Justin's Story

Thursday, October 30, 2014

Halloween with T1D.....Yes Justin can eat candy!

One of the first things alot of newly diagnosed families think is "How will my child enjoy holidays such as Halloween, when so much candy is involved?"  I will admit at first its tough especially when on MDI (multiple daily injections) My advice is to talk to your childs Dr. about it and how you can dose for an extra treat.  I brought that up very early on with Justins Endo because he was so hungry and I felt like I needed to give him more food and it was especially tough to stick to 45 carbs at dinner.  So she gave me a starting I:C ratio for him.  

Justin is almost 2 years into this new life, and I refuse to let diabetes ruin any of the fun of childhood for him.  Yes it puts a damper on it, who likes getting poked EVERDAY!!  But Justin is handling it as well as can be expected, its part of his life and he does what he has to do.  

**Before I continue, I am not a Dr, before you change the way you do anything with your childs care speak to their endo team**  

I am just sharing how we handle the candy overload.  

Last year, Justin ended up low from all the walking around and ended up needing some of the candy.  But normally I will separate the candy (faves for treating lows, everything else he likes, and the junk lol)  

Then I will let him eat a piece or two each night with his dinner.  It just gets added to his carb count for the meal.  It makes him happy to actually enjoy a piece of candy without having to rush and eat because he's low.  

I don't deny him anything within reason because of the diabetes. 

I've added a carb count sheet for candy to make it a little easier,  mines printed out and hanging on the fridge.  

                                                            HAPPY HALLOWEEN EVERYONE! 

Saturday, August 2, 2014

The Rapids Waterpark with the JDRF!

What a fun day!!  The JDRF treated us to a day at The Rapids waterpark for their back to school event! 
I got to talk with the Dexcom rep and I'm gonna get him our insurance info and he's going to check if they will cover it.  I'm not sure Justin will wear another site, but if its covered we'll try!  And he already thinks it's cool because Ryan Reed uses one :) 
We got to see  alot of our old friends, and make some new ones!  A few of the ladies I had talked to already on facebook, or on the phone or text LOL  So I felt like I already knew them!  I was so happy the boys all got along great and had a blast! 
The boys were watching out for each other, they came back over where we were sitting when Justin felt low.  The boys were even off on their own for a while....Got a little nervous, but then they floated by on the lazy river :)  Justin loved having freedom to go off with his friends, I felt comfortable enough that they were looking out for each other and would come get us if something was wrong. 
I totally enjoyed getting to chat with other D Moms all day, It's nice to talk on facebook and such, but its really awesome to talk in person!! 
Blood sugars were all over the place, and ended really high.  Gave a correction and 2 hours later....low.  Can't win sometimes!  Today was site change so did that when we got home, and BG was good after dinner, 111.
Can you spot the pumps in the picture lol..........

Saturday, July 26, 2014

Proud D-Mom Moment

So on Friday Justin had a fun day at camp, as usual. They went to a big arcade place that had lots of other things besides the arcade to do.  Then when they got back to campus they went swimming.  Well while they were swimming a couple of boys were picking on Justin, saying he had dia booties, and other nonsense.  Well Justins buddy wasn't having it and told the camp counselor.  Well she really got those boys and put them in their place, I'm so happy that she stood up for him.  It could have been so easy for her to just tell them to stop and walk away.  Your probably wondering how the fact that kids picking on my sweet boy makes me proud.  Well that part doesn't at all and makes me quite angry, but I'm happy that his counselor was there to stick up for him.  Well after she put them in their place she turned to Justin and asked him "Is there anything wrong with you?"  His response "NO".........That is absolutely the correct answer!!!  He makes me so proud!!  We try so hard to help him realize that yes he has to do all these things alot of his friends don't, but he's not different, and he can do anything he wants.  Sometimes I wonder if he believes that, and I'm sure he doesn't always especially if its a rough D day.  But in that moment he made me so proud.  When the counselor was telling me what happened I had tears in my eyes.  I'm honestly a ball of emotions ready to explode sometimes, any little thing just makes me want to cry.  Its gotten easier over the last year and 8 months, but the emotional side of this for me still gets to me so easily. 

