Thursday, November 6, 2014

Dexcom Disappointment

Nate began Dexcoming in 2010 at the age of 2 years old - It wasn't FDA approved for children yet but I was instantly in love.  



You can read about Nate's Dexcom trial here or you can click the Dexcom tab at the top for more information.  It was nice that Nate was so young when we began our Dexcom journey because he couldn't tell me NO at the time.  It quickly became just another poke in his world every 7 days.  We were very fortunate that at the time our insurance covered (we were on COBRA at the time) the Dexcom 7 and the sensors.  Unfortunately, once we lost COBRA we were on our own for the cost of the sensors which were about $350 per month.  



We have always been blessed by the DOC (Diabetes Online Community) -- we have been gifted sensors and traded other diabetes supplies for the sensors also.  Shhh . . . don't tell anyone but D Moms are the BEST and we all help each other out with supplies!!  We have never gone without sensors!! 

In 2012 Dexcom released the latest and greatest Dexcom product, the G4 and I could not wait to get my hands on that awesome little thing.  






Unfortunately, Nate is on Medicaid and although we are very fortunate to have it, sadly it does not cover a CGM for Nate.  They think it is not a medical necessity -- I disagree completely but that's another post for another time!  I won't lie -- I was a little jealous seeing all of my friends in the DOC posting pictures of their kiddos with the new technology!  Suddenly, the old Dexcom 7 that I had been on love with for the last few years seemed like an antique and quickly lost its luster.  (Now, how I miss its durability and super strong charging port!)

Fast forward to summer of 2013 --- Nate's dad called and told me he had a friend that wanted to GIVE us a G4.  Say what??  I think I cried.  --- I probably cried . . . I always cry.  

We received the new system in August of 2013 just in time for Nate to start kindergarten.  I was overcome with appreciation and happiness!  The gentleman that gave it to us probably has NO idea just how much it meant to me.  It was such a relief to be able to keep Nate safe while attending school!  



Then fast forward again to December of 2013 and suddenly I was in moderate panic mode!  Our receiver stopped working!  The little port that you plug the charger into had broken loose and was lodged inside the receiver.  We had no idea what had happened!  I called his teacher and no one had dropped it --- nothing --- it just broke!  It was crazy!  I was not in full blown panic mode because I figured I would just call Dexcom and they would replace it with the warranty.  WOW!  WRONG! Because we did not purchase the Dexcom system they would not honor the warranty.  Full BLOWN panic mode! 

Nate's dad called his friend that purchased it and after a lot of back and forth between all of them Dexcom decided to replace it.  In the meantime an amazing D mom had sent me their old receiver since theirs had just been replaced by insurance.  WOW!  

Fast forward again and the same thing happens.  For no reason the port just breaks.  Seriously?  Another amazing D Moms sends us their spare receiver.  I have the most amazing friends --- I am very much aware of this!  

Repeat that song and dance 2 more times.  We have had 4 receivers break for NO REASON.  I know this sounds highly suspect but it is so true.  Nate rarely wears the actual receiver otherwise I would maybe understand it breaking because he IS a rough and tumble little boy!!  But at school his teachers wear it on a lanyard around their necks which is where I wear it also when he is with me and when at home the G4 picks him up all over the house so we just leave it on the kitchen counter.   SO WTH DEXCOM??  

Here are a few posts I found in a FB group from others experiencing the same problem:

* Grrr the phone keeps saying cgm connection error. Fearing a broken charge port I plugged Dex into the computer and it showed the charging icon, so thankfully not that. Wish my 14 year old was home!

* Dead Dexcom, 2 days after warranty expired. Messed up the port. There's a lot of traffic on this site - so can someone link me to the links for where to get the case info and which cable to buy? Going to try again. We're going to try and get a second receiver, but not sure how much they cost. Has anyone had luck with this? We want my daughter to still have a Dexie in her pouch that she can check when she wants. The Nightscout rig would be in her bag.

* I'm curious has anyone has had the fragile charging port on the Dex break? Our was pushed inwards from an upside down cable. Already received a replacement but was wondering if it's something I could fix so that we'll have two Dex's? And if so how do I fix it?

