Monday, January 11, 2016

Here is What is Happening Now! #Crohn'sFighter

This is the one where I update you on the Doodle AKA Super Sweet Sophie AKA Bad Ass Crohn's Fighter . . .

If you are new to the HWHAP bog, you can read Sophie's story here.
To get to the nuts and bolts of CD click here.

Sophie was diagnosed with CD when she was 4 years old, the 1st few years were spent out of remission searching for something that would get her into remission - she was on and off steroids and in and out of the hospital until we finally found what would work for her.  Sophie has been on Remicade since April of 2012 (she was 6 years old at the time) and we have had such great success.  She has been in Remission since that time minus a small set back in October of last year (2015) when she was unable to get her infusion on time.  Unfortunately, in October of 2014 she started suffering from psoriasis of the scalp that continued down her neck.  It was miserable but we kept it contained with creams and ointments.  We even upped her Probiotic (ProBio5) and added the Plexus Body Cream and that made it almost disappear.  Enough so that it was no longer an issue for her for almost a year.

But, sadly, it has come back with a vengeance on her face and in her ears which is miserable for her not to mention she is now almost 10 (WHAT?) and there is a cosmetic issue with it being all over her face.  She is self conscious and at the age of ten kids do not really have filters so she feels like she is answering questions about it all of the time and it is making her feel very embarrassed.  Beyond the cosmetics it is itchy, red, and painful so the girl is miserable.

The unfortunate part is that the Remicade is what is causing the problem.  Ironically, although Remicade is used to treat Crohn's Disease, Ulcerative Colitis, Rheumatoid Arthritis and Psoriasis it also in rare cases can cause Psoriasis

We have been working with her pediatric dermatologist and her GI team to try and get it cleared.  We met her with gastroenterologist this morning at Children's to discuss other GI options.  I was nervous going into the meeting because Sophie is doing SO well but her health is very volatile and changing just one small thing can throw her out of remission so quickly.

There is another anti-TNF drug that I was hoping would be an option but we found out today that Humira may cause the same issue and not solve the problem at all.  The other option that was offered was to put her back on Imuran or Methotrexate which did not work for her AT ALL when tried previously but they believe because she is older now and not sick there is a chance one of these could work at this time.  The problem is we won't know until we try and the unknown is incredibly scary.  When Sophie is sick she is very, very sick ---- I am certain none of us are ready to go through that again right now (or ever).  They would start her on steroids before making the change and then we will have to wean her off and take it one day at a time.  The thought of this is terrifying to me.  I have been sick all day.  The knot is my stomach is making me nauseous and I have been unable to eat all day.

There is a newer drug on the market but it is not FDA approved for young children.  Entyvio is another infusion drug but it works differently that the TNF blockers so there is a chance it could keep her in remission and prevent the Psoriasis.  The hospital's youngest patient to be approved is 16 and they were able to get her approved because she is "adult size".  Sophie weighing in at a whopping 40lbs most likely does not qualify but this is the route I am leaning towards if Remicade is no longer an option for her.

We meet with her dermatologist and gastroenterologist again on the 29th at 9a to make our final decision.  They drew labs today to see if she had developed antibodies to the Remicade so we will know more once those are back.  At this moment I am leaning towards trying to get her approved for the Entyvio but I may change my mind a few hundred times between now and the 29th.  Her next Remicade date is 2/1 so we have about until then to decide so that she doesn't get sick again.

Today while talking about the options for Sophie with the doctor and her dad I was looking at him and thinking this is it?  Us?  These are the 2 people chosen to make these huge medical decisions for this small human?  What?  Who thought that was a good idea?  There is absolutely nothing that qualifies us for this.  Who in the world thought this would be a good idea?

This is certainly not about me - it is about her BUT holy hell I feel so overwhelmed and inadequate.  The warnings on each drug are completely terrifying, the thought of her coming out of remission is also completely terrifying!

Life with a chronic disease is always such a fine balance of good and evil.
Or choosing the lesser of two evils.