  This is absolutely how I feel about Justin :)

Sunday, June 22, 2014

Ping Pumping!

Justin has been pumping insulin since Thursday June 19.  It has only been 3 full days but we are loving it!!  Justin is just thrilled not having to get 3-4 shots a day!  He doesn't mind having the pump on him, he seems really happy about it actually.  He calls it his robot pancreas LOL!  Site changes and prepping the pump are super easy, I asked Justin if he wanted me to get the Dr. To give us a Rx for EMLA cream, and he said no, he's a tough guy & it doesn't hurt that much. 

The first day his numbers were excellent, which surprised me because I was expecting crazy high numbers.  This weekend he's had some higher numbers, but when I bolus him 2 hours later his number is great.  So we'll see if the Dr. Adjusts anything on Friday. 

We both LOVE the remote!!  He loves that he can hop up to the table to eat and I can bolus from the kitchen LOL  Its the little things :)  I love when were out eating I don't have to get out the insulin pen, He can sit across from me and get his dose.  Its really great so far! 

Other than a few high numbers, its been smooth sailing for him so far!  He's enjoyng the freedom from the syringe & strict NPH eating schedule.

I'm so happy for him to finally be pumping,  he's just as happy......if not more!

Saturday, June 14, 2014

Hello Ping!

I am so excited!!  Justin finally is hooked up to the Animas Ping pump.  It was a bumpy road, but we made it here! 

We started talking with his endo about him going on a pump at the end of last year, but decided due to ins and deductible we would wait until after the new year.  Well new year and we were without ins, and I was trying to get Justin on a plan offered by the state called Healthy Kids, its available to any kid :)  Well the application process took forever and I never recieved anything saying he was accepted, what the payment was, nothing.  I logged into the website and it said active and my payment was late, so I paid.  They had enrolled him in a plan for medically needy kids and we were assigned a "nurse"  Well over the next 7 weeks, I left at least 10 messages for this person to call me so we can set up his endo appt and get his prescriptions.  No return call....I had only spoken to someone at the very beginning to set everything up.  In order for him to be on  this plan we had to leave the endo he was seeing that we absolutly love, and now I couldnt get a return call and appt with new endo, very frustrating.  We decided after I talked to a friend on a different plan who was still seeing the endo we love that we needed to switch him over to that plan.  My husband made a call to switch and let them know that we weren't receiving any call backs and he needed to be seen asap and they made the switch available as of the first of the current month, instead of us having to wait till the next. 

As soon as I had the ID number I called his endo to make an appt, and got one almost immediatly and it happened to be an appt my friend had just cancelled LOL...it was meant to be.  Finally the wheels were turning again.  We had to make another tough decision in switching to the new plan, his pediatrician was not on it......it was not easy but we see the endo more now, and the new pediatricians office is wonderful.  Things were finally working out after months of constant worrying about how we were gonna pay for his prescriptions, and when he would see the endo. 

At that appt we started the pump paperwork and It was quicker than I expected, we had the pump 3 weeks later:)  And it was killing me on the counter waiting to go to pump training 2 weeks later.  So we went last Thursday June 12 for training and we have saline in the pump for this week.  The pump is super easy to use, which is a huge relief because the video that came with it had me so worried!  The trainer said all the pump videos are like that, and they should make a beginner video  that doesn't have info overload.  I love the remote with the pump, its easy to enter carbs and BG and give a bolus.  Justin LOVES it too!  He keeps saying I can't wait until we have insulin in it!  Me too kiddo, me too!! 

I'm prepared for a few weeks of craziness while trying to adjust all the basals and everything.  Should be fun, NOT!  But totally worth it!!!!

