Welcome

I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Monday, April 30, 2012

Aspartame

This post is mostly about mommy, but I swear it does tie into T1D.

With a child having T1D, it has changed some of the foods that are consumed in this house.  Meals are basically the same as pre diagnosis, other than I try to push protein first before fruits and veggies to keep him stable.  However, for our family, liquids have been the biggest change. 

I know that MANY families serve their kids 2 options, milk or water.  I actually was raised in one of those families.  My husband and I however always also allowed diluted juice with out moderation.  When I say diluted, I mean in 8 oz maybe 1 was juice and the rest water.  It actually tastes pretty gross this way but Johnny liked it so we allowed it, whenever he requested it.  However now that we are diagnosed we were advised by the DOCTORS and NURSES to offer crystal light or other sugar free drinks to avoid the carbs.  I didn't think much of it and started offering crystal light instead of the juice but still diluted just as much.

(Disclaimer... I am not a doctor, I have not done ANY research for facts to back up the rest of this blog.  Take it for what it is, my personal experience and what I concluded from it.)

Having all this Crystal Light (aspartame) in the house it was just a matter of time before I started drinking it.  I typically stay away from it because it causes me to retain water and the last thing a 30 week pregnant mama needs is more swelling in my feet.  However, one of the flavors I bought for Johnny he didn't like, so I thought I will drink it instead of "waste" it.  (This is stupid logic since it is cheaper than the cost of the fruits and veggies that go bad each week in my fridge because I don't get around to eating them.)  So I started having some with dinner as a nice break from water but with out the caffeine of soda or tea.  It's pretty tasty stuff.  So I started drinking it while making dinner too.  Then I would have it starting at lunch, and soon after it was all I drank all day when I was home.  About 5 days into this new habit of mine I was having a very difficult time in my life.  It was during this time that I wrote my previous blog.  I was an emotional wreck.  I was beyond stressed out in all aspects of my life.  How was I going to care for Johnny and his diabetes like this FOREVER?  How was I going to give any attention to a new born when my whole day revolves around Johnny's blood sugars?  How was Johnny going to survive if I did let some things slide so I can give attention to Jocelyn when she is born?  How am I going to hold 2 small businesses together while raising a newborn and a T1D 3 year old?  How were we going to be able to continue on with our life?  I was drowning in my own fears and anxiety.  I started researching anxiety and found that 25% of mothers of toddlers diagnosed with T1D are also diagnosed with post traumatic stress disorder with in a year of their child's diagnosis.  I honestly felt I was well on my way to this.  Finally one day, I couldn't stop crying.  I couldn't answer my phone, I couldn't deal with my employees, I couldn't talk to my mom and could barely talk to my husband.  I actually cried all day, about EVERYTHING.  I finally talked to my mom and said I don't understand why I am like this.  My life was just as complex and difficult last week and I was fine, so why am I freaking out this week? 

Then it hit me!!!!!

My mom lived with me in Texas for the first 2 years of Johnny's life.  She is a cancer survivor and an extremely hard worker.  So when she started acting funny when she was living her I had to get to the bottom of it.  She was paranoid about everything.  Jumping to conclusions about me not wanting her around, she thought she had cancer again, she was fearful of the weirdest made up situations it was crazy.  Finally I started noticing that she would drink 10-15 of the individual servings of Crystal Light a day!  I told her she couldn't live with me and drink that stuff because it was making her crazy.  I actually threw her "stash" out which might have been 100 different packets in multiple flavors.  Oh and guess what, she was fine within a week. 

When I brought Crystal Light back into the house after Johnny's diagnosis, I remembered this but knew that Johnny wouldn't drink even 1 packet a day with how much we diluted it.  I really didn't think about myself ever drinking it.  But now that I am thinking of it, I am drinking a TON of it.  I immediately stopped drinking it and in 48 hours I was back to my old self. 

I am going to provide 2 links.  1 for Aspartame, and 1 that feels the side effects are real. Read them and make up your own mind.  For me, I experienced first hand the symptoms and feel it is directly related to Aspartame. 

http://www.aspartame.org/aspartame_facts.html

http://www.sweetpoison.com/aspartame-side-effects.html


Why is this on my blog regarding life with T1D?  A couple reasons... what if I didn't dilute this stuff and let my kid drink it all he wants?  My kid would be craaazzzy!  I wouldn't suspect the aspartame since my doctor said to drink it (he didn't say at the quantity I was drinking though, lol)  What if I didn't realize the connection.  I no doubt would have gone to my doctor and been put on anti anxiety meds, depression meds, or a combination of them.  My hope is one day, someone who is in my shoes, might read this and just try eliminating it from their (or their family's) diet to see if it helps them.  (Disclaimer: I am pro medication to treat ALL chemical imbalances, anxiety, depression, bipolar or any other illness.  I fully support everyone in doing what they need to do to live a happy life.)  One day I might still need those medications, but this week I just needed to cut out aspartame. 

So is it odd that I still drink diet soda?  Ya, I guess it is.  The difference is I have 0-2 a day instead of 6-10 glasses of Crystal Light.  Is it crazy that I am still going to let Johnny have it?  Eh, I guess so but again he is drinking a small amount.  If I see in the future this becoming a problem, then I will absolutely toss it all and never look back. 

Monday, April 23, 2012

40 to 600 in less than 24 hours

I would like to think I've handled all of this pretty well.  I haven't done the "Why him?" like I've been told to expect.  I feel bad when he tells me the shot hurts, but I know he needs it and it hurts less than he makes me think.  I make sure we still do our normal activities, attend play dates when possible, eat out when we want to, spend the day out at the zoo or park or shopping like before.  I really have tried to just accept this diagnosis for what it is and "get on with it" for Johnny.  Johnny deserves to feel normal and the more I baby and change how we do things because of Diabetes the less normal I am treating him. 

But he isn't normal... and the past 24 hours have really proven it to me.  I think Diabetes decided I was getting too comfortable with this and decided to just beat me down and teach me who's the boss.