* I contacted the FDA to see where to send complaints on Broken USBports. FYI
Thank you for contacting the Division of Industry and Consumer Education (DICE) at FDA's Center for Devices and Radiological Health (CDRH) DICE@fda.hhs.gov e-mail account.
Please send your complaints to ocmedicaldeviceco@fda.hhs.gov
Sincerely,
VJ Huang
Division of Industry and Consumer Education (formerly DSMICA)
Office of Communication and Education
Center for Devices and Radiological Health
U.S. Food and Drug Administration

* Think we may have the dreaded broken Dex port. Can't get it to connect. Won't show it is charging, even if I plug it into the Dex charger. Hoping someone is going to tell me I just need to restart something or do something simple to make it work again. 

This post was mine in a FB group (Dexcom related):

I did a search for "Broken Port" in this group and A LOT of posts came up. I would like to get a rough number just from this group of how many people have had a broken receiver port?!?!
We have had 2 --- both non rig related. We lost one in December for no apparent reason (just normal charging) and last night when I pulled one gently off the charger I realized that it was loose and now will no longer charge. We were 3 days outside of the warranty in December but they ended up replacing it for free but now we are WAY outside of warranty.
I love the product but am disappointed with how poorly the G4 is made.
So, could you post a quick comment if your Dexcom port has broken at any point Nightscout related or not. Thanks!


And here are a few of the responses:

Ours broke under warranty, not Nightscout related

Ours broke also only like 3 months after we got it! They replaced it but only after asking me a trillion questions to make sure it wasn't my fault first!

Broke under warranty. Using NS; however, it was just a simple charge one minute, gone the next. I can't blame it on anything other than poor port construction.

Yes. 20 days outside of warranty. Not Nightscout related.

Lost one last fall to normal wear and tear. (Also lost the circular button on one to normal wear.) The port on my rig receiver is looking wobbly, but it's a 2 year old receiver. The 3D printed case is helping.

 Is there a way to complain to FDA or somewhere see if they would extend the warranty. It is a medical device and it should hold up beyond a year. I have cell phones that have never broken for 2 yrs or more.

 Broke under warranty- we do not use the nightscout yet-

Yep. Broke under warranty. Non rig related

We've had 3 break. Only one was while using nightscout and only 2 were under warranty. I agree, wish it was better made for the price and the fact that it is used all day everyday!

Broken! Port collapsed while I was inserting a cable for NightScout. Seems to me the port shouldn't collapse inward.

Had one port break under warranty about 9 months ago - so totally pre-rig days.

1 broken port, before night scout

1 broken port here.

1 broken port - Nightscout related

1 broken port, not the Dexcom used with the nightscout rig.

I've had a port break and fall into the body of the receiver. Couldn't charge it and called Dexcom CS they replaced it without issue.

So, I guess it is nice to know we are not alone BUT REALLY, DEXCOM?  This is NOT an inexpensive piece of medical equipment.  In fact, it is really a VERY expensive piece of medical equipment that people rely on daily.  

In one FB group a few people tried to repair the receiver so of course, Ian gave it a shot on 2 of them but had no luck!!  

There were pictures along with the post but I do not want to violate that person's privacy -- here are the directions:

"If ever you've broken a USB port in a Dexcom Receiver - and if you haven't yet, you will - here is how to take one apart with a dremel and a makeshift router table. A new 50 cent USB micro female connector, some careful soldering, and you're on your way again." 

Here are some of the pics of G4 that he posted and some pictures of Ian trying the repair:






I would like to point out that none of the broken ports were Nightscout related and after we lost the last receiver and were down to 1 receiver I stopped using Nightscout for fear that we would break our last one.  That was a good thought but unfortunately it broke anyway.  #LAME  

The last one broke last Friday night and again I was in full panic mode.  Those that don't live with T1 cannot possibly understand how important Nate's CGM is to me.  I couldn't sleep - I was so upset so I decided to start searching for affordable alternatives (because sadly buying one new is NOT in my budget).  I found one for sale online for $200 (in Hong Kong - #weird) so I texted Nate's dad and asked if he would split the cost with me.  He didn't respond right away but when I woke up for the 3AM check I noticed he had texted me back during the night and reminded me that he still had the one that Dexcom had replaced last December!  OMG!   Happy tears again!!!  I totally forgot he had that one!! So now we have a brand new one but it has no warranty.