Justin is so excited about it, and that makes it all worth it, instead of 9-12 shots every 3 days it will be 1 site change!  That right there is just awesome! I can't wait to get started next Thursday doing the real deal :)

Here's my happy pumper & his new ID bracelet from American Medical ID, one of Ryan Reeds sponsors of course, he decided he wanted a bracelet because the necklace would catch on his hair sometimes and he picked this one out :)

Sunday, May 18, 2014

My favorite things-Day 7 Diabetes Blog week

My favorite thing about blog week is finding new blogs to read!  When Justin was first diagnosed, I'm not even sure that we had left the hospital and I was searching for others with children about the same age going through the same thing.  I found comfort in reading others stories, knowing that I wasn't alone in my feelings.  I decided to start my own blog very soon after he was diagnosed.  My original reason to start blogging was I just needed a place to get my feelings out and tell our story, hoping maybe someone would read it and find comfort in the fact they aren't alone. 

There isn't a specific blog post from this week that stands out to me, I really enjoyed all of them that I've had time to read.  It will take me a while to get through them all!  I have met some great ladies through blogging, and I wouldn't have found those connections otherwise :)   

Can't wait until next years DBlog Week! 

Thanks for reading and following me!

Saturday, May 17, 2014

Snapshot Saturday-Day 6 DBlog week

Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I think I'll leave out the written words and just let the following photos speak for themselves..............I will say that I picked more positive photos, rather than finger sticks and shots....this is how were living with T1, trying to make the best of it! 

Friday, May 16, 2014

Tips & Tricks-Day 5 Diabetes Blog Week

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

Were still fairly new at this, right at 1 1/2 years, although your pretty much forced to become an expert overnight or at least that's how it feels.  I'm not sure what I do that makes it easier other than the way we have things set up and do things works for us.  

I keep a paper on the side of the fridge right above the food scale with some of the most common food items and their carb factors, so I don't need to go searching for it.  

I still carry all of Justins things when were together, I have a nice big purse with 3 sections, one side is mine, one is for his stuff, that makes it easier for me so If he needs to check I'm not digging around a huge pit looking for the meter, or a bag of skittles if he's low.  

I also have the calorie king app on my phone to look up carb counts on the go.  A glucagon app, that will take you through the steps to practice, just in case you need it. And a BG log on my phone.

Not sure how helpful these tips are, pretty basic but it helps me out :)

I can't wait to read what others do!! 

Mantras and More-Day 4 Diabetes blog week

Today we are getting back to the positive with our topic Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets you through a hard day? Or, more specifically, a hard diabetes day? Something positive you tell yourself, or mantras, or what you fall back on to get you through. Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

What gets me through a hard day?  Knowing that I'm doing everything in my power to help Justin and sometimes diabetes is just a pain in the ass and has nothing to do with anything he or I did.  

Since he was diagnosed I just take it one number at a time, if its high correct, if its low treat....and move on.  Even though when I see a high number or a too low number I'm thinking dammit all I don't let on to Justin that I'm annoyed.  Because I don't want him thinking he's doing something wrong or I'm mad at him, I'm mad because diabetes is being a jerk to my kid. In the beginning he would get anxious when he seen a "bad" number and I had to keep telling him its ok, we have the insulin to bring it down, your fine. Now we both roll it off and move on.

I try to remember that were doing the best we can and its not easy to control T1D, And if it was a particularly rough day a good cry may be in order.   

That always helps me feel a little better..........


Wednesday, May 14, 2014

What brings you down-Diabetes blog week-day 3

The hardest part about caring for a child with type 1 is the constant worry.  Some days its enough to bring me to tears. 

I'm always worring even if it doesn't show....

Did I give right amount of insulin?
Did I pack him enough snacks?
Will he remember to eat the snacks when he should? 
If he's low will he notice in time to treat before passing out? 
Will he finish his lunch?
Dammit why is he high....or low?

And a million other thoughts that run through my head on a daily basis......its so mentally exhausting!!!  Justin worries about it I'm sure, but I dread the day he has to do everything on his own.  I hate that my sweet little boy will have to deal with the mental exhaustion as well as all the pokes everyday.   It just gives me one more thing to worry about.

