My JDRF walk kickoff speech

Our local JDRF chapter asked me to speak at the walk kickoff luncheon at the beginning of December, my first thought was no way lol! It turned out great and I was able to hold back tears and get through it without stuttering from nerves :)  Here is my speech:

Introductions..... and Justin hiding lol

He was diagnosed just over a year ago on November 19, 2012, he was 7 years old. 

He had all the classic symptoms, including excessive thirst and frequent urination.  Looking back he probably had diabetes for 2 ½ - 3 months before diagnosis. 

It was easy for us to blame the symptoms on other things going on, it seemed the symptoms were worse on days he had soccer practice or a game.  It was super hot out, so I didn’t even question the excessive drinking. 

Friends would comment that he was looking really thin, at  diagnosis he weighed 44lbs, that's a 16lbs loss from 3 months earlier. Of course it's hard to notice that because it happened gradually over a few months. But when I look back at photos I wonder how I didn't notice, it was just so obvious.

After the soccer season ended in early November, we had nothing to blame it on.  Over the next 3 weeks, it just got worse, the day before he was diagnosed we were at a NASCAR race at Homestead Miami Speedway, it was something Justin had been really excited about doing. 

You’ll see in the pictures that he had a much better time this year!

The ride there which should take just under 2 hours….took 3, we had to stop at least 6 times each way so he could use the bathroom.  He was so lethargic, asking to be carried often and just wanted to drink all day….our seats were in row 30 and Justin and my husband would no sooner get back from the restroom and he needed to go again.

We had some friends sitting not too far from us and they came over to say hi, Justin could have cared less about seeing his friends, he just layed on my husband and would barely lift his head to talk.  That was the moment I knew with 99% certainty that he had diabetes. 

I didn’t know at the time about DKA, and just how serious and dangerous the situation was. 

The next morning I called his pediatrician and was told to bring him over almost immediately. I don’t remember ever being so nervous, I knew exactly what was going to happen, even though I was holding out hope that it was something else wrong. 

His Dr. with tears in his eyes, just said his sugar is high…………..and he was talking to me about what we needed to do and he was gonna get some paperwork ready for me, and I just lost it, I know we are supposed to be strong but I couldn’t hold it in, my gut feeling was right and it was the most horrible feeling.

Justin has been so brave from the first finger stick at the Drs office, to the IV at the hospital and the daily injections, he continues to show me everyday what a hero looks like, I remind him all the time how proud I am of him for dealing with this like a champ!

Awareness is key, every chance I get I will talk about Type 1 Diabetes.  It is really amazing just how little most people know about it.  Before Justin was diagnosed that included me, my Dad is also a Type 1 diabetic, and I grew up seeing him take insulin and check his sugar…..but that was it. 

I truly didn’t know what Type 1 diabetes was.  I thought he took a shot of insulin and that was it, that it was “fixed.”  It’s so important to talk about it whenever you can, so that others will know the symptoms and more about Type 1!

Our first encounter with the JDRF was in the hospital, our nurse came in with the bag of hope backpack.  I sat near Justin while he slept looking threw everything, scared, overwhelmed, and sad for my son. 

After the shock of everything started to wear off, I decided to start a walk team, and we did our first Walk to Cure Diabetes in March this year.  It was great for Justin to have friends and family supporting him!  We all enjoyed the walk together and the kids had a blast with all the activities going on before and after.  We are already looking forward to next years walk! 

It's hard as a Mom to not be able to fix this for him, I want so bad to take it away so that he doesn't have to deal with it.  That's why I choose to be involved with the JDRF, I can't cure him alone! Being involved shows him we care. And we aren't giving up on finding a cure.

We try to make it to as many JDRF events as possible, for me I love meeting other D-Moms, we all just have an immediate connection and understanding of each other, we’ve all felt the same emotions, have the same concerns, and have a need to talk with others who just “get it”.  Its also nice that were not stared at when checking sugar or injecting insulin….were “normal” for a few hours.

Justin loves making new friends who have diabetes, it’s nice for him to know he’s not the only one, I mean he knows he’s not, but sometimes its hard. I absolutely loved watching him zooming around the ice at the back to school event in August with some new friends.

The JDRF gives us Hope for a world that will one day be free from Type 1 Diabetes!

Our family is so thankful to everyone who supports the JDRF, all those who are here today, and those who can’t be here.  Support is what keeps the hope going that one  day we will have a cure and that Type 1 will become Type none!

THANK YOU!!!!!!!!!!
 

One year into this thing called Type 1 Diabetes

Today we are celebrating, not that Justin has Type 1 diabetes but that he has been amazing this last year.  He is our little hero, everyday he reminds me how tough he is!  

