Houston . . . We have a PROBLEM!

Pod Problems . . .

2012-01-21T17:04:00.001-06:00

Just before Christmas we started having terribly stubborn highs . . . correction after correction and Nate was still high. Not super high but he would linger too long in the mid to high 200's with no movement and often develop ketones.

I never give up on a pod - EVER. I've never had a pod just not work! There has to be a reason it's not working . . . bent cannula, occlusion, bad insulin or even a little boy that randomly removes pods without my knowledge. I could not get to the bottom of this!!

These highs were baffling at 1st but then I remembered the Apidra issues that others had blogged about. So I started watching for the highs and low and behold right around the 48 hour mark Nate started going high for no reason.

What the what?

No . . . Please no!! This cannot be happening. Pod changes are so bad already! I cannot imagine having to now do them every 2 days.

I knew at 11a on Christmas day that it was the 48 hour mark and I should change the pod but the little man was having so much fun --- I just couldn't do a pod change on Christmas day.

I should have done the damn pod change!!

Later that day I had a mini meltdown as his PDM read HIGH (over 500) after a day full of carbolicious treats and after numerous corrections his Dexcom said HIGH with a double arrow up.

I have to say just as I was falling into my diabetes groove something like this pops up and just totally ruins my good groove. So annoying! I was totally hating diabetes on Christmas day. I cried a little.

I started thoroughly inspecting the pods.

Most of them looked like the above picture. They were occluding but not enough to set off alarm. We did actually have one occlusion alarm but just one. Insulin was still getting through --- it was almost as if Nate's body was having a reaction to the cannula or the insulin. Normally the cannulas do not look like that when I take off a pod. I have no idea. I think he wasn't going super high because I kept correcting so some insulin was able to get through but not all. I really had no idea so I called my fabulous OmniPod peeps and they arranged for us to get some Novolog to see if that helped until we could get through the holidays.

I really struggled with changing from Apidra back to Novolog. We've been pumping with Apidra for 18-months and I LOVE IT. I was not looking forward to going back to Novolog but I was also struggling with changing Nate's pod ever 2 days. What to do - what to do?!?!

And without doing a thing --- just like that . . .

As quickly as it started ---- it ended. No new insulin, no new pods, no change to anything. Diabetes just started playing (somewhat) nice again.

Seriously wanted to pull my hair out and then wham all is back to (diabetes) normal.

All I can say is what the what and that's just because my grandmother still reads my blog and she gets mad at me when I say what the fuck?!?

Catching up . . .

2012-01-18T20:48:00.000-06:00

Clearly I am way behind and have a lot of catching up to do. Big changes happening over here at the Houston house. For now I'll just let you know that I'm so far behind that my Christmas decorations are still up and Nate insists on turning the Christmas tree lights on still (embarrassing!). They were supposed to come down this last weekend but . . . well that's another story for another day.

We had a nice Christmas --- it was crazy and hectic but it was great. It's always nice to see Christmas through the eyes of the littles.

Since I'm so far behind . . . here are our Santa pics --- Nate really enjoyed meeting the big guy!

My 3 Littles . . .

Hopefully, I will get around to taking the Christmas decorations down this week and find some time to blog a bit this month!

I miss my friends that live inside of my computer!

Failing Nate

2011-12-08T21:05:00.000-06:00

Today was Nate's 3 month endocrinologist visit otherwise known as my diabetes report card.
I am perfectly aware that I should not feel as if it is my report card but please be honest here, folks. Who of us does not feel this way? Raise you hand? Yep, that's what I thought.

Nate's a1c this summer was 6.6, in the fall it crept up to 7.2 and today it was up to 8.3. It hasn't been that high in well over a year. To say that I was devastated would be an understatement. I left the office in tears barely able to hold myself together to drive Nate and myself home before having a full on breakdown in the privacy of my room.

Yes, I fell apart.

And Yes, I read this article today by Dr. Ponder . . . Diabetes is more than about test results, numbers

It didn't help.

It doesn't matter the reason ---

Yes, Nate is going through a growth spurt, and he has been sick for 3 weeks and we run him higher at school, and he's a pod remover and a food sneaker. Our nurse practitioner listed off all of the reasons. He told me we really didn't need to make any changes --- he's just a growing boy and this is what happens to growing boys. I'm sure he hated seeing the tears roll down my face but I couldn't help it! None of those things matter to me. I feel that I am failing him. I've had a few days of diabetes burn out and now those days are seared in my brain as the worst mommy days ever.

Failing Nate is not an option. This is serious business. He will have this stupid disease his entire life minus14-months.

Complications

By Mayo Clinic staff

Type 1 diabetes can affect nearly every major organ in your child's body, including the heart, blood vessels, nerves, eyes and kidneys. The good news is that keeping your child's blood sugar level close to normal most of the time can dramatically reduce the risk of these complications.

Long-term complications of type 1 diabetes develop gradually. Eventually, if blood sugar levels aren't well controlled, diabetes complications may be disabling or even life-threatening.

Heart and blood vessel disease. Diabetes dramatically increases your child's risk of various cardiovascular problems, including coronary artery disease with chest pain (angina), heart attack, stroke, narrowing of the arteries (atherosclerosis) and high blood pressure, later in life.
Nerve damage (neuropathy). Excess sugar can injure the walls of the tiny blood vessels (capillaries) that nourish your child's nerves, especially in the legs. This can cause tingling, numbness, burning or pain. Nerve damage usually happens gradually, over a long period of time.
Kidney damage (nephropathy). Diabetes can damage the numerous tiny blood vessel clusters that filter waste from your child's blood. Severe damage can lead to kidney failure or irreversible end-stage kidney disease, requiring dialysis or a kidney transplant.
Eye damage. Diabetes can damage the blood vessels of the retina (diabetic retinopathy). Diabetic retinopathy can cause blindness. Diabetes can also lead to cataracts and a greater risk of glaucoma.
Foot damage. Nerve damage in the feet or poor blood flow to the feet increases the risk of various foot complications. Left untreated, cuts and blisters can become serious infections.
Skin conditions. Diabetes may leave your child more susceptible to skin problems, including bacterial infections, fungal infections and itching.
Osteoporosis. Diabetes may lead to lower than normal bone mineral density, increasing your child's risk of osteoporosis as an adult.
Brain problems. Although the exact reason for the link isn't clear, people with diabetes have an increased risk of dementia and Alzheimer's disease.

All of that is on me right now.

Failing Nate is not an option ---- his life depends on me.

That is such a huge weight to carry ---- I can't screw this up. There are no re-dos here, Laura!

Every 3 days

2011-12-07T22:50:00.001-06:00

Diabetes is always here.

Every day.

I wake up to diabetes before I wake up to my children. The 1st thing I do with my sleepy eyes and groggy head is check Nate's blood sugar then bolus for breakfast. Obviously I eat, breathe and sleep diabetes but it's all routine.

It's become part of our lives.

Eat. Sleep. Bolus.

Routine.

It's just become pretty routine.

Not always an easy routine but after 2 years it's become routine nonetheless.

But every 3rd day . . .

I dread the 3rd day.

Pod change day.

We have to change Nate's pod every 3 days. It's not hard.
You take it out, fill it up, prime it, stick it on and POP it. Sounds easy enough right?

I dread pod change day.

It has nothing to do with the OmniPod. I think I would hate site change day even more if we didn't have the OP but I really just dread the 3rd day.

I usually change Nate's pod at night when he is sleeping (see videos below for why). Maybe because it is the end of the day, I'm tired and it's just one more thing I have to do. Or maybe it's because I can't stand the smell of insulin, or looking at the big giant syringe that fills the pod. It could be because I know how much Nate hates this day. He screams, he cries, he begs and pleads. I take it in stride but I think maybe that could be what makes me dread it so much. Even when he is sleeping and he barely stirs --- I know. I know how much he hates it.

Every 3rd day I also give thanks for the wonderfulness of the OmniPod. This wonderful little medical device makes the days in between pod change days so much more bearable.

Bittersweet loving something so much that keeps my son alive yet causes him such anguish.

Warning: This video is hard to watch. We had to do 2 pod changes in 1 day (Nate and Pancake were playing a little too rough and we lost a pod). Nate was tired and absolutely did not want to have his pod put on him. I've worn the pod on numerous occasions and although there is a loud pod when the needle inserts the cannula for me the pain in more like a small (very bearable) pinch. Granted --- I am a 38 year old woman and he is a 3 year old little boy.

Afterwards I asked him a few questions:

Keep calm and OmniPod on . . .

#30 Ramblings of a Crazy D Mamma #NHBPM

2011-11-30T22:30:00.000-06:00

This is the last day of Diabetes Awareness month. I'm a little sad. Did I do enough? Did I do anything at all? Although I'm sure all of my Facebook friends are breathing a huge sigh of relief --- thank God Laura won't talk about diabetes anymore --- it doesn't stop here for me. Diabetes awareness goes on and on and on and on for me and for my family. I've really enjoyed writing a post each day for the National Health Blog Post Month #NHBPM.

I still have several posts brewing around in my head so maybe I'll keep up the momentum. Maybe not. We'll see.

I was thinking back to my 'life plan' --- yea I think I had one when I was a lot younger. I was supposed to be married by 25, have babies by 27, white picket fence, happily ever after and blah blah blah . . .

I'm so glad things didn't go as planned. I am not living the dream but I know I am blessed.

I am 38 years old (oh so close to 39) and am right where I am supposed to be. I know it -- I know that my children were given to me for a very specific reason. I am not bragging or conceited but there are people out there that absolutely could not do what I do. That's right I said it. I may have even been one of those people 10-15 years ago. My life is not easy. It is blessed and happy and loving and wonderful but it is not easy.

When people tell me that they could never do what I do I often respond with --- yes, yes you could and you would. But you know what ---- sometimes I'm like --- I know, you would totally suck at this.

My life is pretty much consumed by my children. I've lost who I once was but I am ok with that --- I know I will find me again. Right now I am doing what needs to be done to keep all of my children happy, healthy and safe.

There are days that I don't shower, brush my hair or leave my house. Some days are so damn hard I yell at the top of my lungs ---- Why me??? When I do that I usually remind myself of the people that I think actually could not do what I do and thank the stars that my children were given to me and not them.

I am one amazing 'D-Mom' but I am total failure as a wife. Two Chronic illnesses has not been kind to my marriage. I read a comment once that there had to have been cracks already in a marriage if something like this could break it up. I'm calling BS on that. Diabetes is a life changer. It's not what we signed up for when we said I do and it has changed all of the rules.

I've lost my faith along the way. I don't blame diabetes or UC for this at all. It just is what it is. I believe in something but I'm not sure what exactly.

I hate it when people tell me 'God doesn't give you more than you can handle'. Hate it. A good friend of mine told me this instead ---> Laura, God did not give this to you. She went on to say that God would see me through it but he did not give it to me. I'm totally down with that! God did not GIVE diabetes to Nate. God did not give UC to Sweet Sophie. He didn't. I'm sorry but if there is a God I do not believe he would give this to anyone.

Sometimes I get diabetes burn out. Bad. This weekend one day I only checked Nate's bg 3 times. What the hell? I relied way too much on Dexcom. I was just over it. I feel a little guilty sometimes about the burnout. I don't even have diabetes --- am I even allowed to get burn out? Nate has to live with it for the rest of his freaking life. <--- sometimes that really bums me out.