So, for real we are now on our last receiver and I am going to continue the uphill battle of fighting Medicaid for them to cover the Dexcom G4 and the sensors!  In the mean time I am terrified of charging this receiver for fear the port will break.  And honestly, as a mom with a son with T1 and a daughter with Crohn's disease it's not like I need one more damn thing to worry about!!  

I sent the last broken receiver back to Dexcom yesterday with a letter.  I am confident that they won't replace it but I am asking them to at least look at the issue and if nothing else use it to help improve the product!  



Wednesday, September 17, 2014

FIVE

Today has been 5 years since Nate's diagnosis.
I remind myself of this daily.



  Five years.



I've been watching the calendar and watching this day creep up for weeks now.  And for weeks I have been planning a very upbeat blog post to tell everyone how wonderful Nate and I are and how we have come so far that I rarely even let diabetes slow us down anymore.  Which is mostly true but man . . . . the last few weeks have kicked my rear.  Diabetes is not cooperating no matter what I do.

He's high.

or

He's low.

He's 44 double arrow down at school and about to pass out, feeling dizzy, he's rushed to the nurses office.

I make the smallest of changes .05 less basal to be exact and he's high --- so, so high.  Nearly 400 at school.

There has not been one 'good day' in weeks.  WEEKS people.  Diabetes is being a major asshole and I am exhausted and feel terrible for how terrible Nate must be feeling.  I honestly don't remember ever having so many peaks and valleys since his diagnosis --- 5 YEARS AGO.

I stole this pic from Alexis --- I heart it!!


So, even though I thought for sure I was going to blog about the rainbows and unicorns -- I'm just not feeling it.  Although I rarely cry over Nate's diagnosis or diabetes anymore last week I had a major meltdown.  After 7 nights of no sleep and just fighting the numbers I did it --- I broke down and cried.
It had been a while.

Did it help?  Not really but sometimes it just needs to happen.




As I sit here this morning trying to wrap up this post that was supposed to be upbeat and reassure everyone that after 5 years I am totally fine with Nate's diagnosis and diabetes it has become clear that I am not always fine with it.  Some days are fine.  Some days are not.  I don't dwell on it but I do allow myself to feel it, be sad about it and even very occasionally melt down but I can no longer live there.  That is not healthy for any of is in this family.  One day last week I wanted to just throw my hands up and say -- that's it!  I'm done!!  But that isn't an option!  I know the phrase "what doesn't kill you makes you stronger" is so overplayed (Thanks for that, Kelly Clarkson) but it is true.  I will get it all figured out and be stronger for it.  There will be a few weeks of calm, maybe even dare I say a few months of calm before the next storm hits and I will enjoy the calm, I will embrace the calm and I will LOVE the calm.  PLEASE bring on the calm!!



The only thing that is consistent with Type 1 Diabetes is that it is never consistent.
I know this.  This will pass and we will be fine.

All that really matters is that Nate is fine. He is wonderful and he is so brave.  I don't even know who Nate would be today without diabetes.  He's had it for so much longer than he hasn't.  I don't know who either of us would be.  We have both changed in so many ways over the past 5 years.  He has become big, strong and brave and well, I have become old, tired and mostly grumpy (that's a post for another day --- The Side Effects of Type 1 on D Moms).



I am the only one in my world that knows what today is --- I don't think anyone else realizes.  Is it like that for all families?  Nate was too young to remember as were the girls.  His dad doesn't know the date and I'm pretty sure no one else does either except for the other D moms out there that had a child diagnosed on this day too.  It was the worst day of my life and I remember every horrifying moment of it like it was yesterday.  The very thought of that day 5 years ago has me crying now.  UGH!  Ok, so now I have had 2 diabetes meltdowns this year.  That's really not too bad!!

To read about Nate's diagnosis -- click here.

Please read below for the symptoms of Type 1 Diabetes which is often misdiagnosed as a virus or the flu then watch the attached video and share the information.  You could save a life!!