When I first heard the term "diaversary" I was thinking why would anyone celebrate that?  But then I realized your not celebrating the fact that you or your child has diabetes, but that you lived another year and didn't let it stop you!  I knew I wanted to make this special for Justin, he has just been such a trooper this last year.  So I planned a trip to Legoland :)  He has been begging to go for a while now.....I kept telling him maybe for his birthday (which isn't until May) So we told him we were getting up early to drive to a new mall near Orlando....I told him there was a cool kids area to play in & he was super excited about that.  Oh boy was he gonna really be excited about the play area we were really going to :)

This video is when he found out what we really were gonna do for the day:

We had so much fun there, Justin kept telling us were the best :)

We also went to the Ford EcoBoost 400 again this year......we needed a redo & it was awesome!!  Last year at the race was when I knew with 99% certainty that Justin had diabetes.  I couldn't even tell you how many trips to the bathroom we made.  Our seats were in like row 30 or something like that, Chris and Justin would no sooner get back and he'd have to go again.  The moment that really just hit me, was when our friends came over to say hi, Justin could have cared less, he was laying on Chris so lethargic and not feeling good at all.  That's just not like him at all.  We left early because he just wasn't himself at all, the drive home took almost 3 hours.....it should be about 1 hr 45 minutes.  We kept having to stop to he could go. I never posted any pictures from that race, #1 we ended up at the hospital and that was the last thing on my mind & #2 when I did think about it afterwards, I realized how awful Justin looked....he was a skeleton!  :(  He fell asleep on the ride home, which now I know he could have easily went into a coma from his sugar being so high.  I know we didn't know, but looking back on how easily things could have turned really bad scares the crap out me!  I am so thankful that we have our Justin and he is doing awesome!  This photo makes me so sad, we didn't know but to think what that was doing to his little body :(  

He drank 3 of these I think.......each with a scoop of sugar :(

The day after that race I called his pediatrician, and we were being admitted early that afternoon.  I remember crying at the Dr's office, then I was fine all day until we got up to the floor and he was in a room, I was looking at him sitting in the hospital bed and I just lost it.  I know we need to be strong for our kids, but I couldn't keep it in.  In that moment Justin told me "Mom, come get some Justin lovin' I'm OK you don't have to cry"  He has been so strong!!!  Those next few days were some of the hardest days I've ever had, nothing can prepare you for learning that your child has a chronic lifelong disease. 

These pictures are from this years "redo" :)  Awesome time, and we ran into the same friends & Justin was thrilled and they kept each other busy for 1 1/2 hrs waiting for driver intros LOL  Fun times!!!

Loving the Pit Passes.....

Having a blast this year!!

Justin on the start/finish line :)

Over the last year, I have found strength in myself.  I guess it's true that you don't know how strong you are until that's the only choice!

I look forward to sharing more with you over the next year.....Thank you for all the support!

Lots of emotions lately

I'm not sure why I've been so emotional the last few weeks.  I'm thinking its because the one years mark is only a couple months away now.....on one hand  the past 10 months have flown by, the other it seems like we've been doing this forever already.  

He's been running high again so off the email with numbers went to the Dr again. He's growing so much lately, gaining weight and getting taller, so I'm sure his doses need to be adjusted.  

He's been down to the clinic so much this year, he usually checks at most 2 times a day at school.  But he's going to the clinic 4-5 times complaining of stomach pain, which is fine because that is his main low symptom, but when he checks he's not low, he's usually on the higher side.  This is so frustrating to me, I've had the boy who cried wolf conversation with him.  I want people to take him seriously when he says he doesn't feel good.  So I'm honestly not sure if he's doing it to get out of class, or that he really doesn't feel good.  He hasn't felt different when he's high yet, I always ask him, but he says he feels fine.  So I'm wondering if maybe he's having the same symptom as his lows......this just sucks, everything you have to do to raise a kid plus all this diabetes stuff is honestly enough to make you lose it! I swear some days I am so ready to just quit my job and home school because I'm so frustrated. Its so mentally exhausting!  The stress, the worry, the guilt, everything about it.  

I try to be positive all the time about it, but some days the littlest thing will make me want to cry.  Seeing older kids hanging out at the mall makes me sad because he will have this extra worry that his friends most likely won't.  When I see kids his age just eating whatever, cookies, candy, it makes me sad because he has to count everything he eats, and yes it's routine for us now, but to think that is his life forever, just tears me apart.  I worry about him so much, more than ever before. 

I hate the part of me that doesn't give a crap anymore, I just don't have much sympathy.  I hate when people complain that their kid has to get shots at their checkup, or a finger stick, and how horrible that was.  Well welcome to my life, where its not the nurse at the dr's office who's inflicting the pain. I have to hurt my child on a daily basis.....yes he doesn't complain, but once in a while he'll say the shot hurt or we poked his finger and its throbbing for a while.  It sucks! I just want to say..."Are you seriously whining to me about that?" At least you can bribe your kid with ice cream after.....for us that would just be another poke!

Ok enough of my rant LOL......



So me and Justin volunteered for the JDRF this last weekend, and we had a lot of fun! We met some new friends, and helped raise money for our #1 cause!

Soccer is going good for Justin!!  He still goofs off a little too much at times, but he's having fun!  He's had one low already, even though he started at a good number, it was a practice, but it still sucks that he's watching everyone else play, while he has to eat something and wait to recheck.......

I'm not sure I'll make another post before Justins 1 year diaversary, I will probably be working on that post for at least a couple weeks before I publish it.  And while I'm not looking forward to that day, I'm sure I will be extra emotional, we are planning a super surprise for Justin that makes me happy,  I'll only divulge that info after it happens  :)

Back to school he goes!

