It's funny how I can be thinking about something and then someone else will blog about something very similar....which takes me in a different direction....and I end up with something even more thought out than what I started with.
This is one of those posts...
I'd been thinking about how all of the Blogging D Mommies have really created this totally awesome online family. We've got this amazing support group! Through blogs and Facebook we stay connected, share tips and advice, support one another....all the things that great friends and family do!
And then Meri posted about The Sisterhood of the Traveling Pancreata! And that got me thinking....
We ARE a sisterhood. We're a sorority!
Alpha Delta Mu - Awesome D Mamas
Ok, so it's not a sorority that we chose to join willingly. The choice was made for us. But...
there are other similarities.
There was initiation. That day in the doctor's office when the pediatrician said, "Your child has diabetes". Our stories of that day are all different. But also very similar. The same fear and panic and sadness - or possibly just feeling numb. We all experienced it.
We all had a hell week of sorts. That week (it was a week for us) in the hospital getting your child stable and learning how to take care of her or him at home. Hell is the only way I could describe that week. Standing helplessly by while your child is poked and stuck and prodded and woke up every hour on the hour to check blood sugar. The overwhelming feeling of having to learn how to take care of your child - something you just took for granted before. Something you better learn to do right. No pressure. Hell. Plain and simple.
There is fun stuff, too!
Philanthropy - JDRF and other organizations that fund diabetes research. We participate in The Walk to Cure Diabetes. We even make t-shirts like the million I still have from EVERY SINGLE event we ever had in college. We wear them with pride.
Date Parties! Our weekly D chats are dates that are always on my calendar. It's so nice to talk to one another about diabetes - and life in general. Everyone is so willing to offer advice, a sympathetic ear, an endless supply of love and understanding!
See? We are like a sorority!
And you know what? I feel more connected to THIS sorority than I ever did my "other" sorority after 4 years of college!
Monday, December 21, 2009
at 10:42 PM
Sunday, December 6, 2009
Today we attended the JDRF Walk Awards Ceremony! Being new at this, we didn't know what to expect! But, we're up for anything involving JDRF so I thought we'd enjoy ourselves! Sweetpea always enjoys getting a chance to see and meet other children with Type 1!
We had a great time! There was a JDRF item raffle. We got raffle tickets when we arrived and were able to place them in boxes to win differet items. The theme this year was Dr. Seuss - One sneaker, Two Sneaker... So The Cat in the Hat was there along with Thing One and Thing Two! (Sweets was afraid of them!) There were treats and a popcorn machine - of which Sweetpea was a big fan!
But the best part was the awards ceremony!
I really thought that maybe we'd be recognized for walking and that would be it. Boy- was I wrong!
It started with the director asking all the Type 1 kids to raise their hands. Sweetpea was sitting on my lap in the back of the theater and her little hand shot right up! The director invited all the T1 kids down to stand on the stage.
I wasn't sure how Sweetpea would do with this! But she wanted to go down and went right up on the stage without me! She was definitely the littlest one there - and probably the youngest, too. She looked so cute standing there on the stage!
She was asked to help hand out one of the awards to the corporate sponsers! She did a great job!
Then they started handing out awards to the walk teams.
Our Team won the "Platinum Award for Top New Team"! Yipee!!! Sweetpea got a trophy for this! They even made her trophy purple to go with our purple walk shirts! She was soooooo excited! She has hardly put it down since!
Sweetpea also won a Golden Sneaker award for raising over $1,000 as an individual! She wasn't finished yet, though! Avery's Erasers won a special "JDRF Circle of Excellence Pin" for raising over $10,000. And.... Sweetpea won a special award for being "Rookie of the Year"!
We were just floored! We certainly did not expect this at all! Sweetpea was thrilled! She loved getting an award and being up on stage!
(On a side note, when our team won the Top New Team Award, the director asked me to say something. And she says, "Well, We can see what your inspiration was!" Oh geez. I did not expect this at all! So I started talking and only managed to get a sentence out before I started crying! What a goober! I felt like a big dork! But I pulled it together at the end, at least! Ugh! Darn emotions getting the better of me!)
