No sleep for the restless

I Read the funniest picture/quote, it said..

"You know your a parent of a diabetic when they grow up and move out and you call 911 when they don't call you for two hours" 

All I can say is dammit . Damn you diabetes. You have stolen my zzzz's forever. Ever miss something so much you want to cry ? That's me and sleep. I don't even remember what it was like sleeping through the night. With every shake or every time I roll over at night I find myself first checking his Dexcom and then the video monitor , if I can't clearly see his chest move up and down... Well now I am truly screwed because now I have to sneak in his room and make sure he is indeed breathing. Sounds silly but this my life. I'm considering investing in a mini mini fridge. Lol not a mini fridge , I want smaller, like one or two bottle size. I can't tell you how hard it is to wake up to the low alarm and have to stumble down the stairs with my contacts (which I am sleeping in every night now) stuck to my eyelids , blinking over an over , making a bottle and then stumbling back upstairs and strategically wedging that bottle into his mouth without waking my sleeping angel. It's a task that happens all to often that I wish I could wake my sleeping husband and just get a quick high five for a job well done.. Although usually when I see him soundly sleeping after waking several times to the low alarm, high alarm, battery alert.. So forth, I more often then not want to high five his face. 

Just sitting and staring at his sleeping baby body I can't help but think he will never get to be completely free. I will be up his ass for eternity .. Like it or not. We are glued together .. Forever. 

Sleep is for wusses anyways. 

Summer with diabetes

Wow. 

So summer is crazy with diabetes. You know that giant diaper bag you pack for beach days or pool outings? Mine just tripled. Feels like I have 20 kids... But I don't I have 3 . One of which has type one diabetes. So I have to make sure I have all of his diabetes supplies, in coolers , not touching the ice or too cold but cool, lol. And of course Backups to the backups of the backups just incase! A huge bag of goodies because when Julien is active his numbers drop. 

We went to great adventure hurricane harbor and I caught his dexcom right before it fell off! I was feeling so accomplished !! Though shortly after when I was bolusing him his PDM wouldn't connect, move closer it kept saying  (i was so close to him i could have been in him!! lol) and sure enough his pod is gone!! I'm wondering where it fell off and what the person who found it is thinking it is!! Haha! 

Such a relief that we have the omnipod though , beach days and the pool are next to normal without having to worry about disconnecting and running high. I've now mastered the art of stickerover usage   lol my baby is so stickered up..nothing is falling off him now!

Plus he can run around naked if he wants !! And who doesn't like doing that! Haha!

The terminator!

My son is a cyborg. I'm good with that. He has barely any real estate left on his miniature baby body but he is getting better everyday because of his "machines". We have him on the omnipod now which is amazing . He seems to feel the site changes much more then before... Which is the one and only down side. He jumps when the needle pushes in the catheter. But doesn't notice it's even there after. His BG's have been so much better. Imagine a baby having headaches and feeling just sick all the time , I feel as if that is the life he was living since September . High blood sugars can cause you to feel very sick and his were always high, with the combination of the omni pod and the dexcom he is able to actually be a toddler. With the warmer weather I have actually let him run around naked! Which seems like a small feet to most but with a corded pump and a baby.. Diaper changes/outfit changes had to be quick as to avoid him noticing that cool thing attached to a 2 foot long rope that has so many buttons and oooo it lights up when you press buttons!

Reality

My life has forever changed. And it's no ones fault. This is my reality.
It's funny how no matter who I talk to , friends , family, acquaintances .. They all give me there support and there love. But that reality isn't quiet there for them until they see his site. It seems like it's not real until they see that needle is his little baby bottom that all of a sudden in the split second .. The "o my gods" set in. I don't know if I myself will ever get used to this new life of ours. One thing I do know for sure is that everyone's understanding does mean something to me. That isn't something I am willing to settle on. I want my family, my friends, and yes even my
Acquaintances to understand and to know the reality behind type 1 diabetes. It is incredibly important to me.
Not one person I have spoken with or to has any idea what type 1 is or even that there is more then one "type" of diabetes. Let me clarify here an now. My not-even-2-year-old is connected to a pump that is connected to a needle that is in his skin 24/7 , (needs to be changed every 48 hours!) he will never grow out of it!! It will never get better! The medicine he takes is life support and without it he would cease to exist. He has a auto immune disease. it just happens. No one knows why or what exactly causes type 1. It is in no way related or connected in any way to poor diet..or Lack of exercise ! It has ZERO to do with type 2 diabetes, he cannot ever just take a pill or eat better!
I intend to be a advocate for my son forever and always and will try my hardest to kill the stigmata attached to type 1 so that all that come in contact with my wonderful boy understand what it truly means to be him. This is my reality.

Diaper bag or Medical supply wasteland

I so miss the days when I opened my diaper bag and all that was on the bottom was half eaten crackers, tissues, or change! Now a days I have lancets, alcohol wipes, test strips AND half eaten crackers, tissues & change ! So depressing. My bag weighs a ton. Why I don't have arms of steel I have no idea! I have to carry with me the entire drug store! Not only do I have the usual diaper bag must haves, but now it's accompanied by the extra test strips, alcohol wipes, extra lancets, lancet device, glucose meter, backup glucose meter, batteries for the pump & meter, everything for at least two site changes .. which means ALOT of medical supply's! A insulin pen and extra pen needles. And my utmost least favorite , as if there is a favorite .. The glucagon. This is the just incase my baby doesn't wake up I have to stab him with this giant needle and pray he wakes up shot.
Cleaning out my bag was a bad idea, enter cloudy day mood.