Whew!  What a fun summer!  We had so much fun these last couple of months, Water parks, vacation in the Smoky Mountains, camping, hanging out with friends.  

Did diabetes stop us from having fun? No way!!  Did it try? Of course!! 
That's what diabetes does best, throw curve-balls  But we take it one day at a time, that's all we can do.

I was so happy that Justin had a great summer vacation, and that day camp went great.  It still amazes me that the staff at school and camp is so grateful that I am prepared for everything.  I only do what I feel is necessary, the ultimate goal is to keep Justin safe at all times, and if that means having a stash of snacks/juice everywhere well than that's what I'll do.  The DOC (Diabetic online community) has been such a huge help to me in preparing for  practically every situation, waterparks, school, camp, you name it.  Someone has been through it and is ready to tell you what helped them.  I can't imagine someone dropping their child off to school or camp without any of that stuff readily available. I needed to know that if he needed a snack before swimming it was there and preportioned 15 carbs, not expecting staff to come up with something.  Or if he's low, expecting them to have stuff on hand.  I don't leave my house without any of that, so why would I just drop him off with nothing.  (Not that I haven't forgotten stuff and had to turn around and go get it LOL) But you get my point.  On that note, I absolutely love the staff at his school and camp.  They will call me as many times as needed during the day, which makes me feel better, then I'm not at working wondering whats going on with him.

This is how we prepared for school on top of all the usual supplies.  Restock the clinic kit, and classroom kit:

So Justin is super excited about 3rd grade, he was thrilled that he got Mr. Earle!  He's known Justin for a couple years now, when Justin was in 1st grade his classroom was next door, and they became friends.  So now Justin keeps telling me that Mr Earle is his "teach-friend" LOL....I keep reminding him that he's the teacher now, then a friend and he needs to listen to him and do his work.  This is his first year having a diabetic student, we prepared him with a classroom kit, and some reading material as well as talking with him about it. He didn't seem nervous about it, and was super receptive about everything, so I'm not worried about it.  First time for everything, right.  First day of school Justin has a low before lunch, not a bad low, enough that he didn't feel good and went to the clinic to check.  Teacher was either like "crap, already?!" or "Thank God Justin knows when its not right" LOL.....Nothing like that happening 2 hours into school the first day.  I gave him a little extra at breakfast today and that seemed to work, no lows and lunch number was great!  Will that work tomorrow? Maybe.....Maybe not. You just never know.

Back to school is such an exciting time, new clothes, new supplies, etc.  But for parents of a child with Type 1 diabetes, it is a scary time.  That means new teacher, new kids in class, possibly a new school and new people to educate.  Its stressful!  This was Justin's first year starting the school year with diabetes, but he was diagnosed about 3 months into school last year.  So I wasn't worried about new staff or anything, but its still a stressful time. Trying to remember if you thought of everything, and worrying about him all day.  

Aside from the medical part of this, the severe lows & complications, one of my biggest fears is Justin being excluded from stuff or picked on because of the diabetes.  Honestly kids can be so mean, and I just worry about that. However Justin is awesome about all of it, he doesn't try to be secretive or hide anything, and he'll tell whoever about it.  It's funny cause whenever its bothering me or on my mind, he will do something that makes me think, it'll all be ok.  The other night we went out to dinner with friends and when dinner came and Justin needed his shot, he says to his friend "Hey, you wanna watch me get a shot?"  Of course the friend is like "Yeah!" LOL....Boys will be boys, I just laughed. 

On another note, I was thrilled when I received a call from our local JDRF Chapter a few weeks ago.  I was thinking about calling her and asking if anything like this was available, but I figured it was too soon after Justin being diagnosed, so I decided to wait.  Then within a week, I got the call!
I was asked if I'd like to join a team of 8 D-Moms, doing outreach and making calls to new T1 families, letting them know about JDRF events, and being an ear for them.  She said I know it's only been about 9 months since his diagnosis, but from what I read on facebook, and your blog I think you'd be a wonderful fit :)  How awesome is that?!  I was thrilled that she thought of me, of all the D-moms she meets!  We are looking forward to ice skating with the JDRF this weekend :)  Although I'm not sure how much actual skating will happen LOL

We are looking into getting Justin a pump, he has expressed interest in it. The payment plan is affordable, but not sure how were gonna do the year after when our deductible starts over again.  The cartridges and infusion sets are expensive!  And are a separate deductible from our prescription deductible that the strips fall under...so we'll see.  I know everything will work out when its supposed to, we just gotta figure some things out!

Emotionally Exhausting Day!

As usual we had a busy Saturday.  We started the day at the art museum with friends, then lunch, trip to the Scout shop to get his Bear stuff, then home for a little while. Then we ventured out for dinner, and to get his school supplies.  

Well diabetes has been a big PITA today!!

High numbers all day (no change in his food or the way I dose or count carbs!)  Then we get to dinner and he was playing and coloring before the meal came, well he was touching the syrup bottle on the table. We always use a alcohol wipe before testing, well apparently I didn't wipe enough because this happened:

So of course we retested right away!  Made sure to wipe the finger off really good, and it was better.  Always gotta retest!  If I had given him insulin off of that reading he most likely would have went way low, after dinner.   