I remember when Emma was a newborn and I was so overwhelmed with being a mommy. No one tells you how hard that shit it. OMG - maybe they did and I didn't listen but damn I was so tired and totally overwhelmed. Yea - that's what diabetes feels like. All of the time.

Sometimes people are talking to me and I have no idea what the crap they are talking about. Blah Blah Blah Blah . . . . normally this is what is going on in my head . . .

So, if I'm staring off into space with a confused look on my face. Please see photos above --- I'm trying to do that in my head or I could just be ignoring you. Hard to say for sure.

I get embarrassed when people tell me that I am an inspiration or I've helped them through my blog. Because I know sometimes I just sound like a CrAzY ass cracker bitchin' and moanin' about all of my problems. That being said I'm glad my brutal honesty has helped in a small way.

Things I hate:

I hate the stigma associated with diabetes. Come on, people. Nate was 14-months when he was diagnosed. You seriously think it was lack of exercise? You're a damn fool.

I hate it when people offer up sugar free options. What the crap? It still has carbs.

I hate the way I expect everyone to just understand.

I hate that time right before dinner when everything is coming together. The main dish and the sides are all perfectly timed to be done at the same time, I'm trying to get the table set, measure and weigh Nate's food, check his blood sugar and bolus him while I am still counting the carbs in my head. That totally stresses me out. Oh and I hate that it happens every single night. Well, except when my timing is off and the meatloaf isn't done on time.

I hate it when random people tell me about their great aunt that had to have their foot removed because she had the 'bad kind' of diabetes.

I hate the way diabetes has made me fat. I stress eat and am too tired to work out. That's the truth. So tired!! Need more sleep!

Things I love:

I love Nate's insulin pump, The OmniPod

I will love it more when it is smaller.

I WOULD love it if we had someone like Steve Jobs working in the diabetes world. I want to bolus from my iPhone.

I love the Diabetes Online Community. Still wishing for the commune and the sister wife. I already have at least one picked out. Hi Nicole!! :)

I love that Nate was able to get on Medicaid when private insurance would not cover him.

I love that I still have a killer sense of humor. I'm funny.

I love that I am able to blog about all of this and I love that people actually read it. I love comments -- remember?

I think that's all I've got.

Diabetes doesn't define me but it certainly has made me a completely different person than I was before it came into my life. I don't always like what it's doing to me and to Nate and to my family but it's here to stay so I might as well put on my big girl panties and deal with it. Right?

Thank you for reading my last post for. . .
NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#29 Nick Jonas talks about Type 1 #NHBPM

2011-11-29T21:21:00.000-06:00

The Houston family is down and out with strep so today I am posting this video of Nick Jonas (such a cutie) and Larry King discussing Nick's T1.

Enjoy.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#28 The Blue Heel Society #NHBPM

2011-11-28T06:03:00.000-06:00

Are you a member? Don't know what I'm talking about?

Check it out:

The Blue Heel Society

About:

This organization is dedicated to all people living with, caring for, or interested in diabetes. The Blue Heel Society was formed on November 13th, the eve of World Diabetes Day, 2011 by a dedicated trio of spirited advocates who committed themselves to promoting awareness, pursuing the continued fight for a cure, highlighting obstacles people diagnosed with diabetes are faced with, and promoting advocacy for the diabetic community as a whole.

The Blue Heel Society accomplishes this NOT by raising funds, but by fueling our crusade with the strength, dedication, and passion of our partners.

Our Mission:

Advocacy - Awareness - Encouragement - Support

The mission of The Blue Heel Society is to deliver a clear, united voice via organized assembly within our own affiliation, and also at local and national gatherings, events, conventions, and other venues, helping to dispel myths, offer education and to champion the needs of people affected by diabetes.

We choose to stand up, be seen, and be heard in our Blue Heels.

Meet the Co-Founders

"LEXI":
Mother of two amazing super-heroes, wife to my better half, JDRF Walk Chair/Volunteer, and SO much more. Strong advocate for Type 1 Diabetes, Alopecia Areata, & Congential Adrenal Hyperplasia.

"T":
35 years as a Type 1 Diabetic. Endurance mountain bike racer, blogger, bear dodger, and tech guy.

"DWOWW":

Mother of a young pump wearing Type 1 diabetic, diagnosed 18 months ago. Has a keen eye for shoes, and a heart for raising diabetic awareness and promoting advocacy for the cause.

You can follow The Blue Heel Society at Blue Heel Society and on Facebook at https://www.facebook.com/BlueHeelSociety and on Twitter at twitter.com/blueheelsociety

Don't wear heels? That's ok --- neither do I!

Kick it in your blue shoes . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#27 Making it look easy #NHBPM

2011-11-27T20:54:00.000-06:00

Even when Nate was 1st diagnosed and I had no idea WTF I was doing I had an overwhelming desire to at least make it appear as if I knew what I was doing. I think it is the mommy in me that wanted to make people think that everything was ok --- everything was just fine. I've always been pretty cool and confident and I didn't want anyone to know that I was scared to death.

I even remember someone telling me a few days after Nate was diagnosed that it would become second nature and that she knew a family that had been living with type 1 for years and it was no big deal. Wow! I thought --- I can't wait to get to that point --- no big deal? Second nature?

Bring it on.

Yea --- I'm here to tell ya --- 2 years and 2 months later. That's a load of crap. Yes, it is not quite as overwhelming as it was before but it's certainly still a big deal and it's really not that easy ----- NO MATTER HOW EASY I MAKE IT LOOK --- it's still hard. I am just a mom --- I am NOT a pancreas. Yea, I read the book, Think Like a Pancreas and it helped but I'm still not thinking that much like a pancreas. That pancreas has a freaking hard job.

Does this look like I'm thinking like a damn pancreas?

It's a hard job for sure.

I encourage everyone to read this article on CNN Health - Artificial Pancreas could be 'holy grail' for type 1 diabetics.

And then sign the Artificial Pancreas Petition here, please.

Living with type 1 diabetes has become our life. It is the life that Nate was given and as his mom it is my job (at this point) to do everything in my power to keep him safe and healthy. I hope I do make it look easy. I hope people looking in from the outside don't see how it consumes me. Most of all I hope that I can teach Nate how to live easy with diabetes and I hope that the FDA will make the artificial pancreas a reality for all those that live with type 1 diabetes.

GO. SIGN. IT. NOW.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#26 Dr. Google and Diabetes #NHBPM

2011-11-27T18:53:00.001-06:00

Yea, yea, yea - - - It's the 27th. I missed my post yesterday. But here it is today. Better late than never.

Nate's been sick. He's been running a fever for days and has a terrible cough. It's been really bad. Obviously, graduating from the Google School of Medicine I tried to diagnose the little guy but sadly a fever and a cough can be just about anything . . .

Whooping cough, swine flu, bronchitis, pneumonia, or just a common cold.

I usually can diagnose my family a little better than that. I guess I'll have to cave and actually take him to a real doctor if he's not feeling better by tomorrow. Sweet little guy --- I can't remember the last time he wanted to snuggle so much.

I am thankful that we have been able to manage his diabetes well through this illness. I cannot imagine dealing with him being so sick and still being on NPH. He has not eaten much at all in 3 days --- we've had a few lows but nothing crazy. We've cut back on basals and we've stopped pre-bolusing for anything that he eats because he doesn't seem to finish anything.

Although any illness with Nate makes me a little nervous, this time I have felt much more at ease. It's never fun to see your children sick but what many don't know is that with T1 something as small as a common cold can become something quite serious quickly. #Scary

I feel like we are through the worst part with this one and am feeling so thankful for Nate's OmniPod and the ability easily dial back his insulin intake.

Keep calm and Google on ----

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#25 Words to live by . . . #NHBPM

2011-11-25T21:45:00.001-06:00

Thanksgiving has put me a little behind and now Nate is sick. Little man is running a fever and has a terrible cough. This is pretty much the only time he will snuggle with me anymore so please accept my apologies but I'm keeping this short and sweet so I can go snuggle with my sweet little boy.

I thought tonight I would post some of my favorite saying and words to live by (thank you, Pinterest!).
So, here you go . . .

and the last 2 are just funny ...

Snuggle time . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#24 - Free Pass - Happy Thanksgiving! #NHBPM

2011-11-24T19:39:00.000-06:00

Today I am using one of my 'get out of the post free' days so that I can enjoy spending time with my family this Thanksgiving day.

Happy Thanksgiving!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#23 A Re-Post - Welcome to Holland #NHBPM

2011-11-23T21:45:00.002-06:00

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience, to understand it, to imagine how it would feel.

It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland ?!?" you say. "What do you mean Holland ?? I signed up for Italy! All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say: "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Copyright © 1987 by Emily Perl Kingsley
All Rights Reserved

I've learned to love Holland. I love all of the amazing people in Holland and I am a stronger woman because of my life here in Holland.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#22 - Hope on 2 Wheels #NHBPM

2011-11-22T13:10:00.000-06:00

My friend, Scott Kasper is doing something pretty amazing and I am so happy to share it with you here.

Scott and I 'met' shortly after Nate was diagnosed with type 1 diabetes. I read this post by Scott on Six Until Me and stalked him until I found him ---- not only did I adore his photography but also his fantastic way of positively sharing his family's story of living without limits. Scott and his wife, Rachel have 3 boys, 2 of which have type 1. Both Rachel and Scott raised over $15,000 this year for JDRF by participating in the JDRF Ride to Cure. Aaaaaamazing!

Scott and his friend, Michael Chadwick have now founded Hope on 2 Wheels which will promote the need to find a cure for type 1 through cycling. Please see below for more information on Hope on 2 Wheels and then go 'like' their Facebook page to show your support.

Description	There are approximately 3 million Americans living with Type 1 Diabetes. More than 40 children are newly diagnosed with T1D every single day! According to the Juvenile Diabetes Research Foundation (JDRF), approximately 1 out of every 20 people with T1D will DIE from low blood sugar. Hope on 2 Wheels riders will work to help raise awareness of JDRF activities aimed at prevention, improved treatment, and ultimately a cure for T1D
General Information	In June 2012, a group of cyclists will leave JDRF headquarters in New York City and ride non-stop, nearly 250 miles, to Washington, DC. Our ride will be a symbolic journey on which we will travel with a message of hope! We HOPE that the FDA hastens the process to approve new and innovative therapies and devices, not the least of which is the Artificial Pancreas! We HOPE that Congress continues to fund the various research initiatives aimed at prevention, improved treatment, and ultimately the cure for Type 1 Diabetes. We HOPE that our efforts in completing this physical challenge will raise awareness about the struggles that our children face every day! We HOPE that our efforts in completing this physical Challenge will raise awareness about the JDRF Ride to Cure program (http://www.ride.jdrf.org/) and the amazing contribution of those riders toward funding the cure for T1D!! Our HOPE travels on 2 Wheels!!!
Mission	Our mission is to promote awareness of Type 1 Diabetes in an effort to help JDRF, through its Ride to Cure program, raise money for improved therapies and ultimately the cure.
Awards	We're not doing this for any awards...we're doing this to cure our children!
Products	If you like what we're doing, please consider getting on a bicycle and signing up for one of the amazing JDRF Ride to Cure weekends. If you can't join a ride, please consider making a donation by sponsoring a rider! http://www.ride/jdrf.org

SO ---- GO! Go 'LIKE' them on Facebook so you can keep up with what they are up to and let's all cheer them on in!!! https://www.facebook.com/hopeon2wheels

Also, if you are looking for a new medical ID, visit the website of Scott's wife, Rachel, at RescueMeIDs!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#21 - Bedtime and Diabetes #NHBPM

2011-11-21T21:59:00.000-06:00

We have a bedtime routine ---- it's probably similar to bedtime routines all over the world. Lots of hugs, kisses, bedtime stories, blood sugar checks (Oh wait --- that one might be a little different) and then the never ending battle to keep Nate in his bed!