I had a melt down today about it finally, and even though its passed and I truly feel better, just typing about it makes me cry all over again.  I am mad that its never going to end.  It doesn't matter how "right" I do things, I still have so much to learn and my learning curve is going to affect the health and well being of the most important person in my world right now.  He pays for my mistakes and "lessons learned," not me. 

So here's what happened:

Sunday we had a family over and BBQ'd burgers and played outside.  Johnny had normal if not high morning numbers before the BBQ.  About an hour into our visit, and an hour of lots of outside activity we started bringing out the food.  Johnny saw the cantaloupe and wanted some.  Does this matter to a non T1D parent?  Well for me I have to really think it through.  Is it snack time? Nope.  Has he been exercising more than normal for at least 45 minutes? Yes!  Okay then the answer is "yes my little 3 year old.  You can have that healthy snack of fruit."  But it doesn't end there... he can only have 15 carbs worth of it.  So do you know how much cantaloupe is 15 carbs?  Me either!  I have options of how to handle it.  Option 1) give him about a cup of melon and estimate it to be about 15 carbs.  My brain knows that 1/2 a large banana is 15 carbs and grapes are a little less than 1 carb per grape.  So I can see about how many grapes the melon would equal and its kinda the same size as the 1/2 banana... eh close enough we are going to eat lunch soon.  Option 2) Excuse myself mid conversation with my guest, make my hungry toddler look at the melon but not eat it while I look up how many carbs per ounce is in cantaloupe then go inside and measure it with my scale and then let him eat it.  Well... what would I do before T1D?  What would you do with out having a T1D?  So that's what I do, estimate a cup and let him eat it, keep chatting with my friend, and enjoying our day.  (First screw up of the day, by the way... but I will address them all at once.)

Lunch time!  Pre-meal reading is 198 (just after melon, but 15 carbs after that much activity isn't supposed to count.  Mistake number 2)  Johnny is so excited to be eating outside and to be playing that he eats less than half his normal amount.  I can't actually believe he is full and don't want to tell him he can't have more but it is time for his insulin shot.  He ate 12 carbs and gets 1 unit for every 23 carbs.  So that is 1/2 a unit... barely a drop.  I worry he will want to eat more in a few minutes, and he is only 11 carbs away from 1 unit.  11 carbs is like 1 cookie and 1/4 cup of milk.  In my head the melon is still out, and I made chocolate covered bananas so that will definitely put him over the 23 and he can have 1 unit.  Oh, he is also almost 200 and 1/2 unit is supposed to correct 50 points over 250 so I figure even if he doesn't eat the 11 carbs he will just go down an extra 50 points and be around 150.  I've made up my mind... ONE UNIT IT IS!  (Mistake number 3)  By the way, Johnny took a tiny bit of the banana and that was it.  Not even close to 11 carbs...

Our guest leave after 2 hours and Johnny is wore out.  He gets sleepy and I let him make a bed on the couch and watch a cartoon.  When I see him fall asleep I panic and test him in case he is low after all that activity.  (Which is crazy since I KNEW he was tired and was going to sleep.)  He is 133, yay!  My math was correct, that extra 1/2 unit just brought him down about 50 points.  I'm awesome!  I got this diabetes thing! 

He wakes up about an hour later and is super fussy.  Johnny is always Mr. Grumpy after naps so this isn't odd.  He is however asking for a Popsicle and then going back to sleep, then rolling over and asking for a lollipop, then Popsicle and then sleeping again.  That was a red flag.  I test him. 

40.  WTF??? FORTY!  I don't know what 40 means but I'm shocked that I didn't go into labor with how much adrenalin pumped into my system.  I yelled for John who was upstairs.  He never hears me except twice in the whole time we lived here.  Once when I almost killed our dog on accident by leaving her in the heat too long, and this time.  I must use a different voice that penetrates gaming headphones when I am panicking.  I am giving Johnny juice now and John runs downstairs.  Johnny is okay, he is sitting and drinking.  He drinks it in about 30 seconds.  Well, I'm supposed to wait 15 minutes to test again.  But my brain can't handle thinking I am just going to "see what happens." Johnny is asking for crackers now (it is snack time) and I don't want to give them to him I just want to give him straight sugar so I know he is okay.  I give him a 15 carb pack of skittles.  Those actually take him some time to eat and I get to 10 minutes and test him.  He is 144. Whew, safe.  It's frustrating that sure 15 carbs should raise him 50 points but that doesn't mean it always will so do I chance it and wait the 15 minutes and "cross my fingers?" Or, do I go nuts and hose him down in sugar like I did and watch him skyrocket?  And you know what... HOW COME WE HAVE TO DEAL WITH THIS CRAP AND CAN'T JUST BE LIKE EVERY OTHER FAMILY I KNOW WITH A 3 YEAR OLD?  (My first "why him?") 

He is fine from that point on.  Great, I do test him often though.  I didn't plan to check him at night because he was 288 at bedtime but happened to wake up at took it as a sign to check him, 240 something at 2:30am.  Fine... I can't even say great anymore.

I spent time yesterday going over each of my mistakes and "learning" from them on how to better handle this next time.  I feel good that I learned so much in one day.  I need to have pre measured options for my T1D baby when I am serving food.  I do when I leave the house, so I need to be doing that at home too.  Maybe not for everyday, since I can easily measure as we go... but when company is over or things are busy here I need to KNOW and not guess.  Because guess what... the 15 carbs of melon I thought he ate was more like 4-6.  And checking his BG right after eating it and thinking he was actually at almost 200 and therefor 1/2 a unit wouldn't be a big deal wasn't smart.  He was spiking... yes it would have come down but I don't know where his BG really was.  And giving 1/2 unit because he "might" eat something is wrong.  I can't suck it out of him when he doesn't eat so I shouldn't put it in him until he does.  Okay... LOOK how much I learned!  I am such the super mom huh?  I am going to NEVER screw up like that again.

