paranoia

Every once in a while I worry that my other boys will get diabetes. Mostly I worry about Drew. He is too young to tell me how he feels. Somedays it seems he is drinking a lot of water and that I am changing a lot of diapers. Of course, it is easy to check...just test his blood sugar levels. We have enough meters afterall! Well I have done it twice now. Drew thinks it is great when I pull out the poker for him. He hands me his little finger and I prick it. He is so fascinated by the little drop of blood and goes to touch the test strip with it (last time he licked his finger after...wasn't expecting that!) Never cries or flinches. 125-Whew!!! Until the next trip of paranoia that is! At least I know he would be easy to test if he did get it :-)

Bryce's Team: Wipeout Diabetes

We have a team for the JDRF Walk to Cure Diabetes!!!

Join us or donate to 'Bryce's Team: Wipeout Diabetes'

Check out our team page:

http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=87391278

midnight honey

Diabetes doesn't sleep...

What that means for us is that Bryce's blood sugar levels need to be tested in the middle of the night to make sure he doesn't go too low. Being the super amazing dad/husband that he is, John takes care of these midnight and 3am tests (he figures I have to take care of Drew, so he will take care of Bryce. Man I love that guy!!) There have been plenty of times where John will be battling a low while I sleep, totally unaware of what is going on. Now in case you are wondering, if he is just borderline low, we can turn off his pump, maybe give him a sip of milk and all is fine but if he is really low, he needs fast sugar. Our go to is usually honey. Last night, we were both up (Drew was screaming like a mad man) so I went in with John when he brought in some honey. John sat Bryce up and told him he had honey. Without even opening his eyes, Bryce devoured the spoonful of honey, making sure to lick every little bit of it. It was quite an amazing thing to watch. And when he was done, he went back to sleep. BG up to 150...we went back to sleep too :-)

diabetes camp

A couple weeks ago, we went to Gales Creek Camp for children with diabetes. The preschool camp consisted of us and 7 other families with 4-5 year olds with diabetes. It was just one day and an overnight (when the kids get older, camp runs for a whole week.) While the kids played games with the camp counselors, the parents met to share stories, ask questions, and go over things like how to prepare for sending your kid to school, latest research in finding a cure, etc.

The boys seemed to have a really good time. Here are some memorable things from our time at GGC:

*we rocked out family skit night (Bryce sang "I've got diabetes!" and we backed him up "he's got diabetes!"...this little 'rap' was a fave of the counselors. Other verses went "I'm ready for a poke", "Time to get a new set", etc)

*Bryce got this obnoxious whistle from the camp store (every time he blew it, all the staff would look around wondering of it was time to gather everyone "on the log")

*swimming in the pool was fun (until Jaden swallowed a gallon of the water and proceeded to throw up into the pool- Everyone out!!)

*Jaden said the food was amazing (grilled cheese on white bread-w/american cheese for lunch and huge fluffy pancakes for breakfast)

*Drew was dropped off by my mom at dinner time (he was dubbed 'PB boy' cuz after snack, he was covered head to toe in peanut butter)

*night time blood sugar tests (we stayed in the boys dorm with 4 other families and all night long I could hear the click click of test vials opening, lancing devices cocking, and fingers being poked)

*after breakfast, Bryce was really out of it and zoning (he was 529!! bolused him according to the pump, later got an unbolused snack, when tested before lunch he was 36! wtf?)

so long

It surely has been a while since I last posted. So long that I forgot my login and password!! Of course with no time to figure out what they were since I am chasing a 15 month old, battling highs and lows, and trying to keep cool, it meant a couple more weeks with no postings. Go figure, I finally have some time with the two oldest playing outside and the little one napping. So I get logged back in and the baby wakes up....well hopefully it won't be too long before I can actually update you all!! Gotta get Drew!!!

pump 101

BRYCE SHOWING OFF HIS PUMP  

It is about the size of a pager which he wears in a little pouch around his waist.  It has a little cartridge filled with insulin.  The insulin is delivered through a thin tube the connects to a "set" that is inserted into his lower back.  We change this set every 2-3 days switching sides each time.  

THE SET ALL ATTACHED

This is what the set looks like when attached.  The blue part and tube can be disconnected leaving just the quarter sized sticker part.  There is a thin tube, cannula, that goes under his skin so he can get insulin.

SIDE VIEW OF SET

The cannula is the tiny tube you see under the white sticker part.  A very small part goes under his skin so the insulin can get in.

THE INSERTER THING

This is the contraption that gets that cannula under his skin.  It has some spring action that pops the needle out fast and when you take the needle out, it leaves the cannula.  We have had a ton of probs with this part.  Mostly not getting enough of the cannula under the skin or the sticker part curls or we've even had it not puncture the skin.  Because Bruce has such little amounts of fat, we use the angled set.

