Easier?

The first diaversary was challenging, especially looking at the things I posted leading up to Sugar Bear's diagnosis.  This year, year 2, totally different but still challenging.

I haven't written anything in months, not because I don't want to but keeping two children alive during the holidays isn't as straightforward as the rest of the year.  Halloween, Thanksgiving, Christmas are all "food" celebrations.  Has this journey gotten "easier"?  I get asked that periodically.  Not really, is how I want to honestly answer.  Have you ever been told that if you put a live frog in a pot of boiling water they immediately jump out but if you put him in a cold pot of water and slowly bring it to a boil he'll stay until he dies? Yup, I think this pot of slightly warm water is soooo relaxing.

I received a Dr. Who weeping angel t-shirt for Christmas.  It got me thinking.  Type 1 is a lot like a weeping angel, as long as you don't blink it doesn't seem scary.  I know that's a bit of a stretch but it's how my brain works.  So I wore that tee under my sweater on the second diavresary of Sugar Bear's diagnosis.  It made sense to me.

So here I sit, two years later, in my quiet before work contemplating where we've come on our journey.  I'm thankful for insulin.  I can't imagine how awful life was for a family before that discovery when two years would have been the max that someone would suffer with this disease.  And the treatment before insulin was starvation and whiskey (to take the pain away).  I count my blessings.  But it doesn't mean I've made best buddies with diabetes.  It doesn't mean it's any easier.  It's just always "new normals".  The Dexcom addition to this journey has eased anxieties, and that's wonderful but we still have worries they just don't make me cry as easily.  I think I've hardened a little to the monster in the room.  My family and I can have conversations of what would we do if one of the boys wasn't waking up or worse when we walk into their room.  We can "joke" about highs and lows.  Both boys are gaining in independence of their own care.  But it's weird to ask "what is your pain level" when their Dexcom has been bumped and is hurting to gauge whether it needs to come out of their body.  It's weird to constantly worry whether the sticky low they're having requires glucagon or a trip to the hospital.  It's odd to be an organ for not just one child but two. 

So I made my annual trip to the Children's Hospital to deliver treat bags for the kids on the third floor, treats to the doctors and nurses in the ER, the PICU, and 3rd floor as well as a special gift to the ER doctor that I consider Sugar Bear's angel.  She's the one that figured out what was going on.  She's the one that gave the diagnosis.  She's the one that held me as I weeped.  I'll never forget.  Because before her we'd had two misdiagnoses that could have cost him his life.  Because of her, he's here.

No, it's not easier but we know how to live and that makes it special.