This morning I woke up and planned to make the most of our day.  We are all home (Husband doesn't work Mondays.)  We get up early with Johnny and pack up our things.  The plan is to eat breakfast out, go get new glasses for John and I, and then go to the Dallas Children's Aquarium.  F Diabetes, I am not going to let one bad day get to me. 

We eat breakfast at a little diner.  I estimate his breakfast the best I could.  1/4 of a huge pancake, syrup, and chocolate milk.  I guess it to be about 48 carbs.  He was 132 pre-meal so I didn't want to under estimate and give him too much insulin.  I realize he at less protein than normal but it is what it is.  We head off to get our glasses.

The eye doctor isn't open for 45 minutes after we arrive.  We kill time walking around the big box store until the doctor is open.  Mommy starts to get really tired and decides to go sit and let Johnny and John continue into the toy section.  When they come back Johnny doesn't look right and asks for a lollipop.  That's my big red flag.  He is moving slow too.  I check him expecting it to be low again, figuring I must have over estimated breakfast... geeesh, how did I do this to him again in less than 24 hours?  But guess what happened this time...

"HI"

Thats all the meter says.  Which means his BG is too high to read with this meter.  Which means it is over 600!  OVER SIX HUNDRED.  My eyes tear up.  This is just too much for me to handle.  What did we do wrong?  It must be that his insulin has gone bad.  I call the Endo right then and there in the store.  I leave a message for the on-call endo to tell me what to do.  I am assuming I will be told to give him more insulin to correct it, and water, and who knows... certainly not me... and certainly not anyone else who doesn't have a T1D toddler.  F this D!  (Yes I am swearing more at Diabetes now...)  The nurse tells me to check him for Keytons.  I explain that we are not home and I don't have the Keyton strips (strips he pees on).  She basically says, you need to check him as that is what is going to tell us if this is an emergency or not.  Well, we are at a store with a pharmacy so I buy a pack of strips, a bottle of water and head to the restroom.  No keytons!  Good... 1 good thing.  I am still waiting for the Endo to call me back but I know he is okay and we don't need to rush home.  John goes to get his eyes checked, which I am fine with and I let Johnny play in the small arcade that this store has while I wait for the Dr to call me.  When she does, I step out.  I can see him but am not actually in the room with him.  When I talk to the Dr, I see a woman with 4 kids go into the arcade.  Johnny is playing with her kids and I focus a little more on my conversation than on what he is doing... I am standing by the only door and can see the whole room so I am not worried about his safety.  Doctor says it has only been 1 hour since his insulin shot so she doesn't want to give him more, since his keytons are okay then he is fine and to just watch him.  If he isn't down to 250 in another hour and a half to call her back and if he shows any keytons to call her back.  I am kinda in shock... really do nothing?  How is he going to go from over 600 to 250 in the next 90 minutes.  For the first time I am frustrated with our endo team and feel like I was just given the standard answer and not really listened to.  The woman with her 4 kids come out and Johnny comes out with them, he is chewing on something.  I think, oh gross he must have found someones old gum or something.  I tell him to spit it out.  The woman tells me, "oh its okay, we shared our candy with him."  My heart sank.  I fought back the tears.  I couldn't even tell her that he can't have candy, that he is diabetic.... it wouldn't matter, it wouldn't fix it, she was being nice... and to be honest she was really nice.  I let Johnny go play again and called my dad (or he called me... its a blur.)

I lose it.  I can't stop crying.  This last tiny encounter with a very nice stranger put me over the edge.  Its not fair.  No one understands how I feel.  I feel like can't explain it to any of my mom friends either... they care, and they listen... I just don't have the words to explain how it feels to find out that someone gave him candy.  Its not like I am worried about calories or weight... its so much more than that.  Its so much more than I have found the words for yet.

Okay I test him again, 533.  At least he is able to get a reading after the candy... so it is coming down.
We go wait for Daddy.  Johnny is hyper and agitated.  Look, I was not a kid person.  Especially 3 year old boys... they are loud, crazy, sticky and dirty.  I get why the lady across from us is giving me the evil eye and I can tell she wants to tell me to discipline him for not sitting when I ask him to and for yelling just to yell and so on.  I get it... but heaven help her if she says even one word to me at this point.  I am ready to take my anger at this situation out on someone, so I just wait for her comments.  Good news, she stays quiet. 

We get home (I can't do an outing now) and he is 272.  I am shocked!  Happy but shocked.  I can't believe it.  It is now an hour after his "HI" reading.  Just 1 hour.  By lunch he is 130.  So technically if I didn't test him in the store and just tested him when I am normally supposed to I wouldn't have known.  I wouldn't have ever called the doctor, cried about a piece of candy, or stressed my body out where I might have gone into labor.  But how can you tell me not to test him? Yesterday's non normal test found a 40 reading. 

So what did you think about all day today?  I bet it wasn't Blood Sugar readings. 


(I know we all have problems.  I still stand by my original statement that I feel lucky that our problem has a "treatment."  However, today was the first time the little green monster named Envy showed up and reminded me that other people don't ever have to worry about this crap.)

Saturday, April 21, 2012

First Sick Day part 2

After breakfast yesterday, Johnny seemed to want to watch cartoons on the couch and not much else.  By lunch however he was fine!  He did nap, even though we didn't do anything but stay home.  Typically he only naps after a lot of activity. 

But the main point of this post is...

He was STABLE all day after breakfast.  I am so lucky these days in that most of the time he is very predictable. 

He woke low at 69, and after 15 carbs shot up to 168.  After breakfast and his morning insulin he was 310 2 hours after eating (pretty high but I do not correct highs between meals for now.)  By lunch he was 164, dinner was 174 and bedtime was 143.  Whoohoo!  He woke this morning at 140.  I couldn't be happier.

Now the next time he gets sick, truly sick at least I had a little glimpse at what to expect.  We test for keytons, we have full sugar and sugar free jello stocked, we have all the goodies.  I learned I can give tylenol fine, and to always give his background insulin.  So this was a nice trial run before the "real thing."

Thank you everyone for reading and for thinking of us yesterday!

