Saturday, January 15, 2011

The Trial, The Dex, and The DOC

Ok yes I kinda used "The Lion The Witch and The Wardrobe" as inspiration for the title. But its kinda been like that these last 3 days. I found a door that led me into this whole other world while its not perfect you still love it.

Most of you I'm sure read my previous post "Our Day". Where I mentioned we had started a MM Guardian Trial. Well we are on day 3 and I already have a review. Interested? Hope so cause Im gonna give it anyway ;). In all fairness to MM I am going to list the Pros and then Cons and then which outweighed the other.

-Small in size and weight
-Sensor sticking on nicely
-Justice said insertion didnt hurt
-Easy to use
-**Predictive alerts- not just hey youre low but hey!! Youre gonna be low in 15 minutes. (or 30 depending on settings).

-Small screen
-No numbers on graph.
-Lost signal while it was next to him on the bed.
-Lost signal when he sleeps on his butt (where sensor is).
-65% of the time was a 30 to 50 point difference in sensor reading vs bg.
-You cannot calibrate more than 4x a day of it loses accuracy even more (words from Customer service)
-You cannot calibrate 2 hours after eating, exercise or a low.
-You cannot calibrate if not a flatline
-** It missed 4 lows at school the 2nd day. Showing him flatlined at 133 all day. He had gym that day. The day he didnt it was great.
-In summation works best when inactive and not adding in any variables. Which defeats the purpose to me. When Justice is being active playing wii or running track sensor cannot keep up and is delayed almost an hour for the next 3 hours.

So we would have to say overall we were not very impressed by it. It seems everything I heard is true aside from the insertion being painful.
Now in the previous post "Our Day" I also mentioned the most amazing unbelievable surprise!

Well we actually had two! First while on twitter one of my followers lets call her Ms C started talking to me about CGMs and her son. Such a cool D mama! She then did something I couldnt believe! She offered me her sons old MM Guardian CGM! She asked nothing in retun, she just wanted to help us out. I couldnt believe her generosity. I of course said heck yea! And started planning!

Now a few weeks ago a D mama names Mrs H offered to let us use her lil mans Dex so we could find out what was going on with all of J's lows. It was to arrive anyday. Along with Mr S' transmitter to help us out in using the Dex. I knew it wasnt for keeps and I have wanted a Dex for J ever since joining the DOC so I was stoked to be able to try theirs out!

So hubby goes to check the mail I think he was floating the whole time as he was so moved by Ms C's offer. He walks in the house with a box. A fairly large one. No return address. Huh. Ok.

I open it, all the while I have Mrs H on the phone with me (I adore this D mama btw). I start going through it and thanking her for sending sensors and everything else along with reciever! Shes clueless. "Lexi I sent the reciever thats it. I love you but didnt have any extra sensors". Ok now we are both stumped. She was sending the reciever, Mr S the transmitter and another favorite D mama Mrs L was sending a sensor. So who sent all this??!!

After some investigating (texting) I found out Mr S not only sent his extra transmitter but his extra reciever and sensors! TO KEEP!! I WAS IN TEARS!

I immediately called him and we spoke for a good 20 minutes. Hes one of my favorite DOC members. One of the first I met actually. He was diagnosed around the same age as J and has been type 1 for 43 years. Hes a role model for not just J but me too!

So now we have a Dex!!! And still the offer from the lovely Ms C to use the MM CGM.

Can I just say wow. I have never in my life met a more amazing group of people. Humbled, honored, grateful and overwhelmed I am.

I called Dexcom and they put me in touch with a trainer. Justice's trial with MM end Tues so probably Tuesday night he will be rocking his Dex!!

I found out the transmitters usually last from 12 months to 18. The one we have is 12 months old. So we are on the look out for anyone with an extra one we can have or buy half the price. A new one is 635. A new Dex with transmitter is 1100. Wouldnt make sense to just buy a new transmitter alone. Which would entail borrowing money and fundraising. Mediciad does not cover any CGMs and we couldnt afford that on our own right now. Luckily the sensors are 300 a box for 4 if you cash pay and I hear usually 2 can last a month. So 150 a month for sensors. We are going to sacrifice to save that and also have people willing to help 20 here and there. But of course we are always looking for donated or half price sensors.

I never would have thought this possible. The last year has been very hard for us. I went from a great paying job to a so so job to being laid off.

I count my blessings everyday that after 2 years (Justice had no insurance until August of 2010) we have insurance which supplies us with everything we need to keep our son alive.
I am beyond grateful that my dad was willing to finance Justices Animas Ping since mediciad wouldnt cover it. (supplies yes pump no huh?). And I am eternally grateful and overwhelmed by the generosity of the DOC. Ms C, Mrs H, Mrs L & Mr S I thank you from the bottom of my heart. Words cannot express my gratitude. I will continue to do my part, pay it for forward & help others in need.



Hallie said...

That is incredible, Lex! I am so happy - no, make that THRILLED for you guys! That's what makes the DOC so freakin' amazing - the PEOPLE! Love to you all I can't wait till J can rock his Dex!

Shannon@ The New Normal Life said...

that is a beautiful and wonderful post!! I am so thankful for the wonderful parents of the DOC! I am so glad you know have the things you need to help you keep J healthy. Ill be interested in reading about your DEX experiance we dont have anythign like it so it will be educational for me!

Penny said...

Amazing and fantastic and I can feel the love. So glad the DOC came through for Justice, for you, for your family. We have each other's back and that's what I love about all you gas. Thanks for telling us Lexi, what a blessing Scott is and the others Ms 's too.
Pay it forward, you got it girl.

Amy said...

I love the title! It totally works for the post. The movie rocks, too ;)

Amazing things happen to amazing families, my dear. You are an awesome pancreas for Justice and this is how you get things done. Make your need known and it will arrive without strings attached. How can anyone do anything if we don't know there is a need?!

I can't wait to hear about the DEX trial.

Wendy said...

GOD IS GOOD!!!!!!!! I'm THRILLED for you and can't wait to see a pic of him sporting HIS VERY OWN Dex :)

Renata said...

Awesome, Awesome!

Laura @ Houston We Have A Problem! said...

I love the DOC and I love you! XOXOX

Reyna said...

Hip, Hip, Hurray!!! Lexi this is fantastic news and I am so happy for you. I cannot wait to hear about your experiences with Dex and how Justice likes it.

Loved the MM review...we tried one and I was just sitting here nodding my head "yep, yep, and yep" as I read through your observations. I did NOT like it at all.

The DOC is remarkable for sure Lexi! (((HUGS)))

Donna ((Sweet Momma)) said...


I am surprised at the calibration issues you had with the MM CGM... we have a slightly different model(paradigm link) but the calibration rules are not nearly so strict!

I am SO happy that you have your very own dex, though! We have had some of the same issues with losing sensor if he sits on his behind too long, as well as some of the variances between BG and sensor glucose, so we have been considering getting a dex as well... to try.

Celebrate With Us!