THE PUMP

While there are controls on the pump itself, his blood glucose meter serves as a remote control.  We test his blood then enter the number of carbs he is going to eat and it calculates how much insulin he needs to cover it (bolus).  We then decide how much insulin to give him based on that recommendation.  If he wants more food, we just give him another bolus.  The pump also gives him very little amounts of insulin every few minutes throughout the day (basal) for the time between meals.  

There is a lot more to all this but I think that gives a good overview of what pumping is all about.  Any questions?  I'd be glad to answer them :-)

tele-blogging

So I wish my super power right now was tele-blogging.  You know, like tele-porting or tele-kinesis.  I have so many things I want to blog about but haven't had the time to write.  So if I could just 'think' and it would automatically go to this blog that would be great!!  So much has been going on....we started Bryce on his pump.  With this, there has been a lot of  excitement...the 'angels' that made this possible financially, the training for using it, the highs, the lows, Drew's first birthday, Easter, dropping the pump in the toilet, meeting other moms of kids with diabetes, seeing the mom I blogged about last month, etc.  Since tele-blogging is not an option here, I will wait till I have another spare minute to hit on those topics.  I need to take the boys outside now that I have corrected Bryce's low....fun stuff!!

it's here!!

The insulin pump for Bryce came in today.  BIG box with lots of stuff.  No wonder they send out a trainer to go over using it.  She will be out here on Wednesday to get us started.  I know that John and I will have to try on a "set" (the tubing inserted under the skin that administers the insulin drip)  I hate needles, so I am not looking forward to that part!  I will pretend to be brave for my sweet little guy though.  Anyhow, we are hoping to have him pumping very soon....

pump

We have been wanting to get Bryce on an insulin pump for a while now.  From what we have heard, it will allow us so much more freedom.  As things are right now, he gets two shots a day.  His morning shot has two types of insulin, a short acting (Novolog) to cover breakfast and an intermediate (NPH) to cover lunch.  This means that he needs to eat lunch as close to 4 hours after his shot because that is when the NPH kicks in.  In the evening he takes another shot that has the short acting (Novolog) to cover dinner and a long term (Lantus) that lasts 24 hours.  Because of the long term insulin, he needs to get this shot at the same time every night.  This means that we have a very rigid meal schedule of when he needs to eat combined with how many carbs at those meals.  Very little leeway with regards to how hungry his is or isn't or other circumstances that come up.  With a pump, he will only be on the short acting (Novolog).  The pump will administer small doses throughout the day as a "basal" dose (much like the long term, Lantus) and when he eats, he will get a "bolus" dose to cover how ever many carbs he is going to eat.  This means if we wants a bagel one day, he can bolus for the whole thing.  If we go to a birthday party, he can have an extra cookie after eating cake and ice cream.  If he isn't hungry, we can bolus for less carbs.  We won't be stuck to a schedule.  We won't have to force him to eat when he doesn't want to.  We will still count carbs but we won't have to give him a set amount, no more, no less.  He will be able to eat like any other kid.  Freedom, peace of mind.  We can't wait!!

new low

We were hit by the stomach bug again last week, only one month after the last episode.  This one was short lived and only got Bryce followed by Jaden (though we all felt blah)  Bryce did get large ketones.  The only way to get rid of ketones is with insulin.  Luckily Bryce was done throwing up so could somewhat eat. The ketones were persistent and I needed to give him another shot however his blood sugar levels were too low.  I ended up having to feed him tablespoonfuls of honey to finally get him high enough!  It took over an hour, but he got there.  Ketones went away, so did the bug.  

The crazy thing is ever since this bug, Bryce's levels have been great!  We significantly lowered his morning dose cuz he was going low.  I was getting bs levels in the 300s after breakfast and they are now closer to 150.  (Target range is 80-200.)  Of course I am more freaked out about him going too low so we test a lot right now.  Couple days ago he was 44 at lunch (even though he was 236 only 45 mins earlier!)  Maddening for sure!  But looking at the big picture, his numbers are much better.  Thanks bug???

another mom

Earlier this week, we had an appointment at the Diabetes Clinic to discuss putting Bryce on an insulin pump. While waiting for our educator, I over heard the doctor talking to another mom and it sounded as if she was just finding out her child was diabetic.  I talked to her for a few minutes though would have liked to talk to her longer.  I so remember being in her shoes...in a state of shock, wondering what was going on.  How was it possible for my little baby to have diabetes?  He/she was just drinking and peeing alot....who knew that meant diabetes? What is this was going to mean for my child, for the family?  How could I give my child shots everyday and test blood sugars?  and this is forever.....I wanted to cry with her.  I still can't stop thinking about her and her 4 year old daughter who jumped and played unaware of what was going on.  I was there only a few months ago, crying as if my world had crumbled around me.  Since then, diabetes has just become a part of our life.  Some days are easier than others but overall, it is manageable. Do I ever not think about Bryce's diabetes? No...I am always checking the clock, calculating and recalculating his carbs, trying to decipher the numbers, hoping he doesn't go low but not wanting him to stay high either. I hope in the short time I was able to talk to the other mom, that I was able to convey to her that it will get better, once the shock and information overload come to an end.  There is so much support out there and people with diabetes grow up to do wonderful things, just like anyone else.  I hope to see this family again and maybe that time we will laugh together about the crazy things we and our children do because of diabetes.    