He has had higher numbers again today all day today, and a few higher numbers the last week or so......it seems that's beginning to be the normal so after tomorrow I will upload and send the Dr more numbers.  Change the dose again.  Its barely been a month since the last change, but Justin has been growing like a weed, gained 2 pounds in the last few weeks.  He's now officially 1 pound more than this time last year before the diabetes started.  Only took almost 9 months to get there!  And he's definitely taller......or I'm shrinking.

I really hate these days, its just so frustrating!!  Dammit D, please stop wrecking havoc on my kid & my emotions!!!  It makes me so annoyed, there goes his under 7 A1C!!  I know its not a grade on our parenting, but it sure feels like it, his last visit to the endo was fabulous and I don't want to screw it up!  All these crazy numbers and made be double think waiting till October to discuss the pump...maybe a phone call to the endo is in order, just to see if we can start the process sooner......even though I'm worried we won't be able to afford it anyway, stupid insurance. 

We shall see...............

I'm tired of your crap diabetes.....

Ugh! Where do I start?  

I'm just feeling extremely overwhelmed the last few days.  I've been home with Justin for the last couple days, first day was high numbers, and correcting all day.  Justin is a picky eater and pretty much will eat the same thing every morning for breakfast, a gogurt, waffles and bacon, with the carbs exactly counted at 45.  So why some days he goes low, and same days he's high after makes no sense to me.  I guess that's because no matter how much we think were in control of diabetes, it's in control really.  It does whatever the heck it wants!  Sometimes it makes sense, and other times not at all.

Yesterday we had a busy day, all of us had eye doctor appointments, me and Justin went in the morning, hubby after work.  So I knew it was coming because the last couple of years the doctor has said he has a little astigmatism, but not enough for glasses yet.  Well this is the year!  My little man is getting glasses, it's not a surprise since both me and my hubby need glasses. We waited until my husbands appt, and went back to pick out frames.  I hate picking out glasses!  Mine are a couple years old now, and I'll wear them until they are crooked LOL :)  Our eye Dr is great!  Justin asks like a million questions, and he entertains all of them.  He even brought out his remote control helicopter and was showing Justin, and flying it around the office!  

So back to our busy day......eye dr. appts, then me and Justin went to lunch, came home and went swimming for a little bit.  Back to eye dr, and I went to get a haircut......BG good all day!!  Even with a scoop of vanilla ice cream for dessert....

Today, no difference in breakfast but was running high afterwards.....even when the 3 1/2 - 4 hour after breakfast mark hits, when he would normally go low, it was almost 200!  Lunch was down to a perfect 99, then back up into the 300's.  Right now lunch is sliding scale only, so he only gets insulin if he's over 200.  The dr. just increased his doses recently.  So I give it a week or two, and if I see a pattern, I send her the numbers and she tell me what to change. Maybe he needs some at lunch time now, who knows!  Its still super frustrating, so many good days and then a couple rough days makes me so sad and angry again.  I feel like I just need a good cry again.  

I'm already feeling bad about his numbers, and go to refill his prescriptions.  Well I gave our new card and the pharmacist was entering them all in the computer, and apparently the new Rx plan doesn't cover the Novolin N....it suggested to the pharmacist Humalin N....Same thing different drug manufacturer.  But said it would be covered with a prior auth from the dr. So hopefully they approve that.  I know its the same thing, but dammit when your used to one thing, its annoying! Its been 8 months, and I'm ready to scream...Ins is the biggest joke ever.  So many hoops to jump through, just to get these life saving medications/supplies.  Its crazy!!   There really needs to be a better way to get these things.  Justin was expressing interest in a pump....I don't even want to know what that will cost, or what hoops I'll have to jump though for that. I was thinking of calling the dr. to see about getting a head start on the process, but I think I'll just wait until Oct when he goes back.  That will be almost a year, and I'll make sure Justin wants to try that. 

I'm just getting frustrated cause we aren't doing anything different. I count carbs, we weigh food and use carb factors to get a count for foods that are difficult to count, like pasta.  I'm just super annoyed today with diabetes, and everything that comes with it!  I so wish I could just change spots with Justin.  I HATE that he has to deal with this, I'm sure the ups and downs make him feel like crap.  He never complains though...He's a tough kid.  As I'm sitting in my room typing this he came up cause he wanted to sit with me, he's so sweet.  Now he's sitting next to me watching Disney on my phone LOL....He's my buddy, he makes me smile, and laugh when I need it most. 

I know sometime he will be on his own with this, but for now, I'm trying to let him be as carefree as possible and enjoy being a kid.  I let him do as much as he wants as far as his care.  If he doesn't want to poke his finger I do it. He isn't ready to try giving himself his shot, and I'm not rushing him.  I'll ask from time to time if he wants to, and when he's ready he'll let me know.  He understands that he will have to do it eventually though.  