You know the routine ---

I'm thirsty.
I need to potty.
Can I sleep in your bed?
I dropped my bwanket.
Where's my bubby (his lovie)?

Familiar - right?

Well, Nate has added a new one to the routine and it could be life threatening! I know - I know - I'm always so dramatic!!

Nate has started taking off his Pod and Dex at night.

Now obviously the Dexcom is not a life-threatening situation --- or is it? I certainly depend on it at night to alarm and alert me to a low or high bg. Oh and not to mention the amount of money we spend on those sensors ---- I may just kill him if he takes another one off!!

His pod on the other hand could certainly turn into a life threatening situation pretty fast. He's done it 2 or 3 times now. Luckily, I've caught it early. Last week when I did a midnight check his Dexcom said he was high so I did a bg check to confirm and when I went to give his correction the PDM could not connect to the pod. I rolled him over thinking I just wasn't getting close enough but upon further investigation there was no pod on his body. I found it later in his toy basket. Last night on one of his many trips out of his room he told me he needed to go to the bathroom. I had just put the pod on about 30 minutes earlier so I carefully pulled down his pants. Hmmmm . . . his little butt was as smooth as a non-diabetic butt! No pod!

Me: Nate where's you pod?
Nate: In the firetruck.
Me: Say what?
Nate: My pod is in my firetruck.
Me: Ok.

Oh look --- there it is. Right where he said it would be. 3rd pod change for the night and we are off to bed. Finally.

At the 3:00 check was over 250, I gave him insulin to correct and put him in bed with me. At 5:00 he was a bit higher still so I gave him another correction and waited. At 6:00 no change so I checked for ketones. Large. Pulled out a syringe corrected again, pullled the pod and did our 4th pod change in 24 hours. There was blood in the cannula but it wasn't occluded. Some insulin was getting through so no alarm.

Nate's body doesn't produce insulin so we depend on his insulin pump to provide the life saving hormone to him. It's important that he keep it ON!

Ketones are produced when your body starts burning fat for energy instead of glucose.
Dangerously high levels of ketones can lead to diabetic coma or death.

Ketoacidosis (key-toe-ass-i-DOE-sis) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death. When your cells don't get the glucose they need for energy, your body begins to burn fat for energy, which produces ketones. Ketones are acids that build up in the blood and appear in the urine when your body doesn't have enough insulin.

Just another day in the life of a toddler with type 1.

And another reason why this mama chooses to get up every 2 to 3 hours to check Nate's blood sugar.

Keep calm and check on . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#20 - OmniParty #OmniPod #NHBPM

2011-11-20T07:25:00.000-06:00

This afternoon we went to the 1st ever OmniParty which was just amazing. It was hosted at Top Golf in Allen (great choice, Natalie!) and to my delight it was packed full of pod people! There were other vendors and sponsors there including Dexcom, Meals to Live, Tyler Type One and several others. Loved it!

It was amazing! Did I say that already?

Robyn Cox, a dolphin trainer from Sea World San Antonio spoke about her experience with OmniPod and living a full life with Type 1. I got to hang with Jessica and Joanne and both of their lovely families as well as several other D-peeps and fellow pod peeps that I've been really wanting to meet!!

Our OmniPod sales rep and clinical specialist are so wonderful and supportive ---- I'm constantly impressed with their customer service and willingness to support their patients. They put this event together just to support type ones and help those living with diabetes make connections with other families living the same life. A huge thank you to Paul & Natalie and Alex and all those that made this afternoon/evening possible. It was greatness! Thank you - Thank you - Thank you!

Oh and I have to give a shout out to Meals to Live for Super Nate ----

Nate LOVES their Glucose Quick Sticks for treating low blood sugars. They are similar to pixie sticks so they are super easy to keep on hand, they are 5g of carbs each, provide 100% of daily vitamin C and are gluten free. We love them!

Keep calm and OmniParty on . . .

#19 - A Normal Boy with Diabetes #NHBPM

2011-11-19T05:42:00.001-06:00

I so often hear parent of children with diabetes say the words . . . he is a normal boy and can do anything anyone else can do. I'm guilty of uttering those words myself. With all of the chatter about 1 in 20 I am a little worried that people around me may get the wrong idea. So, for the record Nate is a very healthy little boy. Besides diabetes there is nothing else ailing him. He can do just about anything any other little boy can do.

Well, EXCEPT FOR WHEN HE CAN'T.

As much as I like to say that he can there are times when he actually cannot be like any other little boy . . .

Nate CAN eat anything he wants and we don't restrict him on much but unfortunately he cannot eat anything with carbohydrates if his blood sugar is over 190. There's no law against it --- it's just the number we try to stay below so if he's already there then we need to wait until his blood sugar is lower to feed him. Sadly, sometimes this can take hours. No, we don't starve him but we do try and offer carb free options. Not always a big hit with a 3-year old!

Nate can eat anything he wants for breakfast we just need to know what he wants to eat and how much he will eat of it about 30 minutes before he can actually eat it. Yea - he's 3. It's not always easy to distract a 3 year old for 30 minutes after they wake up hungry and wanting to eat or figure out how much of what he will eat but we do it each and every single day.

Nate loves gymnastics and is quite the little gymnast. I'm pretty sure he is Olympics bound. He can run and jump and climb and swing and bounce and stretch and do everything the other little boys are doing except when his blood sugar is 43. When he blood sugar is low he really can't do much of anything. Especially gymnastics.

Nate is a very sweet, kind-hearted little boy. He loves to sing, dance and give him mama big bear hugs. I love those big bear hugs!! He can be a very well behaved little boy except for when he can't. Sometimes his blood sugar is too high and it makes him feel really bad and sometimes his blood sugar drops from high to low rapidly and he cannot control his behavior or emotions. When this happens he loses all control and to someone on the outside it might look like he is having the mother of all tantrums but sadly they are out of his control.

Nate really is a very normal little boy but he does have diabetes so the fact of the matter is there are times when he just can't do things that others can do. These are the times when I wish I could take his diabetes from him. Unfortunately, I can't but what I can do is keep advocating for type 1 and asking you to do the same.

Please sign the Artificial Pancreas petition and help those living with diabetes at http://bit.ly/nQY3QM!'

Keep calm and advocate on!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#18 - Pod Parts #NHBPM

2011-11-18T06:00:00.001-06:00

Nate wears a tubeless insulin pump called the OmniPod . . .

We do lots of fun things with them once he's done with them. The girls love to make OrnaPods and OrnaMagents but Nate . . . he likes to destroy them! He throws them down on the ground as hard as he can to see if he can get them to bust open! He loves throwing them in the pool when they alarm and most of all he loves taking them apart and checking out all of the cool parts on the inside . . .

This is the inside of the little pod that keeps Nate alive. He wears his pod (insulin pump) 24 hours a day - 7 days a week.

We change his pod every two to three days!

We fill it with insulin, activate it, prime it, stick it on his little body parts and then hit start.

Once we hit the start button it automatically inserts the cannula into his skin with that massive needle that you see above. A lot of people think that the pod is just stuck to his skin like a patch or sticker not realizing that every 3 days we insert the massive needle into Nate's skin. Yea - he hates that part.

All 3 kiddos love to look for the little robot man that lives inside of the pod . . .

Lots of fancy parts, a few small batteries and one big ol' needle = Life Support for Nate.

Sleeping Nate sporting the pod on this leg . . .

Keep calm and pod on . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#17 - Diabetes Dude takes on Times Square #NHBPM

2011-11-17T06:00:00.001-06:00

What the FLOCK? He's at it again . . .

Noah, The Diabetes Dude flocked NY again. Check out this link to see all of the amazing pictures!
Nate and I couldn't make it this year --- maybe someday!! But we were there in spirit and oh yea on the Kodak Jumbotron . . .

A huge thank you to Noah and his awesomely supportive family. Super Nate and the rest of the family think you rock!!

Keep calm and FLOCK on!!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#16 - Confessions of a D-Mom

2011-11-16T13:44:00.001-06:00

1. I leave the Dexcom sensor in for as long as possible.

2. I would leave the OmniPod on too if I could. Damn 3 day rule.

3. I only change the lancet once a day. We have a lot of extra lancets.

4. I don't like lows but I hate highs. They totally stress me out and I feel anxious until he is back in range.

5. I rage bolus.

6. I often end up feeding the insulin and I am ok with that.

7. I SWAG carbs a lot.

8. I feed my children 1) artificial sweeteners and 2) red dye. Nate loves him some red kool-aid.

9. I occasionally sleep through the night time alarms and wake up in a cold sweat.

10. When I am really tired I put Nate in bed with me so the night time checks are easier.

11. I count carbs for all 3 kiddos.

12. I advocate hard for T1 awareness but have found that since Nate's dx I do not like to make new friends. I hate that awkward part where I have tell then about T1 or they stare in horror as I check a bg.

13. As an advocate I am ashamed to say that sometimes I just roll my eyes instead of educating. Sometimes it's just not worth it. #idiots.

14. Sometimes I still cry.

15. Sometimes I feel sorry for myself.

16. Sometimes I don't.

17. I wish I had someone that could help me 100% with Nate's diabetes care.

18. I take that back ---- I'm too much of a control freak but it would be nice if someone besides Jim and I took the initiative to learn how to do it all.

19. I don't always check a bg before a bolus.

20. I would live in a commune with other D Families and have a sister wife as long as she took the night time checks! :)

21. Ok, we could rotate them.

22. I think sometimes God has given me more than I can handle.

23. I am a diabetes supply hoarder. Seriously.

24. I do pod changed while he sleeps. Just did one.

25. I always forget to wipe the top of the insulin bottle with alcohol.

26. I am addicted to Pinterest. I'm not sure that has anything to do with diabetes.

27. Facebooks friends make me happy. Especially when they rally around me in support.

28. I should be sleeping right now.

29. I never want sympathy or pity. I don't need it. I promise. I'm just educating.

30. I yell at my kids more than I should. I don't think I did this before D.

31. I fell asleep on the couch tonight while watching TV. What am I 80?

32. I secretly resent my friends that live a much more care free life.

33. I lose my temper more than I should.

34. I get really excited when our diabetes supplies arrive each month.

35. I still get nervous before an endo appointment.

36. I worry that I'm screwing my kids up.

37. Sometimes I just wipe Nate's finger on my shirt before a bg check and call it clean.

38. I slept through the alarm again last night and I also apparently turned off the TV in my sleep and have no recollection of this event. He woke up at a lovely 97.