Just Weather

Our hometown JDRF walk was yesterday morning.  We had a new venue.  Previously it had been at a park with lots of scenery, yesterday's walk started at the ball field downtown.  Drago has been not well for two months.  We have a GI appointment in a couple weeks that can't come soon enough.  Anyway, he missed school Thursday and Friday with more than "normal" sickness.  It seems like he has a stomach bug on top of whatever else is going on.  So of course he wasn't going to be participating in the walk.  And then Friday Sugar Bear also wasn't feeling good.  So our team dwindled down to just me.  (We didn't have any family or friends signed up this time to walk with us.).
I woke yesterday morning to temps in the mid 40s, windy, overcast, and a light rain.  I layered on two long sleeve shirts with a third shirt on top, our team shirt.  Hoping I'd stay warm but not too warm.  I headed out at 7:54am and got to the venue at 8, did I mention it was literally in my backyard.  Found a parking space easily and went to the registration window to turn in one more donation to make our team total $530.  My goal for the team was a thousand.  It was just me and hubby fundraising.  Next time I might make the VIP goal.  I hope so.  Every bit helps my boys, and they were in the best hands with Daddy while I weathered the walk.  After registering I entered the stadium, picked up the four t-shirt tickets and went to the window to get my family their one walk shirts and to pick up the boys special blue shirts for having Type 1.  And who should I see at the window?  Drago's psychologist was volunteering with JDRF.  It warmed my heart to see her.  She has Type 1 too and has been amazing with Drago.  After t-shirts I walked around and checked out the vendors and snacks.  I filled my JDRF cup with half coffee and half hot chocolate, grabbed a banana and talked to the vendors.  One thing I've noticed going to events like these is there is always that one question, how are you connected.  Before Drago's diagnosis I was the "newly" diagnosed last year.  This year there is this look that people get when they find out I have two Type 1s.  It's hard to describe.  It's a mix of shock, surprise, pity, and genuine concern.  I had one vendor say that we were part of the "newly diagnosed" again and how rare that was.  And there is always the inevitable "and how are you doing" question.  And if I'm talking to a family with more than one child but only one T1 there is the fear behind the eyes that this could happen to them too.  Anyway, I made my way through Lilly's, TSlim, animas ping/vibe, Omnipod, and of course Dexcom.  Not a lot of new information considering we've been at this almost two years.  Even though we don't pump we have been learning about them for quite some time.  I also saw some Kirkland gummies which warmed my heart.  Those came directly from my work, Costco. I then made my way to find a seat since it was around 8:45 and the walk would start at
9.  I listened to the announcements and the gratitude for the sponsors.
And then it was time.  I headed for the JDRF arch with hundreds of other people out from the sheltering roof to walk in the elements. People of all ages, babies to great grandparents.  Strollers to wheelchairs.  Everyone affected in some way by Type 1.  Everyone wanting a cure.  The first quarter of the walk was in with the buildings and the streets.  A light rain falling, we made our way across the bridge of murky water to a park.  The grass still green even in the dreary cloud ridden day.  For me it was quiet.  I could walk my own pace.  I had no one to wait for, no one to catch up to.  I walked hurriedly.  It was cold and my thoughts were on my boys at home.  In the park after we rounded the bend to come back along the river we were met with The Mile of Hope.  Photos of those with Type 1 dotted the banks, and these were the ones that raised $200 by a specific date.  I knew it was not everyone.  But it was my boys, one of the boys Sugar Bear met at camp over the summer, newly met families because of this disease.  The youngest pictured was 17 months old and the oldest was 55.  This part of the walk always makes me emotional.  This time I also noticed the other signs with two T1s.  And the rain started to come down harder and the wind picked up and we were walking into it.  At first I picked up my pace but then I came to a woman pushing a stroller.  A 10 month old baby girl inside.  The stroller was getting soaked.  I opened my umbrella and did my best to keep the water off the stroller while talking to the woman.  She wasn't the Mom,  the Mom was walking behind us.  She was a cousin and they had numerous family with T1.  They've been walking for 12 years.  They travelled five hours to support their family.  Back into the buildings with the rain beating at us and then And then we were back under the roof.  I was soaked.  I was cold.  I was contemplative.  I searched out a bathroom to dry off a bit.  I ran into our dietician and then one of the Moms I've met on this journey.  I got the biggest, sweetest hug.  I needed it.  I found a seat and listened to the winners of the shirt designs.  I searched out a Mom I was encouraged to meet who's daughter has been battling this disease for 7 years and is Drago's age.  I was amazed at the size of her team.  Hard to miss since they were all in bright yellow.  She informed me that they have great support.  They make the day all about her daughter.  Her in-laws fly in from out of state to walk with them.  It was amazing.  And then I went home.
I showed the boys all the goodies I picked up at the walk.  Sugar Bear immediately put on his sunglasses.  Sunglasses on a raining, overcast, stormy day.  Both were excited about the gummies and fig bars I'd snatched for them.  I don't think I was home more than 15 minutes before Drago threw up.  Poor boy.  And then I was on the phone with the endocrinologist formulating a plan to make it okay through this storm.  One step at a time.  Warm and dry I shrugged my shoulders and willingly walked back into it.

Life Support

I have two sons.  They both are on life support.  Without insulin shots they would die.  With too much insulin they could die.  It's a balance.

I learned recently that a teenage T1D girl died in the hospital.  The doctors and nurses thought they had her stabilized.  She had arrived in DKA, which can happen at anytime, due to high blood sugars and not taking her insulin.  She passed away from a seizure while talking and laughing with her family.  In a hospital.  Surrounded by nurses and doctors.