Oh, side note.  My gestational diabetes was wacky Wednesday night until yesterday.  Nothing crazy just on the highest side of acceptable.  I think mine was like that due to stressing over Johnny.  Interesting how much stress and nerves impact our health.  (FYI highest side of acceptable 2 hours after dinner was 119, fasting was 103, 2 hours after breakfast was 121.  The rest of the day was in the 70s & 80s and today's fasting was 88.)

Friday, April 20, 2012

First Sick Day Part 1

(As a reminder, Johnny's doctor's want him between 100-200 pre meals and we correct anything lower than 80 or above 250.)

Short Version of this Post:
Blood Sugar levels yesterday-
  7:45am 137
  12:15 233
  2:40pm 60
  2:50pm 114
  3:15pm 87
  6pm 176
  8pm 310
12midnight 100
1:30am 167
6:45am 69
7:55am 168


Long Version of this Post:

Yesterday Johnny woke up and his fasting BG was 137.  There is nothing wrong with that number for his age, but typically he is between 80-130 more so on the lower side.  I thought it was odd but it wasn't crazy so no big deal. 

Johnny went to his Preschool from 9-12 and on the way home I thought I would run a quick errand and drop something off for a friend since it was between there and home.  My friend was just a few minutes behind me so I would have had to wait a short amount of time.  In the back of my mind I was thinking about how on Tuesday after preschool his BG was 69 when we got home, which it had never been before but now I am worried that he will be low after school.  I decide to drive thru good o'l McD for some chicken nuggets and apples.  I pull over after the drive thru, test his BG before I give him his chocolate milk and food and he is 233.  233!  That cant be right! I test him again, 245!  What?  I let it go and just move on.  There isn't anything I did or didn't do.  He doesn't get extra insulin for that number, it just is high.  I am driving to my friends and in the back of my mind I am thinking of calling the school and questioning the teachers about snack time and if he got a hold of anything else than what I brought him.  But that is crazy, the teachers always take great care of him, they have told me once or twice now that "Johnny ate a gold fish cracker before I could get it away" so if they are willing to tell me about ONE gold fish... I am sure they would have told me if he ate something today.  I let it go.

We run our errand and get home.  I give Johnny his insulin to cover lunch.  He is on a 1:23 ratio at lunch which means he gets 1 unit of insulin for ever 23 carbs he eats.  He at 43 carbs.  Technically I am not supposed to give him 2 units because it isn't 46 carbs.  I should give 1.5 units.  Basically I am to always round down.  But I decide that 3 carbs are not a big deal and he was running high anyways.  I give the 2 units.  Its about 1pm now.

At 2 we decide to go play at the Ark, where we had Johnny's birthday party.  I bring his snack for 3pm as well as a few extra fast acting carbs since I know he will be playing hard.  (I actually always bring this stuff with me everywhere we go but felt I should mention it in this trip.)  He loves it there!  He is running like crazy, sweating, his long hair is plastered to his head in a sweaty tangle of curls... pure 3 year old bliss.  At 2:40 he stops playing and tells me his is hungry.  Okay, for Johnny to stop playing when he is having that much fun is a big red flag that he is low.  I tell him to sit and he does.  I check him and he is 60.  ugh!  I am pretty calm, we have had numbers in the 60's now but this is our new official lowest.  It helped that he was calm and I knew what to do.  I gave him some juice (16carbs) and he gulped it down.  I am supposed to give it 15 minutes and check him again, but he is hungry still.  I let him eat his cheese crackers and test him only 10 minutes later and it is 114.  Whew, I feel better.  I figure we would be leaving in the next 30 minutes and technically not all the carbs he has eaten (total of 30 now) are into his system yet so I feel he doesn't need more and let him go play again.  20-30 minutes go by and he is getting into typical 3 year old boy trouble, wanting to wrestle with the other boys (Why don't us mom's just let it happen?  All the boys WANT to wrestle and all us moms are saying "no, play nice."  I am not worried about Johnny getting hurt, I am worried about the other mom's getting P/O'd when Johnny hurts her kid.  I kinda want Johnny to get a little hurt so he understands what playing like that will result in, but socially this isn't acceptable... LOL) He is getting frustrated that I keep stopping him for doing what he wants and seems to be more fussy about it than I would think is normal so I check him again, 87.  Not super low but geesh.  I know that the BG readings I get are a snapshot of his current levels and that they are typically going up or going down, based on the other readings I decide he is going down and give him skittles 15 carbs (and yes the doctor said to give skittles for this situation.)  We go home soon after that. 

Johnny naps on the couch when we get home.  Its a blessing and a curse when your 3 year old naps late like this.  He slept from 4pm to almost 6pm.  I did check him during his nap and he was at a safe number so I wasn't worried.  By dinner at 6 he was 176.  For him that is kinda high, but still in our target range.  I thought it was weird that he went up from 87 to 176 after just eating 15 carbs but I am not going to try to figure out every WHY in this game... or I will go crazy.  He doesn't eat much at dinner and gets the dreaded 1 unit of insulin.  I HATE giving one unit.  It is like a drop of insulin but I still have to go through the processes of giving a shot and hearing my boy say "ouch your hurting me."  I also feel that the 1 unit shot ALWAYS screws up his numbers.  After every shot I have a tiny droplet of insulin on the needle after I pull it out.  Its the same size droplet if I give Johnny 1 unit or 2.5 units, so when he is missing this droplet from 1 unit its a larger percentage of that shot than of the 2.5 unit shot and therefor his BG doesn't go down as much as it should.  And guess what...

2 hours later at bedtime it is 310!  Geesh  I have not seen a number in the 300's since we left our insulin in the car and it went bad.  So yes I hate the 1 unit shot, but even so its never been that high after a 1 unit shot before.  Eh... so annoying.  310 is high enough that I have to give him ANOTHER 1 unit shot now.  I haven't had to give him a bedtime shot in 17 days... so he is not really on board with this since he thinks shots are done after dinner.  Oh well, he gets his 1 unit, and his bedtime snack.