Tuesday, May 13, 2014

Poetry Tuesday Diabetes blog week-day 2

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

                                       Diabetes stinks
                          The highs, lows and in between
                                    We want a cure now!

Ok so I wrote a haiku.......lol I'm not much of a poet, so you get what you get on this topic haha :)

Monday, May 12, 2014

Change the World-Diabetes Blog Week Day 1

I participated in the last year, and am super excited to do it again this year! 

Today's topic is-

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

I would have to say that Diabetes Awareness is my thing....it really annoys me when people use diabetes as a joke.  Or just don't know anything about it, but try to tell you what to do anyway.  

I try hard to brush things off and most of the time I can, but It still bugs me and I think to myself how stupid can people be?!  I realize that before diabetes was part of our daily life I didn't know that much either.  But I wouldn't joke about it or tell someone with Type 1 what they should be doing.  I try hard to be understanding but I feel its the same as other diseases, if you don't know about it, you shouldn't say anything.  

I watched on youtube a recent SNL skit, that made fun at diabetes and needing an insulin pump.  I found it highly offensive.  There's nothing funny about my kid needing to poke his finger many times in a day and getting 3+ shots everyday. 

Sunday, April 27, 2014

Tired, exhausted, fatigued, drained, burned out....yup that sums it up lately!

Most of the time diabetes it just background noise in our lives, we deal with each number and move on.  I'm sure its a combination of things making me feel this way.  I found out I have a herniated disk in my neck at the beginning of April, I had been in awful pain and wasn't able to do anything, including help care for Justin.  I've been going to physical therapy and that seems to be helping, I'm functional again, but being super careful to not aggravate it again.  

We were supposed to go to the endo at the beginning of March, but we cancelled because I got Justin on to a plan offered for kids by the state.  Well when I spoke to our "RN" case manager at that time I was told that he would have an appointment with the new endo in either April or May.  I put RN in quotes because I'm not sure they really are nurses since I say he has Type 1 Diabetes, and I'm asked every time what medication he is on.  As a nurse you should at least know that Type 1 is insulin dependent, I'm not asking a lot here!  So were now at the end of April and I've left at least 5 messages regarding when his appt will be, and that were running low on supplies.  No call back!  So I was talking with another friend who is on another plan offered through the state, so I decide I want to switch then we can go back to the endo we were seeing.  I call, tell them what I want to do, she puts me on hold and comes back really quick....says I have to call the plan hes on not the main number.  Which means calling the same number that won't return my calls!!!!!!!!!!!!! I am beyond frustrated.  I have paid 3 monthly premiums to them and have yet to see a dr. or get prescriptions.  I'm still buying strips, syringes, pen needles, and now were really close to running out of one of his insulins and its about $150 for that.  This is beyond ridiculous now.  I will be calling first thing tomorrow morning, again.  So that has been a huge weight on me lately just worrying about getting everything.  I know he needs dose changes and I've been trying to adjust a little bit at a time, numbers have been crazy either way high or he's low, I'm just done.  He's been ready for a pump, but since we haven't seen the new dr who knows when that will be.  

I also feel lately like I'm having an overload of diabetes stuff.....I joined some groups on facebook, and while I love the support.  I get depressed reading all the newbies posts it just makes me angry and reminds me daily of how awful it was at first.  Don't get me wrong I love social media and the connections I've made.  Just seems like lately things are getting to me a lot more than usual.  

Lets take yesterday for example: 
started the morning at 256
before lunch low 59
ate lunch checked before i gave insulin for a cookie he was at 108
still going up from lunch i dosed for the cookie
get home 356...wtf diabetes wtf

It's been like this a lot more lately and its beyond frustrating.  Today was much better but we were outside and walking around a lot today.  

