Intuition

The past month has been a bit of a long one.  We have had numerous problems with Lovebug's blood sugar numbers.  More lows then I care to be handling, followed my more high's.  It's really hard to watch her go through that. She is exhausted when she gets home from school and usually falls asleep before dinner.  I have tried and tried to get her numbers  back in range, but to no avail.

We have changed basal rates, decreased and increased. We have raised and lowered carb ratio's. Given temp basal's and just plain not bolused for food at all.   Lately, we have been using the Combo Bolus.  We do a combo bolus if she 150 or below and if she is above 150 we just do a normal bolus.

Thankfully this seems to be working, so far anyway.  Every time I think we have figured it out, it stops working.  We think we know what MIGHT be causing the crazy numbers but won't have an answer for a while on that. Needless to say over Thanksgiving break we only had 2 lows the whole weekend. (rather then numerous ones in a day)  I am starting be be a little optimistic that maybe we have turned a corner.

When I dropped Lovebug off at school on Monday it was pretty normal. Except that she came in a little late because she had a doctors appointment.  We checked in at the office and talked with our wonderful secretary whom we will call Mrs R.  Mrs R asked how Lovebug's numbers had been over the weekend and it was nice to say they had been pretty good. A little high but at least we weren't dealing with all the lows.  After our brief conversation I walked her down to her classroom where all the kids saw her and came running to the door to greet Lovebug. (just warms my heart to see how excited they were to see her!)  My thought that we would quietly sneak into class and not interrupt was foiled.  Lovebug's teacher wasn't concerned and Lovebug walked over and gave her a big hug.  I walked away with a full hear knowing my little girl is in great hands.

Around lunch time I got the email from Mrs R.  Lovebug's blood sugar was 175.  There a couple exclamation points at the end of "Was send to lunch!!"  I could tell Mrs R was relieved Lovebug wasn't low, again.  About an hour later I picked up my cell phone and realized I had a missed call. It was Mrs R. I forgot to turn my phone ringer back on after we had left the doctors office.

I listed to the voice mail and called her back.  She told me she was happy Lovebug was 175 before lunch. She dosed her but said she just "had a feeling" and told Lovebug to come back after recess so she could re-test her.  When Lovebug came back to get retested, she was 62 and double arrows down on Dexie!!  Holy intuition!! I was SO thankful!

Now I know I have talked about Lovebug's school before but I just have to say it again. They are WONDERFUL.  They continually go above and beyond and I am so grateful.  You can tell that they genuinely care about Lovebug and her diabetes. I mean really, how many secretaries would tell a kid to come back and get tested later because THEY had a feeling about her blood sugar? I thought my hubby and I were they only ones who got those gut feelings!  For those of you who don't have a child with Type 1 it takes a bit to get a "feeling" when they are low or when something is off. You really have to be "in tune" with them and know them well.  That right there is just amazing to me. They have taken the time to really get to know Lovebug and watch for those signals. Then, just every once a while, follow a intuition.

Won't You Help?

A while back my husband was trying to think of something we could do to help spread diabetes awareness and education. Specifically for those living in other countries less fortunate then ours.  Talking about it made me think of my good friend Wendy who is very passionate about  Life for a Child.

I had kinda put the idea to the side for a while.  You know how life can get in the way.  Well, Thursday night my hubby and I were listening to DSMA Live and heard Wendy talk about Life for a Child (among other things!).  Neither my husband or I knew that Life for Child was tied to the Big Blue Test.

Knowing that I HAD to share this with all of you.

The Big Blue Test which is sponsored by the Diabetes Hands Foundation is donating money to Life for a Child just for doing the Big Blue Test!  That means that YOU can help us help a child in need.

Did you know that in many developing countries, children with diabetes suffer because insulin and other diabetes supplies are not affordable or sometimes not even available?

Life for a Child works with diabetes centers to provide clinical care and diabetes education that the children in their care need to stay alive.  The program works to provide: sufficient insulin and syringes, blood glucose monitoring facilities, clinical care, A1c testing, and diabetes education as well as a few other things. They aim to raise awareness of the plight of children with diabetes and encourages governments to establish appropriate care to safe guard the future of the children with diabetes.

Now YOUR part!

