When Life Throws you a curve ball....

I titled this in such a way due to the fact that you would never believe how much stuff you do in your daily life on a whim... I will definitely say sometimes these whims suck with Diabetes... Some people will say "oh it's only braces"! (which Nathan has recently gotten on top,actually it's an expander to expand the top of his mouth to allow room for teeth to come in properly which consists of a wire apparatus attached to the back two molars and having six braces rubber bands and wires) So our nightly routine consists of more tasks outside of pump site changes, sensor sites and calibration, snacks and blood sugar checks... Yup,this is sometimes an hour long process... People will ask, "why is he having such a hard time with the braces"?? My child didn't... Well with Diabetes if you don't eat enough and the right foods your blood sugar will not stay up and you will have lows... If he didn't have Diabetes he would just deal with the mouth pain and be hungry but, this just isn't the case he needs to eat.... So the next time you might think we are milking it think again everything is more difficult with Diabetes... Some people mean well but will NEVER get it because it doesn't affect them! Also to throw into the loop he now has a cast on his left leg (for a broken ankle), let's add more to the Diabetes business... Maybe for a child without diabetes this is no big deal but, now he can't exercise or run and play and we have to give more insulin to counteract high blood sugar... Some situations are NO WIN... So we just run with it(or in Nathan's case walk slowly)... What else can you do???
Bob and I never let Nathan feel defeated or different. We always try to inspire him and tell him he's going to have to work a lot harder to get half as far as someone without Diabetes. So rather than complain about Diabetes we just accept it and do the things we love... All the things that everyone else can just get up and go do, but for us we have to plan ahead. We have to make sure to pack glucose, insulin, extra snacks and supplies. There’s a whole challenge involved... Diabetes takes an extreme amount of work, but the harder I work, the healthier Nathan is and will learn to be. That’s just the way it is for us. We've accepted this is just the way GOD has planned our Life to be. We are given these challenges and work hard to overcome them... That's just what keeps us fighting. For better care, better technology and better understanding to people with Diabetes...
Again and again I will say Nathan is my HERO, he takes it all and despite a little crabbiness (which is to be expected) just let's it roll off as if it's another day... Man I love him!!!

Heroes of Diabetes

Wow haven't blogged in forever... Life is just getting busier everyday... I'll start by bragging. Nathan made a select piece of artwork for the JDRF Gala to be auctioned off and someone bid out on it and payed the full price. As much as I wanted the piece, I am completely appalled to think someone loved it that much... It was fabulous and really depicted people with Diabetes as being HEREOS... Speaking of Heroes, I know I call Nathan mine all the time and I think we all have one come to mind really quickly... The theme of the Gala this year was heroes... I have no doubt everyone in the room at the gala the other night was a hero in some way or another but, I want to talk about the Heroes in our Diabetes Life... It would be the Children/ People who battle this disease everyday, the Doctors who take care of them the researchers who work for the CURE, the Corporations who donate/raise thousands of dollars, the people who work in the JDRF offices tirelessly to make these events perfect and make people want to come back the following year to each and every event, the volunteers who spend there own personal time working events, sitting on the board, stuffing envelopes, etc. Oh and let me NEVER forget the parents who take care of these children, up during the night chasing blood sugars, advocating at school, fighting for prescriptions, arguing with insurance companies and just plain worrying.... Many people will say well they have raised xxx dollars why not a CURE??? Well it's not always just about the CURE, it's about making life easier getting better medicine, tools to manage your life.. This is just as important. We are very grateful for the people who have come into our life due to Diabetes, thankful for the friends we've made and those who always support us and Nathan in this crazy life we have with DIABETES!!!

(above is the Gala artwork, the corner says Nathan Diabetes hero since 2006)

ABC's of Diabetes!!!

November is deemed national Diabetes month. November 1st is National Type 1 Diabetes day and November 14th is deemed national Diabetes day. Though we are very thankful such a horrible disease is recognized all month we still must to continue to live with this disease forever... It is Diabetes day everyday in our home, school, whole world it goes where ever we do. We can't leave it home and forget about it! The only hope is for a CURE but, until then we can keep working hard everyday to stay healthy and find a cure. No matter how hard diabetes is and can be and although it isn't a joke. Today I am going to write a little different blog, time to add our crazy humor to the mix of all these needles, meds, carbs and everything else we deal with and show you how we can laugh to cope and move on....