From the JDRF website:



Symptoms of Type 1 Diabetes


Knowing the warning signs for type 1 diabetes (medically known as diabetes mellitus) could save a life.
Symptoms of type 1 diabetes (these may occur suddenly):
  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness
If you or someone you love exhibits one or more of these symptoms, call a doctor immediately.








Education about the symptoms of type 1 diabetes is critical because type 1 can easily be mistaken for more common illnesses, such as the flu, and misdiagnosis can have tragic consequences. JDRF has literature which lists the symptoms and treatments of type 1 diabetes and hypoglycemia (low blood sugar)–available for download here.
As many as 3 million Americans may have type 1 diabetes. Each year, more than 15,000 children and 15,000 adults – approximately 80 people per day – are diagnosed with type 1 diabetes in the U.S.
Knowing the symptoms of type 1 diabetes can save a life. Please share what you’ve learned with everyone–family, friends, teachers, doctors. Until a cure is found, the more who know, the more lives will be saved.
Help JDRF raise awareness about the symptoms of type 1 diabetes–a chronic, debilitating autoimmune disease that affects adults as well as children. As with many diseases, early diagnosis goes a long way toward preventing serious health problems, and even death.






Today it has been 5 years since Nate's diagnosis.

I am thankful I listened to my gut and took him in and would not leave until I had answers.  I am thankful for the community of other families that live with type 1 diabetes that have supported us and have become our family.  I am thankful that I have been given the opportunity to help other families and I am thankful that I am able to educate on Type 1 daily and hope that I can be as much help to others as they have been to me.

I am thankful for Nate and all of the brave people living with Type 1 Diabetes.

Brave Miniature Humans!


FIVE.  WOW!

Thursday, August 14, 2014

Nightscout / CGM in the Cloud and How We Roll . . . #WeAreNotWaiting


Because blogging every 6 months or so seems to be my new pattern I'm going to go ahead and hammer one out . . . 

But really - - - I'm so super excited about something and I want to share it with everyone!  

My friend, Hallie at The Princess and the Pump and I have been following a grass roots movement for a while, we both joined the FB group, CGM in the Cloud a few months ago and stealthly read every post and looked at every photo before deciding to jump on board (FINALLY!!) and set up our own Nightscout systems.   What is Nightscout also known as CGM in the Cloud?  Well, it's probably way more technical than I can explain so I will refer you to the site and the set up instructions after I try to tell you my version . . . 

Our Dexcom G4 CGM (continuous glucose monitor) receiver is now plugged into an Android Moto G telephone.  There is an awesome and amazing and magical app on the Moto G that takes the Dexcom information and sends it to a magical cloud and that magical cloud sends the data to my very real iPhone, iMac and iPad.  I love magic!  My iPhone is connected to my Pebble SmartWatch via bluetooth.  Some really smart person that developed all of the magic listed above also created a magical app for the Pebble which gets the data from the iPhone and displays it on my watch!!  Did I already say that I love magic?  

Ok, I know it's not really magic but like I said I will leave all the techy details to the amazing parents that developed this fantastic tool.  Here is a copy and paste from the CGM in the Cloud page on Facebook:


CGM in the Cloud is a group to share your experience with a CGM remote monitoring system, Nightscout, allowing real time access to a Dexcom G4 CGM from web browsers via smartphones, computers, tablets, and the pebble smart-watch. Dexcom G4 CGM data is just a glance away:http://imgur.com/a/cxcGG?gallery.



Want to get started? http://go.nightscout.info


The Nightscout system requires a Dexcom G4 CGM, a USB OTG cable, an Android device, and free cloud-hosting service such as azure or heroku. If things go smoothly, it can be set up in about an hour. If you run into speed bumps, there is an extensive support network here on Facebook, and here on the forum: http://nightscout.info/forum/

The members are not willing to wait for an approved solution and instead are working out the bugs with Nightscout’s open source code. The system is not something that you can purchase from Dexcom, not something you can download from the Google Play or Pebble App store but an imperfect system that requires work to install, support and equipment to purchase. If you want a perfect system, this is not for you, but if you want an educational tool so your kids/friends/girlfriend/boyfriend/spouse/parents can be monitored while they are in another room, in another state, at a play date, sleepover, sports activity, or even at school or work than please read more. We are closer than ever to the prospect of a safer, more effective, less burdensome life with type 1 diabetes for millions of people and WE ARE NOT WAITING!