1. Participate in the Big Blue Test! - go to bigbluetest.org to find out how!  It's SO easy! and EACH test = a life saving donation to Life for Child.

2. Go my good friend Wendy's blog Candy Hearts and Click on the Life for a Child tab at the top of the page. Find something you like and purchase for a yourself or someone you love.  By purchasing from those businesses they will donate a portion of  the sales of that product to Life for A Child.

3. You can also donate online directly to Life for a Child at www.lifeforachild.org or help by purchasing World Diabetes Day merchandise from www.worlddiabetesday.org

Normally I would say to do this for Lovebug and Princess but in this case do it for a child less fortunate so they can get the life saving insulin that they need to live. So no child has to die because they can't access insulin.

Bedtime Blues

Last night we had a weak signal and Lost sensor error with Princess's CGM.  It isn't uncommon for us to receive this alarm when it's time to change the sensor.  It had been six days and I knew we needed to change it.  

The thing was that Princess was just lying on the couch and didn't look good.  My first thought went to diabetes. (of course)  Is she low?  Is she getting sick?  Is her blood sugar really high?  I got her meter out to check her blood sugar and she was 132. Not bad but with out the sensor I didn't know if she looked that way because her blood sugar was dropping fast or if she was just tired.  She wasn't telling me anything either.  That didn't make me feel any better that she wouldn't tell me.  

I thought about trying to start the CGM back up and see if we could get another night from it so I didn't have to change it until the morning.  I didn't want to but I tried, with no success.  I decided that it would be better if I just put a new sensor in. Better to go just a couple hours without the CGM rather then the entire night, especially considering how she was acting. 

While we were having "issues" with Princess's CGM Lovebug was low.  Dexie was telling me she was 70 with arrow straight down.  Normally I wouldn't worry about this, we would treat it and wait for it to go back up.  Considering it was right before bed, I was a little worried. (and wondering if this was what the whole night was going to look like)  Just about 15 minutes later when I was getting ready to check her again, Dexie beeped.  Dexie was saying she was 58 with arrow straight down still.  What in the world?  We re-checked her and she was 102.  She had gone up from the 70 she was before but Dexie just hadn't "caught" up yet.  We calibrated Dexie and sent Lovebug up to bed, knowing we would be up to check on her in a few when Princess was ready for bed.  

After we got the girls tucked into bed, I almost got teary eyed.  I admit, I was worried. Worried sick for both of them. I had made my hubby check Lovebug a few more times then I normally would because of it too.  Normally I am not so "paranoid" and don't worry quite so much, but my thoughts went back to what I had seen earlier that morning. Another parent living one of my worst nightmares.  Another young life lost to Diabetes.  

Daniella Meads-Barlow is her name.  She had Type 1 Diabetes and passed away in her sleep the morning of November 8th.  This is the reality of the disease my girls (heck, our whole family) live with.  I put my girls to bed each night knowing that there is a chance they may not wake up in the morning. 

Theses kids don't die because their parents neglected their diabetes or because they had "bad control".  It is just Type 1.  It's what it does. It is unpredictable.  It changes from one moment to the next, from one day to the next.  The JDRF just released a startling statistic. 1 in 20 (kids and adults) will die from low blood sugar. This is what happened to Daniella. 

This makes me cry. It makes it hard for me to sleep at night. It makes me more determined then ever to fight for a cure and to spread awareness of this disease.  But last night, it just made me want to hug my girls and hold them even closer.  

Yes, you could.

"I could NEVER do that!"

"I really don't know how you do it."

Those are phrases I commonly hear from people after learning that I have children with Type 1 Diabetes.

I said the same thing once.  Before I had children with Type 1.  Before Lovebug was diagnosed.  Before Princess was diagnosed.

Truth is you could, if you had to.  When your child's life is at stake, you will do anything for them.  It is amazing how "strong" you become when you see your child face something like this. You become a "super hero" of sorts for them.  You help the fight the battle against the "bad guys".

With this disease it isn't a fight that you can "win" and then move on to the next "battle". Cancer, however horrible, is a battle that is won or lost. Usually in a matter of  months or a couple years. Yes, diabetes ultimately is either won or loss, but really it is a battle we wage every day. A moment by moment fight that can change in the blink of an eye.  Believe me, I know.  I have lived it.