I get mad that this is his life, I hate it and it makes me sad and so angry at times. 
I find myself constantly worrying about his teenage years, and beyond.  I see older kids at the mall or wherever and I think about him and while I know he will be fine, I hate that he has to deal extra thing that his friends don't have to worry about.  I worry if he'll have supportive friends that will learn about it and understand what he's dealing with so they can help if needed.   

 I get to feeling like this on and off since diagnosis....It goes away but always finds a way back to me.  I can handle the medical side of diabetes, but the emotional side just exhausts me.  As if raising a kid isn't hard enough.....

Sunday, March 2, 2014

Busy Busy!

We have been super busy the last couple of weekends! We went to Daytona for both the Nationwide and Sprint cup races.  We had an amazing time, we got to be there to suport Ryan Reed in the Drive to Stop Diabetes #16! Justin loves the races and were so happy we can enjoy it as a family :) I have good memories of going to the races when I was younger, and I couldnt wait till Justin was old enough to enjoy it! If you've been to Daytona International  Speedway you know its lots & lots of walking! Overall diabetes behaved,  he had 1 stubborn low of course it happened to be while we were at the drive to stop diabetes tent......but took care of it and continued on having fun. 

This weekend was our JDRF Walk to cure diabetes!! It was a great success! I was so happy that his Grandma & Grandpa came down to walk with us! We know its a long way and truly appreciate it!  We had support from staff at Justins school and friends and family!  The ladies from his school made shirts with Justin and the other kid from his school that has T1.  I think that is just AWESOME!!!  It was a fun time, I love the support at the walk. 

On other note we got Justin on a cheaper health plan, I still need to call tomorrow since I never got anything in the mail and I have no clue what's going on.  But I believe were going to have to see a new endocrinologist & that makes me really upset.  I need a break with the financial part of diabetes.....its an expensive disease, and with a big deductible we just cant continue this way.   But we LOVE his current dr.......its really so frustrating.  I wish I was a millionaire and didnt have to worry about the money.  I realized he wont see her forever because in 10 years he wont need a pediatric endo, but were comfortable with her and how she handles things.  Her staff is great, my calls or emails are always answered in a timely manner. My biggest worry is seeing a new Dr and trying to change what were doing and not being as easy to reach and send in numbers to get dose changes.  I really hate that all the supplies we need are so expensive that I have to be in this position.  Im super worried about it.  Diabetes is unpredictable enough Im dreading changing Drs :( 

Besides that things have just been going.  Justin is still in good spirits and no more break downs.......although I know it wil happen again. 

Sunday, February 2, 2014

The first & definitely not the last...........

Things have been just going here on our end.  We take it a day at a time.  Justin has been his normal silly self, except at school, lately him and his little group have been a little extra crazy lately, enough for one of the ladies in charge to say something to me. 

So me and Justin had a talk on Friday night, I asked him whats going on lately? Your normally great in aftercare......

I was honestly expecting an answer along the lines of were daring each other or something ridiculous like that. Instead he did something that I was completely not expecting from him, he didn't say anything at first just looked at me his eyes welling up with tears, my first thought was crap something bad happened at school or he's being bullied.  Instead with tears in his eyes and a mad face he just said "DIABETES.....I HATE MY DIABETES!" 

All I could do was hold him tight & cry with him while he told me that he just wants to be a normal boy, and he's mad about it and hates everything about it! We cried together for nearly 40 minutes.  He was sobbing in my arms & I could feel his hurt for the first time and my heart broke even more for him.  

He has never let on that it bothers him so much, I mean I knew it had to in some way, but he never showed it or when asked about it said he's ok. 

I took his acting up as just trying to fit in more, which is part of growing up anyway but with this extra thing called diabetes he feels more different.  I told him that he can't keep his feelings bottled up in his heart like that.  He needs to talk to me or Dad about it.  I said this does not excuse the behavior but I do understand. We agreed that he'll talk about his feelings more.......we shall see how this goes tomorrow back at school.  

I told him that God gives us things that are really hard to deal with because were strong enough, even if we don't think we are.