Bedtime sucks tonight but I blame the nap not the 310 BG.  He is up 5-6 times (don't shoot me, my kid rarely ever gets out of bed once I put him in it.)  He just isn't tired.  He asks for cheese, this is funny because he will not each cheese during the day but has learned if he asks for it at bedtime I will give it.  It is good for his blood sugar to have something like cheese at bedtime so if he wants it I will give it.  Then he wants water... my husband tells him no and that he just drank a full sippy of water.  I remind John that when BG is that high he ACTUALLY is thirsty and that his body needs to flush its system and that we should encourage water.  Does it suck that it is at bedtime, sure.  So I make johnny go potty first, then fill up his water sippy and send him back to bed. Its 9ish now.  I go to bed about 10 and ask John to check Johnny before coming to bed since his numbers have been all over today.  He checks at 12:30 and his is 100.  This is the biggest roller coaster day of BG numbers yet.  I set my alarm for 1 hour and check him at 1:30am, 167... I don't get it.  How did it go up in 1 hour if he didn't eat anything?  I thought for sure it would just keep going down, slowly maybe until he eats breakfast... agh!  I am about to pull my hair out, but instead go back to bed for the night. 

At 6:45am Johnny is in my room and telling me he is hungry for chicken and yogurt.  This is that red flag.  He is never asking for food like this unless he is low.  He might normally come in and say "good morning mama, are you awake, I'm hungry."  Today it was just a straight demand for chicken.  I get him tested and he is 69.  I give him juice and notice he feels warm, a slight fever.  FEVER!  I have been told over and over about "sick days" with diabetes and how numbers will be all over the place.  I finally feel like I have some kind of explanation of why yesterday was wacky.  I wake my husband and tell him to find me a thermometer.  Of course the only one he can find is one with low batteries.  I test him after his juice and it is 168... really?  15 carbs shouldn't raise him 100 points in 10 minutes... but okay he is just sick.  He coughs a few times, but really he is fine.  If he didn't have diabetes I wouldn't think he was that sick.  I guess I know he isn't "that" sick but I just don't trust his BG today.  I call his doctor's office at 7am and the on call doctor returns my call in about 2 minutes.  I tell her that we have never had a sick day and I wanted to know if there was anything different I should do for his insulin doses.  She goes over yesterdays numbers with me and tells me for now, not to change anything because we don't have enough data.  He isn't always high, and isn't always low so she doesn't want to increase of decrease anything.  She said to call again at lunch though.  I have to say I LOVE this team of doctors.  I read nightmare stories about doctors who don't want phone calls, just emails, or who can't be reached after hours or take days to return messages.  My team is awesome!

Johnny ate his chicken a yogurt, got his normal shots, and has been acting like a toddler who doesn't feel perfect.  Just relaxing on the couch with his toys and watching cartoons... with the occasional outburst of "Watch out Littlefoot!" (yes land before time is on)  Definitely not super sick, but just a little out of it today.  We will see how the rest of the day goes.

Thursday, April 12, 2012

How you celebrate your 3rd birthday if you have T1D

Actually... its kinda the same as if you don't have T1D.  I think there were a few more healthy decisions that I had to make that I may have chosen not to if Johnny wasn't living with T1D, but other (more health conscious) parents would have. 



Johnny is a bit lucky this year as far as celebrations go.  Both his parents have birthdays within the 2 weeks prior to his, so since he was born we have had a "family" birthday party and Johnny's own birthday party.  This year we had the family birthday BBQ on a Sunday, the next Friday was Johnny's actual 3rd birthday so of course we celebrated then, then 8 days later we had a shared official birthday party with a good friend who was born 5 days after Johnny.  Technically he had 3 weekends of birthday celebrations!  I don't think we will be doing this again next year, lol.  (Personally, I hadn't gained any weight this pregnancy until the "celebrating" began... and as of today, 3 weeks later have gained 10 pounds!)

When Johnny was first diagnosed, Birthdays were one of the first things to go through my mind.  Would he ever be allowed to eat his own birthday cake?  Would we have to make some sugar free joke of a cake instead?  Would birthday cake come with guilt if he did eat it?  Am I a bad parent if I let him eat it?  A few days into our education during our hospital stay I learned that Johnny doesn't have any foods off limits.  He should eat the same foods other toddlers would eat, INCLUDING birthday cake. (And by the way, you wouldn't feed your non T1D toddler sugar free chocolate or other candies so I don't feed mine it either.  Its is gross and does a number on the digestive system.)  Okay, so now that I knew that I had new questions.  Does he have to eat a tiny piece?  Does he have to eat low carb like a salad that day to make up for the carbs in the cake?  Again, I soon learned that "no, he can eat cake just like any toddler."  The difference between the cake he eats and any other 3 year old eats is just in that MOM has to KNOW how much cake he ate and how many carbs are in the amount of cake he ate, and estimating can be dangerous.  Well, I am a numbers person.  I have a complete handle on calculating carbs in recipes and dividing up by the serving size, then dividing again by how much of the serving size Johnny actually ate.  So really, each weekend I felt that the cake wasn't a big deal as far as managing the diabetes.

Here is what was a big deal for me:

