Monday, March 30, 2009

The Ritual

Rough day for my Sydney...although it got much better at the end of it. All is well that ends well, right? Today happened to be a site changing day AND a CGM (continuous glucose monitor) change day. There were tears, gnashing of teeth, fits of well as the crying Sydney was doing. This is one of the many reasons why we are doing Team Sydney again. I hate having to hurt my little girl to keep her alive. Some of you might remember our first experience with the CGM (click HERE to familiarize yourself and to have a little chuckle.) I still have a love/hate relationship with this piece of equipment. The reasons are as follows, in no particular order:

1) The needle is big and painful!
2) It causes the most tears...from both of us.
3)Did I mention the needle is big.
4) You have to "shoot" the 1 inch needle into her fatty tissue and it creeps me out EVERY time I have to do this. I don't think I will ever get used to this part of her disease.

I'm lovin' it because

5)It has really helped us to tighten Sydney's numbers. We have much better control when She wears this for a couple of weeks every other month.
6) Technology like this means that our scientists are learning so much about this disease...each new piece of technology, *theoretically*, means we are that much closer to a cure.

So while we tasted some of the "bitter" today, we also were able to taste the "sweet." After the site change and sensor input, we went to a local garden shop and bought the seeds for our vegetable garden. Yay! We are still at least a month away from planting, but the girls loved picking out the vegetables we will be growing! Then we had dinner at Arctic Circle and the girls got to play on the big toys there! Ok onto the pics...the most exciting part of this blog.

~The home for Syd's new least for 3 days until we have to find it a new home again.

~Close up of this little gadget that give Syd her insulin.

~This is her sensor site...or her CGM.

~Her CGM with the battery on and the tegaderm tape on so it stays in place. The bandaid under it is to help protect her tender skin. After 10 days with it on, the battery usually cuts through the skin leaving more open wounds to heal and/or scar. So this helps to keep the skin from breaking. The visible red marks are actually from her sensor 2 times ago. It took a long time to heal. I made the mistake of putting a bandaid over the hole after I removed the sensor. Well apparently tegaderm makes the skin very tender and when I took the bandaid off, it ripped skin off with it.

~After the above mentioned "doozys" for the day, we bought our seeds and took the girls to Arctic Circle. They had a great time, as you can see from the collage below. You can click on it to make it bigger if you so desire.

~Just in case you were curious how the CGM is inserted, we took a little video of it. Granted, the video is not great. At some point, I will try to get a better one made. For now, this will have to do. I honestly hate, hate, hate doing this. It is just an awful feeling. For those diabetic parents who follow this blog. Syd has the minimed 522 pump with the Real-Time CGM. Other pumps have different versions of the CGM and I don't know how they work. So just keep that in mind. It takes me so long to actually push the trigger to shoot it in. I hate this part...but keep in mind, the day did get much better!


Jill said...

:( The pics are always so heartbreaking! The ones of the CGMS actually scare me so I can only imagine what she has to go through!! Is all that blood normal? Glad things got better as the day went on :)

KLTTX said...

Oh Shamae, that video made me cry. I don't think I could do it. Sydney is SO brave! I am so proud of her.

Adam and Tara said...

Wow Syd is so brave, and so are you! I got nervous and teary eyed just watching the video....poor thing! Such amazing technology though. Good thing they got to go to Artic Circle after!

Lea said...

Hi Shamae,
I'm happy you found my blog- thanks so much for your comment!
I know how hard it is in the sea of new information to find people who have been through the ups and downs of parenting a child with type 1, but isn't it great when someone "gets" you? lol well, your daughters are both absolutely darling, and Sydney is a real trooper. That picture tore me up...I'm happy and sad at the same time to tell you, she will get used to it.
Your blog is great, I'd love to add you to my blogroll, if that's alright?
take care,

Blake and Erica said...

OMG!! OUCH!! She is a tuff little girl. That looks like a very hard job to do, but a least she is doing better :) Take Care

Dave and Jana said...

