Monday, November 10, 2014

HALLOWEEN!!!

 
Halloween really is my most favorite holiday. It's fun, with no expectations, it's the one time a year you don't give a second look to Harry Potter driving next to you, or a cat at the check out stand in the grocery store. It's the time of year everybody gets to play make believe. It makes me smile and feel happy. I love the creepy decorations and another excuse to have a get together.
 
This year Tyler and I went as Cheech and Chong, his idea of course. He had to find a costume that allowed him to keep his beard, I can respect that. He was originally going to be the bearded lady, but I didn't know what to be so he came up with this idea and.... I thought it went well. Notice I didn't go for SEXY Chong HAHAHA.
 
 
 
Some of our guest had great costumes, I'll say my favorite were  Cindy and her Husband who came as Cards Against Humanity HA! so creative and HYSTERICAL! They must be TRUELY horrible people. Carrie and Hubs came as a witch and.... HER BROOM so clever! Then of course the classic Zombies. I'll say Mark had a beating heart that was showing through his shirt, I thought it was actually part of the costume, but no, it was an app on his cell. Crazy technology I say

 
Some more of our guest, I didn't post a picture of everybody, it wouldn't have turned out even and that bugs me. But the Joker and his side kick were pretty awesome.

 
We played some Flip cup and Beer pong. I'll say, I've never seen more than one round of flip cup played, because I've only seen it on the Tonight Show with Jimmy Fallon SO we probably were wrong in making the winner continue. So as the Kib the guy who won the most liked to say,
"even when you win, you loose" as he held up the house by leaning on it!

 
Some of our guest.. guess who won the most flip cup games there! Cheers Spider man!



The last of our guest to hold, not everybody was here for the group shot 
 
Some Decorations! You know Tyler says I am a hoarder of jars, WELL looks like that pays off when decoration. BOOYA!

 
 
October seemed to fly by us. I mean literally I blinked and each weekend was full then over, SO we never made it to the pumpkin patch. BUT we did make it to Wal-Mart, which honestly is where we would have bought our pumpkins from anyhow, the patch would have just been for photos. I'm not paying those prices when I can pay ROLLBACK prices....common!
 
and they may just be the BEST pumpkin patch pictures EVER!
 
 
Presley said she wanted to be Elis this year and OH MY GOD! was she ever the cutest damn Elvis I've ever seen. She said "They should make girl Elvis costumes" and in her dad's infinite wisdom said "Hang on to that costume, when your 18 you can wear it with no tank top underneath it and it will be a girl Elvis Costume" Nice advice dad... nice.
 
 
Grace in all her Nerdom was Agent Skully from the X-Files. Of course nobody knew who she was at school, but she didn't care. She totally rocked that FBI badge her uncle made her, AND the red hair her mom gave her!
 
At School on Halloween day there was the Halloween parade, then after school a Monster Mash Dance! Grace best friend was Moaning Murtle from Harry Potter. So funny, and clever.
 
 
There are the girls with their teachers and Presley's nurse. I LOVED Presley's teachers costume. Can you tell who she is? Russell from UP oh it was darling, her vest was even missing a patch!

 
This year for trick or treating we went to South O to hang out with our friends Frank and Sally. BONUS was my friend Diane lives down there too so we made our way to her house and saw some AWESOME houses on the way back. This shall be our new tradition for Halloween!
 

 



The Color Run

So much has happened since I last sat down and took time to write. It's funny, being a mother and wife, how things we enjoy and get pleasure from tend to take the back seat. We have so much to do, so many peoples needs to tend to, that sometime our simplest pleasures are just a thought of what we would like to do, just so we don't take time from any where else. So with the kids being off school today, and the husband being at work, and house work piling up I decided to sit down and play catch up.

I did my second 5k in October. Another messy run, but instead of the Color Me Rad I did the Color Run, and I'll say.. I liked it more! I think the location was better, the parking was easier and because it was in a parking lot, you got color thrown at you through out the run (lets be honest... we walked) instead of just at the end. I did the Color Run with my friends Sally, Rachel and Season, we were


Team EW!

