Tuesday, July 19, 2011

New Infusion Set...

Through much deliberation and Facebooking...we tried the 30 infusion set tonight. Seems to be doing well so far. Lily gets her very own pump tomorrow and there has been talk of naming it Sparkles. Love kids...

One of my friends on Facebook mentioned that if anyone else had read our thread (it was about Lily going high and getting ketones a few times), they would be reading Chinese. I found that so funny...and thought provoking! We speak a whole other language in our diabetes bubble than the rest of the world does. We were discussing infusion sets, sites, ketones, Lantus, basal, bolus, inclusions, etc...it's crazy to me that this is all second nature to my tongue. It just rolls off like it's the most common thing in the world to discuss.

Well, very short post but I am being summoned upstairs by Lilyboo herself to go count her change...so, I am off! Love having my babies home with me. AND IN ONE WEEK MY OTHER BABY COMES!!!! Can't wait to get a big ol' hug from my boo! xxoo

Friday, July 15, 2011

Zombiesque Day...

I find myself in the form of a zombie lately. I was trying to talk to a director at work yesterday and the words felt as though they couldn't form. I couldn't pronounce the words correctly. I was mumbling and stumbling each letter off of my tongue. I don't think the director noticed. My mind is working pretty clearly. I am able to complete thoughts. There are just little parts of the machinery of my brain that don't seem to be quite in sync.

So, it dawned on me this morning, ironically at dawn, that I am so tired. Starting the pump is an awesome thing but it is also an exhausting thing! I had forgotten in a short six months how quickly not having Lantus on board can affect Lily's numbers. If she is without insulin for a time as small as 4 hours, her ketones are 3.7. So, last night, I changed her site. We had eaten Mexican food for dinner (bad idea) and she didn't want to finish what she ordered so she had bits and pieces of our plates (another bad idea for carb counting)...plus chips. As a result of the above two things...it was very hard to determine what the 338 BG was from at 10:00. Was it a bad site or bad carb counting?

This is where the love of the ketone monitor comes in. I can't believe more people don't use this as religiously was we do. The test strips are very expensive but that's small potatoes compared to how Lily feels when she has high ketones...and the aftermath of high numbers that follows. It is the only way for me to determine if her site is bad.

I checked her ketones, .2.  I sat in bed Skyping with Matt, trying to stay awake, while I waited for 11:15 to roll around so I could check her again. I finally was able to check and she was 396 with .1 ketones. At this point, I was pretty sure it wasn't the site so I gave her a unit of insulin and set the alarm for 1:30. At 1:30, she was low 200's. Phew. Then, of course, I was worried she was going to drop since she had so quickly already. I set the alarm for 3:30. She was 196. I stumbled back to bed only to find Abby had emerged and was asleep in there. I was too tired to carry her back up, so I snuggled up next to her and passed out until my alarm went off at 5:45. Ready to go to a full day of work. It was then...at dawn...that I realized I am really freaking tired. Like seriously tired. And it makes me look old. And that makes me grumpy.

So off I go to work with bags under my eyes and a half working brain. Again. And Matt wonders what my obsession with coffee is...

Wednesday, July 13, 2011

The Tragedy...

This is hard to read...I will warn you. This story has hit home. Not a second has gone by in the last week that I have not thought of these kids and their families. I never had the pleasure of meeting this family and that is unfortunate since they seemed so wonderful. They were friends with a lot of people that I know. The Jewish community in Houston is very close and it's a small world so everyone knows everyone regardless of which temple you belong to. My girls are being raised Jewish...with a hint of Christmas. My best friend is Jewish and she grew up with this family...or at least Robin.

The story has gone worldwide. It is so tragic that you literally can't wrap your head around it. You can't begin to understand. Your mind just can't go there. It's not possible. Yet you want to help badly. And let me tell you...the outpouring of love and support from the Houston Jewish Community, and other communities, is overwhelming. This has been the sole focus of a very large city...to wrap 5 million sets of arms around these little children and make sure they are okay. Shabbat candles were lit across the country for the Berry family last Friday evening. Bake sales and lemonade stands have been set up raising over $13000 for the boys' care. This weekend there is a car wash and there are jewelry parties planned everywhere to benefit the fund that has been set up. Tutoring hours have been donated, haircuts, meals, etc. It never ceases to amaze me the act of kindness that humanity can have. I get chills every time I think about it.

I am sharing this story for two reasons. One, for prayers not only for Peter and Aaron so that they can walk again...but for Willa who was so brave to give the officers the information needed to contact family...at 6 years old. For all three kids to live as normal and happy life as possible after this horrid event that forever changed their little world. Second, to raise money for them. Even a dollar will help. These boys will have many, many years of therapy ahead of them and will need some serious funding to help the family members that have so graciously and lovingly taken them in.