Family Birthday BBQ-  Nothing fancy, just John's sister's family, his parents, and his grandma over for a BBQ.  John handled most of the food, I just prepped 1 side and cleaned the house a little.  BBQ started at 12. Johnny has been so hungry all the time, he always wants to eat, but he is not allowed to eat until 2 hours after his last snack or meal.  Therefore we made sure his breakfast was at 8:15am, snack at 10:15 so we could do lunch at 12:30.  However, there was some confusion about the start time and everyone was late to arrive (or called and expected to be).  So before we were living with T1D, I couldn't have cared less.  Its not a big deal, its not a formal party, its just family and BBQ.  I could let Johnny have a little something if he was hungry at any time, with out caring how much he ate when the BBQ was ready.  Now however, it is not a simple thing.  You see for him to be able to eat his Birthday cake, he MUST eat it with his lunch so that all the carbs for the meal and the cake are included in the insulin shot he will get.  So if I know he is going to be hungry at 12:15, but guest wont arrive until 1 pm... I don't have many options.  I could let him be hungry for 45 minutes, not a huge deal before T1D, but now it is.  This BBQ was only 2 weeks after diagnosis and to be honest we were even then way more on a schedule than we are now.  He was also experiencing extreme hunger and high blood sugar at all times.  High blood sugars mean that his body isn't absorbing all the energy from the foods he is eating.  So even if he ate 2 hours prior, he truly feels HUNGER.  Like I've mentioned in past posts, as a mom I can not handle my kid telling me he is hungry and not doing anything about it.  So letting him be hungry for 45 minutes wasn't going to happen.  That means that I was going to feed him at 12:30 even if no one was here.  So that means I would let him have cake then too.  Which meant no one would be there to sing to him except mom and dad (which kinda was the whole point of a family birthday party.)  If he eats his cake at 12:30 and then everyone else eats at 1:30 and he sees them eating cake he will want more but he CAN'T have cake unless it is with Breakfast, Lunch, or Dinner.  So do I be a good hostess and serve everyone cake and just let Johnny get upset that he can't eat more of it with all his cousins or do I be a good mom and just not serve anyone cake so I don't feel like I am punishing him at his own B-day party?  So you know what happened in the end?  Everyone showed up before Johnny even mentioned that he was hungry, and none of that internal struggle mattered.  Good!  (By the way, I was not upset with anyone for being late or thinking they were going to be late... I am late a lot!)  I was so relieved that I didn't have to do anything different than planned that when we finally had food ready to go we just served everything and ate it.  You must be thinking "So?"  Well, I forgot to test Johnny's BG before lunch.  He had been playing with cousins outside, and excited about the party... so I guess he could have been low and would have required more fast acting carbs; or he could have been high like he was always running those days and would have needed extra insulin in his shot... but now, 15 minutes into eating his meal, I wouldn't know even if I did test him.  Mistakes happen, it would be great to be that perfect care-giver, but I am not.  I do my best, and a pretty darn good job, but mistakes still happen and we have to keep moving forward.  I decided to assume he wasn't high or low and keep a close eye on him for low BG signs.  The final stress was when it was time for cake.  I carefully calculated the carbs in my homemade pineapple cake and frosting, cut small pieces that I knew were about 40 carbs, and hoped that he would be happy with 1 piece.  (I know he can have more, but it is still hard to "give" him a ton of carbs when I know he will need that much more insulin.  I think this might be one of the things that I get over in the next few months.)  So I put down this 2 inch slice of cake and inside am hoping he doesn't eat it in one bite and ask for more.  But guess what???  He didn't even finish it!  Geesh... pretty much every worry I had for the day never materialized into reality, and the one thing I thought I had down was what I messed up.  But that is pretty much the story of all moms, at least the moms I know.

Johnny's school celebrated his birthday with him the day before too!



Johnny's Actual Birthday-  My mom was in town, YAY.  Johnny loves his Mimi.  We actually had an early appointment in Dallas with his new Endocrinologist.  Other than a finger poke (which I did) they didn't touch him, however he remembered... and was scared to death of them.  It was a tad stressful.  Beyond just feeling bad when he was so upset, I physically have a hard time holding him while being 6 months pregnant.  I wanted to talk to the doctors, but my mind had a hard time focusing on the conversation and instead was mostly concerned with calming Johnny down.  But eventually, it was over and we got on with our day.  After a quick trip to the toy store, we came home and made rainbow cake to have with dinner when Daddy was home from work. Johnny was so excited about his rainbow cake, he talked about it the rest of the day.  We had a play date with a good friend and then we toured a house I fell in love with online. But, by dinner I was so tired.  I hadn't prepared dinner, and I didn't have anything in the house to make.  We decided to just have an easy dinner at Chili's.  Chili's is a good "go-to" for us.  We all know what we like and order fast, food is fast, and not expensive.  How could it be that we didn't think about the cake until we were mid-meal?  Unlike before T1D, we can't eat dinner then go home and have cake.  He needs to have cake RIGHT after dinner, and just the drive home was too long to spread it out... grrrr.  Okay, so we move on.  We decide it is is birthday, we are not going to skip cake entirely and ask the chili's staff to sing and bring out a scoop of ice cream.  It was a hit.  Thanks to my calorie king app on my iPhone, I could calculate Johnny's dinner out and ice cream very easily.  Whew...



Johnny & Jett's Official Party- This was the least stressful of the events.  In fact my stress decreases with each event under my belt, like anything in life... the fear of the unknown is my biggest issue.  The party was held at this wonderful indoor facility in town, with a massive play structure.  I think we ended up with 30 kids including a few babies there, plus their parent(s) and a few grandparents (including Johnny's Grandma.)  This stress was more focused on the fact that Johnny was playing so hard that in 10 minutes he had those curls of his plastered to his head in sweat, a red face, and clothes sticking to him. 

So what?  Well, T1D kids' bodies don't regulate their blood sugar like non T1D kids.  When they are extremely excited and active they burn through the glucose in their blood and run the risk of having a hypoglycemic episode.  With how hard he is playing this could happen very fast.  I start to wonder if it could happen so fast that he can't come down from this 3 story high play structure on his own.  I am not the mom the hovers over her kid (well... I hovered over him as a baby but much less this last year), but now, I feel the need to have an eye on him at all times.  It's really hard to talk to guests/friends that I REALLY want to talk to when I am staring/searching for my kid 2-3 stories up.  My husband was there and thankfully he and his mom took on this task mostly.  I was in fact able to relax and socialize. 

After about 80 minutes of playtime, the pizzas arrived and we were able to quickly get 25ish toddlers seated and eating.  Because of Johnny, we had to serve the cupcakes right after pizza. 