When I used to think of life support before Type 1 entered our lives I'd see images like my Great Grandmother, in the hospital hooked up to machines.  Tubes and wires everywhere.  Tools to keep her alive.

Type 1s have tubes, and wires, and machines to keep them alive.  My boys right now "only" have a continuous glucose monitor, Dexcom, attached to their body, but our family jokingly refers to it as going cyborg.  One might try to say it's not really necessary for the life support, but they would be wrong.  In the past couple of weeks it has saved us from using glucagon at least three times, two on the oldest and once for the youngest.  It is a game changer.

At the endocronologist appointment yesterday we got to download the data with the boys doctor.  The CGM is helping.  Both boys had good A1cs.  Drago's stayed the same even though he has been pretty sick the last few weeks.  And Sugar Bear's went down!

Both boys had to have labs drawn.  Sugar Bear's lab was to check his thyroid levels.  The good news is he is fine!  His levels came back to normal.  But the Endo did tell us about 30% of T1s end up with thyroid disease.  We'll keep monitoring.  Drago's lab was for celiac.  He's been having a lot of issues that point to a gastro issue.  We don't have the results back on that yet.

My emotions have been all over the place.  I definitely need a recharge, but it's not easy to do.

I'm just grateful every moment of every day for life support.

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straight to the point

A very brief and straight to the point post about having two Type 1 sons; diabetes sucks!  It just does. Sometimes it's just an annoying tag along but lately it is being obnoxious.  Too many high blood sugars since the teen went back to school and a germ found him.  I hate this disease, love my boys, and pray for a cure with every fiber of my being.

39

A little education.  Sugar Bear's blood glucose target range is 80-150 (so is Drago's).  Anything under 80 is considered a low and must be treated accordingly.  Sugar Bear had three seizures last year in the 60s-70s.  He is now developing hypoglycemia (low blood sugar) unawareness.  He doesn't feel his lows.  The lowest he has been has been 38.  That is a super scary low.  Severe lows, anything under 55, is dramatically affecting the body.  The body's organs can shut down.  Seizures, coma, death are a very real concern at those levels.  Some lows are what we call "sticky lows" which are a challenge to bring back up in range.  You can treat with a fast acting 15g of carbs like juice, wait fifteen and have it drop or not budge.  Recently we have had more of these episodes with Sugar Bear.  They are scary and exhausting.  And you have to stay vigilant even if it is 3am and all you want to do is sleep.  A tool in the diabetes world that is truly a life saver is a continuous glucose monitor (CGM) one brand being the Dexcom.  A CGM is attached to the body and measures the sugar in the interstial fluid in between the fat layers in the skin.  It is not as accurate as a finger blood stick so we still have to do those.  But the CGM will give trends with an arrow.  So if you are dropping or dropping fast the arrows will show that.  It can help you head off a severe low.  It can literally save a life.

Now the rant.  When Drago was diagnosed he had a lot of anxiety associated with going low so we and his counsellor and doctors felt a CGM would help.  We put in the request, sent in his numbers (60 days worth--every day since diagnosis).  At that point he'd never had a low lower than 60.  And he feels his lows.  His Dexcom was approved immediately and we put it on him May 27th.  On May 28th we called the endo to start the process for Sugar Bear to get one.  Somehow the paperwork got "lost" between the endo and the intermediary for insurance and Dexcom.  We surmise that somehow the intermediary company thought it was a request for the same child and tossed the paperwork.  By the time we figured this all out it was the end of June.  We resent the paperwork but somehow the insurance request didn't get to them until July at which point their criteria for approving a CGM had changed.  Sugar Bear's logs of lows (more and lower than Drago's) were not sufficient for an approval.  The letter we received stated he had not had enough severe lows or hypoglycemic unawareness, that it was unnecessary!  So now we are in the appeal process.  Sugar Bear did a week long trial wearing a Dexcom and yesterday our nurse informed us the Dex showed four severe lows (below 50) for the week.  It is weird that that made us "happy".  That that might be enough to get a tool that could help us keep our son alive and healthy.  It makes me so angry that we have to jump through these hoops.  That I have to be an angry mama bear protecting my cub from an insurance company that has never even met us in person let alone knows what my boys go through.  I'm ticked. It is not right that our insurance companies can dictate what medical procedures and/or devices can be used even though they are recommended by our doctors, doctors that have seen us, doctors that personally know our health issues.  Something needs to change.  I worry about my boys when they are grown and on their own having to continually fight not just to stay alive but to make their insurance companies understand the need for their life saving medicines and devices.  Healthcare in our country needs an overhaul.  It is a broken system that just seems to get even more broken.  Maybe we should just run away to Ireland or another country like it, where insulin is freely given and devices are approved more readily....where life is important, not the almighty dollar.  So we'll keep on testing and hoping we're in time, with a juice box readily on hand.