39. I am terrified that Nate may disown me one day for posting his bum on my blog so much.

40. I sometimes discourage certain food just so I don't have to deal with diabetes. #macncheese

41. I am hopeful for a cure but I'm not counting on it.

42. I have a couple D-Mom crushes.

43. I don't wear a cape, I am not a super hero, or a super mom I often feel quite inadequate and wish I did have a cape that would make it all a little easier.

44. I rarely check for ketones.

45. I hate it when people ask me how Nate's numbers/levels/sugars are ---- it's annoying and none of your damn business. Oh and like you even know what you are talking about anyway. Blah!

46. I am really quite a happy person although you might not be able to tell from this blog or my diabetes rants.

47. I laugh a lot.

48. I freaking hate it when Dexcom alarms for a low during nap time.

49. I've been sitting here trying to think of more and I think that's all I've got for today.

More than a D-Mom:

A-wesome Mom
B-usy Mom
C-rohn's & UC Mom
D-ynomite Mom
E-mma's Mom
F-unny Mom
G-racious Mom
H-ot Mama
I-rritable Mom
J-ustin Timberlake lovin' Mom
K-kainotophobia-Mom
L-azy Mom (occasionally)
M-ore than a Mom.
N-ate's Mom
O-bsessive Mom
P-ancreatic Mom
Q-uite a good Mom
R-owdy when drunk Mom (???)
S-ophie's Mom
T-ired Mom
U-nbelievably tired Mom
V-ery Tired Mom --- ok I think you get the point.
W-axed Mom
X-rated Mom ---- ummmm that's a stretch.
Y-outhful Mom
Z-ealous Mom

Ok - that's all I've got for you today, folks!

Until tomorrow . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#15 - Happy Faces Through It All #NHBPM

2011-11-15T21:57:00.000-06:00

I found these pictures of Sophie and Nate on my phone today - sweet, happy, little faces!

Rockin' the WDD t-shirts yesterday -

That is all.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#14 - World Diabetes Day Post #NHPBM

2011-11-14T23:33:00.000-06:00

I'm going to start with posting our WDD Postcard Exchange Postcard ---

Thank you to all that sent me pictures of your little ones so that I could use them and thank you to Lorraine for the wonderful WDD artwork with the blue circles that is making the rounds on Facebook!

I had originally planned to do something bold for WDD. Well, then Sophie got sick and I had a change of heart and then I couldn't decide what to do and well here we are on the big day and I am feeling a little overwhelmed.

So, my bold post for WDD is going to just be me being bold by being completely honest.

If I could write the FDA a letter and be assured that someone would actually read it I think I would write from the heart. The FDA knows the facts and the figures, they've seen the research and the data. What they need to know is that this mom is barely hanging on by a thread.

I would tell them . . .

I have 2 chronically ill children and I need your help. You see, my son, Nate has Type 1 Diabetes and my daughter, Sophie has Ulcerative Colitis. Between the 2 of them I am one exhausted mama. I have another little girl too, my oldest daughter, Emma is disease free but wears the weight of the world on her small little shoulders. So, I really have 3 children that need your help.

Today I just want to really talk about Nate and his type 1 diabetes. You see, I've learned on our 2-year journey with type 1 when you know better - you do better. I am so very appreciative for the wonderful technology that we have to keep Nate alive, safe and strong but I know we can do better.

Nate wears a tubeless insulin pump that I know can be smaller. It's there --- I've seen it. Why oh why is it taking you so long to approve it? Obviously safety is a top priority but come on!! Nate also wears a continuous glucose monitor which for the most part keeps him safe. It's certainly not perfect but I cannot imagine life without it.

This brings me to the artificial pancreas project. I won't lie I've been pretty skeptical about it because of the inability of our current CGM to be more accurate. The thought of our current pump and CGM talking to each other and controlling Nate's diabetes is quite frightening. I would say up until the point that I watched this news clip from Israel (see below) I was a not a big supporter of the AP project.

But then I watched this video. Thank you to Jessica Apple and A Sweet Life for sharing the video and translating. It's really powerful. Please take a moment to take a look.

We need this . . . now. Is it perfect? - No but it takes trials like these to get where we need to be. These children and adults living with type 1 diabetes need you, the FDA to say YES to the AP project. I need you to say yes to the AP Project.

You see it's been 2 years since I slept through the night. I'm tired. I'm grumpy. I'm frumpy. I'm so sick of counting carbs I could scream. This is me being honest. I am being selfish. I need a cure for T1 but in the mean time I'll take anything I can get. Diabetes is wearing me down. I'm feeling like 1/2 the mom I used to be with 3 times more responsibility. I need this for my son, for our friends living with T1 and I need it for me. Do you hear me? I'm begging you!!

The message that JDRF sent you last week with the statistic 1 in 20 people with type 1 will DIE from low blood sugar keeps me from sleeping through the night. Although I've known the risks and complications from diabetes ---- that number is screaming at me and I am screaming at you . . .

1 in 20.

He's not a number! He's my son! I can't lose him! Please do not let him become a statistic! The very thought makes me physically ill! He is my son --- please look at his face and help save his life!

Read these words and take them to heart:

In the next few weeks, the FDA has a chance to show it is leading the world in medical innovation, not standing in its way. It will lay out the pathway to bring to market the first artificial pancreas, a life saving technology now under development, and the most revolutionary treatment in diabetes since the discovery of insulin. Three million kids, teens, and adults with type 1 diabetes are counting on the FDA to get it right. Our lives and health are at stake.

I'm just a mom so I can't talk to you in medical speak or quote statistics but I can understand the statement above and I am asking you to do the right thing. For Nate. For me. For the Three millions others living with type 1. Please!

Thank you,

(Emma, Sophie and Nate's very tired mommy)

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#13 Big Blue Test #NHBPM

2011-11-13T19:15:00.001-06:00

Friday Nate did the Big Blue Test ---- Have you?

BG @ 9:44 am --- 219

Recess --- Nate rode a tricycle and played on the playground

BG @ 10:10 am --- 169

What Is Big Blue Test?

The Big Blue Test is a diabetes awareness program started by the nonprofit Diabetes Hands Foundation, that takes place every November leading up to World Diabetes Day on Nov. 14. The campaign reinforces the importance of exercise in managing diabetes. People with diabetes are encouraged to do the Big Blue Test any day between November 1 and November 14 at midnight Pacific Time, by testing their blood sugar, getting active, testing again, and sharing the results online at bigbluetest.org.

In the last two years, just 14 minutes of exercise decreased participants’ blood sugar level between 15 and 20 percent.

In 2010, more than 2,000 people did the Big Blue Test. Over 120,000 people watched the Big Blue Test video. Roche Diabetes Care, makers of ACCU-CHEK® diabetes products and services, funded the production of the video and helped it go viral by donating 75 cents for each of the first 100,000 views, resulting in total donation of $75,000. The donation provided insulin and supplies to more than 2,000 people with diabetes in developing countries.

In 2011, in connection with the number of people that do the Big Blue Test, another donation from Roche Diabetes Care will benefit more than 8,000 people with diabetes in need. Five nonprofit organizations focused on helping underserved areas with a high incidence of diabetes in the United States will each receive $10,000, while $25,000 will go to support the work in Latin America by the International Diabetes Federation’s Life for a Child Programme.

Important:
If you cannot perform physical activity for medical or disability reasons, or because your pre-exercise BG level exceeds 250 mg/dL, participate as you can. Share your blood sugar readings and invite others to do the test and watch the video. Remember: for each person that shares their Big Blue Test experience on this site between Nov. 1 and Nov. 14, a person with diabetes in need will get life-saving supplies.

Oh yea and you don't have to have diabetes to do it. Support someone in need and do it now!

Follow this link and do it ----> BIG BLUE TEST

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#12 - C-Difficile Colitis #NHBPM

2011-11-12T23:43:00.003-06:00

It's 11:10 PM CST ---- not much time to bust this post out. I normally write my posts the night before and post them the next morning. Things got hairy yesterday and I haven't had any time to sit down and do anything much less write a blog post.

Short and Sweet just like Sophie:

Most of you know Sophie has been sick again for a few weeks I blogged about it here. We've been in to the hospital a couple of times to do blood work and stool studies. Sophie is on a 1st name basis with all the lab techs at CMC-Legacy and even tells them that she prefers room #3 because it has the best stickers (Tangled). We are there a lot.

As Sophie's GI and I had been mulling over meds and treatment plans we were both really struggling with our next step. Her GI loves her, is so kind and seems to genuinely care about Sophie and her well-being. He called Friday and told me her lab results were back and Sophie has C-Diff.

What is Clostridium Difficile - in easy terms to understand?

C - difficile is a bacteria in your intestines. It is found normally in healthy and ill people alike. There are millions, perhaps billions of different types of bacteria in your body. Bacteria are an important part of your health. They help break down and digest food. They also ward off many "bad" or foreign bacteria that you may come in contact with. In fact, the "good" or normal bacteria on your hands can kill certain bad bacteria which you may pick up handling food or touching everyday items and fixtures.

How do I get Clostridium Difficile Colitis or Antibiotic-Associated Colitis?

Your body has lots of "good" and necessary bacteria. It also has some "bad" or dangerous bacteria. Clostridium difficile is a "bad" bacteria. Fortunately, when you are healthy and not taking antibiotics, the millions of good bacteria in your system keep the c - diff under control and in smaller numbers. However, when you take an antibiotic, the levels of good bacteria are reduced down to a smaller number. If your c-diff is strong and doesn't get killed by the antibiotic along with the good bacteria, then it is possible that the c-diff will overpopulate inside your intestine or colon. When this happens, you may get the illness called clostridium difficile colitis.

When you have an imbalance of bacteria and c-diff takes over, it creates two main types of toxins that affect your body and give you the symptoms of the actual disease. The toxins attack your intestinal wall and left untreated may cause ulcerations. Your symptoms may include diarrhea and cramping at first. The later stages are commonly flu-like symptoms of weakness, dehydration, fever, nausea, vomiting and in advanced stages - blood in your stool / feces. If a patient is left untreated, they can die from it. It is rare for it to be left untreated.

Patients with ulcerative colitis and Crohn's disease have been known to develop C. difficile colitis without exposure to antibiotics.

I had to pull Sophie out of school on Friday and she will not be allowed to return until we get her all better. Which could take days, weeks or even months. We started her on Flagyl and Florastor on Friday and will see how she is responding on Monday.

Sophie is pretty sick and she is very sad that she can't go to school or play with her friends. We are trying to keep her in good spirits and for the most part we are pretty successful. She's one tough little cookie.

Ok - it wasn't that short but now you know what is going on in my world. Oh yea - and diabetes is kicking my arse. It may be time for me to actually log some numbers. UGH!!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

11:46 PM --- why did this take so long? I'm going to bed now.

XOXOXOX

# 11 - People with diabetes ROCK - Dr. Nat Strand #NHBPM

2011-11-11T06:04:00.003-06:00

I would NEVER, EVER ---- EVER, EVER, EVER, EVER go on the show Amazing Race. Isn't it weird that Joanne and I are such great friends and we are complete opposites. She totally wants to go on that show and I can't think of anything I would want to do less --- I'm a total wuss. Opposites.