OUR ABC's of DIABETES....
A- is for A1c ~ Fingers crossed for a good or should I say exceptable number...
B- is for BUTT ~ The place were we put the most sites and needles.. So when you see me look down my sons pants its because his site is not feeling right not because I love BUTTS...
C- is for COOKIES ~ Oh and yes he eats them and no that is not how he got Diabetes...
D- is for DIABETES- Yes he has is a child with Diabetes not a DIABETIC he defines his disease it doesn't define him...
E- is for EVERYTHING ~ Everything we must do to keep our son alive including everything we must carry everywhere we go...
F- is for FOOD ~ Always an issue and always wondering how certain foods will affect blood sugars not only now but later...
G- is for GOOD ~ Something we say when we are just so overwhelmed we don't want to say it all over to another person...
H- is for HOLY SH@#- Something we say after a HUGE dessert and it is 100 carbs...
I- is for I FORGOT ~ Forgot??? yes we are not perfect and we do forget to give insulin and test before meals...
J- is for JUICE ~ Something we can't leave home without for low blood sugars that creep up when we forget and don't have one w/ us... AUGH!!!
K- is for KETONES ~ No, we don't make these words up and yes we do get them often and for no reason...
L- is for LAUGHTER ~ Yes, we do laugh about this stuff later on if we don't we would go insane...
M- is for MOM- That's my mom we couldn't live without her support and understanding...
N- is for NATHAN ~ The HERO, trooper & amazing child who deals with this all with such unbelievable grace...
O- is for OUCH ~- No matter what you do those needles hurt...
P- is for PRECISE ~ Something we have to be when making, implementing and following plans for Nathan's care...
Q- is for QUICK ~ I think I hold the record for opening and inserting a straw in the juice box the fastest...
R- is for RUDE PEOPLE ~ Yes, we encounter them everywhere we go. Especially when we test blood sugar in public. I just want to scream "NO, HE'S NOT CONTAGIOUS"!!!
S- is for SHOTS ~ Yes, Bob says he's gotta go do shots with his son or we've been known to line up shot glasses of water to get Nathan to drink one by timer every 5 minutes when he's dehydrated...
T_ is for TIRED ~ Again we are tired everyday mentally and physically this is not easy especially at night its scary...
U- is for UNBELIEVABLE ~ At the amount of kids who have this disease... :(
V-is for VAST ~ There are a vast amount of ways to care for someone with diabetes and they all have there unique plan tailored to there body...
w- is for WISHES ~ Something we all have to put an end to this disease...
X- is for X-RAY ~ After having one and freaking out and wondering if it hurt the insulin pump...OOOPS!!!
Y- is for YOU ~ Thank you for reading this and taking the time to care about my son and his life with diabetes...
ZZZZZzzzzzz is for ZZZ's (sleep) something a parent never gets when raising a child with DIABETES!!!