CGM in the Cloud and its support infrastructure: created and maintained by volunteers on nights and weekends; people who live with diabetes and understand the burden of "not knowing the number". All we ask is that you Pay it Forward.


The group is fantastic!  You can ask questions or do a search and most likely find an answer to anything you can think of asking --- someone has probably already asked it and the kind people in the group have jumped in and helped solve the problem!   There are over 4500 members of the Facebook group but I believe at last count only around 400-500 actual users.  

Nightscout has given Nate just the freedom that he needs at just the right time!  He's SIX now and going into 1st grade (I know --- whaaaaat?).  He likes to roam the 'hood, hang with the neighborhood kiddos and play outside with his friends (without mom hovering like a crazy person).

I'm also loving the freedom it's given me!  These pictures below are of me out on my 1st run while leaving Nate at home with an older neighborhood friend and Emma Leigh!  It was fantastic.  They all felt like they were getting a little bit of freedom and honestly I really needed that run!  I know there are running apps for the Pebble but 1) I really like my Nike watch and B) I didn't want to have to switch between Pebble faces to see Nate's number and my running stats.  I'm perfectly aware that I looked like a big dork --- I don't care!



Photos from Nightscout/CGM in the Cloud:




My out of pocket cost for this set up was not too bad --- the Pebble smart-watch is optional!  
Moto G Phone (at Target)  ----  $59.99
Nintendo DS Case to carry it -  $9.00
Cables needed for Nightscout - $10.00
Pebble Smart Watch -----------   $150.00 

I activated the Moto G on the Ting network using a referral code from another Nightscouter and then Hallie used my referral code which gives me a $25.00 credit for both so there are no charges yet but I've heard on average it will run about $9 per month.  If you are thinking about setting it up on the Ting network my referral code is:
 https://zohe6r28jh7.ting.com/    that code will give you a $25 credit!!

It uploads data to any computer, smart phone, tablet or computer so the Pebble is absolutely not necessary but makes it work very well for us!  



I also wanted to include this video that Emma, Nate and I made yesterday about how we carry our Diabetes supplies around --- including the OmniPod PDM and the Nightscout set up.  The last time we made a video about our "D" Bag was in April of 2011 ---- you can watch that one HERE and you should watch it because it's so funny and cute and Nate and the girls were so teeny tiny and adorable!

So, here is the new video:



You have to watch the video to see how we are going to roll out Nightscout at school --- if you have any questions . . .shoot me an email at houstonwehaveaproblemblog@gmail.com or message me on Facebook: https://www.facebook.com/PinkDrinkTexas

And as of right now this video will not load on YouTube or on Blogger so I may throw my iMac and iPhone out the window at any moment.  Hopefully, by the time this posts everything will be loaded.  If not, well I'll go with Plan B.  I don't have a Plan B yet but I'll figure it out!

It loaded!!  YIPPPPEEEEE!!!

Thanks for stopping by and please go check out Nightscout because #WeAreNotWaiting.



Monday, January 13, 2014

Merry Belated Christmas


I've received a couple of emails this weekend from people commenting about different posts on HWHAP.  I love getting feedback from readers and then getting to know them via email or Facebook.  It makes it all so much more real.  Anyway, having received several emails this weekend it made me want to dust off the blog and bring it up to date.  I will start here:

We had family pictures taken before Christmas so I thought I would share a few of them here.  The kiddos have all gotten so big!!  This year Nate will be 6, Sophie will be 8 and Emma & Lexi turn 10!!




I guess I could have changed the card to a Happy New Year card but meh . . . Merry  Christmas!













Photo credit to Simply Indelible ---- Angela did such a great job taking quick shots and capturing the precocious personalities of all of our littles.  


Keep Calm and Christmas On?