Anywho -- one thing we do have in common is thinking that Dr. Nat Strand (and every time I type her name I type Nate and have to go back and delete the e) winner of the Amazing Race is so completely amazing. After listening to her speak last week at a JDRF luncheon I have so much more respect for her than I already did.

Oh wait . . . just in case you didn't already know (although surely you do) Nat has type 1 diabetes. Oh yes she does and she won the Amazing Race. Amazing! Awesome! Amazing!

I loved chatting with her after the luncheon. She was so open, honest and she genuinely seemed interested in meeting Nate and Elise. Neither of them was quite as excited as Jo and I though.

Every time I meet an adult T1 that refuses to let T1 slow them down my little heart just wants to explode. The mommy in me comes out and I just want to hug their necks. Thank you, Nat for never letting your diabetes slow you down. Thank you for taking the time to tell us your story. Thank you for meeting with our children. Most of all thank you for being so amazing.

For more on our meeting with Dr. Nat check out Joanne's post on Death of a Pancreas. If you scroll down to the comments section you'll see a comment from Nat.

OMG ---- I'm squealing like a 2nd grade girl right now!!

Here are the pics we took with my iPhone . . .

I've included the pictures of Joanne crying while talking with Nat.

It was so cute!!

That is one thing Jo and I are same - same we are criers when it comes to D. We can glance at each other across the room during diabetes speeches and know that we are both crying. Unless, Joanne decides to do the Robot because then we are both laughing hysterically! Thank you too, Jo for letting me cry about diabetes and helping me laugh my tears away.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#10 - WDD is coming soon! Help me! #NHBPM

2011-11-10T06:04:00.000-06:00

World Diabetes Day is coming! Hello ---- I've made no plans. I have no grand ideas. I am so lame.

I wanted to do something BOLD. I was thinking about a post based on the JDRF ad about 1 in 20 people with type 1 will - - - - you know the rest. I was going to post 20 pictures and try and make my point to the FDA because I know they must read my blog. The more I thought about it and the more my sweet friend, Jessica Apple and I emailed it over (it's hard for us to just chat since there is a 9 hour difference in time) --- it's just too morbid. I don't know what I will do now with the sweet pictures people sent but I will figure something out --- it just won't be that.

I still believe we need to be bold!

My idea is to have as many bloggers as possible write a letter to the FDA on WDD. Penny came up with FDA Letter Day!

I was thinking on WDD we try and get as many bloggers as possible to write an open letter to the FDA about the AP, VEO, or just the way they drag their feet (so it seems to those of us anxiously awaiting much better technology). You are welcome to mention the 1 in 20 statistic the JDRF used or if you didn't like that than feel free to avoid that all together. If we all post about it on our blogs and on Facebook maybe we could get a lot of participants to post on WDD - FDA Letter day.

Why are these things important to you? How would they impact us or our children? Or ourselves? Use pictures of all of our kids or type 1 friends or just use a photo of your own children to show the FDA who we are talking about. I would love it if T1 adults participated as well. I don't really have any adult T1 followers so please share the idea if you think it's a good one.

Thoughts, please? Any other ideas you can think of? Please share --- I'm just throwing it out there. Come on, people we have to do something!!

#9 - Remission Intermission #NHBPM

2011-11-09T06:00:00.001-06:00

Tonight I am taking a small detour from my diabetes posts to update on Sophie and Nate. It's National HEALTH Blog Post Month so I think it will still qualify.

I'll start with the poop on Nate ---

All of his blood work came back clear. His poop studies also came back clear --- no C-Diff, Parasites or any other strange beings in his body causing the constant diarrhea. And as soon as I took him in to see Sophie's GI his symptoms disappeared. We will follow-up in January to see where we are at that time.

We had him tested for Celiac back in August at his regularly scheduled endo appointment and that was clear (negative) as well. At that time I also requested that they do a full blood work up on Nate because one year earlier his labs came back showing his Triglycerides were very high and his HDL was very low (you can read my blog post about it HERE). Well, this year everything came back perfectly normal. Triglycerides perfectly normal --- HDL perfectly normal.

Here are the notes from the doc: Everything looks good so far. The thyroid is normal. The alkaline phosphatase is barely elevated (326 where normal is up to 320) and is FINE. The cholesterol is excellent and not even close to high now. The celiac screen will take another couple of days. -Dr. X

In July 2010 his alkaline phosphatase was over 3000 --- he was dx with Benign Transient Hyperphosphatasemia but all seems normal now.

Celiac studies are fine also and there is no sign of thyroid inflammation. All the best! -Dr. X

Here's what the celiac screening looks like:

Tissue Transglutaminase IgA	3	0 - 19	Units
If Tissue Transglutaminase Ab, IgA is negative, the Endomysial Ab, IgA Titer by IFA is not performed. INTERPRETIVE DATA: Tissue Transglutaminase Antibody (tTG), IgA 19 Units or less ........... Negative 20-30 Units ................ Weak Positive 31 Units or greater ........ Moderate to Strong Positive The presence of tissue transglutaminase (tTG) IgA antibody may suggest the possibility of certain gluten-sensitive enteropathies such as celiac disease and dermatitis herpetiformis.

I didn't really make any changes so to speak so who knows. Maybe the labs last year were wrong or maybe it fixed itself. I have no idea but I am super happy with all of the results.

Back to the poop . . .

This week Sophie's doctor and I have been talking on the phone quite a bit and we laughed because Nate got better just after we had our appointment with Dr. R. We joked that his healing hands had cured Nate of his symptoms. Now, Dr. R if you could only cure my Super Sweet Sophie Doodle Doodle Doo!

Sophie was diagnosed with Ulcerative Colitis in June of 2010 and since that time she has never been in remission. This is not to say that her symptoms don't get better from time to time but there has never been a true remission for Sophie. The longest she has gone without sypmtoms and without steroids is 6 weeks.

Since she was released from the hospital in July (this year) she has been symptom free for about 12 weeks BUT she has been on Prednisolone along with her Aziathioprine the entire time. So we really didn't know if the Aziathiprine was working or if the steroids were still doing all of the work. We started tapering her in September and as you can see by my calendar below every Monday we would drop the dose down my 1 ML until we got to 2ML. I think we started out at 11 or 12 ML just out of the hospital so it has taken some time to wean her off of the roids. But if you look carefully ---- on the 26th of last month we had to bump her back up to 5ML and sadly today we bumped her up to 10ML.

Her symptoms are back with a vengeance. It's not fun. It's not pretty. It's not easy. It is forcing me to make some tough decisions about our next course of action. We are looking at the drug Remicade which comes along with this nice little black box warning:

WARNING

SERIOUS INFECTIONS and MALIGNANCY

SERIOUS INFECTIONS

Patients treated with REMICADE® are at increased risk for developing serious infections that may lead to hospitalization or death [see WARNINGS ANDPRECAUTIONS and ADVERSE REACTIONS] Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids. REMICADE should be discontinued if a patient develops a serious infection or sepsis. Reported infections include:

Active tuberculosis, including reactivation of latent tuberculosis. Patients with tuberculosis have frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent tuberculosis before REMICADE use and during therapy.^1,2 Treatment for latent infection should be initiated prior to REMICADE use.
Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease. Antigen and antibody testing for histoplasmosis may be negative in some patients with active infection. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness.
Bacterial, viral and other infections due to opportunistic pathogens, including Legionella and Listeria.

The risks and benefits of treatment with REMICADE should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection.

Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with REMICADE, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy.

MALIGNANCY

Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including REMICADE [see WARNINGS AND PRECAUTIONS].

Postmarketing cases of hepatosplenic T-cell lymphoma (HSTCL), a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including REMICADE. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE at or prior to diagnosis.

Keeping calm and researching on . . .

#8 - Weighing it all out . . . #NHBPM

2011-11-08T05:00:00.000-06:00

Yesterday Nate wanted some chips for a snack (yes, he can eat that) so I grabbed a handful of chips, threw them in a bowl and handed them over to him. I told him to put them on the table so we could 'check his sugar' and then 'bolus him' for the chips.

I turned around to grab his PDM and when I turned back around I found Nate . . .

weighing his chips on the Salter scale to find out the carb count. I was totally going to SWAG the carb count because I was feeling a little lazy but Oh No! No swagging for this mama ---- Nate made sure we did it by the book.

Yep --- with type 1 diabetes we have to weigh and measure all of the food that Nate eats to accurately determine how many carbohydrates are in the food. Once the carb count is determined we then use a complicated (for my math challenged brain) math equation to dose the correct amount of insulin to keep his blood sugar in range.

The life of a pancreas is a lot of hard work and it's certainly not glamorous but it's awfully rewarding.

The reward is keeping my son alive and healthy --- is there any greater reward than that?

Keep calm and weigh on . . .

#7 - Blaming Diabetes #NHBPM

2011-11-07T07:25:00.003-06:00

I know I am not the only one that instantly thinks diabetes when something --- anything is wrong with a non-D kiddo.

I'm embarrassed to tell you that I sometimes sneak in and check the girls' bg when they are sleeping. Please tell me I'm not the only one?!?!

Lately my daughter, Emma has been acting different. I can't quite put my finger on it. A little lethargic, she moves slowly, she's lost the skip in her step ---- she's got no bounce. Her face always looks just a little sad and her eyes have dark circles around them. For about a week she complained of a tummy ache without any vomiting or diarrhea but she does seem a little green. Halloween night she was just ho-hum and kind of tagged along towards the back and was the 1st one ready to call it a night. Today she got home from her Y-Princess camp out with her daddy and again was just ho-hum. Jim said she was pretty lethargic and lackadaisical the entire trip which just broke my heart. I know how much they were both looking forward to this trip. Her school work is suffering and I feel like I am always 'on' her.

Today it hit me!

Holy CRAP. She has diabetes. This is it. I just know it. Tummy ache, change in demeanor, tired, lethargic.
She has Ducking Fiabetes!!!

Longest 5 seconds ever . . .

Ok, she doesn't have diabetes.

Now I'm still left wondering what is wrong with my sweet little thing. :(

Keep calm and keep plugging along . . .

#6 - The Continuous Glucose Madness #NHBPM

2011-11-06T07:25:00.000-06:00

Clearly . . . I favor taking pictures of Nate's CGM when he is having good BG days.
A few bad tossed in the mix for your viewing pleasure.

This one was taken this morning at wake up time . . . he was actually holding it up pretending it was his mouth because I have an app for that on my phone. You know the one that has the funny mouths with mustaches and beards . . . yea that one! He was doing that with his CGM. It was funny!!

And here he is with the real app (sorry for the poor quality pic --- they can't all be winners) . . .

Continuous Glucose & Mustache Madness!!

#5 - Invisible Diabetes #NHBPM

2011-11-05T08:00:00.005-05:00

I was going to go with the prompt today but it's actually 11:45 PM on Friday night and I'm tired. I got through 1/2 of my post and changed my mind when I saw this picture on my phone . . .

Diabetes is often called an invisible disease which I understand because when Nate looks like this . . .

all you see is a precious little 3-year old boy. Most people would never know that he has diabetes or anything else for that matter. This is the little boy that I want you to see but please don't forget the little boy that I see at home has 2 life saving medical devices attached to him at all times. His insulin pump infuses a life-saving and potentially fatal man-made insulin through his little body. If his pump malfunctions it quickly becomes a life or death situation.

