It's okay mommy..... it's okay

Last night was Presley site change night. Tyler and I have decided to do it a few hours after dinner, right around bed time, that way food has had time to digest and she'll be resting.. no need to try to guess if the site change worked because we're trying to estimate was food and activity may be doing to her BG.... to us.. it just makes sense. It also gives Presley at least one bath every three days where she doesn't have anything attached to her.

After bath the girls went to their room to pick out PJ's.... once they came in the living room Presley yells to Grace "SMACK MY BUTT!!!" so they started running after one another trying to smack each others bare bums. Watching Presley run, with out any attachments made me feel so happy. Looking at her just running, and playing, not having to worry about the pump, where it was.. if it was falling off,... or having to hold it made me happy for her. She looked so.... free. It was care free play. She had the biggest smile on her face running around the chairs, Tyler looked at me and smiled and said "a few minutes of freedom eh?" It made me want to cry.

Once they got the bum smacking out of their system it was time to calm down and get PJ's on. Once Jammies were on, Tyler and I took Presley to our room to lay her on the bed for her site change... she looked at me and said "you hold my hand the whole time mommy??" of course I was going too. While daddy got ready, Presley got nervous, making a face that I can't quite describe, but a face of worry.... once daddy put the sit next to her skin we started to sing the ABC's to help distract. Once the site was attached she flinched but kept on singing. After the pump was fully hooked up I looked at her laying on the bed and gave her a big hug and kiss.... I said "I'm sorry honey" she grabbed my neck.. gave me a BIG squeeze and started to pat MY shoulder and say "it's okay mommy..... it's okay" The fact that this tiny 3 year old brown eyed girl was comforting ME... did bring a tear to my eye. Then she said "You wanna do a pump too???? DAADDDYY GET MOMMY A PUMP!!!!" which kind of made me giggle when she started yelling for her dad to get me my infusion set, but it also broke my heart. the thought of Tyler attaching one to ME.. totally FREAKED me out. It truly scares me.... it makes my heart beat and I think.... your such a WIMP! Your BABY does this... and your to scared?? It's amazing how much strength a child can have inside their tiny frames. I am so in love with this child, and amazed by her strength every day.

Special Hank

After a terrible time changing Presley's site,and during her 2nd site change within two hours she was so upset and crying, I went to get her Special Hank to help her calm down. She snuggled her "Special Hank"till she calmed down, and after her tears were dry she asked to put a pump on Special Hank... and well, there was NO way i was going to tell her No, so we hooked him up. She said "YEA!!! MOMMY!! NOW HANK IS DIABETES JUST LIKE ME!!

CAN YOU HEAR ME??

I was reading about diabetes because well.... YES I AM OBSESSED!! and I found this statistic/fact that made me a bit sad.


Did you know, that an estimated 3 out of 5 Americans with diabetes, have one or more complications associated with diabetes? And over time, high blood sugar can cause damage to virtually EVERY ORGAN SYSTEM of the body… this includes

Central nervous System
Vision
Cardiovascular
Kidney’s
Skin
Sexual
Teeth and gums
Musculosketeal

I would be lying if I said I thought of all these awful facts when I thought of Presley's future, but I would also be lying if I said i NEVER thought of them... because I do. I've heard somebody say once, that the side effects of diabetes start to show 20 years after diagnoses.. if that's true... she'll be....21 going on 22? Just entering her young adult life, and I wonder will she have to be worrying about her eye site or worse? I know many people tell me "but the control has gotten so much better, science has gotten so much better...." yes that's true... but when was the last time your blood sugar or my blood sugar was over 300?? Her's was... this morning, and it has been every morning around 9:30 for about a week. I understand people don't understand what it's like to live with a child with diabetes, and actually.. I'm grateful they don't have to. But on the other hand it's so frustrating being a mother, with a child, who is sick...who may look healthy, which maybe is why people are so easily dismissible to her disease.. but don't be fooled by her beautiful smile, and infection laugh, she is a sick little girl. If we didn't do what we do every day, trying to ensure that her future will be a healthy one... that her life now is a healthy one, if we stopped doing that for her.. she would die. It's hard being a mother looking at people, talking to people and wanting to yell CAN YOU HEAR WHAT I'M SAYING!!!! I feel angry when I feel like she's dismissible, like her disease isn't important because she looks healthy, because people associate diabetes with obesity and the elderly. But my three year old is not old, and she is not obese, she did NOTHING to herself to cause this, and there is NOTHING she can do to stop it. Do not dismiss her, or her life. Do not dismiss what she goes through every day. Even I don't KNOW what it feels like to go through what SHE goes through. She is so much braver than me, probably than a lot of us.

Presley about a week after diagnoses.

Presley 7 months after diagnoses

Presley, one year after diagnoses Presley.... two years after diagnoses.

If you want to help US IN OUR FIGHT to help HER in her life visit my walk page, where you can donate or join our team and do some fundraising of your own. I believe one of my life missions is to give Diabetes the attention it so deserves in our country. So people can better understand the dangers of Diabetes and learn that it effects so many children. Can you help me with that? I'm tired of being dismissed.

Mid morning blues..