For 5 days I saw Lovebug get sick and more sick.  She looked horrible.  I took her to the doctor and in an instant my world was turned upside down when the doctor said....you need to go to the hospital now.  Lovebug has Type1 diabetes and needs to be admitted to the hospital right away.  My knees buckled.  I could barely walk myself out of the office.  I knew it was bad, I just didn't realize how bad until we got to the hospital.

When  our CDE sat us down and started telling me what we were going to have to do for Lovebug each and every day. I remember my head spinning.  It still seems overwhelming when I think back.  I really had no idea what I was really in for, what Lovebug was in for, what our whole family was in for.

Fast forward 2 years later. Over the past year I had met other moms who have children with Type 1 Diabetes. I hear their stories. Some of them have more then one child with Type 1.  I thought the same thing. I could NEVER do that. I couldn't handle it.

Then one Sunday, after a night of tummy aches and just not feeling right, my hubby and I put two and two together.  We didn't believe it at first but just a couple minutes later we knew. The meter counted down 5,4,3,2,1....509.  That quickly our lives were turned upside down, yet again.  We had another child with Type 1 diabetes.  We were devastated. (still are)  But you know what? What we thought was impossible, taking care of  two children with Type 1 diabetes, isn't so impossible.

Is it easy? To be frank, HELL NO.  It is the hardest thing I have EVER had to do. Yet I do it EVERY. SINGLE. DAY.  24/7, 365 days a year with absolutely NO BREAK.  I live and breath this disease.  It is all consuming.  It isn't our life but it is a HUGE part of it.

What I used to think was impossible, really is possible. It is funny how in a moment of weakness you can become so strong.

Yes, you say that you couldn't do this.  But you are wrong. If you had to, you could! I just pray that you never have to.

SMACK!

You know, some days it just feels like Diabetes is smacking you in the face. Over and over again.  Today I got a call from the secretary at Lovebug's school. She is the one, along with her teacher, that takes care of the majority of her diabetes care while she is there.  And I have to add that they do a SPECTACULAR job!

Lovebug has been running high at nigh, again.  No matter what I do her numbers are either too low or too high so I chose the lesser of two evils (in my opinion) and have been letting her stay a little on the high side.  Needless to say she woke up at 194 this morning. That isn't horrible but not good either.  Not when we were waking up with nice numbers like 109.

I bolused her for breakfast and "forgot" to do a combo bolus like we had been doing so she wouldn't go low after she eats (this has been an ongoing thing the past 6 weeks. She will go low and then never spike from her meal.  Then 2 to 3 hours later she is in the 3 or 4 hundreds, once the insulin is all out of her system) So when the secretary called at lunch today, I almost wasn't surprised to hear she was 44.  I didn't think she would be THAT low but with here there is no normal right now.

I, of course, over did it in correcting her.  Normally I would give her 2 maybe 3 glucose tabs to get her back up BUT because she was at school I told the secretary to give her 4.  Sure enough 15 minutes later she calls me back and says that Lovebug is 124 but she was acting a little lethargic so the teacher sent her back down to get checked.  Arrow is still going down on Dexie.  So I told her to still wait until after she eats to bolus her for lunch, just in case is perked up but then is going to go right back down. she did spike a bit and then came right back down. But here is a picture of Dexie.  See what I mean!  And this was actually a "good" day.

This is a daily struggle we have been having and I am really tired of it.  I want Lovebug's numbers to be back to "normal" again.  I hate that her Dexie at the end of the day looks more like mountain peaks and valleys then that nice rather straight line like it should be.  I really hate what diabetes does to her little body.  And to Princess's little body.  Her numbers have been a little better but 8 months into this we are STILL fighting highs, A LOT.

The girls have their 3 month endo check up on Monday and I am DREADING it.  I know just by looking at their numbers and averages on their meters that both girls A1C's will be up.  It's so hard because I know that we can do better but I am just stuggling with keeping them were they should be.

I especially worry about Lovebug and the effects that this has on her school work.  I know she is only in Kindergarten but I want her to be good for optimal learning. And for mine and the teachers sanity!  When Lovebug has crazy blood sugar swings, you have to watch out!  She gets rather moody.  And lately she has been coming home at the end of the day and crashing.  I really hate seeing her like that.