Diabetes Awareness Month means a lot to me because Diabetes is NOT invisible to me.

#4 - After I publish #NHBPM

2011-11-04T06:00:00.009-05:00

Today I am going to use the #NHBPM prompt just because I think it's funny.

What happens after you press “publish.” Write about your post-blog-writing process. Do you immediately tweet a link? Email it to everyone? Re-read it for spelling errors?

Why is that funny? I don't know I guess because when I 1st started this blog when I hit publish I would always go back and look for errors and I swear I would ALWAYS find them. Then I couldn't get them corrected fast enough. It was like a race to try and get my errors fixed before anyone would see them. Inevitably, my mom would always see the post before I could fix it and she would email me to let me know!! Thanks, Mom!

Oh my my my how things have changed. Nowadays I don't even go back and read it. Mistakes? Ehhhhh . . . whatever. When I do actually get a chance to sit down and blog it's usually very late and I try to get some sleep afterwards!

A few things that have not changed at all . . .

I am still honest and transparent on this blog so if you want glitter and unicorns go elsewhere. I'm a super happy person but I don't usually mince words or sugar coat the BS.

I still blog about Nate's diabetes and now I've added some posts about my Sweet Sophie and her struggles with Ulcerative Colitis.

I LOVE comments!!!!!! I miss the days of 15 - 20 comments per post.
Hey people ---- comments = love says Meri!!
I know - I know . . . everyone is busy these days. I am too. I get it. Just sayin'!!

I'm busy too. I wish I had more time to comment on all of the wonderful posts being written.

That is all.

Oh yea and it's Friday ---- are you wearing blue for diabetes awareness?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#3 - 1 in 20 #NHBPM

2011-11-03T06:00:00.016-05:00

JDRF went there! They posted a full size ad in the Washington Post and the NY Times with the following:

Piper has type 1 diabetes.

One in twenty people like Piper

will die from low blood sugar.

In fact, kids and adults are dying every day from low

blood sugar or complications caused by type 1 diabetes.

In the next few weeks, the FDA has a chance to show

it is leading the world in medical innovation, not

standing in its way. It will lay out the pathway to bring to

market the first artificial pancreas, a life saving
technology now under development, and the most
revolutionary treatment in diabetes since the discovery
of insulin. Three million kids, teens, and adults with type 1

diabetes are counting on the FDA to get it right.

Our lives and health are at stake.

www.jdrf.org

I don't know about the rest of the world but the diabetes online community certainly took notice!

Wow!

What are your feelings on that ad? I've seen some really mixed responses on Facebook, CWD and Twitter.

Not that you asked but here is my opinion ----

It is what it is. This is my life. The people that are closest to me in real life still ask me why I'm so tired all of the time, why I still check Nate throughout the night, and why I check his BS so frequently. Well, friends ---- 1 in 20. That is why.

The ad honestly didn't scare me. I'm not going to bed tonight any more worried than I was last night. I've known the risks of type 1 for a while and although I certainly don't dwell on them they are always there.

I say kudos to JDRF for being bold today! I do not think they were trying to scare the T1 community --- I honestly believe they were trying to wake up the rest of the world. The world that thinks that diabetes is no big deal. The world that doesn't know any of the complications from T1 diabetes. Most importantly I believe they were sending a loud and clear message to the FDA because they have the ability to hold back progress or move it forward and bring life saving technology to the United States.

So I say be bold JDRF ---- let the FDA know they can save the lives of those with Type 1 Diabetes.

Be Bold.

1 in 20.

From Jeffrey Brewer

Estimates of the number of people with T1D who die from hypoglycemia (low blood sugar) range from 2% - 10%. Therefore, 1 in 20, or 5% is a conservative estimate roughly in the middle of this range.

Specifically, several publications by Philip E. Cryer, MD on hypoglycemia[1],[2],[3] cite estimates of death due to hypoglycemia in patients with type 1 diabetes. Older estimates were that 2% to 4%[4],[5],[6] of patients with type 1 diabetes die from hypoglycemia and more recent estimates are that 6%[7], 7%[8], or 10%[9] of those with type 1 diabetes die from hypoglycemia.

[1] Cryer PE. The barrier of hypoglycemia in diabetes. Diabetes 2008;57(12):3169?76.
[2] Cryer, PE. Hypoglycemia in Type 1 Diabetes Mellitus. Endocrinol Metab Clin North Am. 2010. 39(3): 641-654.
[3] Cryer PE. Death during Intensive Glycemic Therapy of Diabetes: Mechanisms and Implications. Am J Med 2011 124(11):993-996.
[4] Deckert T, Poulsen JE, Larsen M. Prognosis of diabetics with diabetes onset before the age of thirty-one. I. Survival, causes of death, and complications. Diabetologia. 1978;14:363-370.
[5] Tunbridge WMG. Factors contributing to deaths of diabetics under fifty years of age. Lancet. 1981;2:569-572.
[6] Laing SP, Swerdlow AJ, Slater SD, et al. The British Diabetic Association Cohort Study, I: all-cause mortality in patients with insulintreated diabetes mellitus. Diabet Med. 1999;16:459-465.
[7] Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications Study Research Group. Long-term effect of diabetes and its treatment on cognitive function. N Engl J Med 2007;356(18):1842?52.
[8] Feltbower RG, Bodansky HJ, Patterson CC, et al. Acute complications and drug misuse are important causes of death for children and young adults with type 1 diabetes: results from the Yorkshire Register of diabetes in children and young adults. Diabetes Care 2008;31(5):922?6.
[9] Skrivarhaug T, Bangstad HJ, Stene LC, et al. Long-term mortality in a nationwide cohort of childhood-onset type 1 diabetic patients in Norway. Diabetologia 2006;49(2):298?305.

Keep calm and advocate on . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#2 - Catching Diabetes #NHBPM

2011-11-02T05:00:00.007-05:00

Last week or the week before -- I don't know they all run together these days . . . I took the littles to the pumpkin patch. It was fun! We had a great time. We ran into some friends that Emma went to school with last year and the girls enjoyed playing with them. All was well until Nate came over to join in the action and play with all of the girls ...... and WHAM! One of the little girls (8 years-old) pushed Nate away and said "Ewwwwww - I don't want to catch your diabetes".

Say what?

I know what your thinking -- your thinking that I calmly corrected the little girl and educated her on how Type 1 is an autoimmune disease, you can't catch it and Nate is just a normal little boy that happens to have diabetes. Well my friend, you would be wrong! I stood there red-faced, teary-eyed and stunned. No words came out.

Lucky for me my 7-year old, Emma corrected the little girl and told her she could NOT catch diabetes!

Thank you, Emma for stepping up when Mommy was rendered speechless.

I'm thinking I need to work on my 'you can't catch diabetes' speech.

How do you explain to children that you can't catch diabetes? Do you have a rehearsed speech to explain type 1 to inquisitive children? Would you mind sharing some tips with me?

Keep calm and educate on . . .

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#1 - Saving the Pancreas one post at a time #NHBPM

2011-11-01T03:00:00.010-05:00

Yea - I know . . . totally not as cute as

Work with me people ---- the pancreas is no tata but it's a damn fine organ . . . when it works properly!!

This month I am going to post everyday for Diabetes Awareness month by participating in National Health Blog Posting Month sponsored by WEGO Health.

Wish we me luck, cheer me on, and support diabetes awareness!
There is so much going on this month ---- tons of things for you to do

(Totally not going to lie --- I copied and pasted most of this from Meri and Hallie --- thanks, ladies!)

WORLD DIABETES DAY: Find out more about WDD and the International Diabetes Federation by clicking HERE. You can see how people around the world are ACTING on diabetes.

BLUE FRIDAYS: This one is easy. Wear blue on Friday in support of D awareness. Blue Fridays is an initiative to bring attention to World Diabetes Day and to advocate and bring awareness for diabetes and the people living with it. Diabetes is more than a national issue; it's a world epidemic. This year Cherise from DSMA want to rally the diabetes community to celebrate World Diabetes Day and Diabetes Awareness Month by asking people to wear blue every Friday during the Month of November and on World Diabetes Day (November 14). Please help spread the word. You can "like" the facebook page HERE.

WDD POSTCARD EXCHANGE: This awesome idea was thought up by LeAnn Thill, author and artist of The Butter Compartment! ClickHERE to get involved.

D BLOG DAY: You don't have to be a blogger to get in on this fun! This year Gina of The Diabetes Resource is asking you to make a scrapbook page! For more information, click HERE.

THE BIG BLUE TEST: The BIG BLUE TEST is a diabetes awareness program started by the non-profit Diabetes Hand Foundation, that takes place every November leading up to World Diabetes Day on november 14th. The campaign reinforces the importance of excercise managing diabetes. People with diabetes are encouraged to do the Big Blue Test any day between November 1st and November 14th by testing their blood sugar, getting active, testing again, and sharing the results online at bigbluetest.org. We all test blood sugar.

Hallie over at The Princess and the Pump is going to be hosting a give away each week during November. That's FOUR give aways! Wow --- with products from Stick Me Designs, Lauren's Hope, Tally Gear, and more!

And don't forget about about Team Type 1 running across the country!! Check out the information here. You can support them on Facebook and Twitter. Also, check out Marcus Grimm's blog post documenting his experience this far at Sweet Victory.

Last but certainly not least my mom is selling her cookbook for a cause ---- Four Sisters a Legacy of Love from our kitchen for $24.00 each and all profits are split between JDRF and CCFA.

Happy Diabetes Awareness Month!!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Trick or Treat

2011-10-31T09:00:00.001-05:00

HaHa - - - it's a trick! I'm really sending you over to:

Halloween Tips From Parents of Children With Diabetes

My lovely friend, Jessica Apple from

asked 7 parents of children with diabetes how they handle this spooky holiday . . . follow the link above to see what they had to say!!

HAPPY HALLOWEEN!!

Type 1 Athletes Begin Run Across America

2011-10-30T21:37:00.000-05:00

I could not admire these athletes any more than I do.
I am following them every step of the way and you can too!

Here is the press release:

Team Type 1-SANOFI Running Team Begins 3,000 Mile Cross Country Run

on Thursday, October 27, in Oceanside, CA

Athletes will run through cities in California, Arizona, New Mexico, Oklahoma, Indiana, Missouri, Ohio, Pennsylvania and New Jersey before finishing in New York City on World Diabetes Day

Oceanside, CA - October 25, 2011 – This week, ten members of the Team Type 1-SANOFI running team will embark on the journey of a lifetime. The athletes, who all have Type 1 diabetes, will run 3,000 miles across America in an effort to spread the message of better health through proper diabetes management, increase awareness of the growing diabetes crisis in the U.S., and promote prevention through exercise. Team Type 1 is a global sports organization dedicated to radically changing the lives of people around the world with diabetes and home to a world-class athletic program.

Powered by global healthcare leader SANOFI, a supporting partner of the Team Type 1 racing teams and its athletes, the running team plans a non-stop, 24-hour per day, relay style run to finish around World Diabetes Day on November 14, 2011. It is the first-ever such effort by a team of runners with diabetes.