It was a wonderful day! We are so thankful to all the people at our JDRF chaper for organizing the walk and putting on such a super event that made my little diabetic feel so special! What a priceless gift! That is better than any trophy!
I also have to say a big THANK YOU again to everyone who walked with us and donated to our team! This would not have possible with you and your support! Our current total raised is somewhere over $13,000 - and we're expecting more with corporate matching! We are flabergasted at the generosity we have been shown. We thank you from the bottom of our hearts!
Our JDRF Walk is proud to have raised over $330,000 to help JDRF find a cure for diabetes!
My heart is smiling today! Thank you!
at 4:08 PM
Tuesday, October 13, 2009
Sweetpea and "Fuzzy" the Wonder Pump!
Sweetpea continues to love her pump! This picture shows her with her pump pouch on! We were fortunate enough to get some awesome pouches from a friend whose daughter had outgrown them. They are darling and Sweetpea just loves them!
This is Sweetpea and Ruby! Ruby has diabetes - just like Sweetpea! She went to the hospital to get her pump attached the same day that Sweetpea did!
Ruby has her own pump pouch and her own insulin pump!
This shows Ruby's site. This is great for Sweetpea to see exactly what is going on and what we're going to do to her. For some reason, she doesn't like the "click" it makes when the catheter is inserted into the site. She's really nervous that it will hurt. So - she has to see me attach Ruby's pump - WITHOUT CLICKING - before she's ready to have it done herself.
This is Ruby's pump. It is exactly like Sweetpea's! Ruby has a PING, too!
I made this by using one of her actual sites. The pump was made by taking a picture of the real pump and uploading it to the computer. Then I printed it out on this fabric sticker stuff. I attached that to a Trident gum pack to make the pump. The pump pouch is an MP3 player holder that we found at Best Buy. Sweetpea saw it and said, "Look! Mommy! It's a little pump pouch!" I said, "Yes, it is! Let's buy it!" I was going to make one but this was much easier. I sewed ribbon onto it and it closes with velcro.
I hoped I wasn't going to all this trouble for something she wouldn't even really like! Luckily, she really likes it and it's serving it's intended purpose!
Sweetpea is still nervous about site changes. Ironically, the actual insertion is about the easiest part! She does not like being unhooked, she does not like putting on the cream and insists on helping, she does not like covering the cream and REALLY does not like taking the bandage off the cream! She does not like being hooked back up and she does not like taking the old site off.
Now, she says that NONE of this hurts. She knows it doesn't hurt. She's just really nervous about it. I'm hoping that it will get better each time until she's an old pro. Let's see....it took 5 months to get used to the shots....ugh! Let's hope it's not that long!
The other night I was trying to get the old site off and she was throwing a mild fit. She says, "OUCH! My website hurts!" I was laughing so hard I had to stop! She continues to call it her "website". Too funny! And it's too cute to correct so we just let her call it that!
All in all, the pump has been a great experience! We are loving the freedom of no more shots, syringes, etc, etc. Her numbers have been pretty good, too. She's actually a little more stable than she was before we started. I am hoping to see this trend continue!
Now, if I could just sleep through the night....!
at 9:20 PM
Thursday, October 8, 2009
Tuesday was the big day!
Sweetpea was pretty nervous the night before. We tried to keep her mind off of it but she couldn't help but worry. Right before she went to bed, she said to me, "Mommy, I'm not going to worry about it now. I'll worry about it tomorrow." Worrying at 3 years old - definitely my child!
We got up bright and early to head down to the hospital. Mom and Dad went with us so they could learn and occupy Sweetpea during the training. Sweetpea & J were too nervous to eat! Sweetpea even refused to get dressed and insisted on wearing her orange Halloween kitty cat pajamas into the hospital. What a sight!
