauseous.  So, I asked him to check his ketones.  He looked at it and said, "Time for a site change!!!"  It was black.  The site was two days old and looked fine, but we changed it anyway.  I was afraid to give an injection because he had a large dinner bolus on board.  Or did he?  We checked blood ketones, and they were the highest I've ever seen - 2.2.  I called the doctor just to be sure since I've never seen ketones that high.  She said we were doing everything right and that the ketones should clear.  Push 4 ounces of fluid per hour and give any corrections >300 with a syringe.  Andrew was happy that his last check was 298, so he could do the correction by pump. His last ketone check was also down to small.  Crisis averted.  I'm so glad he wasn't playing ball or exercising tonight.  Once we found the ketones, we put in his favorite movie, The Blind Side, and sat on the couch.  I'm also thankful for Dexcom, because I turned his basal rate of insulin way up until I could see his BG coming down.  His basal rate right now is still insanely high (+120%!), and Dex says 240 and steady.  I don't want to cancel the basal yet, but I can't sleep with that going either!

General Update

Wow!  I haven't written in a long time!  I think about it often.  This blog has been theraupeutic for me, but I've been so busy that I haven't had time to write. Many of my imagined posts have involved  the Ping and the Pod (insulin pumps) that have been warring for our affection for the last few months.  Both have won battles, and there have been days that I have been ready to claim a victor.  Tonight, however, I'm still not sure of the winner.  So that story will have to wait for another night.  This one will be a ramble just to get past the block of the first post.

Kaitlyn blood sugars are doing great!  She hasn't had "high" blood glucose since diagnosis.  She was a little concerned about a 143 Tuesday night after getting hit in the head with a softball.  It left a scary dent in her forehead, so I took her to the ER.  Despite five kids, I've taken my kids to the ER three times.  1.  When the nurse at church told me too when Will fell out of a swing.  2.  When the doctor sent Andrew to the ER at diagnosis. 3. When Kaitlyn was hit Tuesday night.  She checked out okay, and they didn't even diagnose a concussion.  She looks and feels better.  I still feel a dent though....  As far as diabetes goes, I think she/we have worked through the grief stage.  I, at least, don't think I'm in denial of what will come, but, realistically, what she's dealing with isn't what we know as diabetes.  She checks her blood sugars, and they're always great.  I want it to stay that way a really long time!!!

What I didn't see coming was how seeing her normal BGs make me feel like a failure with Andrew.  I'm not only fine, I'm happy with a fasting BG of 120 for Andrew.  If it were Kaitlyn, that would be horrible!  I think I've stepped backwards emotionally in handling diabetes.  Don't get me wrong.  It's better than the beginning because I don't think about diabetes every minute.  In between, our life is peaceful and joyful.  There are days too that diabetes doesn't get any more attention than a neccessary inconvenience.  Then it a second, it takes your breath away again.  I hate diabetes more today that I hated it at the beginning.  I hate what it does to my boy.  I hate that I can't fix it.  I can't even regulate it well.  I'm tired of poking him.  I'm tired of seeing him high and low.  I'm tired of worrying about complications that may come if I don't do a good enough job helping him now.  Or complications that might come even if I do everything right.  I'm tired of the stories that I didn't write here.  The pod failures, the dex graphs, the bad baseball low, the forgotten diabetes bag, the swim party with friends....There are far worse things than diabetes, but I'm just tired and see no end in sight.  I think I have "diabetes burnout"!

One unwritten post would have told the story of Andrew participating in a research study to see if patients with type 1 for over three years still make any of their own insulin.  Andrew does not.  Those who do still make some of their own have fewer complications and usually lower A1c's.  Bummer, but not a surprise.  Andrew gets sick if his pump comes out in his sleep.  We didn't really think he was making that much of his own insulin! 

On a happier note, Andrew is actually doing great!!!  He finished elementary school with all A's all the way through!  He played travel baseball this Spring, and his team won the state tournament!!!  He is growing well in every way, and is headed to middle school this Fall!