So I have the date for the 2014 JDRF Walk to cure diabetes.  Saturday March 1....So now that I have that, I need to figure out some ways to raise money for our team.  And we would love to have you walk with us!!  I'll let everyone know when I start our official walk page, and you can sign up there :) 


As for now, I need tissues & some rest....that's my life as a T1D Mom.  Sometimes it a great day, and sometimes it just sucks.  

8 Months

Wow, 8 months since Justin was diagnosed.  What a blur the last 8 months have been honestly.  We have still kept up with our busy schedule...school, scouts, activities.  Easy....No, but we try our hardest to keep things as "normal" as possible for Justin.  So here's some numbers...just averages. Since diagnosis Justin has had to poke his finger about 1,200 times to test his BG, and has had about 960 insulin injections!  That is just crazy!!  And not once has he complained...he's my lil' superhero!  

Last night he was low, 67.  But for some reason he was feeling it more than he normally does.  He had a small bag of skittles, and came over to sit with me, he just wanted to be close and cuddle.  Normally he'll just get his candy and go back to watching TV or whatever he was doing (as long as its not running around lol)  In that moment I started to feel so bad again, I wanted to cry, I just held him and let him lay his head on my shoulder.  I told him I'm sorry he has to deal with this, and that he is doing a great job, and I'm so proud of him, fast foward 15 minutes & we rechecked and he was at 101 :)  So of course he says, "Mom, I think that deserves a picture"........I <3 him!!!

 

So I wrote the first half of this post this morning.  Fast forward to 8pm and Justin has had 4 lows today!!!  WTH??!!  We did nothing different, same insulin dose, same snack times....diabetes has it's own agenda.  I got lots of extra calls today from camp.  The director was worried it was something she did or didn't do.  I'm like nope, just diabetes being a pain in the butt!  Each time he treated it and it came back up into range.  Not sure what the heck is going on today, but D better behave, we have scout beach day tomorrow :) 

I love that his camp will call me whenever they check his BG, they always worry that their bugging me, I'm like not at all call as much as you need to :) He's having a great summer, lots of fun!!  

So the JDRF Children's Congress was this last week......I would LOVE to do that with Justin!!  I've read some of the other blogs of those who got to go, it's so awesome!!  Not sure what you have to do to go, but next time it comes up I'd like to try! :)

That's all I've got for now........ 

Busy Busy!!

So the last few weeks have been super busy! 

We got to enjoy the water park, and no rain, yay! LOL  Justin was super happy to have his buddy join us for the day.  I had a waterproof container that I wore around my neck all day, with a spare meter a few strips and some candy in case of any lows.  We did great all day, until about 30 minutes before we left.  We were on the lazy river & Justin said he felt low.  Luckily we were right next to an exit with stairs, so we sat on the stairs and checked.....he was low :(  So he had a few candies, and we waited 15 minutes to recheck, then I realized I didn't have any more strips with me, so I carried him back to the exit closer to the locker where the other meter was, because he was saying he still didn't feel well.  I was scared he was crashing after swimming all day.  But I rechecked and it was fine, just over 100.  So he was just hungry for dinner.....& Tired!  

Great idea! From the D-Mom blogger book..Kids First, Diabetes Second

Riding the waves :)

Justin had his endocrinologist visit recently, and it went great!  His A1C was a 6.9, Dr. was thrilled with that, and said that's amazing for someone in his age group.  I told her we were weighing certain foods and using carb factors to figure his dose for meals that are not easy to figure out a carb count, she was amazed, and kept telling me she wished more parents were like me :) 
So we go back again in 4 months.......just keep doing our best everyday.  Even though its not easy.

 

We had a great time on vacation last week. We visited Gatlinburg, TN in the middle of the beautiful Smoky Mountains.  Justins BG was pretty good on the car ride there and back, the Dr. had warned us he may run high & that its ok....shes so reassuring.  

We were super busy while we were there, and schedule was a little off at times, but we managed.  Had one day where he went low just before lunch, so we treated it and went from 50 to 175....anything over 200 at lunch and he gets insulin, it was close I had a feeling I should give him at least a unit.  But didn't, and he skyrocketed to 440!!  I was freaked out, but gave him a correction dose and it came down, no ketones thank God.  Learn from mistakes and move on......thats the D life.  It was real tough on vacation with different schedule, and eating different places.  But we did it, and except for the one rough afternoon, his numbers were good.  That is why when he gets a 100, we celebrate and do a happy dance, its the little things that get us excited LOL.....

Us enjoying the cold mountain water ;)

The Smoky Mountain National Park

 

 

Frustrated

So we had a busy weekend!  Justin got out of school for the summer last Thursday, so we had a 3 day weekend before camp started.  Friday me and Justin just hung out and enjoyed his first day of summer vacation.  Saturday was the Family event at the water park with the JDRF.  Well mother nature had other plans, and unfortunately the water park couldn't open due to the storms. But we still got to mingle and enjoy lunch with all the T1 families.  

Since we didn't get to play in the water, it kinda messed up Justins sugars for the day.  It started because I gave him an extra snack when we arrived (in anticipation of swimming, and trying to avoid a low).  We gave him a correction at lunch, and it took all afternoon to come down. Was just frustrating, because he wasn't feeling high, but he was sure acting it with the need to go to the bathroom so often and being thirsty.  We went to a movie, and I think he went 3 times........that hasn't happened since before diagnosis.  I was mad at myself, over a snack......ridiculous!  