Training went really well. We got the EMLA cream on her to numb the site. She wants so badly to be involved and do it herself. She ended up with gloves on helping me rub it in! After many hours, we were ready to hook up! After waiting around for 3-4 hours, even Sweetpea was ready to just get it over with!
We took Ruby, Sweetpea's Cabbage Patch kid, with us. Ruby also has diabetes! "We're twins!" Sweetpea says! "I can't believe she has diabetes, too!" Yes, what are the chances? We decided to hook Ruby up to a pump, too. So, we practiced on Ruby! This REALLY helped Sweetpea know what was going to happen and see it before we did it to her. I made Ruby a pump pouch and even a little pump that looks just like Sweetpea's. I'll post some pictures of Ruby and her pump later.
It really went a little better than I expected. Yes, there was crying. Yes, there was panic. Yes, she had to be held down. BUT - up until just a few weeks ago, this is what we dealt with at every shot. So, we're used to it. The actual insertion went really well! We practiced on fake skin (which Sweetpea thought was really cool) but inserting on fake skin is totally different from inserting into your child who is flopping around like a fish out of water!!
She was thrilled to death to get the pump into her pump pouch and get on with the day!
We went down to the cafeteria to eat. By this time, we were all starving and we wanted to stay close by just in case we had questions. Lunch went well. But the best part was after lunch.
I got the calculator out and was adding up the carbs she ate and was getting ready to do the math when J said, "What are you doing? You don't have to do that any more!" Oh, yeah! We add up the carbs she eats and put that into the pump. Then it does the rest. Awesome.
We put the number of carbs she ate into the pump, pushed a button and....VOILA! Insulin administered! Done!
I seriously thought I might just break down in tears! You have no idea what a totally wonderful moment that was! Pure joy!
Unless your child is diabetic, you might think I'm total basket case for getting emotional over a little mechanical device. I'll try to explain.... In that moment when we entered her carbs in and she got her insulin without needing a shot - it was an overwhelming feeling of freedom. No longer do I have to hurt my child to give her the medicine she needs to stay alive.
You know, words just can't seem to really explain how wonderful it is. It seems I say that a lot - I just can't find the appropriate words to express exactly how I feel. You know diabetes must be pretty powerful if it can leave me speechless multiple times!
It was just all the shots - 5 1/2 months worth of injections. Five times a day. Every day. Over. It's like crossing a finish line. Having a weight removed from your shoulders. The lifting of a black cloud. Priceless.
She slept well with the pump. She loves the pouches and has had no trouble wearing it at all! She is still so excited each time she eats that she does not need a shot! She's just beaming! Yes, priceless.
Today was our first site change. We can go 2 days before we need to change the site. That's a story for another post!
I wanted to give you a little Pump 101. In case you don't know...
An insulin pump is a small device that is about the size of a pager. The insulin is in injected into a cartridge that goes inside of the pump. A small catheter (tubing) goes from the insulin cartridge into a site in her upper butt area. You can also put sites around the stomach, the backs of your arms - any place you could give an injection. The tubing connects to a very small cannula that goes under her skin. The cannula is a very small, flexible, plastic tube that goes under the skin and delivers the insulin. You insert the cannula with a needle that is then removed - leaving just the small, flexible tube under her skin. It is held down with adhesive. Insulin travels from the cartridge, through the tubing and into her body!
What an insulin pump CAN do:
- A pump allows you the freedom of no more injections. The site can be prepped with numbing cream so that needle insertion is totally pain free!
- A pump does not use 24 hour insulin. It uses the fast acting insulin that is delivered around the clock - this is the basal rate. You can adjust the basal rate to increase or decrease at certain times of the day if needed (unlike a shot which is a one time dose).
- A pump allows you to give a dose as small as .02 units. The smallest does available in a syringe is .5. If you are small and need minuscule doses, this is fantastic! It eliminates rounding and allows for a more precise dose to be given.