I also pray for some peace for all of the people that I know that knew them...I know they touched your lives in such a magical way and I am so, so, sorry for your loss. Read about the story below.

Article from Mail Online


Tuesday, July 12, 2011

User Error??

We have had quite the whirlwind with this whole little pump round 2 thing. For starters, I read Reyna's Beta Buddies blog on sand and the Ping. I even emailed her and got directions on how to prevent the sand in the site thing. Little did I know that since we are on a trial, I do not have the caps to prevent the sand from entering the site. So, we got sand. In the site.

It had been three days since we had the first site on but for some reason, I felt it not necessary to change the cartridge. So, I just changed the site. Two hours later, high BG with ketones. So, I did a site change #2 at the beach. I'm still not sure if it was the pump or being disconnected for such a long period of time swimming. I was NOT bringing this pump in the ocean, waterproof or not.

Things went well until Monday at lunch. I got a call from the sitter that Lily was 470. I never showed her how to test ketones. Lovely. So, I left work and flew home only to discover the cartridge was bone dry. Hmmm...lesson learned there. I changed everything out and we had beautiful numbers all the way up until bed, 119, 94, 85, and so on. At my 2 AM check, 301. Well, we had mashed sweet potatoes at dinner and I'm not sure I bolused enough so I gave her some insulin, she crawled in bed with me and we both passed out. At 6:30 AM, I roll over and check her...407 with ketones at 3.7. WTF? I FLEW OUT OF BED. Lily was nauseated and her tummy was hurting. I immediately gave her insulin via a syringe. She was laying on the bathroom next to my toilet. I checked her an hour later, high 300's and 3.5 ketones. I gave her another unit via syringe. I checked 30 minutes later, 286 and 1.9 ketones so no ER.

I got ready for work in hopes of being able to make it there. She seemed okay after finally eating some breakfast so I left for work only to make it half way there and get called back home. She was 350. AAARGGHHH! I called Animas and our CDE immediately came over and replaced the pump. So far, she is doing okay. We have had no more ketones but her numbers have been higher.

So, here I sit in a frenzy...just waiting for what lies ahead of me. Surely, all of this extra insulin is going to catch up to her at 1 or 3 or 4 AM and she is going to drop like crazy. And I am going to be right there stalking her at all hours. My plan is to put her in bed with me tonight.

Basically, today was one of those days that just sucked. That's really all there is to it. It was stressful and leaves you feeling helpless. Your child's body is attacking itself and there is a war going on inside of her. And I can only do so little. It makes me angry and sad and exhausted all at the same time. It makes the rest of the world seem like it is unconquerable. It leaves me feeling anxious and unsteady. When I get that way, I get defensive and just plain not nice. So, if I crossed your path today in a blaze of fury, I am truly sorry (pest control guy, pest control guy manager, old pest control guy, boyfriend...).

After a nice pep talk from Matt and a tickle attack from the girls, I am done wallowing in self pity and I am ready to conquer again...tomorrow.

Thursday, July 7, 2011


Too tired to write much and unfortunately, the day didn't turn out so great in the end but Lily is pinging and she is so excited and I am so proud of my baby! I can't stop hugging and kissing her! She's such an amazing little girl! I am so blessed!


It's PING DAY! Wahoooo....the Animas rep will be here at 5:30 today to give Lilyboo the week long trial. She is already begging for some Tallygear (thank you to the oh so beautiful and wonderful Lexi from Justice's Misbehaving Pancreas for turning me on to this). Lily is so excited. She thinks the Ping is "cool."

I am so thankful for Camp Rainbow, FLL, JDRF, fellow D Mama Bloggers, all of it for making this journey for us that much greater. I always wondered if camp would have any impact on Lily other than just being so much fun and wow...what an impact it had. The counselors, Junior League volunteers, ADA volunteers, medical staff and the campers all make it the best week of the year for our whole family! Not only does Lily not feel alone in this battle but neither does Abby or myself. It's such an amazing thing.

Next up on the Coan Diabetes Tour is the JDRF Walk October 29th. We get to dress up this year in our costumes!! Walk season is upon us so my wheel's are turning for fundraising ideas! I know I am stealing Reyna from Beta Buddies Virtual 5K idea so look out for that with our little twist. Eric is making a video again this year (he better any way since I have no clue how and he's the creative one). So many ideas and so little time to plan!

Update tomorrow on the PING! I am pinging off the walls and better get to work! :)