Once again, Presley's numbers are outrageous. Right now we're dealing with mid morning highs. After breakfast, even with a good night of numbers about 2 hours after she eats her BG is in the high 300's or 300's. I thought.. well, maybe your giving her stuff she just can't handle. One morning she had french Toast.. with 1 tablespoon of Powdered Sugar.. and no syrup, and one morning she had an egg sandwich on one of these GREAT buns from Costco with only 17 carbs (pretty standard for a piece of bread) So I thought to myself.... do a basel challenge.. no carb breakfast and see what happens. So she had an egg with some cheese and yup around 9:30 she was 389!! It's so frustrating. This morning the girls wanted pancakes. I was on the fence with the idea, but i gave in and made them some, She had 2 pancakes for 40 carbs, a tablespoon of powdered sugar for 7 carbs and 1 tablespoon of syrup for 15 carbs. I EVEN added 1 unit on top of what was needed just to cover for the morning high.. and yup she's 300.... it's so depressing. Do I give her a shot? or see what happens? Once I gave her a shot and she ended up dropping down to 46, then yesterday when i corrected it didn't really do that much. I'm really growing tired of checking her mid morning and getting the blues, and second guessing what I should do. Something has to give.

Honey bunches of WHHAAAAA....

I'm still relatively new to the life time of diabetes, but I'm thinking some people just can't eat SOME food. I mean, it seems like every time Presley gets a bolus for Honey Bunches of Oats I end up saying "WWHHHHAAAAAAAA????" because of an OUTRAGEOUSLY high number. I told my husband.. "i just don't think she can eat that stuff"


I mean, are there things out there you can't eat because of your diabetes? or somebody you love can't eat because of there's? I'm just curious. It makes me kind of bumbed out to be honest, cereal is SO easy. I guess I could try Cheerios..... regular Cheerios, but blah, those are so.. blah!

Still ironing out the kinks.

Latest pump update??? I hate it.... I'm not giving up, I remember the words my DR said before we started "you will hate the pump, it's a hard start, you will want to quite, you will cry and you will want to give up... but I promise you, once we work threw the kinks you'll LOVE it!" So I'm holding on and waiting for the kinks to be worked out.

I really wish the kinks weren't being ironed out while she's sick, which just adds to the pressure and bad numbers. We had her first site change malfunction on Saturday. It was terrible, decent numbers on Saturday before the site change, decent not great.. but workable. Then a few hours after lunch and her site change her BG was 280 so we gave her a bolus to correct. An hour later we went to dinner and her BG was 385, WOW! I gave her 3 units injection for food and one for good measure pretty much because I couldn't explain the jump. at bed time she was in the high 200's at midnight, again the high 200 so I gave another bolus, at 3AM she was in the high 300, so another unit injection. Sunday morning she was 179 and had toast and an egg for breakfast with milk. Two hours after her breakfast she's cranky saying her head hurts, check her BG and she's "HI" eeeek, 3 units injection and a site change to come. The site was all screwed up, bent and obviously not working.

There's no pattern right now, and I need to write her DR to get some direction. But we're still hanging and working threw the kinks. Tyler is ready to throw in the towel. He hates the numbers as much as I do but he's not repeating what the Dr has said over and over again like I am. I have to... or I couldn't justify doing this to her tiny body. It will get better..... it WILL get better.

The pump so far

It's been a while since I've updated how things are really going with this whole new pump thing, and honestly.. it's hard. I CAN see the potential and how it will give us a better management and how it may even allow me to sleep a little better. Which really, thinking more sleep may be on the horizon seems to be a far cry from what we're doing now, checking her BG every 3 hours threw the night included. I take the 12AM shift and my husband takes the 3AM shift, it seems to be working, but i AM tired. But I also tend to think that, that's just part of being a diabetes parent.. your always tired. Only other parents with children with Type 1 can understand that.

On our actual start date, things were okay. It was over whelming learning EVERYTHING, how to set basel rates, how to challenge the basel rates with zero carbs (which really... is hard in a toddler) how to adjust the basel rates bassed on the basel challenge, how to deside on a NEW way of correcting, and letting things ride. I got so use to shots, I knew when I could correct, and when I couldn't, I knew what the injections would do (well.... sometimes) But the pump is SO new, I'm not sure whats going to happen threw out the day, or night. The pump it'self is AMAZING.. the technology that it has blows my mind. It has so many features and fancy things it can do, I can't even try to know it all yet, and I don't want to. I need to get the basics down then maybe.. just maybe move on into some of the extra things it can do to help manage her BG.

Presley is handling the pump ooookay. She DOESN'T love it. She asks when she can take it off, and cried at her last site change. It breaks my heart to see her wearing it. I mean, perhaps i'm dramatic... and I know a few people who would agree with that. BUT injections were more private, if you were walking around a store, or playing at a playground, nobody knew my daughter had diabetes (until I checked her BG or gave her a shot when out to lunch) It was something we knew, she knew and people may or may not learn. But with the pump it's right there, on the outside of her tiny body. A machine, with tubing going under her little shirt, something that shows there's something going on with this little girl, and perhaps it's just me. Perhaps it's me who is MORE aware of the machine hanging off her pants, I am her mother, I'm sensitive to the fact that my 3 year old daughter HAS to wear something like this to remain healthy, to stay alive... so maybe others don't notice it like I do, and maybe I wont for that long. Maybe once the nostalgia of the pump wears off I'll hardly notice it. But it does get in the way of her doing stuff like.... going to the bathroom. She won't go to the bathroom alone anymore because she's afraid of dropping the pump or it getting in her way. She has dropped in more times than I would like to reflect on because well..... it's expensive. She did tell me the other night "mommy.... when you take the pump off?" I respond "ohh honey, it doesn't come off, isn't it nicer than shots?" her reply "no.. me like shots more better" then she rolled over to go to sleep. I can't lie and say that didn't break my heart, but I know, in the end it will be better for her, and i know it will give us such great management SHE'LL feel better and love it.