NEW PUMP & CGM

Many people are asking a lot of questions about Nathan's new PUMP and CGM(continuous glucose monitor), we really appreciate all the inquiries and haven't answered for a week because we really were not sure ourselves... YES us who seem to always look like we have it all together and make Diabetes look so "EASY"... Well it's not... Not easy at all, it's us working hard behind the scenes to make everyday more "NORMAL" for Nathan. We struggle with many things from site(needles) that go in funny and you can feel and hear the snap of the skin or tape that doesn't stick so we are constantly refixing things... The callusees that look like dirt on Nathan's fingers from being poked so many times, Yes my son does wash his hands those spots are track marks if you will to constantly remind us of how many times his finger is poked and he has the rest of his life to keep doing this... So when I say we say we are tired it's an easier answer then going into all the stressful details of what is bogging down our mind... I try very hard to be a great wife, mother, daughter, aunt and friend but, please forgive me when I slack because I am TIRED, EXHAUSTED mentally, physically and emotionally... Bob is in a worse situation due to the fact he does all of this plus puts in 50+ hours of work in a week too... But, the past week has been stressful for all of us.. The new pump is different, better we think but, different... We have to do more steps to activate the insulin delivery and we have really faltered with this a few times giving to much insulin or not giving any at all... CHANGE is hard and when you are used to doing the same thing everyday 6-10 times per day for 5 years it's hard to switch... Plus we had to get the school nurse up to par quickly and make new care cards and plans... AND yes theres the CGM... I don't think I still totally get it but, it's coming and Nathan (yes the 8 year old) is teaching me... Mind you this device is AWESOME... But, I have my complaints too...
I was thinking we could have those nights where we sleep like a baby... No more worrying about blood sugars all night but, the CGM beeps and vibrates when the blood sugar is to HI or to LOW.. So the 1st night we were up all night with LOW blood sugar and we couldn't seem to bring it up and last night we were up all night with HI blood sugar that didn't want to come down... I am not complaining that is the beauty of this device no more worrying all night we will know if there is a problem...
I am amazed with the CGM and the the improvements in Nathan's blood sugar will be phenomenal. Though you will not be able to trust the CGM completely. You still have to be testing blood. I feel safer knowing it is a guide and will warn of blood sugar changes.CGM'S may not make life with diabetes any easier. But they can definitely improve health. CGM'S give a continuous readout of glucose levels in tissue fluid, the wet stuff that oozes out when you have a scrape or a burn. To read these levels, you insert a long-lasting sensor under your skin, a process that feels similar to a needle stick. The sensor is made of material like the filters used in dialysis. It measures glucose levels and radios the results, via a connected transmitting device, to a small receiving device about the size of a pager. This sounds nice, much more information without all the needle sticks. Unfortunately, you still have to do fingertip blood checks 2–4 times a day to keep the monitor calibrated. And the information you get from the meter is only valuable if you know how to use it. According to manufacturers’ data, You can easily view blood glucose values throughout the day, without having to do a finger stick. It’s easy and discreet. The monitors have “trend arrows” that show you if your level is rising or falling quickly, so you can prevent highs and lows. Most CGM'S have alarm systems that tell you when you are getting close to a preset high or low limit. This LOW alarm enables insulin users to keep much tighter control, as they don’t have to fear going low as much....
Nighttime Hypoglycemia or LOW blood sugar while sleeping is the biggest fear about Diabetes that Bob and I have and if there is a chance we can be proactive and stop this from happening and have the assurance our precious little boy is going to wake up each morning we will use this device forever, I will end with a response from Bob to an article I sent him about a child not waking up in the morning due to night time hypoglycemia.. NO father should have to feel this way about there child!!!
Holy Shit. I had to stop twice from reading this before I broke down in tears.
Sometimes I feel waking in the middle of the night to test Nathan is meaningless. But with that said, I still couldn't stop something like this. This is one of the most feared things I can think of......

Back To School....

School started 3 days ago and things are rolling smoothly... No fights for Nathan's rights or trying to get the next teacher to "GET IT".... It is just amazing how the communication went from last year to this year and the school is on target with our needs!!!
It's always tough sending Nathan off the first day and giving up his care. I may seem crazy but, I am not happy when he goes to school. I love to be around him and really miss him when he is gone!!!
I fear the battles he must face each day on his own. Kids who have diabetes are always battling in the classroom, before tests, gym, and special events, it remains a constant that never leaves them. I am always proud like any parent but, yet a bit envious of the other parents. The odds that are stacked against Nathan just to achieve what other kids do. It's like he lives his life with an asterisk. It's clear that whatever kids with diabetes do, they do it against much tougher odds.There is a good chance that other kids had the opportunity to give one hundred percent focus to achieve certain milestones. If you have a child with diabetes, stop and think about everything your child accomplishes despite the odds they face every day while living with diabetes.
I'm hopeful Nathan has a fabulous year in 3rd grade.....

Summer's End....