Methotrexate can cause serious or life-threatening side effects on your liver, lungs, or kidneys. Tell your doctor if you have upper stomach pain, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes), dry cough, shortness of breath, blood in your urine, or little or no urinating.

Long-term use of Imuran increases the risk of developing certain types of cancers (eg, leukemia, lymphoma, skin cancer). A rare type of cancer called hepatosplenic T-cell lymphoma (HSTCL) has been reported in patients treated with Imuran. These cases have been fatal. Most of these cases occurred in teenagers and young adults who had Crohn disease or ulcerative colitis. Some patients who developed this cancer were using Imuran along with certain other medicines called TNF blockers (eg, infliximab). Tell your doctor if you have or have ever had any type of cancer.
Imuran may also cause serious blood disorders (eg, anemias, low white blood cell or platelet levels). Discuss any questions or concerns with your doctor.
* A TNF inhibitor is a pharmaceutical drug that suppresses the physiologic response to tumor necrosis factor (TNF), which is part of the inflammatory response. TNF is involved in autoimmune and immune-mediated disorders such as rheumatoid arthritis, ankylosing spondylitis, inflammatory bowel disease, psoriasis, hidradenitis suppurativa and refractory asthma, so TNF inhibitors may be used in their treatment. The important side effects of TNF inhibitors include lymphomas, infections (especially reactivation of latent tuberculosis), congestive heart failure, demyelinating disease, a lupus-like syndrome, induction of auto-antibodies, injection site reactions, and systemic side effects.

Entyvio is an integrin receptor antagonist. Integrin receptors are proteins expressed on the surface of certain cells. Integrin receptors function as bridges for cell-cell interactions. Entyvio blocks the interaction of a specific integrin receptor (expressed on circulating inflammatory cells) with a specific protein (expressed on cells in the interior wall of blood vessels), and thereby blocks the migration of those circulating inflammatory cells across those blood vessels and into areas of inflammation in the gastrointestinal tract. The most common side effects in patients treated with Entyvio include headache, joint pain, nausea, and fever. The most serious risks associated with Entyvio include serious infections, hypersensitivity and infusion-related reactions; and hepatotoxicity.

Wednesday, October 21, 2015

Seven Days

After 3.5 years of remission - it took 7 days for a full blown flare.  Seven Days.

I am not going to go into what a full blown flare looks like again.  If you are having trouble remembering or you are new to HWHAP - you can read: The Sh*t that is Crohn's Disease here! I don't mince words in that post.

Last Monday, the 12th was her Remicade appointment date but we found out the Friday beforehand that there was a lapse in her coverage and we were having trouble getting answers.  There were words like:  pre-existing condition, pre-authorization and you need to call financial services but ultimately they canceled her appointment and would not allow us to cash pay.  I was frustrated but not OVERLY concerned. #Mistake

I honestly had no idea she would get this sick so fast.  After 3.5 years you forget. You forget how completely awful it is.  It is so awful! I was even brazen enough to allow myself to believe that she would be ok.  Maybe she doesn't even need Remicade anymore!  Maybe, just maybe she can stay in remission without it!  Her doctor has told me countless times that they do NOT take children off of biologics - it just does not happen.  Why would I allow myself to think Sophie would be the exception? I don't know why.  I just know that it is hard, hard to know that your child will need this for the REST OF HER LIFE. It hit pretty hard. Again.  Which seems ridiculous but this disease is ridiculous so I think it is only fair that my emotions can be ridiculous too!

I left Sophie for a few minutes this morning to run to the gift shop and cafeteria.  While in the gift shop my emotions got the better of me and tears started flowing. Being here is hard. Coming through the ER was so hard.  We were in the same room that we had when Nate was diagnosed.  Being back on the GI floor brought back so many feelings.  Just ALL OF IT is hard.  Another mom came up to me and asked if she could hug me.  Not is a creepy, stalker way! She had tears too.  The mom bond is strong.  Being the mom of a chronically ill child somehow, if possible, makes the bond even stronger.   I didn't even get her name, or her story, but I could see the sadness in her eyes too. We are same same.