I don't think it was any different than many parties I've been to, except for the "MUST" feeling behind getting the cupcakes served.  I actually doubt any parents noticed it as different.  Again... Johnny didn't eat all his pizza or his cupcake.  He was so tired by the end of cupcakes.  He was ready to go home, even though there was still time to play left.  The rest of the day was not stressful, but I was aware of how likely a delayed "low" was.  I tested him a little more often than usual.  He was a little more fussy than normal but that was due to being a 3 year old after a busy party and eating cupcakes.  By the evening, we were great... coloring Easter eggs (next day was Easter) and setting up our new camping tent in the back yard. 


No we are not the weird family that camps for Easter; John got a new tent for his birthday and wanted to "practice." (When I was a young adult we were the family that went camping EVERY Thanksgiving, so I guess I shouldn't call the Easter campers weird... sorry.)

So... Johnny turned 3.  Type 1 Diabetes didn't stop that.  We celebrated, we ate, we partied, and we had a wonderful time!  Happy Birthday to my little man!  Mommy loves you more than you will ever know.

Sunday, April 8, 2012

Thanks Papa

I know that I have this need to explain myself to others.  I need to be validated by others.  I don't like this, but over and over I find myself seeking validation (not approval, but understanding).  I am really surprised this is such an issue for me, considering my professional life... but it is.
The other day Johnny's BG was all over the place and I was searching desperately for a "why."  I like to talk to my Dad (Johnny's Papa) about this kind of thing, his brain works much like mine and he is a T2D (Type 2 Diabetic).  I was going over the numbers, the BG, the Carbs, the insulin units, the time between meals, and so on... "The Data."  Finally he said the simplest truth. "I think you have a complete handle on the things you can control, the carbs, and the correct insulin dose.  You just can't control other factors like his hormones."  (I am paraphrasing)

It didn't matter how obvious this statement was, I needed to hear it.  It actually did lift some of the pressure to control Johnny's numbers.  I can only control "some" of the factors that effect his blood sugar, and I control those factors very well. 

Thank you Dad!

Thursday, April 5, 2012

Roller Coaster Ride!

Johnny's Mimi (my Mom) came for a short visit last week.  We had a great time, maybe even a little too great one day.  Mimi wanted to take Johnny to a local "amusement park." about 5 minutes from our house.  You can't see much other than a park like setting from the road, but I did know it had pony rides... so it would be a hit with Johnny.  Earlier this week I got a few ID bands I ordered and I thought this was a great day to start getting Johnny used to wearing "something."
Toddler Sized, he loves them.
Johnny likes this, but I was less than impressed.
I guess it "is" a whistle.

Johnny's morning number was a bit low, 78.  For his age, anything below 80 we correct (give him sugar).  I gave him some juice and tested 15 minutes later and he was 123.  Fine!  We had breakfast like usual, gave insulin like normal.  About 10am we headed out to the Park.  This was right at snack time, perfect.  I let him have snack in the car just when we got there so I knew he would at least have that in him before he played. 

We pull in and it is empty... maybe 3 other cars there.  It is only $2 for adults and $0 for kids 3 or under.  We start walking around, but there isn't anything there but a few tents and picnic grounds.  Finally I make my way over to the booth that collected our $2 when we drove in and she pointed me to a trail that would lead to the Pony Rides. 

OMG... I had no idea what we were in for.

It started off easy enough.  Pony Rides!  A favorite in Johnny's world.

But then, he saw it!  Once he saw it, I was done for.

This was Johnny's first roller coaster ride.  He LOVED it, we went 2 times on this one.  But there were other rides.  Of course the ones he loved were the same ones that scared me to death to watch.  The ones I liked he was bored on, aka Boat Ride.  We took a break mid visit and tested BG, it was over 200 so that was better than low. 

We were only there for 2 hours.  To be honest, Mommy couldn't hang.  I was having contractions like crazy and getting sick.  This last video looks calm, but it is because I couldn't talk.  I turned the camera off because he let go and was trying to turn around.  I was yelling "stop it." I don't know if I was yelling at him or the ride operator, but I was definitely freaking out.  This ride, did me in and I was DONE watching these things.

We left at 12 noon and met my husband for lunch at a local pizza place.  I felt so bad that I checked my BG and it was 83... I need to take better care of my own "snack" needs it seems.  Johnny was 139, just right.  We eat our pizza (crappy pizza, but Johnny didn't care), and visit for a little bit.  Johnny wasn't the only one who road a roller coaster that morning.  I went from a nice relaxing trip to a park, to thinking I was filming my own child's death.  I stressed over his BG, had too many contractions, and finally calmed down after lunch.

After lunch I took the boys home while Mimi and I did a quick shopping trip to my favorite place, Target.  Near the end of the trip, I got sick again and had to have my mom drive us home.  I just can't do much these days with out "over doing it."  The roller coaster wasn't over for me it seemed.

When we got home, Johnny seemed fine.  About an hour into being home I noticed Johnny was bouncing off the walls, a classic HIGH BG behavior.  I guess his roller coaster wasn't over either.  At dinner time Johnny was 325!  Really??? 139 at lunch and 325 just 6 hours later after all that hyperactive behavior and excitement this morning?  It makes no sense.

(This next paragraph I am not proud of, but I want other T1D parents who might be going through the same thing to know they are not alone.)  I instantly blame my husband.  After all, Johnny's numbers were fine with me.  Once John took over and I was gone, he is out of control again at 325.  John keeps snacks and sweets in his office, and while I don't know where they are I am 100% sure that Johnny knows.  I am sure that while John was "watching" Johnny he was able to sneak into Daddy's office and eat a bunch of candy.  I ask John, who of course says "no way."  But I don't believe him, that is what anyone would say.

I let it go and a few minutes later decide, he probably is correct.  I am glad that I didn't make it a full blown argument this time.  I kept my doubt to myself, and eventually realized that I was wrong.  I wonder if instead Johnny had a severe low while I was at Target, and the 325 is a rebound (still kinda blaming my husband for not noticing a low).  A rebound is when the blood glucose gets so low that the body produces a hormone that tells the liver to release it's stored sugar causing a rebounding high.  This theory makes sense.  I have had it drilled into me that activity and excitement can cause delayed lows, so obviously my little man experienced a delayed low a few hours after roller coasters... dad didn't notice... and now he is rebounding.  I think about when I got home his behavior was fine, but soon he went crazy.  I must have got home right when his BG was rising.  Okay, I figured this one out!  GO MOMMY!  (Roller coaster high for me)  We eat dinner and give him extra insulin to cover the 325. 