French frys are the devil

Yup I said it. Not only do they make you hate mirrors or anything reflective that you would be able to see yourself in and regret every last delicious salty French fry. But they also jack the sugar up! Julien is without a doubt on a no french fry diet from now on! Those things are so mean! No matter what time a day no matter before or after bolused he jumped nearly 300 after only a few frys! I'm done having mini panic attacks waiting for a high after a fry! I am this boycotting the frys!!
This could be a good thing, there not really all that good for you or my ass..

To omni pod or not to omnipod

Alright my baby is not even 2 yet an might as well put that scrunchie in his hair. The pump belts are ridiculous!! Not only do I have to change it sometime twice a day because of nap time diaper disasters!! How can pee go upward?! But have you seen the prices? They are $30-$40 EACH after shipping ! So besides the whole fashion No-no.. The summer ... Ugg the summer is coming in a couple months!!! I get nervous disconnecting for bath time.. What about the pool or omg the beach?! Sand?!! And no more feety Jammie's!! What if my son decides to suddenly notice the cool toy attached to him in a handy dandy pouch if he is always zipped in! This looks like a fun cord .. Maybe I'll pull it or better yet chew on it! Oooo the nightmares! So omni pod just seems like a good move for me. What's not to be enticed over? Not only is it cordless, but it's also the "the stabber" so I don't have to be! The video from omni pod is crazy!! So you put it on you like a sticker, and from the PDM (handy remote !) you tell it what to do and it stabs your kid for you!! He doesn't seem to notice besides the one second flinch, but I cry scream ball freak out all in my head everytime we do a site change. So the idea of someone taking over that job, sign me up! Plus no more disconnecting, he could go deep sea diving with it on if he wanted , not that he would he is a toddler but still , he has the option. So I still have more research to do but I am certainly leaning towards omnipod..

The hulk

My son the hulk! We've been battling a cold all week. No one tells you how much sick days change when you have diabetes. Man this blows!
Julien has been a mess! I feel as if I have been covered in boogers 24/7. My ear drums are blown out from the constant mommy mommy. And my emotions are all over the place. The hulk is coming out of him in more ways then one, with those higher numbers and ketones comes one angry baby, your making me angry!!! You won't like me when I'm angry!! Well that part isn't true but he is being quiet mean!
I am having a sort of emotional battle in my head with why him since his diagnoses back in September , I've read this is called "diabetes rage" lol perfect . Now that my baby is sick and seeing how miserable he is makes me so much more bitter. Being that he is baby number three , before he got T1 he got the whole chicken nugget , no need to cut that in itty bitty pieces, no need to be careful with germs either give that snot faced baby a hug ! Not anymore, my lax days are over , not with the nugget - he'll be fine ha! But germs they are my arch enemy now. I can't say eh it will build his immune system. Now I have to be super cautious and hope everyone around me and in our lives will do the same. Because what sniffles are to a non d kid could mean hospitalization to mine. Just looking at his sad face now makes me incredibly sad.
Yet in between the high blood sugars and the terrifying ketones, coughs and boogies, he still finds time to make me look at him in awe. How incredible he is that through the 20 pokes in his blood stained finger tips he powers through it all like a champ ! Strongest baby ever!

A little back story..

Funny how his nickname has been jellybean since birth, and now the idea of a jellybean seems risky. Risky meaning is it worth the higher numbers or not? This is our life now. My sweet baby boy
Julien was diagnosed with type 1 diabetes similar to the way most of us d-moms find out. In some horrific fashion. We were at the beach one day smiling, laughing, and playing. The next we are in the ER and he is at deaths door pounding away. At just 15 months old he had 2 IV's in his itty bitty baby arms, one giving a very slow drip of insulin, to prevent brain swelling (ahhhhh!!) and the next giving antibiotics and fluids to prevent hospital born illnesses and further dehydration.  Lying there lifeless, not a smile or even a smirk for the longest five days of my life.. Getting tested and poked and stabbed with needles every 15-30 min. At admission his blood sugar was at 790 and ketones were through the roof.. It was a long week , his recovery took time, but he came back to me, just the same as before. Well almost the same, now we have a pump attached to a tiny needle that's in his tiny tooshie, one that needs to be changed every two days. Which totally sucks. The first time we put that needle in I changed, it was so horrible, an unimaginable kind of horrible. We were told he can eat anything and do anything that a non-d child could. We just need to give him the insulin his body no longer produces on its own. I've found that french frys,pizza .. Bagels.. Sugary cereals are a once in a blue moon type of food, it's just not worth the crazy baby mood. Whenever he is higher he is like 3 terrible 2's all bottled in one! Im learning so much that i had no idea about, learning is definitely the right word.. its a uphill battle. A life long one. He is the strongest baby ever , he amazes me everyday, I poke his baby fingers 13 times every day and night, yep I have to wake a sleeping baby every night! Your traumatized at first but I can say honestly 5 months later , I am just happy he is alive. I was given a gift, one that I will never take for granted.
Type 1 has changed our family , in away not one of us will ever forget.
So why am I telling you all about my personal life? Not usually my thing.. But I'm here sharing for more then a few reasons. Maybe my story can help another family , maybe I can spread some awareness . Honestly I knew nothing of diabetes.. I can't tell you how many times I have googled to find out simple things or big things from where to buy a insulin pump pouch to what to do on sick days?! Besides the help from my wonderful endo , pediatrician & nurses , i have found so much help in multiple blogs and the CWD forum, and JDRF.
Needless to say, maybe I can meet other dmom's out there or just reach out and spread awareness!