And now here we site in her comfy suite at Children's Medical Center Dallas overlooking downtown, an IV in her arm -- she is receiving the Remicade that was previously denied and we are hoping this kick starts her little body right back into remission.  She wants to go home and although her doctors wanted to observe her for one more night, they are granting her wish and letting her go home tonight! As long as everything goes well, of course.  She will miss school for the rest of the week as she rests and allows her body to recover.

2.5 years of hell was forgotten in the 3.5 years of remission but it only took 7 days to bring it all back and now I am hoping 7 days to get her back into the remission bubble.  It may take mommy a little longer to forget and will certainly take a while for the guilt to go away.   This sweet girl pays the price when things go wrong, when balls are dropped, and denials are made.  It hurts every fiber of my being to see her suffer.

This girl though is fierce, she is a fighter, a warrior and she will warrior on.
I am so honored to be this warrior's mom.  #SuperSweetSophie #CrohnsFighter #WarriorOnLittleOne

Thank you all for your calls, texts, and messages!  Thank you also for always allowing me to come here when times are tough.  When things are good I easily forget what comfort I find here, it is nice to always be able to come back when it is needed.

Wednesday, June 3, 2015

Sink or Swim, Emma Leigh

Tomorrow my 1st born child will leave elementary school for the last time.  It is her last day of 5th grade!  She is growing up so fast.  I remember when she was a baby and people would tell me that it goes by in the blink of an eye --- I honestly did not understand what they meant.  Now I do.  How did my baby become 11?  How is it that this precious little one can be leaving elementary school going in to .... ... middle school?

The year that Emma entered kinder was the year that Nate was diagnosed with Type One Diabetes.  We were about a month into the year and Emma was struggling with kinder.  It was a big school, a big class and I felt like Emma was getting lost in the shuffle.  We had just started exploring private schools when Nate was diagnosed.  Emma and her school problems quickly got placed on the back burner and stayed there for a while.  My entire world had fallen apart.  I was barely able to manage so it seemed at the time.  I felt like we left her there and she was going to sink or swim --- there was nothing I could do for her at the time.  Luckily, she swam.  She's a swimmer.  I love that about her!  We ended up adoring her school and she thrived there!

A few years later, Jim and I divorced and I left our home and the only school she had known to start our new life.  Not only was Emma forced to leave her beloved school but all of her sweet, sweet friends also.  Starting a new school in the middle of 3rd grade wasn't easy for her.  She missed her friends and everything was so different at her new school.  She struggled.  This time I tried to help but ultimately it was Emma that pulled herself up and swam again.  She's made lovely new friends and is such an excellent student.  She is so strong, so brave and so intelligent.  Her inner beauty just shines through so brightly. I could not be more proud of the young lady she has become.

So, bare with me tomorrow  . . .  I know I will fall apart when she walks those hallways for the last time.  The Mommy in me is absolutely terrified that middle school is going to eat her alive but I should know better.  My girl is a swimmer.  She will find her way.  I will help her when and if I can but I know she has the tools, strength and knowledge to handle herself with kindness and grace.  She will be fine.  She will be more than fine --- she will be great.

She made me a mommy --- she made me heart whole.  I love her so much!

Hopefully, tomorrow I will have an update on how the day went and post some pictures on her very last day in elementary school.  Pass the tissues, please!!!

Monday, December 22, 2014

Happy Everything!

Happy Everything from our home to yours!
Whatever you celebrate - make it wonderful!

A huge thank you to Tressavent Photography for our 2014 Family Photos!

We had so much fun with Tressa taking our family photos this year! The wind was blowing 40-50 MPH and that wind brought in a cold front! Nothing could stop her from getting these pics!! She never stops taking pictures and just got the most fantastic shots!! We just love them and are so pleased to share them with our friends and family!



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) e-mail account.
Please send your complaints to
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


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.


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!


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:

Want to get started?

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:

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:    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 or message me on Facebook:

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.