Diabetes Expo

Last weekend, we attended the Diabetes Expo at the Convention Center.  The boys got to do crafts then watch a magic show while John and I listened to a speaker discuss where research is at on finding a cure or prevention for diabetes.  The boys probably had more fun than we did. After the symposium,  we walked around all the vendors at the expo.  I got info on insulin pumps and diabetes camp while the boys jumped in a couple bounce houses and ate samples of fruit sorbet.  TrialNet was there so we took the opportunity to have our blood tested to see if we are likely to get diabetes.  They run studies on close relatives of those with diabetes and if we show antibodies that can lead to diabetes, we can be in a study to prevent the onset. I absolutely hate needles, they make me faint.  But I was super brave during my blood draw because I think this is important.  Jaden really did not want to get his blood drawn.  He screamed and cried.  It took us about 20 minutes to even get him to sit in the chair by the nurse.  All this time, Bryce kept getting in the chair...maybe he wasn't scared because he wasn't getting his blood drawn or maybe cuz he gets pokes and shots all the time.  Anyhow, Jaden was a wreck!  Outside the little tent, other families were waiting with their children to get blood drawn and could hear Jaden's fearful protests. One boy was even hiding under the table because he didn't want to be next.  When we finally got Jaden to get his blood drawn, he screamed out "it hurts! it really hurts!!"  Yeah, sorry to all the parents after us!!!

the big FOUR

Bryce turned 4 years old on February 17th.  We celebrated at Bullwinkle's with pizza and cake, followed by lots of running and climbing around the play structure.  I can't believe how big my little guy has gotten!

stomach bug

Our house had a visit from a not so friendly stomach bug this weekend.  It started Thursday night with Drew throwing up all over me....multiple times.  A couple hours later, Jaden came running into our room saying he didn't feel too good and subsequently threw up on the floor by our bed.  I was dreading the fact that Bryce was inevitably going to get sick too.  We just had an appointment with our endo that said to call right away if he throws up because diabetes management gets tricky at that point.  I figured it was because the risk of going low due to not eating or keeping anything down.  Not the case really.  Well sure enough, 3:30am and Bryce was joining the other two throwing up.  I called the on-call doctor (I could tell I woke him up!) who basically said to check for ketones often and then call before breakfast.  We were up all night long, ended up just watching movies and tv shows with the boys. Not a fun night at all! In the morning, there was no way Bryce was going to be eating but he still needed to have his insulin...this is where it gets tricky.  Apparently the body produces excess sugars when it is stressed, like with an illness, so even though he was throwing up and not eating, his bs levels were high.  He only got half his usual dose in the morning.  I had to check his levels often to make sure he didn't go low and check his ketones also.  Normally ketones only form if blood sugars are high over a period of time but when sick, they can form with normal bs levels.  So when I tested him around lunch time, he had moderate to large ketones (ketones are the byproducts of the body burning fat for energy instead of sugars and they make a person very sick)  Apparently the only way to get rid of ketones is with insulin so Bryce needed another shot.  I was able to get him to drink some apple juice (though it took a couple hours!) and this kept him from going low.  We spent most of Friday sleeping on the couch and watching endless tv.  It is no fun having three sick boys to take care of....especially once I started feeling queasy too!!!  Everyone (except me) was feeling much better by the time John got home from work.   I am bummed that we missed the boys' school Valentine parties...especially after all the hard work we did making Valentines for everyone.  But I am so glad everyone was doing better for the actual Valentine's Day....well, that is except for John.

big cake

John and I were going through some old photos and came across this one from last year of Bryce eating a HUGE piece of chocolate cake.....It almost made us cry!  