- Blood sugar is better controlled with a pump. Pumps have shown to decrease the A1c number. A tightly controlled A1c helps to reduce the risk for nasty complications in the future.
- A pump allows you to eat whenever you want - unlike injections where sometimes it is better if you wait or eat at scheduled times. Sweetpea can now have that sucker or cookie at the friend's house!
- A pump eliminates the "did she eat enough to get a shot?" worry. You can give tiny doses so force feeding her is over!
What an insulin pump CAN NOT do:
- It does not check blood sugar. You still have to do finger pricks. In fact, you need to do them more often with a pump.
- It does not mean no more thinking about diabetes 24/7. In some ways, the pump is more complicated than basal/bolus therapy.
- It does not mean you can sleep through the night. In fact, we're back to checking at 12 and 3 am again.
- It does not mean less supplies. I had to clean out another cabinet for all the new stuff.
- It does not mean you don't have to carry around extra stuff.
- It does not mean blood sugar will be stable. Hopefully, it will be more stable than before. But, with diabetes, blood sugar will NEVER just become stable or get regulated and allow you to forget about it. This is a HUGE misconception about diabetes that makes me crazy! I hate it when people ask me if she's stabilized yet. I appreciate the concern and I know that, like I was...oh, 6 months ago...they just don't understand diabetes. BUT - the answer is, "NO. She's not stabilized. And she NEVER will be. Thanks for asking. Yeah, we may a few good weeks here and there but we're in this craziness for the long haul."
- It does not mean you can forget about diabetes.
- It does not mean there will be no more highs and lows.
- It does not mean that you can return to a normal life. "Normal" life ended for us - permanently- on April 27, 2009. The pump will allow us some more freedom and enable her to do more "normal" things. But our life is not back to normal. Never will be. There is nothing normal about having your child hooked up to machine 24/7 that delivers her life-saving medicine. There is nothing normal about all the medical supplies we have - or the fact that we know how to use them. There is nothing normal about the constant worry and fear that your child might die in her sleep or collapse from a hypoglycemic episode. No, the pump does not take that away. I wish it did.
- Finally, the pump is not a cure. It is just a more advanced form of life support.
I'll post a pic of Sweetpea and her pump soon! She does love it so! She named it "Fuzzy". I'm not sure why... it is NOT fuzzy. But, whatever....!
We are thrilled with the pump, too! It is a huge blessing that will help us out in many ways. We are so thankful to have it! We all get so excited at each meal when "medicine time" is now so easy!!
It may not be a cure -but until that day comes, we will be thankful for the blessing of "Fuzzy"! He definitely cost a lot of money, but to us, he's priceless!
at 9:26 PM
Monday, July 20, 2009
This is my disclaimer!
This is my blog. I'm writing it from my point of view about what I truly think and feel. I'm not going to sugar coat it. I'll be like the old person who you ask "How do you feel?" and they tell you in agonizing detail. If you ask me, I may say "fine". But here is where I'll tell it like it is.
I'm going to write about my opinions. Diabetes can be controversial. Don't say I didn't warn you!
I don't want to come across as "woe is me" or anything like that. We are very aware and grateful that Sweetpea has a disease that is controllable. We are very thankful that with proper care and tight control she can lead a long, healthy life. We know that there are many people in this world suffering from far worse things than diabetes. We praise God because we know our situation could be much worse.
In reading all kinds of things about diabetes, I have seen some debate over whether it's more appropriate to say that your child "is diabetic" or "has diabetes". Whatever. I'll say both.
The whole "diabetic" thing is about not labeling her 'diabetic' because it doesn't define her. Here's how I feel.... Diabetic does define her. It's part of who she is now. But it's not the only thing that defines her.
but slow to warm up
a real "ham"
a great puzzle worker
cute as a button
like an elephant - she never forgets anything
able to read (if you ask my Mom)
one tough cookie
It's just one of the many things that make up who she is. It's not now, nor will it ever be (knowing my little girl) the only thing.
at 9:41 PM