Needless to say diabetes has been "smacking" me in the face lately, and I am TIRED of it!!

This is my Life

It's been almost 8 months since diabetes turned our world upside down, again.  I used to think that the first six months following Lovebug's diagnosis were the hardest of my life but I was wrong. The past six months have been the hardest of my life.(make that 8 months) I have seriously been living in a fog.  It's hard to explain unless you have been there, but I'll see if I can explain a little bit of my life to you.

Diabetes changed EVERYTHING.  I mean EVERYTHING. We can't go anywhere without taking our bag of supplies with us.  Without them it could be life or death.  Nothing is easy for us now. I think about diabetes ALL THE TIME. I always wonder what the girls bg's are. If they are eating something, what are they eating and how many carbohydrates are in it. I wonder what is going to happen next. We can't just send the girls to church, school or even play dates without A LOT of preparation. The Holidays are right around the corner and they make my head spin.

I am always tired.  I  get up each and every night to check their blood sugar. I  check them at 10:30 pm and 2:30 am.  I am up more often if their blood sugars are too high or too low. Needless to say I haven't slept much the past couple years. Think of it as having a newborn that never grows up. Too high and the girls can wake up with ketones and vomiting.  Too low and my girls can die. On top of that you have to worry every night when you put them to bed and hope they wake in the morning.  Kinda takes your breath away.

My head spins when I think about everything I have to do to keep them healthy.  I am a germ aphobe  now, and for good reason.  When it comes to illnesses with the girls, there isn't a small one.  Any of them, even a cold can put them into the hospital. We are constantly counting carbs for everything that they put into their mouths.  They can't just pick up a snack and eat it like most kids.  I have to poke their finger first and then give them insulin to cover the carbs in whatever they are eating.   It's the difference between them feeling good and feeling like crap.

 Site changes every 3 days, provided a site doesn't fall out or go bad earlier then that.  Think of it as getting poked with a large, long needle every 3 days.  It's not pleasant. It doesn't matter what is going on, those sites must be changed. Then there is the smell of insulin on your hands afterwards.  Believe me, insulin smells horrible! Oh yeah, and I almost forgot sensor changes every other site change and on every 7th day. Try keeping track of that! It's not easy.


We have to constantly worry about low blood sugars. Especially with Lovebug.  The CGM's help a lot but they aren't perfect.  Low blood sugars can lead to seizures and death pretty quickly. It is imperative that I am vigilant at all times about what the girls are doing and how they are acting.  Everything effects their blood sugar; excitement, stress, growth spurts; virtually anything you can think of and it will effect their blood sugar.  It can seriously be a headache everyday trying to figure out this "guessing game".  That's exactly what it is, a guessing game, because Type 1 isn't the same from day to day. It's very unpredictable.  It doesn't make sense to me and I can guarantee it's not going to make sense to you.  Yet another reason I have to be constantly on my toes. (and quite often would like to pull my hair out!)

Speaking of activities, try explaining to you child that they can't go to a friends house because their mom isn't comfortable with your "condition"  She is scared and doesn't want the responsibility.  It's hard to tell my girls they can't just go to a play date at a friends house.  Usually I suggest the friend come over here but that's not as much fun.  Lovebug, especially, yearns to be more independent but I struggle with letting her sooner then she needs to be.  She doesn't realize, yet, that she will have to live with Type 1 the rest of her life.

Then there is the toll it takes on the marriage.  A lot of marriages suffer when there is a diagnosis in the family and some don't make it.  Fortunately for us, diabetes has brought my husband and I closer together then I could have imagined. Let me tell you, it has not been easy.  My hubby and I have non-existent date nights.  They just do not happen.  We get very little time together as it is and at the end of the day we are usually pretty exhausted. You know nights away like many of you with "normal" kids get. They don't happen either. Very few people are willing to take 2 children with diabetes and get up in the middle of the night and check their blood sugar.  Those that I have that are willing, we always feel guilty asking.


I don't tell you this so you can feel sorry for us.  I don't want that.  But I do want you to know that having children with Type 1 Diabetes IS a BIG deal.  It's not a walk in the park.  They just don't get insulin and are better. (if only it were that simple).  I just want you to care.  Care to learn about the signs and symptoms. Care enough to help us bring awareness. Care enough to help us fight for a cure.