This will go in the books of one of the best Summer's ever... It started with the JDRF WALK and a great day at Fantasy Island. Drive In movies, Amby and Lyssy visiting. Then we had the most amazing Wedding, Congrats to my cousin and his beautiful wife... Nathan's 1st ever wedding, he had a blast and as the groom said "cut a rug".. He is quite the little dancer!!! Then we had a great party after at there house and a 4th of July celebration with the Brooking/Neyhart clan... We then proceeded to have the "Sammy's" come stay with us from Syracuse for a week and I don't think I've laughed so hard in years!!! Then it was a week in Syracuse, Starting with Becca's grad party and then another grad party, we stayed with my mom for a week and visited friends and family... We then had EJ from Syracuse come stay for a week but, it was cut short and we had to go back for a funeral... My best friends Dad went home to be with the Lord, no more pain and suffering... Nice fun night with the Falcone's at Sylvan Beach. We then went to Wild Wood, NJ for a wonderful relaxing beach vacation and finished off the week with a trip to Strasburg, PA to the Railraod and learned how to make a pretzel... Then Mom came to stay for a week with us and we had a nice time!!! Then we pulled off the best surprise ever for Uncle Joe and Aunt Ruthie's 40th Wedding Anniversary!!! We then returned home to Buffalo for 3 weeks and visited with friends and neighbors and had a few visitors come to our house Bri & Jeanine, the Abbotts, Kelly. We went to the Erie County Fair and Nathan's 1st ever concert BIG TIME RUSH.. We also went to MarineLand... We are now off on our last Summer adventure to Syracuse for 6 days to stay with Grandma and go to the NEW YORK STATE Fair, were we will meet up with many friends and family members... When that comes to an end on Friday we will take (my 1st ever) train ride home to end in the books one of the BEST summer's ever!!! All this wonderful fun but, wait guess what we still had our least favorite thing that tagged along everywhere we went... CAN YOU GUESS???? DIABETES...
But, thankfully despite the heat and activity we made it through the summer with very little problems for once the disease cooperated without ruining our fun... Not to go unnoticed we did make a lot of other strides with Diabetes this summer too... Nathan is testing his blood sugar himself much more without our assistance, he is giving his own insulin with minimal supervision, he has given himself a site, we have trained his friends parents on his care and he can't wait for a play date without Mommy and we are days away from a new pump and yes the thing he's been waiting for the CONTINUOUS GLUCOSE MONITOR...This has taken much effort on Bob's part to get his insurance to cover the devices and supplies and to get the company to even write this stuff into there policy... But, we will stop at nothing when it comes to Nathan's care... Also my boy has learned how to mow the lawn, weed eat, paint, ride his bike in the road by himself, jump ramps(Cover my eyes)and use the oven... ALL THESE THINGS JUST MEANS ONE THING!!! I guess he's growing up and isn't my lil' man anymore... :((...
I hope 3rd grade is ready for this BIG GUY!!!

Walk to Cure Diabetes!!!

Dear Family and Friends,

As you know our son Nathan, battles TYPE 1 Diabetes. Many people still may not understand what a devastating disease it is. On the outside Nathan is a beautiful 8 year old. He is a son, nephew, cousin, friend, classmate, student, cub scout, friendly neighbor?..and sadly? a patient. On the inside, his body will do whatever it chooses without warning. What Nathan goes through EVERYDAY is more than anyone could imagine. Each year we delay this letter for as long as we can. We don?t delay because we like to procrastinate, but because reality sets in. We feel like when we ask friends to consider donating toward a cure they must be thinking, are they asking for money again??? Really, this is the 5th year they've done this! This was the year that we weren't going to do this anymore... Just going to give up on all this JDRF stuff... Moving to a new place and going to focus on other things but, HOW? How do you act as if it's not there when it's in your face all the time... Nathan is getting older and we didn't think he would be into it anymore... Then he was asked to be the poster child for the sneaker campaign for TOPS he was excited. His enthusiasm give us no choice but, to carry on... So we need to be excited too... This is year has been bittersweet as we have had many major changes. We try to stay as positive as can be in our everyday lives, as we have to believe and have hope that this up hill battle will become easier. Therefore each year, we continue to ask for your generous donations. Money is the only way that we can have access to new treatments and ultimately a cure for DIABETES. It is an ugly disease, imagine not knowing if that next time he says I feel LOW he passes out or worse. The researchers are so close to finding a cure. We have participated in studies and hope to participate in future studies. Your money, no matter how much can contribute to the possibilities of a ?CURE.? Money buys research, but more importantly, Research buys TIME. Won?t you please join in and help us BUY TIME FOR Nathan and others afflicted with this horrible disease?

Thanks for your past, present and future support. We are taking steps to find that cure ? your generosity gives Nathan the gift of time, hope and life ? we are forever grateful.

With Love and many, many, thanks,

Bob , Dawn & Nathan Neyhart