Normal

I am not strong.  Really, I'm not.  I can cry at the drop of a hat.  Regularly I feel like "I just can't."  Many, many things overwhelm me.  And staying positive sometimes is just so hard.  But I put one foot in front of the other.  I allow myself some good cries.  I look for beauty and understanding, the kind that makes me want to cry from joy.  I keep going even when I'm declaring I can't because sometimes, most times that is the only choice really.

It's been such a busy month.  The boys went to diabetes camp. Sugar Bear was extremely reluctant to go but ended up having a blast.  He made a few friends, Ryan being his best bud.  The older kids thought he was cool.  The counsellors loved him.  And the doc and nurse said he didn't really have homesickness like the other new boys in his cabin.  And the award he got at the end of the week was "Go With The Flow".  He had a cabin of 7 other boys and he said there were lots of joking and goofing around.  He did lots of activities, including playing Gaga, color wars, low ropes, wall climbing, tie dying, etc....he did not do the horse back riding, anything super messy like slip and slide or mud tag, or BB guns or archery.  One of his favorite jokes he told me from the week was "What are the tallest buildings in the world?  Libraries because they have many stories."  Of course now if you ask him if he's going back he says no.  When we picked him up from camp we asked him what it was like to have everyone at camp have Type 1 or really know about it and he said "I felt normal."  Sugar Bear's biggest hesitation with going and why he wouldn't even hug me when we dropped him off is that the shots were going to be with syringes instead of the pens we use at home.  But he did it.  He actually did a majority of his shots during the week on his own (with supervision of course) and did all his finger pokes.  The only thing he's not doing any more is feeling his lows.  Not once did he feel them at camp.  This is why we want a Dexcom for him.  Anyway, I'm in touch with some of the Moms of the boys in Sugar Bear's cabin and hope to get him together with the kids he met.

I think Drago enjoyed the activities at camp and the counsellors and his Doctor had high praises for him.  He had a bully and a couple of other not so nice kids in his cabin that definitely colored the week for him.  He got "Best Newbie" award.  He didn't feel great at camp because he is still in the honeymoon stage of his diagnosis so had a lot of lows to deal with.  He didn't do horseback riding because he had to have jeans and I of course forgot those.  I know he was also a little irritated that Sugar Bear seemed to make friends with the older kids easily.  He's not sure if he wants to go back but also realizes how difficult it would be to go to a different camp where all of his care would rest on him.  He said he doesn't see how he could do Camp Kern right now.  He did great with his care at camp.  The doc said he did all of his shots and even used his belly!  (Both boys have refused to use the belly with me.). The Dexcom was a huge help but it fell off on Thursday and they had to put a new one on.  Drago needed help and the placement wasn't good.  We had to take it off on Wednesday when he got home due to it hurting (a day early) and when we removed it there was a lot of ick.  So we took a break for the moment on the Dexcom.  And of course he got sick so he's not the easiest to deal with when sick.  One of the things that he has been doing since camp is doing something we don't necessarily agree with with his diabetes care only to have him tell us "I got this." Or "Well this is how so and so did it at camp."  Definitely fostered a lot more independence (for both). 