Awareness

I often find myself wishing that Diabetes Awareness got as much attention as Breast Cancer did last month.  We don't even get a third of the attention that Breast Cancer gets, yet diabetes kills more people.  I wish that
wish that Diabetes could take more of a center stage like Breast Cancer has. Heck, we don't get football players to wear pink (well blue for us), we don't have blue ribbons on packages of food at the grocery store.  We don't have very many celebrities that stand behind us. (we do have a couple and I am VERY thankful for them) We don't have the media behind us in this.  We don't have credit card companies behind us. We don't have many people standing behind us at all and it's sad.

I feel like Type 1 Diabetes has to become an epidemic like Breast Cancer or Autism before we get noticed.  Yes, Type 2 Diabetes is an epidemic and is noticed, a lot.  That is part of the problem!  The general public seems to think my girls are overweight and feed junk food.  NOT the case AT ALL!!  My girls are very healthy and growing girls. There is a lot of misconceptions between Type 1 and Type 2 Diabetes.  It's sad that  people just can't take a small step and distinguish between the two diseases because they are two VERY different diseases.

And did you know that it is becoming an epidemic?  There are 80 people diagnosed with Type 1 diabetes each day.  Diabetes KILLS more people each year then Cancer and AIDS combined!  I would say that is an epidemic, yet there is still no strong awareness campaign for Type 1 Diabetes. Many people don't know the difference between the two, yet they are very different diseases.

Type 1 is an autoimmune disease.  Type 2 is metabolic.  Type 1 diabetic have to have insulin to LIVE.  Type 2 diabetics can typically control their diabetes with diet and exercise. (although, some Type 2 diabetics do need insulin.)

Not knowing the signs and symptoms of Type 1 diabetes can be deadly.  Take this sweet girl Addison Parker.  She was diagnosed on August 12, 2011. She fell into a diabetic coma that day and passed away just 6 short days later on August 18th.  Type 1 is deadly and can come on suddenly, just like it did with Addison. Addison was just 4 years old.

For our girls the symptoms didn't come on so suddenly.  Lovebug's gradually got worse for about 5 days before I took her to the doctor.  Princess got bad over a couple days, we knew what to look for.  We put 2 and 2 together pretty quickly and checked her blood sugar at home to confirm our suspicions.  We could have easily lost either one of them.  Makes me sick to my stomach to think about it.

That leads me to today's Fact:
The Warning Signs of Type 1 Diabetes are:

• Extreme thirst
• Frequent urination
• drowsiness or lethargy
• Increased appetite
• Sudden weight loss
• Sudden vision changes
• Sugar in urine
• Fruity odor on the breath
• Heavy or Labored breathing
• Stupor or unconsciousness

So if anything, make sure you know the signs and symptoms of Type 1 Diabetes.  It could save some you love.  

Type 1 Day and Diabetes Awareness Month

I have been off the blogger radar for too long!  Life had kinda put a stop to having time to blog much in the month of October.  Thankfully I am going to be making room to blog in November and share lots of information about Type 1 Diabetes, our life raising our two Type 1 kiddo's and much more!  I am really looking forward to it!

Starting off the month of November is T1 Day. Today is a day to show support for your fellow T1's.  The girls and I today wore purple in honor of T1 Day. (well, Princess and I wore purple. Lovebug insisted on wearing blue instead!) I know that isn't the "normal" blue you usually think of when you think of diabetes but purple was our JDRF walk team color this year.  Just also happens to be Princess's favorite color!

Don't worry if you didn't show your support today because this month we have Blue Friday's!  This is an initiative to bring awareness about diabetes and the people living with it.  Of course you can also wear blue on  World Diabetes Day on November 14th.  We have t-shirts just for that day. :)

So every day this month in addition to my blog post I will be sharing a fact about Type 1 Diabetes.  Having two children with Type 1 I run across A LOT of misconceptions.

Day 1 Fact: Type 1 Diabetes can happen to ANYONE. It is not necessarily hereditary. This mean is CAN happen to YOU or someone YOU or someone YOU love. ~ we had NO family history of  Type 1 Diabetes.


See you tomorrow!