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!!!!