Tuesday, November 5, 2013

Brand New Me



To say that I hate the above picture is a complete understatement.  UGH!  That photo was taken a few years ago along with some other really great photos of my littles but I never shared the one above with anyone! My kids are adorable - duh!  If I could crop myself out it would be perfect!

When this photo was taken I was still spinning from both diabetes and Crohn's. Although you cannot tell it in this photo, Sophie was very, very sick and I believe we ended up in the hospital for a week just a few days after this was taken!  I knew the photo shoot was coming up and it was all I could do to get clothes picked out for the minis.  I didn't even give myself a 2nd thought.  I remember the morning so clearly getting everyone ready and then thinking ---- what the hell am I going to wear? Do I even own makeup anymore? Do any of my clothes even fit right now?

The answers were:

Who the hell knows!
Not much makeup!
Nope, nothing fits!

I knew I didn't feel comfortable with my looks that day but it wasn't until we got the proofs back that I really took a look at myself and wondered who I had become.  Since the birth of Ms. Emma Leigh my weight had gone up and down -- that will happen when you are pregnant every 2 years or so!




I think the above picture is my heaviest ---- Size 14.  Yes, size 14.
Did I just admit that here? 


I'll add a few cute photos of Emma here because she rarely gets any FaceTime on HWHAP:





Ok, back to my point . . . had I gotten to that yet?  I started looking at old pictures and got totally distracted!

This post is supposed to be about me.  So, my weight has fluctuated a lot since having kiddos but I had gotten down to a comfortable size 6 after I lost the Nate weight.  I was totally happy at a 6.

Until . . . . dun dun dun . . . Nate was diagnosed.  You all know how hard that was blah blah blah -- I've blogged that to death.  Then Sophie was diagnosed with Crohn's and blah blah blah it was hard again.  My point being after those 2 major life changing events I totally lost myself.  I no longer cared.  I gave up on me.  I was just trying to survive the day to day of raising 3 kids along with diabetes and Crohn's in the mix.  I think my weight went up to an 8 and then a 10 again which isn't a huge deal to some but I am 5'2" and fluctuated between a size 2 and 4 before I had Emma.

Then last summer I lost a lot of weight due to stress and other factors that are not bloggable but then as soon as I got happy again I started gaining and gaining and before I knew it I had yo-yo'd back up!



Same photo shoot as above.  I call those my lunch lady arms! 
(No offense to lunch ladies or their arms!)


Then in January of this year I turned forty! FORTY! Why do I keep admitting these things?! 

I started trying to lose weight again in March when during spring break I couldn't fit into any of my clothes. What the what?!?!?! 
So, I started dieting hard in March and was feeling totally frustrated and depressed by the end of April with NO results. Had my metabolism changed so much so quickly?? UGH!
Meanwhile, my friend Shay had started taking a supplement called Plexus Slim to help her lose weight. When she started I scoffed at her for trying it and down right laughed in her face when she tried to persuade me to take it too. Until, she lost 8 pounds on a two-week trial. She had me at 8 pounds...
I started taking the Plexus Slim and an Accelerator pill each day the 1st part of May and was down to where I wanted to be within 30 days. It sounds crazy but I promise it worked that fast for me. I didn't weigh but I had a pair of shorts that sat on my bathroom sink and I would try them on each week until they fit. They'd been sitting there since spring break!!
After 30 days on Plexus I decided to do another 30 days to maintain and now I just take the pink drink because I love how healthy I feel.

I need to add that I have NEVER felt better in my life. My energy level is off the charts...it is crazy. I also feel like it has helped my anxiety level so much. I am just happy! I know it sounds crazy. I am actually still taking the Plexus Slim drink, not the accelerator, because it makes me feel so great.

To recap --- I was needing a size 8 when I started, my goal was size 4 and now I am wearing a size 2. Being the shortie that I am it's not too small or to thin. I still carry some meat in my butt and thighs but that is just how I am built.