Date Night

This afternoon, John took Jaden to the Blazers basketball game.  Thought it would be a good opportunity for me to do something special with Bryce, so my mom came over to watch Drew.  He was so interested in playing with his "robots" (he uses straws, legos, pipecleaners, anything he finds around to make these things) that I didn't think we would ever get out of the house.  We eventually left and just went to McDonald's so he could play on the climbing structure.  Okay, so not very interactive since I won't climb through those little tunnels but at least it was something active and fun for him.  After playing for a bit, I got him an ice cream cone as a treat (it was snack time for him and activity lowers blood sugars).  We chatted as he ate his ice cream cone and the whole time I am thinking about how many carbs it may have.  I looked online before we left and the McD's website said that a kid's cone was 8 and a "low fat vanilla" cone was like 26.  Not sure which he had since our only option was vanilla or chocolate dipped.  Anyhow, he didn't eat the actual cone (I got that...mmm) so maybe he got 12?, 20? who knows.  He then went back and ran thru the climbing structure again with some kids.  As I watched him, my thoughts were of if he was going to go low from all the activity, did he have enough carbs or was the ice cream too much and he still needed to run, and how long before I test him, etc.  Simple playtimes are no longer simple for us.  Luckily, he is a kid and just plays...I will be the one to worry and calculate carbs, etc.  My wish is for him to not miss out on the fun of childhood because of diabetes.  Even if it means having to make adjustments later to correct for an ice cream cone that we don't know the carb count for.

chosen

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. 

"Armstrong, Beth, son. Patron Saint Matthew." 

"Forrest, Marjorie, daughter, Patron Saint Cecilia." 

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity." 

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy." 

"Exactly", smiles God. "Could I give child with diabetes to a mother who does not know laughter? That would be cruel". 

"But has she the patience?" asks the angel. 

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy." 

"But, Lord, I don't think she even believes in you." 

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." 

The angel gasps. "Selfishness? Is that a virtue?" 

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect." 

"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side." 

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

by Erma Bombeck

syringe shortage

I knew I was running low on insulin syringes. It had been a couple months of daily shots afterall. So when I checked on Monday and we were completely out, I went right away to the pharmacy to get more.  They were out but could get them in the following morning.  I wasn't too happy about this cuz multiple trips to the pharmacy with three kids (or even just 2) is not easy, plus Bryce needs his insulin!  Luckily I found two syringes with our testing kit.  Perfect, that would get us through dinner and breakfast then our syringes would be in.  At least that was what I thought until I got a phone call the next afternoon saying that our order did not arrive!  I wasn't sure what I was going to do.  I had already scoured the house looking for extra syringes to no avail.  Yes, I could go to a different pharmacy but what a pain!  I then realized that Jaden's classmate who also has diabetes, may have extra syringes.  I called her mom and got her just before she was headed out for pick up.  She brought me three syringes.   What a life saver!  I am very fortunate to have a family that knows what we are going through because they have been here themselves.  In the future, I will make sure to get my refill well before I run out!!

so much for so little

Those little containers of Tillamook yogurt have 39g of carbs in them!!!  To put that into perspective, Bryce gets 30g each for breakfast, lunch, and dinner and only 15g for snacks.  So one tiny 6oz yogurt is more that he can have for one meal!  Well my boys all love yogurt and Bryce really wanted one of the Tillamook ones so he opted to get an extra shot of insulin to cover the high carbs.  Hope it was worth it...

HIgh

Over winter break, Bryce's blood sugar levels were all over the board which I chalked up to the fact that our schedule was all off plus we were doing a lot of guestimates on the carb count for the various holiday yummies.  Now that we are back into our everyday routine and eating schedule, Bryce's levels have been consistently high.  We have adjusted his insulin a couple times now, but it doesn't seem to be having an effect.  Anytime we up his insulin, I worry about him going low. Not the case lately, in fact, he has been so high that he has required an additional shot at lunch time. And even that hasn't dropped him low.  The thing that sucks is that anything could be causing this from a growth spurt, to fighting off a cold, to the honeymoon period coming to an end (after a person is diagnosed, they go through a 'honeymoon' where their body starts to make some of its own insulin.  this can last a few weeks to a couple years)  Does this get easier?  I don't believe so, we just learn to roll with it and make the adjustments needed.  

2008 summary

I didn't write a newsletter this year like I usually do.  It isn't that I didn't have anything to write about.  Quite the contrary, it was a very busy year.  We had a couple trips to California including visiting San Francisco twice and So Cal for my brother in law's wedding and a couple days at Disneyland.  Drew was born and he is such an awesome baby that fills our home and hearts with such joy.  Jaden learned to read and continues to draw and write amazing stories. He started Kindergarten (I contemplated the homeschooling thing but decided he needed time away, as did I)  Bryce started preschool where Jaden used to go.  Both boys took swim lessons and are doing so well in the water.  We braved another camping trip, this time with a newborn and this time it was a huge success and lots of fun.  Anyhow, lots of fun happened in 2008 but with that, it was also a very challenging year for us (as it was for many families)  Our greyhound, Jasmine, got congenital heart failure and had to be put down...we still look for her to come greet us at the door.  Of course our biggest challenge was Bryce's diagnosis of diabetes.  While at the time I thought our world was falling apart.  Now that we have lived with it for over 2 months, it isn't so bad afterall.  Wouldn't wish it on anyone but it is managable.  I love my sweet little guy (I love all my sweet little guys...and I have plenty of them!!)  May 2009 be an enjoyable, healthy year!