Happy Mother's Day!

Happy Mother's Day to all mothers!  Check out this amazing blog post by another D mom!  http://www.ourdiabeticlife.com/2012/05/we-are-d-mothers.html

A Timeline For Kaitlyn's Journey

Kaitlyn's story began after Andrew was diagnosed with type 1 diabetes on January 25, 2008.  She was the only one of the kids at that time to volunteer for Trialnet's Natural History Study.  She was so excited to be a part of real science and to have the opportunity to help doctors learn about type 1 diabetes and move us closer to a cure.  Since then, the other boys have all volunteered and are all negative for autoantibodies.  I thought a timeline might be interesting, but I've struggled with the formatting.  I hope you can read it okay!

 

• January 25, 2008 Andrew’s type 1 diabetes diagnosis

• February 18, 2008 Kaitlyn volunteers for Trialnet Natural History Study

• April, 2008 We learn that Kaitlyn is positive for 3 antibodies: GAD65, ICA512, and ICA

• June, 2008 Kaitlyn takes her first oral glucose tolerance test (ogtt) and is tested for the protective gene. She does not have the protective gene, but her ogtt is normal and A1c is 4.8.

• December, 2008 Kaitlyn has her first impaired glucose tolerance test. She finished with a two hour reading of BG 164.

• June, 2009 Normal ogtt. 120 minutes BG 131.

• December, 2009 Impaired glucose tolerance. 120 minute BG is 174.

• June, 2010 First time I asked for readings and realized she had impaired glucose tolerance. She went over 200 for the first time and ended at 194! 

• July, 2010 We add Vitamin D to her daily multivitamins.

• December, 2010 Better ogtt - Final BG 141

• June, 2011 Final BG 134. Under 140 is normal, but since her blood sugar climbed to 208 at one hour, it is classified as indeterminate rather than normal.

• November, 2011 Kaitlyn has a minor toenail surgery, which doesn’t heal well. It infects on Thanksgiving and continues to give her problems for the coming months.

• December, 2011 Final BG 257, which is definitely diabetes. Since she has no symptoms, the test has to be repeated to confirm. Her A1c is 5.0, the highest it has ever been, but still normal.

• Late December, 2011 I talk with the doctor and we decide to watch her and not return for a repeat ogtt until Andrew’s next appointment. We begin random after meal checks and occasional fasting BGs to keep her safe.

• In addition to the Vitamin D, Kaitlyn begins taking DHA and Glucocare.

• January, 2012 Final toenail surgery and confirmed bacterial infection.

• March 1, 2012 Ogtt. Final lab reading 200. A1c back down to her normal 4.8. Results didn’t come in until Monday.

• March 5, 2012 Official diagnosis day when the second lab reading 200 or over came in. So close!

 

Kaitlyn's Official Diagnosis - 3/5/2012

Kaitlyn was officially diagnosed with type 1 diabetes today.  Her ogtt came in at exactly 200.  Her A1c is back down to 4.8 though, which makes me feel better.  Maybe the supplements are helping prolong the honeymoon.  I asked to be sent the antibody numbers too when the labs come in.

She won't go on insulin yet.  We just need to take a couple fasting blood sugars and a couple after meal (high carb ones) per week.  She has taken a fasting BG every day for the last week, so in some ways we're backing off.

Kaitlyn is doing okay.  She's had a few good cries and has texted her friends.  It's good to know that she has friends at school and church supporting her too.

Andrew has had a really hard time with diabetes and sports lately.  I'm too tired to tell the stories from the weekend.  Yesterday really scared me.  I really hate the idea of Kaitlyn fighting this battle too.  Today was another step in that direction, but the reality is that she isn't fighting the same fight, at least not yet.  Please pray that this honeymoon stage lasts a really long time!  And please pray that the Lord comforts her though this stage.  She is an amazing young lady!