I feel like it helps curb my appetite and gives me an extra boost of energy each day. It's really taken away my snack cravings and I can always use the boost after a night of checking blood sugars. #DMommaProblems
I was already working out and running before I started Plexus - I didn't change anything there but my results after starting Plexus are quite noticeable. I've read many testimonials where people say they changed absolutely nothing and still lost weight.
After I lost the weight people kept asking me how I had gotten so thin so fast . . . I sent Shay so many customers! I would give them Shay's web site and they would order. Finally, she convinced me to become an ambassador and start sharing the products with others since I, and so many people we knew, were having great results and loved it. I told her I am not at all "high pressure" and feel totally uncomfortable trying to get my friends to buy something from me. 
She stressed it was more like sharing a great secret than selling and asked me to commit to putting it on Facebook just once a day. Reluctantly, I did, and now my business is blowing up! I know I am driving most of you crazy with my FB posts! But . . . it truly does sell itself . . .because IT WORKS! Also, it has become a valuable source of income for me so that I can continue to stay home and care for my minis. Working from home is a true blessing as I am able to be at the school with the children whenever they need me.

So, if you want to give it a try for yourself, you can order at my web-site or message me for more information.
My web site is: www.pinkdrinktexas.com
The best part is the products are all natural with no stimulants!







Sunday, November 3, 2013

Hostage Negotiations - Type 1 Diabetes and Kindergarten






I started this post back in August when Nate started kindergarten.  I didn't really get further than the title and some brief research on hostage negotiations.  Why hostage negotiations?  Well, during the entire first 6 weeks Nate struggled with school, with bg checks at school, had major meltdowns and started crying every morning before we even left the house for school.  I'm not sure I can adequately describe how completely awful it was.  

I wanted to do the right thing for him, for me and for his teachers.  I asked for advice here and on FB and received so much conflicting advice that it was completely overwhelming.  Should I stay with him at school? Just go up there when it is time to check his bg? Just go up when it is time to bolus? Not go up at all and make him be a the big boy I know he can be?  

I felt like if I did or said the wrong thing this could impact him and the way he feels about school and diabetes for the rest of his life. 

 I did actually google hostage negotiations because I felt like those people have to make split second decisions that obviously impact people for the rest of their lives. 

A little dramatic?  Meh . . . maybe but I felt completely overwhelmed by Nate's behavior and really didn't want to damage him for the rest of his life (more so that I probably already have!). 

The one thing that stuck in my head from a FB friend and person with diabetes (PWD) was that some things are negotiable and some things are not.  Checking your bg is non-negotiable.  Going to school is non-negotiable. That's where I started.  I told Nate those 2 things and tried to help him by going to the school to check his bg and bolus for lunch.  That didn't work.  Nate had so many things going on in his little kindergarten noodle . . . 

Separation anxiety, diabetes anxiety, the fear of having someone he didn't know checking his bg, fear of someone besides me giving him insulin, a new school, a long day, new friends, so many unknown that were made worse by fluctuating blood sugar levels because I had no idea where to start with school basals! 

When Shay wrote the following statement to me, I don't think any of us knew just how accurate  it would be:  

Monday, Nate starts kindergarten and everything will NOT be all right. It will be a stressful, fucked up, bloody nightmare. Literally - there will be blood. There will be tears; yours and his and possibly innocent bystander's. There will be panic attacks, yelling, second guesses, sleeplessness (more so than usual), and Tommy Lee Jones may be there to announce, "we have a runner; search every out house, farm house, and locker." If, by chance, Nate makes it to his class, you may get the call that he has taught everyone a few new choice words like - oh I don't know - holy shitballs, for instance.

Nate literally would run out of class, he would kick and scream, he would cry, he clung so tightly to me that I could not get him off of me.  At one point, I had gone to the school to help with his lunch bolus and he threw such a crazy fit that I had to run and hide in the office from him and watch 2 teachers, the vice principal and school counselor carry him down the hall kicking and screaming.  I looked at that child with a blank stare, as teared were rolling down my face, I literally did not know who that boy was at that moment.  That is not the way Nate behaves and I had no idea what to do.  I told the staff that his bg levels were at a safe range and to please treat him the same as they would any other student that was behaving that way.  So, they did. I got a call about 15 minutes later from the VP to let me know that he had calmed down and he wanted her to send me a picture of him playing with play doh and behaving.  What a relief that was for me. 