 
 
I was taking the close up hahaha obviously, and my friend Rachel's husband took the one of us taking it. I LOVE that picture! Good Job Cesar
 
Here's some of the colors we went through, I don't have pictures of yellow.... Poor Yellow


 
LOVE the after shots!!! Everybody is more beautiful in color!!!



 
Now I'm no marathon runner BUT, I have a blast at these. Lets see if I ever have the guts to do the Zombie Run, THAT one I know would be much harder.
 
 


Music time Monday!!!!




 
This was actually suppose to be last weeks song, and it was in honor of my friend Trish's baby coming home!
He was born a wee bit early and because of that he was born a tiny tike.
At a whopping 1 pound 12oz!
But he's home now, growing big and strong, weighing now a little over 6 pounds and doing lovely.
 I got to cuddle on the little snuggle of love, and it took me back.
 
 
Let them be little.. don't rush it, they'll be big soon enough.

Monday, October 20, 2014

Trying to clear it up...

My mom said to me the other day while I was doing her hair "we've been terrible fundraisers this year" Yea... a bit. We went from the 3rd highest fundraising team in San Diego to probably not even on the spectrum HAHA! I told her, it's because I'm tired. I'm tired of trying to get people to give a shit about something they just don't understand or care about. I talked about that HERE and why I think diabetes doesn't get the attention I think it needs.

But then my mom said something else to me. She said she was driving with a friend of my Aunts who has been friends with my Aunt since Presley's diagnoses, who has donated money to our walk, and she STILL didn't understand that Presley was never going to be cured of diabetes, that Presley is 100% insulin dependent. I looked at my mom and said "wow, we're obviously not being very clear" So let me be clear.



TYPE 1 DIABETES IS NOT LIKE TYPE 2 DIABETES.
 
(Now even this is stereotypical, I know some type 2 diabetics that are not over weight, NOT all type2 diabetics are overweight, but I thought the picture was funny, AND it's a kid vs. an adult)

TYPE 1 DIABETES MAKES UP A VERY SMALL PERCENTAGE OF DIABETICS
 
 


TYPE 1 DIABETES is an AUTOIMMUNE DISEASE!

THE PANCREAS NO longer WORKS!!!!

INSULIN IS NOT A CURE!


Presley's PUMP is not a CURE, it's sort of like Life support.
 
 
Lets Also be VERY clear. People with diabetes can live FULL normal lives!


 But they have added challenges that come with some pretty crappy side effects, like
 
 
KIDNEY FAILURE
 
 
NERVE DAMAGE
 
HEART FALIURE
 
STROKE
 
AMPUTATION
 
AND BLINDNESS TO NAME A FEW
 
 
 
TO recap...
 
TYPE 1 AND TYPE 2 DIABETES .... NOT the same
 
 
TYPE 1 DIABETICS ARE 100% INSULIN DEPENDENT
 
THEY WILL ALWAYS BE INSULIN DEPENDENT! THEY WILL NEVER NOT BE INSULIN DEPENDET
 
THERE IS NOTHING TYPE 1 DIABETICS DID TO CAUSE THIS, IT JUST HAPPENED TO THEM
 
 
BUT ALL THE AWFUL SIDE EFFECTS ASSOCIATED WITH DIABETES CAN STILL EFFECT THEM
 


 
 
 


 
 
 
 
 

 
 
 

Thursday, October 16, 2014

Letting go

Presley's new nurse starts Thursday, and I'm having a really hard time with it. Things aren't going how I would like, BUT I'm trying to let go of some control. Our school district hired an LVN instead of using an agency nurse. I'm told this is a good thing, that the district then takes on the responsibility of checking references and experience, instead of just taking the agency's word for it. Which I totally love, but it also removes some of my control. I asked to meet her before her first day, and was told "no" they wont pay her before her first day on campus, this bothered me. I think it's asking a lot of a parent with a child who has medical issues to just go with the flow and trust their judgment. Especially with the LVN's I've been given thus far. It's been a doosy of hot messes, from; not giving Presley any insulin to correct a BG of 400 all day, one who asked if she was allowed to give her insulin with out asking for permission first, and finally one who when asked to give her ONE unit of insulin for ketones drew up 10!! Like I said.... a bunch of hot messes who clearly aren't qualified. One of the nurses when I voiced my worries to the agency nurse director said "I'm surprised to hear you say that. her last diabetic family felt that she knew their son better than they did" I'll tell you what. after working with her for 3 weeks, the ONLY thing that speaks volumes to is the parents. Poor kid I say.