The trek will begin on Thursday, October 27, 2011 in Oceanside, CA and will continue through cities including Santa Fe, NM; Emporia, KS; Columbia, MO; St. Louis, MO; Indianapolis, IN; Dayton, OH; Springfield, OH; Columbus, OH; Washington, PA; Harrisburg, PA; Allentown, PA; Easton, NJ and Newark, NJ. The full route with up-to-date information regarding the team’s location can be accessed at: www.teamtype1.org/run beginning on Friday, October 28. With over 3,000 miles of stories, team members will be documenting their journey, taking pictures, shooting video and posting blogs each day.

“We are so proud of our Team Type 1 – SANOFI runners who are taking on this monumental feat and showing the world what is possible with diabetes,” said Phil Southerland, Founder and CEO of Team Type 1. “I think these athletes can be an inspiration for others to take control of their health, whether they are struggling with Type 1 diabetes or working to become healthy and prevent Type 2 diabetes.”

Led by Tom Kingery, a four-time Ironman competitor and Director of the Team Type 1-SANOFI Running & Triathlon teams, the 10-man roster includes athletes whose accomplishments span top finishes in the Ironman World Championships, the New York City Marathon, the Boston Marathon, multiple ultra-marathon events and an NCAA Final Four Soccer Champion.

The full Team Type 1 roster includes the following:

Tom Kingery, Delaware OH

Casey Boren, Boise, ID

Brian Foster, East Amherst, NY

Tom Grossman, Midland, MI

Ryan Jones, Morrisville, PA

Jon Obst, Kennesaw, GA

Matt Patrick, Larchmont, NY

Kevin Powell, Nutley, NJ

Ben Semeyn, Rockford, MI

Eric Tozer, Los Angeles, CA

The running team will be backed by several partners including SANOFI, VSP Vision Care, Newton Running Footwear, ShareCare, RoadID, PowerBar, McMillan Training and RecoveryPump. All will play a major role in ensuring that the Team Type 1 runners receive proper care during the 15-day haul.

To learn more about Team Type 1 and for daily updates from the road during the cross-country run, visit www.teamtype1.org and connect on Facebook or Twitter.

About Team Type 1

Based in Atlanta, GA, Team Type 1 began as a grassroots initiative to motivate people to take control of their diabetes using cycling as a platform. Partnering with global healthcare leader, SANOFI, it grew to become a world-class athletic program for all athletes with diabetes, including a professional men's cycling team, poised to compete in the Tour de France. Today, it is a global sports organization changing the lives of people with diabetes around the world through racing, groundbreaking research, international outreach and philanthropic initiatives in developing countries.

AMAZING!!!!!!!

Keep calm and RUN ON!!

iPhone Upload - 10/30

2011-10-30T21:17:00.000-05:00

Cookbooks for a Cause!

2011-10-27T22:43:00.000-05:00

Hi everyone . . .

My mom and her 3 lovely sisters have spent a year putting together a wonderful cookbook and all profits will go to Juvenile Diabetes Research Foundation (JDRF) and Crohn's and Colitis Foundation of America (CCFA).

They all learned to cook from my grandmother and great-grandmother and have included recipes passed down for generations. These woman are A M A Z I N G cooks. AMAZING.

If you are Facebook friends with my mom then you know by her posts how much she cooks and bakes and how much she enjoys both. If it tells you anything at all I think all of my friends from middle school and high school are each purchasing at least one copy each. It has been so fun seeing them each write to my mom and ask them to be sure and include their favorite recipe in the cookbook. My friend Amanda will tell you . . . BEST SNICKERDOODLES EVER!

The cookbooks are $24 each. If interested please email me at houstonwehaveaproblemblog@gmail and I will hook you up.

GaGa and her Littles!

Please feel free to pass along and share with friends!

Thank you,

Omni-Party

2011-10-26T11:33:00.000-05:00

Join us for an Omni-Party

Saturday November 19th

3:00-5:00 pm

Top Golf in Allen

1500 Andrews Pkwy

Allen, TX 75002

(75 & Stacy Rd)

Come meet, have pictures taken with and

listen to the inspirational story of

(Type one diabetic & Omni Pod user)

Robyn Cox

Dolphin trainer at Sea World

San Antonio

Our purpose is to create a community of “Pod” People,

In order to allow patients and families already on the

Omni Pod or those interested in learning more to:

· Make connections

· Be supported & Support others

· Get information

· Be Inspired & Encouraged

· Spread the word about the benefits of Omni Pod

· Celebrate the Freedom Omni Pod offers

Almost everyone who has or deals with diabetes knows someone else with diabetes who could benefit from an Omni-Party

Make a difference and invite them to come with you!

Please RSVP to: Paul Legg at plegg@insulet.com

We had the pleasure of meeting Robyn last November. I'm not sure who was more excited me or the kiddos. We loved meeting Robyn! She's a dolphin trainer, a type oner and she's also a mommy ---- my kids loved her!!

Super Nate and the Houston family will be there and we would love to see YOU there.

Don't forget to RSVP to Paul at plegg@insulet.com

Death of Dexcom

2011-10-24T04:00:00.003-05:00

I've given up hope.

Dexcom is dead.

It's sad really.

Last Monday, Nate's Dexcom literally SAVED HIS LIFE. Remember Low, Low and Even Lower --- that's the day Dexcom saved Nate's life and Nate killed Dex.

Nate was at school, sitting in circle time when Dexcom alarmed for a low. 30 MINUTES BEFORE HIS SCHEDULED BG CHECK. 30 MINUTES BEFORE HIS SCHEDULED BG CHECK. Yes, I meant to write that twice. He was 26. Then 27. 30 MINUTES BEFORE HIS SCHEDULED BG CHECK WITH NO SYMPTOMS. NONE.

Nate's teacher checked him twice, started the juice box and called the nurse down to the room. They checked him again once the juice was flowing and then the nurse took Nate to her office where he stayed (with no symptoms of a low) until his bg was 103 and we both felt like after a juice box and a GoGo Squeeze apple sauce and his regularly scheduled snack of a drinkable yogurt (45g total uncovered) he would be ok but his wonderful nurse stayed close. She checked before recess, during recess and when he came in from recess. She deserves her own blog post because she is so amazing!

Nate never rebounded with a high until later that evening when Pancake apparently ate Nate's pod. Well, that's Nate's story anyway. I don't know what really happened but Nate went without insulin for a few hours and ended up high at bed time.

I was tired so I put him in bed with me. It's easier. I gave a big correction. I would be checking him often. He went to sleep and I put his Dexcom receiver on my pillow. Once I got in bed I moved it a little closer to him but still on my side of the bed.

After a few glances at Dex throughout the night and his bg being back in range I settled in for some solid sleep. Only to be awoken by a strange buzzing noise around 3:00 AM. I was confused. Confused and wet.

Turns out Nate had snuggled up near the headboard and was laying right on top of the covers, 1/2 of my pillow and you guessed it . . . Dex. Sadly, Nate had wet the bed (damn high bg) and destroyed Dex.

UGH!!!!!!!!!!!!!

I could care less about being urine soaked, or the fact that my down pillow and comforter were soaked or even that my 3 year old son was soaked. I ran to the kitchen 1/2 asleep and searched the pantry for rice. Found it. Placed Dex in it and went back to handle the rest of the situation.

I'd heard from several people that putting it in rice would dry it out and it would be fine. Yea - not working over here at Houston . . . we have a problem. Insert curse word here. A big one. Probably the F word!

Our warranty expired in July. Boo!

Nate is now on Texas Medicaid and they do not cover Dexcom.

I have to say that I think that is total CRAP. The cash price for Dexcom is $1100. The sensors are expensive but how do you put a price on a life? I am not even for 1 minute kidding when I say that Dexcom saved Nate's life. I think every child should have this life saving device and it should be paid for my insurance, medicaid, CHIP . . . whatever. The cost of the hospital stay would have been far more than the cost of the Dexcom had Nate had a seizure, lost consciousness, or worse.

These small children cannot verbalize their lows. The technology is there to help them. Why not keep them safe?

I do everything in my power to keep him safe. I count carbs, measure insulin, try and make sure everything is right on but sometimes diabetes just doesn't play fair. Sometimes it attacks without warning. And sometimes your 3-year old hides his blueberry Leggo waffle in the guest bathroom even though he told you he ate it all.

Without Dex we were checking Nate's bg 16-18 times per day.

Thank you to my lovely friend, Kimberly for loaning us hers until our new-old one arrives sometime this week. A fantabulous member of the DOC (love, love, love Kim) is sending her old receiver for us to use (thank you, Lexi for making that happen) until we can figure out what we are going to do. Ours is/was 15-months old and now I am worried about the transmitter going out. Geeez - - - why can't these things last forever?

After 26 I cannot imagine not having Dexcom. Ever.

Severe hypoglycemia

The symptoms of severe low blood sugar develop when blood sugar falls below 35 mg/dL to 40 mg/dL and may include:

Seizures or convulsions.
Loss of consciousness, coma
Low body temperature (hypothermia).

Prolonged severe hypoglycemia can cause irreversible brain damage and heart problems, especially in people who already have coronary artery disease. If emergency medical treatment is not provided, severe hypoglycemia can be fatal.

iPhone Upload - 10/23

2011-10-23T22:04:00.000-05:00

Just another week in pictures . . .

LOW, LOW and even LOWER

2011-10-17T11:31:00.000-05:00

Today's post was supposed to be about me losing weight ---

I was in the middle of mile 3 on the elliptical machine when Nate's school nurse called. Nate is 27. What the what? He's never been 27. EVER. I played the morning back in my mind. How did we get here? I bolused for breakfast at 6:30. He ate at 7:00. Jim loaded up the children at 7:30 to take all 3 to school. He's never taken Nate to school. I knew something would go wrong. I'm sorry but he's just not me.

I know he didn't drink his Danimal --- I just know it.

I spoke semi-calmly to the nurse. She was calm and reassuring. She told me he was fine. They wouldn't have even checked him if Dexcom had not alarmed. He was acting perfectly fine. After 15g he was 30. She was giving him 15 more and going to call me back. 15 minutes later 103.

Remember how I just posted about how I am doing fine with diabetes but there are still some days that are hard. Today is hard. I am finding it hard to breathe. I cannot stop crying. I want this to go away. My thoughts are taking me somewhere I don't want to go. What if his Dexcom hadn't alarmed? What is he had had a seizure? What if this low . . .

I can't type what I'm thinking because typing it somehow in my mind could make it a real possibility.

We've been having so many lows. We've been having straight lines on Nate's Dex despite the fact that one day last week he ate a Pop-Tart for breakfast and for lunch. Yea -- don't ask.

My thoughts are going in a million different directions right now. It doesn't matter what I do we are still having lows.

Here's the deal.

I wasn't going to go here yet because I'm not sure I'm ready for this reality and it's still early to know for sure.

Nate is exhibiting all the classic signs that Sophie had before she was diagnosed with Ulcerative Colitis.

Am I freaking out? Yes and No. Some days I am good at just putting it out of my mind and then there are days like today when it feels as if everything is crashing down upon me. I am starting to wonder what the hell I did in my past life to deserve all of this crap in this life but I can't stay there long. Nate is having blood and mucous in his stools, diarrhea and going as much as 14 times per day.