Maybe Not!

I expected it to be clear cut, but it is possible she passed!  Her fasting was 82.  I asked for a meter number at 90 minutes and two hours.  90 minutes BG 180.  2 hours BG 185.  Still going up - bad sign.  Under 200 - good sign.  I asked to check our meter to see if it's just reading high.  201.  Everything depends on the lab readings, so we will have to wait and see. We should hear Monday.

Thank you so much for your prayers!  We can feel them!

It's Time

So, I've worried about diagnosing Kaitlyn too soon, eliminating her from trial opportunities and saddling her with diabetes tasks before they were necessary.  I was concerned enough to consider not taking her tomorrow.  Then she had the sniffles this weekend.  This week her fastings have been higher, usually around 117.  Normal is under 100, and diabetes is over 125.  I guess she's starting to struggle.  So, it's time.  Her two hour number was high last night (144), so we're not hopeful that she will pass the oral glucose tolerance test tomorrow.  I thank God for the clarity, even though it wasn't the way I wanted.  Please continue to pray for Kaitlyn in the coming days.  Thanks!

Kaitlyn's Getting Nervous

Please pray for Kaitlyn!  We are scheduled to return to Vanderbilt March 1 for her confirmation glucose test.  Kaitlyn is getting more and more nervous as the date gets closer.  I don't blame her.  We can withdraw from the study at any time, and I gave her that option.  She wants to go.  And she doesn't.  I so understand.  Realistically, we know she's progressing toward type 1, but a true diagnosis is so much scarier.  Taking supplements every day has been a constant reminder of where she is.  That part has hurt.  Yet, if they help, taking a few supplements and avoiding D for a little longer is worth it.  Maybe the test will show how much they are helping.  Then maybe they won't.  Once that 2 hour number shows over 200, there is no turning back.  We want to know, and we want to run away and hide our heads in the sand a little longer.  At home, her fasting and 2 hour after meal numbers are normal.  If she tests normal, I'll be so glad we went!  I'm also curious as to whether the antibodies have improved.  I want to think positive.  But then she thinks she's been low a couple times lately.  On Sunday, she felt "low" and was 79 a few minutes later when we could test.  I thought she might be hungry, but she said she knew because she felt it in her thighs not her stomach.  I think lows can be another predictive sign of not regulating glucose properly.  So, please take a moment and say a prayer for Kaitlyn please!  It's a lot to face for a 13 year old.  For anyone.

Oh, and Ben ran a high fever Friday and Saturday.  Today, Ryan came home with a stomach bug that's going through the middle school.  Please pray they keep their germs to themselves! Thanks! :)

Two days of Omnipod

Wow!  Things were so crazy around Christmas with Kaitlyn and Andrew switching insulins that I can't find any mention that we bought an Omnipod!   It's a tubeless pump that holds the insulin right at the site so there is no cord and no pump to keep in your pocket.  You can see more here:  http://www.myomnipod.com/about-omnipod/  We took advantage of the out of pocket purchase program for several reasons.  First, Andrew's Ping goes out of warranty the end of this year.  However, several new pumps should be coming out in the next year or so and may be worth waiting on.  The Omnipod comes with a two year guarantee, so it helps bridge the gap.  Andrew didn't think he'd like the Omnipod, but he is interested in a potential tubeless pump, so it made sense to give one a try before committing for four years.  Last, he wants to play football in the Fall and you can't do that with a traditional pump on.  I know the textbook answer is to disconnect and reconnect and bolus as needed.  Realistically, where can you put a site that you can easily connect & disconnect with all those pads on?  Shots or the omnipod seem like the only choices for football.