Before bed (7:30pm) we check him like always, about 2 hours after dinner.  84... OMG, this roller coaster never ends!  84, what the heck?  We give snack and send him to bed, planning to check him through the night.  At 8:30 he was 112, okay.  At 10:30 he was 95!  So I technically am not supposed to do anything for a 95 but I just couldn't sleep knowing he was starting that low.  We woke him up and gave him juice.  The waking up enough to drink took us a good 45 minutes.  We all hated doing it.  At 2am he was 238... no comment.

I went to the Internet to see if I could figure out why we had such high numbers at dinner after a day of activity and excitement.  I am 95% sure I really know why now.  It was the PIZZA.  The theory is that when you eat a meal high in fat and in carbs, the fat takes longer to digest.  After it is digested the carbs spike the blood sugar hours later.  This doesn't happen with EVERY diabetic, and it doesn't happen with all pizza... its just a theory and it is kinda hit and miss... but to me it makes sense.  Johnny rarely eats pizza that I don't make, and when I make it it is on a whole grain sandwich thin with low fat mozzarella cheese.  I think the lows the rest of the night were the delayed lows I was expecting from the mornings activities.

I hate trying to figure things out as we go.  It should just have set rules to follow... but it doesn't.  Dang it! 

Sunday, April 1, 2012

1st true low

Johnny's target range is between 100-200, and I am learning more about the "whys" all the time.  I thought the range was higher for him because the doctors were trying to avoid going too low (still partly true) but it is also because the hormones that allow for Johnny's body to grow will cause higher blood sugars and they are allowing for those hormones since he still has so much growing to do.  Target is 100-200, but we don't fix a "low" unless it is below 80 and we do not correct a "high" unless it is above 250.

I have yet to see the "Honeymoon Phase" kick in.  At least not that I can tell.  We have not backed off the insulin yet, and I think that is typical when the Honeymoon Phase starts.

Children's Hospital in Dallas has been wonderful for both Johnny and myself.  They have classes for parents/caretakers one of which I attended this last week.  I learned a lot, nothing that was a completely new concept, but it did confirm some of my suspicions.  For example I learned that when I anticipate Johnny is going to be engaging in higher activity above what is his normal (play date at the park, zoo trip, and so on) I can give him extra 15-carb snacks for every 45-60 minutes of activity.  It makes sense, and I thought about this before but having it confirmed as okay helps put me at ease. 

The class was from 9am -3pm and I couldn't bring Johnny.  John has missed a lot of work these past few weeks and our business is a little short staffed as it is so he really shouldn't be staying home with Johnny (of course we will do what we need to do, but it wasn't our first choice).  Lucky for us Johnny's Grandma is always so helpful and agreed to come to our house and stay with Johnny for the day.  She had 2 crash courses in injections over these past 3 weeks, and 1 time I supervised while she administered the injections.  I don't know how comfortable she really was staying home alone with him, but she didn't lead me to believe she wasn't.  The morning of, I handled Johnny's breakfast and his first 2 injections.  That left mid morning snack, then Lunch (BG check, carb counting, and insulin injection) and afternoon snack for Grandma to handle.  I felt really good leaving him for the day.

I get a text from my husband at lunch time.  "Mom just checked Johnny before lunch and he was 71.  I told her to go ahead and feed him lunch and we will probably test again before snack.  Let me know if she needs to do something different.  She said he was a little cranky asking for you and after he got over that he seemed to be sulking."  It was interesting that we just talked about this in class.  If we hadn't I would have just agreed with Johns plan. However, class taught me to treat the low first.  So what the plan should have been was to give Johnny 15-carbs (simple carbs to quickly raise blood sugar) wait 15 minutes and recheck.  If he was still not above 80 then repeat.  Once he is over 80 feed him lunch as usual and give him insulin for lunch carbs only, not the carbs used to treat the low.  I called Grandma to tell her this new plan, but by the time she had called John and chatted, John text me, and I read it, she had already started serving lunch and Johnny was gobbling it up.  So we adjusted.  I just said to give him some juice with lunch and not count it in his insulin.  You would think that is fine... and it was.  But I learned at class why it isn't the BEST option, eating carbs along side of protein and fat will slow the rate of digestion of the carbs which slows down how quickly Johnny's blood sugar will rise.  71 isn't crazy low, but remember that we only get a snap shot of what his BG is doing, I don't know if 71 was stable or just a picture of a fast drop and he was going lower fast.  So you want to get him the simple carbs right away, with out the protein and fats so that it does act quickly to correct him. 

In the end, he was fine, Grandma did good, and we learned from it.  Since then we have had just a few other low numbers, mostly in the 80's (technically not low enough to correct but it puts me on edge and I check frequently).  This morning Johnny woke up at 7:30, and instead of his happy bubbly self was a little sad seeming (hey kinda like Grandma described as sulking) and said he was hungry.  We checked right away and he was 78... not scary low but our 2nd lowest number ever.  He had a very active day yesterday and while he was running good numbers all day I was taught in my class that delayed lows often follow lots of activity.  So at bedtime when he was in the 80's I gave him 25 carbs not 15.  John was out late and checked him just before 2am and he was 154 so I felt okay sleeping the rest of the night.  And I still think it was okay that I did, but he fell 75 points in the following 6 hours of sleep... which isn't normal for him but I guess normal isn't a word that will always apply. 

I studied applied math in college... I am very much into formulas.  It is shocking to me that the "formulas" for managing diabetes are not set in stone.  I think there are so many variables that either they can't create a true formula yet or they think that parents wont understand a complex formula with multiple variables to calculate.  Just something to think about... well something I and many many other T1D parents think about.