For us it was a much needed break.  During the week we realized that the only time we've had together alone since Sugar Bear's diagnosis were the hours My in-laws gave us for dinners when they were in town.  A total of maybe 6 to 8 hours.  So camp week was very necessary for us. We both slept, a lot!  We texted things besides blood sugar numbers, carbs, and insulin doses to each other.  Although early in the week Hubby was trying to text me how much money we had on the card and his phone autocorrected card to carbs.  So even the phone was missing the boys.  Lol. It was hard to go from 24/7 care to not even knowing anything at all about how they were doing.  But we enjoyed ourselves.  We watched movies, went out to eat once, went and saw some artwork, visited with friends, and of course I worked all week.  I also felt a little guilty from enjoying our break knowing the boys will never have one from the constant care unless there is a cure.  And of course we slept.

Overall, I think it was really good for all of us!  Thanks so much to my in-laws who made it all possible.  The smile on Sugar Bear's face when we picked him up on Saturday was amazing.  He really bloomed at camp.  And it was a space I can feel comfortable knowing they were cared for.  I even got great logs for both so I did get to see how their blood sugars were and how many carbs they ate and how much insulin they used and treatments for highs and lows.   Sugar Bear's comment that he felt normal brought tears to my eyes and pretty much summed up the week for me. 

Since then it's back to the grind.  Back to the balancing juggling act that is our crazy lives.  We took the boys to the drive in to see Minions and Inside Out.  We've visited with friends, attended an engagement party, and done the typical kinds of things people do in the summer.  
And we did a 7 day trial Dexcom on Sugar Bear because our insurance denied coverage for one for him.  Don't get me started on that.  Let's just say I'm not very happy with the hoops for him.   We had to go to the hospital to have our nurse put it on (even though I do Drago's all the time).  The insertion hurt and bled and then fell off on the walk to the car.  So back in for another insertion.  Then it wouldn't start up.  Took three stop sensors and starts when I called the nurse and found out the transmitter and receiver had different numbers.  Finally got it working.  It was a frustrating and stress filled day so we went for ice cream.  That helped.  Anyway, having the Dex on both boys was nice.  It relieved some of my anxiety.  It didn't last nearly long enough.  Last night we dealt with hours of lows with Sugar Bear.  It was scary and a Dex could have really helped.

So now we are gearing up for Sugar Bear's homeschool assessment and the beginning of a new school year for both.  

Time to Fly

We dropped the boys off at Type 1 Diabetes Camp on Sunday. They will be there until Saturday.  I'm not going to lie, this was one of the hardest things I've had to do recently and yes, I cried off and on on the way home, especially seeing their life saving kits in the van minus them.  Surreal.  Those kits go everywhere, they are always attached to them or within reach.  We never leave the house without them.  They literally save their lives daily.  I know that sounds extreme but it is true.  Those kits have insulin and without it they would die.  Those kits have fast acting sugar and without it they would die.  Those kits are the tools that balance their lives.  And they don't have them while at camp.  Instead we are relying on counsellors and nurses and doctor's to take the place of us and those kits so the boys can have a week "off".  They'll never really get a break so this is about as close to one that they can have--no kits attached to them.  Surrounded by people and kids that know what they are going through.

Sugar Bear didn't want to go.  He's never really been away from home without one of us with him.  Yes, Drago is there too but he's with the older kids.  Plus only his Dad, his brother, my Mom, and me have ever given him his shots and tested his blood sugar.  He's the one I'm worrying about.  I'm sure he's in capable hands but his lows recently have been low lows (39, 47) and he's not really feeling them and then the fact he had three focal seizures last year and the increased activity.....well, makes my stomach tie in knots.  Had we gotten the Dexcom in time I might not feel this anxious.  I'm not terribly worried about Drago.  Drago was excited to go.  

The silver lining is that I'm already more rested and have been able to connect with my husband without Type 1 rearing it's ugly head.  I'm working through emotions I haven't had a chance to address since Sugar Bear was diagnosed.  It's a growing experience for all of us.  The mama bird pushed her babies out of the nest hoping they will fly.