Isn't he freaking adorable? He's so stinking cute, he's my only boy and he's my baby.  I couldn't help it --- all of this school drama broke my heart.  I cried a lot.  I cried when he cried, I cried when he didn't cry and I cried because I just didn't want him to cry anymore!! Sweet, sweet boy!!

We tried a lot of different things throughout the first 6 weeks to get him comfortable and happy at school.  What worked for us may or may not work for you, you may think I am the worst mom ever or the best one on the planet . . . . your life, your kid, and your diabetes may vary!

  • Nate had to check his sugar.  That was not negotiable.  He made the choice to do it himself and not let the nurse do it.  That worked for me and it worked for him.  I think it gave him a little bit of control that he needed to feel more comfortable with all of the changes going on.
  • If he threw a tantrum and refused to go into class (sometimes this could take up to 10 minutes) then he would lose privileges.  If he couldn't act like a big boy and make big boy choices then he would lose his big boy privileges.  He lost his iPad a few times and he thought that was the end of the world!
  • Ian started taking him to school.  Part of the problem was separation anxiety from me so he seemed to do a little bit better each day when Ian took him.  He still cried and had to be reminded to make big boy choices but this was the beginning of big changes for Nate.  
  • We did a lot of positive reinforcement. If/when he made the choice to go into class and make good choices he was rewarded by us and by his teacher.  There were days that he refused to take his backpack off all day.  Gradually it started coming off earlier and earlier and he was rewarded for his good choice.  He now goes into class, removes his backpack and starts the day with a smile!!
  • His teacher is amazing!  She is so patient!  She also kept the communication with us open with daily emails, text messages and morning updates when Ian dropped Nate off.  She was a huge part of him getting over this hump!  

Nate actually loves school now although he won't admit it.  When I am there he hardly acknowledges me and will certainly not give me any hugs or kisses.  He's made new friends and really seems to enjoy learning!  

This was certainly one of the harder things we've had to deal with since his diagnosis and I did at times think things would NEVER get better but they did.  They always do.  

Tough times don't last . . . tough people do!!  





Nate is one tough little dude!



Tuesday, October 22, 2013

Crazy, Happy Shamae




October 28, 2009 is the day that Shamae found me.  Nate has been diagnosed with Type 1 for just over a month and I felt like I was drowning in sadness, overwhelmed by diabetes and longing for a community of people that understood how I felt.  She commented on my blog post that day and so began a friendship that will remain in my heart forever.  She played a huge role in helping me survive the darkest time in my life. How do you repay someone for that?

When we 1st met online there was a smaller group of D mommy bloggers and we all read and commented on each other's posts religiously.  We became a family.  Commenting, texting, calling and those amazing Sunday night chats.  I looked forward to those chats all week.  I can vividly remember our conversations.  We shared about diabetes and so much more.  We laughed and cried on those chats and the bond we formed became unbreakable.  Unbreakable!

Life moved forward and the Type 1 Mom blogging community exploded!  We found each other on Facebook and the Sunday night chats faded.  Our littles got older and our blog posts grew further apart but my friendship with Shamae did not.  She was so good about calling and texting.  We texted each other so much sometimes just to say I love you that we had our own code for it . . . DNQ.

As I learned of her passing this weekend I read countless posts from D moms all over the country saying the same things.  She was the 1st D Mom that they met online, she always had a smile on her face, she was a lifeline to them, she would call or text and lift their spirits with her kind words . . . it goes on and on.  Not that I thought I had the exclusive on Shamae's friendship but I have been BLOWN AWAY by how many people she touched.

I do not think for one minute that this post is an adequate tribute to such an amazing woman.  If I could find the words to tell you what is in my broken heart right now it might begin to do her justice.

I hope her family knows and is comforted by the fact that Shamae's strength, love and support helped build a community of strong moms that will continue her legacy by always supporting one another! We will also openly welcome  mothers with newly diagnosed children into the community with love just like she did for all of us.

It is what she would want us to do.

Sham made this awesome video years ago. I can't stop watching it and thinking about how far we have come and how so much of that has to do with her!!







Thank you, Shamae for everything.  I love you. DNQ!