Oh poor little girl! I couldn't watch the video... the pics were enough for me. I'm glad your doing the walk again~

Rachel said...

WOW, that video made my heart melt. Oh Sydney, you are one tough little girl.

We decided not to do the sensor with Tristan yet because of the size of that needle. He would flip out!!!

I'm really scared of needles and quite honestly, I don't think that I could do that.

Kudos to mom and Sydney!!!

sarefamily said...

What a baby am I- I think I was more nervous watching that than Syd was doing it. She barely flinched, I trip out how grown up she is about the whole thing. On a lighter note- funny how Morgan is in the back asking for pudding!!!! Oh, to be a carefree child again!! Good job Shamae, I don't think you get enough credit for all that you do. Those of us who have never been there can begin to imagine. I imagine there are a lot of sleepless, tear filled nights for you. From the moment I met you at good old 711, I knew you would be a great mom. You were always the mother hen!! I love ya, and keep it up!!

J.R. and Michelle said...

What a brave little girl! I could hear her in the back ground saying "do it mom, just do it." As you were hesitating. She knows it will hurt, but she also knows it's necessary and she trusts you. Syd has such a good mommy, and daddy.

TheAlbrechtSquad said...

Okay, I just cried with the video. What a brave girl you have there!!!

Stringham Family said...

I can't even begin to imagine what all of you go through on a daily basis because of all this. The pictures kill me every time, but that video made me just sob. I can't believe how strong she is, and what wonderful parents she has. I love how calm and encouraging Loren is in the background trying to convince you to just do it. Some day I hope for all of you that there is a cure so that you don't have to continue this hard life! You are such a strong amazing family! I really miss you guys especially Syd!

The Lane Family said...

What a hard thing for both you as the mom because you know it is what needs to occur to help Sydney have the best life she possibly can, but you also see how much it hurts her to have it done. Let's pray that through continuing medical advances this will not be forever. One thought with Tegaderm (Avery has to use it with her feeding tube). Do they let you use adhesive removal pads to get it off?? I am sure they do or you are aware of it but it helps a lot with helping the skin.

A. said...

This is so sad to watch. What a hard thing. We went out with a family last week who's son has diabetes. I thought of you often that evening. Syndey is sooo brave. ((Hugs))

Micah and Jen said...

Okay...first I have to say that Syd is so completely amazing....and so are you and Loren! don't need me for pictures....these are just great! :) I am getting anxious to do them....I really really really want them to be good and what you this was a great thing for me to see so I know what you are wanting. It was heartbreaking at the same time though....she is really one amazing little girl!

periwinkle4 said...

hugs and tears~ wow, what a powerful post.

I'm glad they got to pick out seeds and go to Arctic Circle - Great things! You totally rock!

Dawn said...

It hurt me just to watch. :(
What a brave and strong group you are.

Julie said...

Shamae, that just breaks my heart. I know it's hard to have to do the things that hurt to keep these little girls we love alive. I've just never had to actually do them to her myself. I'm so sorry. I think you're both brave.

Darling16 said...

Okay - wiping the tears from my face. A powerful post. Your super brave Sydney!

Our lifetime journey said...

Hey Shamae,
Thanks for this post...I hear ya ...the things we have
to do to keep these kids ALIVE!
I saw a shirt the other day that said "Insulin is not a way of life, It is LIFE SUPPORT". Gavin's having a CGM put in next Thursday...and I am FREAKING out a little, since our last attempt lasted all of six hours and "beacuse it was itchy" he pulled it out while he was supposed to be sleeping...there was sooo much blood everywhere.
Syd really is a tropper and she couldn't be any cuter.
Hugs & see you on Sunday!

Wortham Family said...

Oh my goodness Syd is so taugh lucieli and I watched the video and saw the pictures and man it made us so sad, she keeps asking me all this questions about sydnie, I know that i won't be able to do what you do you are amazing, You guys are such a great example to me. Keep up the good work. Love you guys