Diabetes can be so frustrating!!  Its days like that that make me so sad again, I starting thinking about all the struggles he will face in his life with it and I get so angry and just cry.  It really just sucks.  We have a lot of good days, then one bad day make me revert back to zero again with my feelings.  I just wish I could carry this burden for him, I HATE seeing my precious little boy dealing with all of this!!  

Today was the first day of summer camp! Of course I'm super nervous about it, I was comfortable with how things were handled during the school year, and it's all the same people working the camp, but I just worry because they are playing pretty much all day, outside, swimming, just way more active than a regular school day.  I restocked the school with juice boxes, candy, and extra snacks so if lunch is more than 4 hours after breakfast, or before swimming if he needs something.  I will be sending him with a bag, with all his supplies on days they have an off campus trip.  That way nothing is forgotten. The staff at camp is amazing, I hate being the PIA mother, and they are so nice about everything.  I miss the days I could just drop him off quickly, and not have to check what time lunch is, what time swimming is, blah blah.  I miss just walking in saying good morning, signing him in, hug/kiss,love you bye. I just pray every day for him to have an awesome summer, and that D doesn't get in the way of that.  



 

Diabetes doesn't care.....

So Justin turned 8 last Tuesday!  Crazy how fast the years go!  We celebrated his birthday with a pool party, he had a blast.  He and his friends were swimming for 3 hours....taking a break for pizza and cake.  As I always do before he starts an activity we checked his BG, he was at 174, a little on the high side, but swimming brings it down FAST!  It was about 45 minutes after party and swimming started he came to me and said he felt low, and he was at 49!!  So we treated it and he rested for 15 minutes, and we rechecked.  He was ready to go swimming again.  After that pizza was ready, and he ate lunch, and didn't have anymore problems. And because of all the swimming his numbers were good the rest of the day :)  I felt bad because he was loosing out on 15 minutes of his party, diabetes doesn't care that it was his birthday party that he was so excited about.  It didn't really seem to bother him, this is his life now.  But it bothered me seeing him sidelined while his friends were still playing.  

 

My Birthday Boy! 8 Years old!!

So last weekend was our first camping experience. We actually had a lot of fun despite the weather not cooperating at all.  Was so rainy!!  We had a site with electric so we had a fan in our tent, that made it tolerable :) Then we spent the day at Lion Country Safari, a really awesome zoo near us.  Justins BG numbers were good the whole time, and we all had a really fun time!  It's so nice when D cooperates :)  On the ride to the campground we drove past the hospital Justin was in after diagnosis, a flood of memories came back, and I couldn't do anything but smile because as much as this is a life changing event, we are not letting it stop us from experiencing anything, we were off to camp, in a tent! :)

Today I had to take Justin for blood work, he was super brave as always!  Tested for his A1C, which will be the first since diagnosis which was about 14!  So I'm anxiously waiting to hear that at his appt next week.  Also tested for celiac, also an autoimmune disease.  Hopefully both come back good!

 

Brave boy!

Things are going good for us, looking forward the water park this weekend with our local JDRF Chapter!  Justin is super excited about that!! 

I will update again next week after his endo appt! 

Spread the Love - Diabetes Blog Week Day 7

Todays Topic:

As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)




Hard to pick 3!!  I have loved this week, and reading different blogs.  The DOC  has been such great resource and place of encouragement for me.  I don't even think we had left the hospital after diagnosis and I was Google-ing for more information and trying to find stories like ours to have someone to relate to.  I knew he wasn't the only 7 year old to ever be diagnosed, but at that moment it felt like it.  

Today is exactly 6 months since Justins diagnosis.  We are looking forward to a awesome summer, full of excitement, and firsts for Justin!  We aren't gonna let diabetes slow us down!  Our son is a rock star about everything!!

So these are the 3 blogs I connected with most this week, all 3 are new blogs to me!

Queen Mother and her Sweet Type 1 Princess - She and I have kids almost the same age, diagnosed not to far off from each other.

My Diabetic Child- Of course I immediately connected, She also has a Justin that was diagnosed at 7 years old.  My Justin thought that was pretty cool!

Our Life with D-She commented on on of my posts early in the week, and I headed over to read hers! Loved it!



click below to see a full list of all bloggers that participated this week!
2013 Diabetes Blog Week Participants


I can't wait to do this again next year!  Thanks for an awesome week fellow D bloggers!!

Diabetes Art - Diabetes Blog Week Day 6

 Todays Topic:

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!



I'm a scrapbooker!  This is my submission for todays art theme :)

Freaky Friday - Diabetes Blog Week Day 5

Todays Topic:

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)




Ok so I had to google chronic diseases for this one, found a list and I have to say, I'm not sure what we'd rather deal with.  

I mean there were things on that list like hypertension, really? I get that its chronic, but you take a pill, and most of the time that's enough.  Doesn't at all compare to diabetes.  

I'm the kind of person that believes everything happens for a reason, whether we find out why right away or not.   