I'm trying to go with the flow because I don't really have an option, and that is REALLY hard for me. It's hard to just sit back and see how things play out, because well, it's my daughter who is in the middle of "if" things work out well or not. She's the one that's going to bare the brunt of which ever end this new nurse falls, either she'll be fantastic or another hot mess. On a POSITIVE note, I met her VERY briefly yesterday while at school with Presley. She came in to get some paper work, she wanted to know what specific pump Presley wears because she was going to be going to a pump training course. So that's a positive, made me happy she's wanting to learn. She was well spoken and seemed with it. I'm anxious about how it's all going to work out. One of the office ladies said "are you being positive?!?!" I smiled and told her "lets not be crazy... not yet" HA! My how I envy parents who get to drop off their child and...... that's it. Just drop them off, and know they are ok. I'm going to miss our current nurse terribly. I don't trust many people with her but I do with Dana, explicitly, I can hand her over and say "her BG is 50.... have fun with that" and I KNOW Dana is on the case, I know she cares for Presley deeply and has her best interest at heart at all times. Gosh am I going to miss that.


Take a deep breath, and just breath. Letting go is very hard to do.
 
 

Monday, October 6, 2014

Music Time MONDAY!!

Because my mind is wrapped around diabetes tonight, I don't feel like sharing some fun tunes, instead.... I'm going to share videos I've made over the years. They are repetitive but different, I haven't made a video in some time, so these were all for the JDRF which we no longer raise funds for, and our team name has changed, but the message is the same, my plea, and heartbreak is the same. XO

This was my first attempt at making a video ... like. EVER

2009


2010


2011

Because it matters

A very large portion of my life since July 25th 2007 has been dedicated; tearfully, tiresomely, sleeplessly, whole heartedly to this little girl. My life was forever changed in the moment I was told my baby had diabetes. Since that moment I've been a mother, a nurse, an educator, and advocate for those dark brown eyes and bright smile. Being her mother has taught me patients, and compassion that I never knew.


 
It's hard watching your daughter deal with such grown up and life threatening issues, but you know what makes that hardness heart breaking? The fact that nobody gets it, nobody cares. I watch other medical diagnoses get the attention I wish my daughter would get. I watch ALS challenges go viral online, and it seems like every other product is in a pink box for breast cancer. Then I look down, at my little girl, with permanent holes in her fingers, two medical devices attached to her waist, and a bag of medical supplies hanging from her small shoulder, and I think.... why?
Why not her, why not her story, why not diabetes?
 
 
I think I know why. I think it's because when people hear somebody has been diagnosed with cancer, or some other disease people think, it happened TO them, but when they think of diabetes they automatically think of every stereo type that goes with that. They think it didn't happen TO them, but BECAUSE of themselves. Because, every diabetic is over weight.. right?
They are old or live unhealthy lives.... right?
Wrong. Diabetes effects children, around 15,000 each year.
 
I'm not complaining, because really, it is what it is. Most days are just days, nights are sleepless but I'm use to it, but there are times when I just feel..... alone. Alone in the fight to assure she's safe at school, alone in my sadness that diabetes is her forever reality, alone when I walk into to her room at night to check her BG to find her with her eyes glazed over and she's just vacant.
 Alone in my frustration that diabetes is so easily dismissed by so many.  
 
 
Today's been a rough day, so I'm feeling alone and sad. But this to shall pass.
Tomorrow will be a new day with this beauty
 
 
If your reading this and you want to show your support... well, it would mean a lot.