The Cut the Cord program said it ended in 2011, so we bought it the very end of December.  Andrew said he wanted to do this, but he was in no hurry to get started once it got here.  We had plenty of others things to do around Christmas, so finally we scheduled it for this weekend.  Friday night, he counted, "One, two, .... (desparate) I really don't want to do this!"  He was so scared that I wanted to cave too.  A younger child at school who uses the pod told him that it really hurt when it went in.  We had numbed the area since he was so nervous.  We'll run out the pump supplies before we can reorder if we don't use at least a couple weeks worth of pods.  So, I told him he had to.  Afterwards, he said that he didn't feel a thing!  I think I was as relieved as he was.

Tonight, I asked him to give the Omnipod a grade.  B+.  I asked him to grade the Ping.  B-.  He admitted that he likes it much more than he thought he would.  He intended to wear it only during the two weeks I'm insisting on now and during football.  He thinks he might just switch.  There are pros and cons to both, which I'll write about another time.  He has to take insulin, but he can choose how it gets there.  For today, it's through the Omnipod!

I will tell one story before signing off.  Andrew went to a roller skating party today.  One of his friends was having a hard time staying up on his skates.  Andrew came over and handed me Dex saying, "Here. I'm going to go fall down so Friend doesn't feel so bad." and took off before I could warn him not to break an arm or something.  We really don't worry much about the pump, but it was nice to have the feeling that if something happens to it, we'll just peel it off and put on a new one! 

He Just Looks Like A Normal Boy To Me

You've been there since the beginning of this journey.
Yet, you commented yesterday that Andrew
Seems like a normal boy from your point of view.
Thank you.  I think.
I'm glad that's all you see.
I've worked hard for that.
I want you to see Andrew.
His giftedness.  His personality.  Who he is.
He isn't diabetes.
I don't want people to fear having him over.
I don't want coaches to be afraid to have him on his team.
So, I'll tell you that it is all fine.
We check his blood sugar and treat and say that he can do anything.
I'm not lying.
He can.  I'll move heaven and earth to be sure he can.
We still live life, full of joy, just like anyone else.
I'm glad you don't see all the things
We do just to keep him alive.
I'm glad you don't see him when an injection hurts more than normal.
You didn't see him look at me yesterday after putting a site in his leg
And simply say, "I wish I didn't have diabetes."
Did you see the tear slip from his eye
At the party on New Year's Eve
When his blood sugar was so low
That he could only sit with his dad
And hope he would feel better soon?
I'm glad you don't know that we were up
for an hour and a half Friday night.
He played basketball for the first time since Christmas.
It must have made him more sensitive to insulin.
We turned down his basal.
But he still went low.  And stayed low.
I got it to 74 & crawled back into bed.  Dex buzzed & Gene went in.
He was low again.
At six, I tiptoed into his room.  The covers were over his head.
Dex read ??? instead of a number.
Why was my first thought, "Is he dead in bed?"
I hated to take his blood sugar & wake him up.
It's hard to go back to sleep if woken at 6 am on Saturday morning.
So, I touched him, just to see if he was breathing.
He was.  So I said a prayer and let him sleep.
I'm glad you don't see his face change color
When his blood sugar is high or low.
That you don't know how hard his body fights this disease.
I'm glad that you watch him on the ballfield
And see a normal boy.
Only he and I should wonder
Is his blood sugar okay?
Is he tired like all the other boys?
Or is it something more serious?
Does he need sugar now?  Or insulin?
Is that fatigue an adrenaline high?
Or did the site come lose and he's on the way to DKA?
I'm glad you don't see him when he is sick.
When ketones must be checked often
And a stomach virus can easily mean an ER trip.
I don't want you to think these things.
Yes, they are a part of our lives.
But Andrew is more than these things.
He loves baseball, football, and basketball.
He can play basketball on a ripstik.
He entertains his little brother.
He is the sportsman for his school news network.
He gives up his P.E. time to help a special needs buddy play.
And he loves every minute of it.
He loves the Lord.
He makes me laugh everyday.
So, thank you, Friend.
I'm glad he looks normal to you.
We must give Diabetes its due respect.
After that, you're right.  He is just a normal boy.