Yes it sucks having diabetes, and that its a 24/7 job.  But there are much worse diseases, at least with diabetes Justin can still live an active life.  We know so much about diabetes already, and I continue to read and learn more all the time. So from a parents perspective, I wouldn't change a thing.  This is part of Justin, and I don't want to change him. Every disease has it's struggles, and I honestly couldn't say that any of them are "better" than diabetes.  

I'd ask Justin what he'd want to trade for, but he doesn't know what any of them on that list really are LOL!  He knows about diabetes, and in school right now they are learning about the human body in science.  He asks me this morning, "Why aren't we learning about the pancreas at school?"  I told him most kids won't even know that word, and that it's not really 2nd grade science material. He's a smart kid, and can tell you a lot about being a type 1!

Accomplishments Big and Small - Diabetes Blog Week Day 4

Todays Topic:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)


 So I thought about this one all day, Its been 6 months since Justin was diagnosed.  I feel like everything we've been doing to take care of him (counting carbs, checking BG, giving insulin) is just what we have to do, and not really an accomplishment that we have mastered in such a short time.  I'm the kind of person, you teach me what to do and I do it.  That's what were doing on a daily basis.

I feel like our biggest accomplishment is just accepting that our son has diabetes, and adapting to our new life.

It still feels weird when I'm telling someone for the first time that my son is a type 1 diabetic, it just sounds so strange coming out of my mouth.  But we haven't let this slow us down at all.  He was diagnosed Monday before Thanksgiving, so he had some time off of school before going back, but he was back the first day after break.  And we were back at scouts that week, he never missed a meeting because of diabetes.  

We pretty much kept our routine what is what, and just added diabetes into it.  Have been to Disney, planning a trip to the Rapids, he still goes over to play at his friends next door.  

We just are doing our normal, with some added supplies and TLC for Justin :)

It didn't come easily, but I knew if we stayed away from our usual activities it would be that much harder to go back to that routine.  I didn't want to send the message to Justin that he was different and couldn't do things because he has diabetes.  He felt better by the time we left the hospital and was pretty much back to his normal active self, so we had no reason not to do things!

I won't lie, it's so overwhelming at first, and still is at times.  But we try hard to make it so that diabetes is background noise, not the major part of our day.  At the end of the day, I don't want Justin to remember getting a shot, I want him to remember what we did as a family that day, or a silly moment, good memories.

Memories - Diabetes Blog Week Day 3

Todays Topic:

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)




Well at this point in our D-life, the most memorable day is still diagnosis day.  Thank God Justin has not had any bad lows or highs. His lows have been quickly treated and his numbers come back up to were they should be. 

So diagnosis day..........It's tough to think about honestly.  

I knew that Justin was diabetic, before the doctor told me, it was just a gut feeling I had.  I remember being so nervous that day dropping Justin off at school.  I called the doctor just after they opened at 9, left a message explaining what his symptoms were and that I really thought he was diabetic.  I got a call back within 30 minutes, and was told to bring him over at 12.  I left work early and went to pick him up from school.  He was so surprised to see me there, I hadn't told him I was gonna come get him because I wasn't sure when I would be asked to bring him.

As soon as we got to his doctors office, of course he needed the restroom.  They checked his urine, and pricked his finger to test his BG.  Seemed like FOREVER for the doctor to come in, when in reality I think it was only about 5 minutes.  He came in with a sad look on his face (he is usually just a silly guy and smiling & singing) so I knew right away before he even said anything.  He said "his sugar is high", which on his meter, meant over 400.  We were sent directly to the hospital and seen immediately upon arrival.  The rest of that afternoon was a roller coaster of emotions.  One minute were being told he will be admitted to the PICU, the next the endocrinologist says he's ok to go to the peds floor. The rest of the afternoon is kind of a blur.  I remember them checking his BG, a few times after they started the IV.  He was so hungry, and not allowed to eat until all of his blood work was back and the doctor looked at it.  It wasn't till almost 8pm that we got up to a room on the peds floor, he got his first dose of insulin & got to eat finally!!  

And then the crash course in diabetes training began.....................

That's our most memorable diabetes day.

Justin in the ER, still smiling! Love this boy!!

We, the Undersigned - Diabetes Blog Week Day 2

Todays Topic:

Recently various petitions have been circulating the Diabetes Online Community, so today let's pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)



Ok so 6 months into this new life of ours, and honestly our biggest struggle is the expense of all the supplies.  We have decent insurance, and a HSA, that is already used up for the year.  Luckily now we have met our RX deductible.  After its met, things are a little more reasonable but now its completely out of pocket since the money on the HSA card is used up for the year.  

My petition would be written to ??!!  Maybe the governor, I have no clue....  Whoever can help lower costs!!

In searching for any kind of assistance program for diabetic supplies, all I seem to come across is help for those 65 and older and on Medicare........Well NEWSFLASH, Older type 2's aren't the only diabetics!  In fact Type 2, depending on what medication they are on don't need to test BG even close to as often as I test Justin in one day!  The test strips are definitely the biggest expense, and besides the life saving insulin, the most important supply!  

I learned very quick that all of the companies are super quick to send you or give you a free meter, only to be suckered in to buying there super expensive test strips.  There should be some law banning that, or somehow make strips universal in all machines.  

Before deductible, the monthly cost on everything, which is just regular price for anyone tops $400!!!  That is just crazy!  Now that deductible is met cost is about $100/month, much more reasonable. But still when your already on a budget makes things that much harder.  Plus we don't refill everything exactly every month, some things last a little longer than 30 days.  

I am blessed that we have insurance, and are able to pay for these things for Justin, but what if we couldn't, or what if there's a time when we can't afford to.  I have had adult diabetics tell me they would only test 1 or 2 times a day, cause they couldn't afford the supplies.  That is just ridiculous!!  No one should have to put there life at risk over these necessary supplies.  

There definitely needs to be a better assistance program, geared to getting diabetics of ALL AGES, lower cost supplies and medications. 

And that's my rant on that :) 

Share & Don't Share - Diabetes Blog Week Day 1

Topic for today:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?(Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

May 19th will be 6 months since Justins diagnosis.  I have loved his endocrinologist since the first time we met in the hospital!  She has the most easygoing, sweet way about her.  One of the first things she said to me was "He's still your little boy, and he can still do anything" She gets along with Justin so well, when were there she always wants a hug from him, she says he's so sweet.  Justin makes her laugh the whole time, he just chats with her about everything!  We always have had more than 15 minutes with her, she will answer questions, and just get to know us better.  

If there was one thing I wish she could see it would be the simple things like, when we are leaving church and each kid gets to pick a piece of candy on the way out, he can still take one, but has to wait for the right time to eat it, while the other kids are eating it on the way out and he's begging me to eat it now.  Or at school when the kids bring in cookies or cupcakes for a birthday and he has to go check his sugar first, and then we decide if its ok for him to have.  (Most of the time it is fine, and we take the frosting off the cupcakes, he doesn't like it anyway)  But just the sound of disappointment in his voice at times makes me so sad. Just the daily struggle with trying to let him still enjoy things other kids can just eat whenever, and keeping the BG numbers in check.  

The one thing I wouldn't want her to see is that I have complete emotional breakdowns.  I can't do anything but cry. When we've been at her office, she's always is telling me how well we are all handling everything, and for the most part we are.  We are going through the motions really, we have no choice if we want our son to be healthy.  We put on our happy faces and deal with it.  But every so often it gets the best of me, and I feel like I just can't deal with it anymore. I get tired of living by the clock, and making sure he eats at certain times, instead of when he's ready to eat, and begging him at times to eat a snack even though he's not hungry.  But I don't want him to go low, and he doesn't completely understand that yet.  

Basically I'd like her to see how hard we try, and how hard it is to be perfect at this.  Not too much to ask is it? :)

This is Justin with his awesome endo Dr. Damian @ our local JDRF Walk
You'll have to excuse the koolaid(crystal light) mustache LOL

Diabetes blog week

So next week I will have a post each day, based on a topic they give regarding diabetes, and a bunch of Diabetes bloggers are participating. The idea is to have a bunch of different takes on one topic :) I'm excited to see what I come up with!

5 Months & Honeymoon is for sure over......

I've decided I will do monthly updates on here, unless something needs to be said sooner :)  

 The first few months I had a lot more to say, mostly because it was so new, and there were so many emotions I was feeling that I needed a place to vent.  We are now into a routine, and its feeling more normal.  

A few weeks ago I sent some of Justin's numbers over to the Dr. because he was running high for no reason.  She said looks like honeymoon is ending :(  So now the hard part of being the pancreas for my kid.  He's getting a more insulin now, and his numbers have been much better.  

We had a wonderful Easter, Justin was completely thrilled with his chocolate bunny!  I let him have a little piece each day until it was gone.  We learned how to count carbs using carb factors, and weighing the food.  It gives a more accurate carb count, especially when eating pasta, since the nutrition facts on the box are for dry uncooked noodles! Now I know I'm giving the correct amount of insulin for what he's eating, and he's not so high at bedtime! YAY!   This is such a learning process!

Sometimes you get a crazy number for no reason, today at school he was LOW, lowest number he's ever had,  and he ate the right amount of carbs he should for breakfast.  Not sure why, other than they were at the pool in PE, which very well could have cause it.  He treated it, and 15 minutes later he was where he should be. Scary thing is he said he didn't feel funny or anything!  Usually he will say his stomach hurts, and we check and he's a little low.  But he said he felt fine!  YIKES!!   

I felt awful that I couldn't be there for him, and I wish I could take it away from him and deal with all this myself.  I hate that this is how the rest of his life will be, it just sucks!  We definitely make the best of it, we tell him all the time how he can still do anything he wants and we try to make the diabetes the background noise, but that doesn't always work.  But we are trying our best!  

We are excited to go to the JDRF Family day at the Rapids water park!  Justin was thrilled when I told him, everytime he sees a commercial he wants to go :)  We'll get to meet other T1 families, and have a fun day!    The JDRF got a grant that they are using to pay for families with a T1 child or teen!  How awesome is that?!  Looking forward to meeting some new people and having fun!  

Well that's all I've got for now :)