The Plan For Kaitlyn

I can't tell you how much I appreciate the staff of Trialnet.  They are so kind and willing to listen and explain.  I wasn't excited about taking Kaitlyn back to be retested, but I'm also usually one to follow doctor's orders, especially as far as my kids are concerned.  They asked if I'd like to talk to the Doctor, and I really did.  He called yesterday (for free!) and patiently answered my questions.  The primary advantage to a diagnosis before insulin would be if she were to enroll in a study.  What if one of the drugs does halt the disease progression?  She would so benefit from halting the disease right now.  However, there is only one available, and the Lord has been good to give me no doubt that it isn't for us.  The Doctor addressed some of my safety concerns, but some of it comes down to a gut level decision, and he respected that.  He told me I could just watch her, and it is fine to wait and bring her back when Andrew goes again on March 1.  I explained that I was a math person and needed quantifying of "watch her".  We are going to check 2-3 times a week after the highest carb load meal of the day.  If we start to see sporadic high numbers, we will switch to 4 times a day - before each meal and 2 hours after dinner.  Obviously, if she had symptoms or if the numbers go up, I'll know to call.  I want to support her as soon as she needs insulin so that she can keep a strong honeymoon going through these growing years.  I'm not waiting because I'm in denial.  It just wasn't in her best interest to go back now.

The Doctor wasn't excited about my supplements.  He didn't think they'd harm her though.  The DHA had even been tested by Trialnet & given to mothers prenatally to see if it impacted T1D in the children.  It didn't.  I suppose that was supposed to have discouraged me, but I heard, "Even the doctors thought there might be something to it!"  And I didn't hear any concern that it wasn't safe.  He did say to be careful because you can't vouch for the purity in supplements.  I then talked to a pharmacist at a local natural drug store.  She helped me pick out some DHA/EPA with extra Vitamin D for Kaitlyn.  We started her on that last night and the Glucocare this morning.  We will continue with a multivitamin.  I didn't get warm vibes from either the doctor or the pharmacist on the ATP, so for now, this is all we are going to do.

Kaitlyn says she's fine, and I believe her.  When this first happened, I knew I was obsessing because I would go to bed at peace, but wake up feeling like I'd been working hard and dreaming about diabetes.  One of those days, Kaitlyn told me of one her dreams, which was more of a happy working out of school issues.  She is her same happy self.  We are still hoping insulin and highs and lows are a long way off.  She told me awhile ago that she didn't want diabetes, but that she wasn't afraid of it.  Later, she asked, "Mom, what if I do get diabetes?"  Pause.  "We'll probably both cry.  Then we'll take care of it.  You'll check your blood sugar and take insulin just like Andrew.  God will still be God, and you will still be you.  We'll be okay."  She seemed content.  She checked her blood sugar twice today.  We did a fasting because she woke up with a sore throat.  BG 90.  After breakfast and a shower, she said, "Mom, I feel weak.  Could I be low from the Glucocare?"  BG 86.  She felt fine the rest of the day.  She tried testing on her pinky today, something Andrew has never done.  She went and told him that he should really try it because she thought it hurt less.  If nothing else, I'm thankful for that she has had normal blood sugars for six years longer than Andrew.  I still hope it will be even more.

Diagram of Type 1 Diabetes Progression

This diagram demonstrates the pre-clinical diabetes stage that Kaitlyn is in.  She is losing beta cells, but not
to the point that she isn't functioning well.  Beta cell function levels a bit at diagnosis, but usually bottoms
out at virtually 0% insulin prodution.  New diagnosis studies try to treat patients & maintain their beta cells.
Prevention trials try to find patients in the pre-clinical stage.  Prevention trials are new, because before Trialnet
and similar trials, we didn't know how to find patients in the pre-clinical stage.  This graph is from a RETAIN website. 
It is a drug that may be available to Kaitlyn in a few months, so I'm trying to learn more about it.
http://www.retainstudy.org/new-onset-type-1-diabetes