My 1st thought was how in the hell am I going to manage the steroids with Nate's diabetes but now as I am still trying to figure this all out it is the opposite problem. Lows. Just like Sophie Nate's little body is unable to absorb all of the nutrients from the food he is eating so that is why I think we are having all of these lows. It's like having a tummy bug all of the time.

We have started the stool study and we have our 1st appointment with Sophie's GI next Monday. I made the appointment about 3 weeks ago and was hoping and praying that is was just a tummy bug and that I would be able to cancel it but as things seem to go in my life right now --- that is not the case.

iPhone Upload - 10/16

2011-10-16T21:20:00.000-05:00

Weekly iPhone Upload --

Nate the Monkey --

Fun at the park with the littles and my cousin, Angela --
Oh yea and some 3D chalk and colored bubbles.

September 17th --- 2 Years with D

2011-10-12T22:09:00.000-05:00

So, actually it's been 2 years and 24 days since Nate's was diagnosed with Type 1 Diabetes.

The day ---- 2 years ago it was a scary day but this year it was just a day. It is Nate's diabetes anniversary but nobody really knows it but me. Well, and you know now too.

Nate on his Diaversary this year ---- funny boy!

. . . and yes he CAN and DID eat everything you see in this picture.

I think nothing could be more appropriate for me to say to myself than . . . You've come a long way, baby!

Those 1st few months were so hard. When we 1st Found Out. Feeling like Diabetes was my Kryptonite. The realization that I would never sleep through the night again ---- Sleepy, Sleepy Mommy. When I realized (SADLY) that Diabetes was here to stay. When I forgot to give Nate his night time insulin (NPH) - I felt like the WORST MOM EVER. I've dealt with Our 1st Scary Low, our LOWEST LOW and our Glucagon Low and countless HIGHs. They don't get any easier but as Hallie taught me I've gotten better at it!

I cannot believe how far we have come. Reading back through all of those posts made me cry -- a lot. I was so sad, so overwhelmed, so totally confused when I wrote each and every one. I read this one --- I Can't Find the Middle and it took me back to all of the crazy numbers we saw while on NPH and the constant carbohydrate diet (UGH!!!!!!!!!!!!!!!!!). I totally hated diabetes and what it was doing to me and my family back then. I don't love diabetes now but THANK YOU OMNIPOD for for making MDI, NPH the CC diet such a distant memory.

It was March of 2010 when Nate started his journey on the OmniPod --- Pumping, Good Grief and Hope! It was love at 1st site. <--- hahaha get it? OmniPod, OmniPod, Oh How I love Thee!

In 2010 in came Apidra and DexCom too. 2 more things that I could now not live without. Oh hell , it used to be new purses and fancy shoes I couldn't live without now it's medical devices and super fast insulin. I may or may not have become a diabetes nerd!

After going through many stages of grief and wading my way through the anger I have come out on the other side with a new outlook on Nate’s diagnosis. I can say that although managing type 1 diabetes is not easy, I am living a happy and joyful life. In 2011 I discovered that I am no longer just surviving Nate's diagnosis!

I cried a lot in 2009. I wrote about why I was still crying in 2010. Even in 2011 I cry occasionally too. Being a mom is a tough job. Being the mom of children with chronic conditions is super hard. So, yes even now I still cry sometimes but I think that is ok. It's ok with me anyway.

No one can tell us when things will feel better, no one can tell us when things will feel easier, no one can tell us when it is time to stop crying. We let our hearts lead the way. My heart led me through some dark times and only when my heart was ready to start seeing the light did it feel right to start coming out of my darkness. I still feel the darkness occasionally but my heart always leads me back to the light.

For me diabetes is not at all glitter and unicorns although I often joke about it being both. I still think diabetes is bullshit! I still get choked up when I see Nate's little bloody fingerprints on the kitchen cabinets and still tear up (ok, I usually sob) when I talk about Nate's diagnosis.

I believe in feeling the feelings that I am having and letting it be ok to be down occasionally. Diabetes is hard. Diabetes is tiring. Diabetes can beat you down. It's ok to feel those feelings. Express them, and then move on from them. You know what I'm going to say . . .

Keep Calm and Carry On.

So, I guess what I really want to say is this. I am ok today. Tired but ok. You are ok too. I have good days and bad days. You will have them too. We may be in different places but I will always meet you where you are because I was there not that long ago. We were all there not that long ago.

The One - The Only - The Super Naughty Nate:

Nate - Diagnosis Day -2009

Nate - September 2010

Nate - September 2011

Thank you all for sticking by me through the past 2 years. It means everything to me to have so much support. I know for a fact I would not be where I am today without the love and support of the diabetes community both online and in real life and my friend and family that have stood by me throughout this crazy ride.

Look who's rockin' the pod change . . .

2011-10-10T22:12:00.000-05:00

Filling Pod with Insulin

Priming

Ready to Rock

Hitting the NEXT button and then once it is in place he likes to his START too!

I still fill the syringe with the insulin and stick the pod in place but little man can do the rest.

O M G - he is only 3.

Keep calm and carry on . . .

iPhone Upload x 2

2011-10-09T22:00:00.000-05:00

I'm behind on my uploads so this one covers last week and the week before. Go me!

My No D Day Post

2011-10-09T21:38:00.000-05:00

Dang - I forgot to hit 'publish' on this one. People keep sending this to me so I thought I would share because it's funny. You know it is.

D-Family Meet-Up

2011-10-03T23:20:00.000-05:00

Working backwards through the last month . . .

Friday I was lucky enough to meet the Evans family. We started discussing the meet-up about a month ago or so and you all saw my calendar yesterday so you know the big day crept up on me! Let me just say O! M! G! I love this sweet family. Leigh and I have been DOC friends for a while ---- we've bonded over our sweet boys. Not only do our sugary sweet boys have type 1 but they look A LOT ALIKE! Earlier this year Leigh sent me a box of clothes that Aiden had outgrown and Nate has put them all to good use. I know that when I post pics of Nate in Aiden's clothes it's like looking back in time for Leigh. The boys seriously look alike.

Friday afternoon I loaded up the littles and headed to the Galleria to meet Leigh and her gang IRL. We started out at the American Girl store where all of the kiddos were in total awe. My girls made Christmas lists at least a mile long each. Then to be fair to the boys we headed to the Galleria play area where are 5 kiddos had a blast running around and playing. It's always so comforting being with another D family. Play - check bg - play - treat low - play - check bg ----- same same.

After treating a few lows we decided to grab some dinner. I'm not exactly sure what the hostess and waiter thought since there were 5 kids, 2 moms and 1 dad. Hmmm . . . they sat us in a booth so poor Leigh and Matt got the pleasure of sitting beside Super Nate. Yep, he plopped himself down right between them. He must have felt 'at home' with this fabulous set of D Parents. Bless Matt he was so patient with my Super Naughty Nate. We enjoyed a wonderful dinner with some antsy littles so we then headed outside to let them run it off a bit.

Leigh was so sweet not only did she bring us some delicious personalized iced cookies, she also brought Nate one of Aiden's walk shirts (SO EXCITED) and the girls each a shirt from Mary Claire's walk team (SO CUTE)! Thank you, Leigh and Holly!

I am so, so, so happy that I got to meet The Evans family. Thank you, Leigh and Matt for everything!!!

Hopefully, Leigh will post some pictures --- I believe she got some good ones!

This is for you, Leigh and Matt:

Woooooooo. Pig. Sooie!

Razorbacks!

Keeping calm and HOG CALLING on . . .

Where has September gone?

2011-10-02T22:47:00.000-05:00

September came and went so quickly . . .
It was an extremely busy month and I plan on working my way backwards through the month to get you (and myself) all caught up. I'm looking forward to getting back to blogging!

Super Sweet Sophie Update

2011-09-06T22:36:00.001-05:00

July was a tough month for Super Sweet Sophie. It was by far the sickest she has ever been. Here's what we were/are dealing with ---

Hematochezia

ESR Raised

Anemia

Anorexia

Ulcerative Colitis

Fatigue

Hypoalbuminemia

Yea - don't worry I had to google most of it too. They're just a bunch of fancy words that mean she felt like total poop (haha - get it).

Can you believe it's been almost 2 months since she was in the hospital?

I am happy to report that she is feeling MUCH better. MUCH, MUCH BETTER. She started kindergarten last month and has just loved every moment. She has gained 5lbs and happily tells me every day that her tummy does NOT hurt.

The Girls with their awesome principal - 1st Day of School

I would love to tell you that she is in remission but we currently STILL have her on steroids although we are trying to taper her off of them. She is also taking Azathioprine (ay za thye' oh preen) as her maintenance medication. The good news is that her hemoglobin is back up to 13 so no more Super Sleepy Sophie!

We go back to see her doctor next week and I hope to be able take her down another notch on the steroids and work towards getting her totally off within the next couple of weeks.

I want to thank everyone for all of your continued prayers, good thoughts and kind words. We feel so blessed to have so many people loving and praying for Ms. Sophie.

I also want to thank everyone that reached out to us, sent us emails, found support groups and got me in touch with other parents living with Crohn's and Ulcerative Colitis. You people are amazing!

Although many, many people have suggested eliminating food from her diet (gluten, dairy, refined sugar) or keeping her on a restricted diet (specific carbohydrate diet, anti-inflammatory diet) we have decided that at this time to just let her be a kid and eat what she likes. There are certainly foods that we avoid but she is usually the one now to eliminate them if they make her feel bad. We keep a food and poop journal (thanks to another Crohn's mom) --- don't be jealous! :)

We tried several things and for Sophie nothing has really helped except for medication. It was a hard decision but she is feeling better, has more energy and is back to her super sweet little self. In the end that is what is important to us right now.

Keeping calm and carrying on . . .

iPhone Upload - 9/4

2011-09-04T22:29:00.000-05:00

Another busy week ---
Keep calm and carry on -

Diabetes Art Day - 2011

2011-09-01T18:14:00.000-05:00

September 1st - that's today!! It's also Diabetes Art Day - - -

Lee Ann, Diabetes Blogger and Art Therapist from The Butter Compartment got the DOC buzzing about D art and here we are again. The 2nd annual Diabetes Art Day submissions from HWHAP ---

From the girls (Nate decided not to participate this year - I was ok with that):

From me:

iPhone Upload - 8/28

2011-08-28T20:57:00.000-05:00

Don't ask about the Barbie massacre --- I have no answers.

Keep calm and carry on -

Are you there CPS? It's Me, Laura

2011-08-23T23:24:00.000-05:00

I'm hoping CPS isn't on Facebook and I'm praying they don't have a caseworker reading my blog already because you know ---- Super Nate strikes again. Today he decided to face plant flat onto the floor -- front teeth 1st.

The above pictures were taken after the indecent happened, we went to the dentist and then he passed out. He fell around 4:00 PM, he slept until about 10:00 PM when I woke him to treat an oncoming low bg, gave him some Motrin and put him back to bed. Poor little guy is miserable.

The dentist took X-Rays --- that was fun --- he fractured the root on both teeth and possibly the bone. Both teeth are very loose and wiggly. We go back Thursday for further X-Rays and will be referred on from there. The thought of losing those adorable, little teeth makes me so sad.

Ugh - if we end up doing a double root canal we will have to change his name from Super Nate to Hillbilly Nate.

For your hillbilly-white trash reading pleasure . . .

Just before Nate's face plant he had a little tinkle accident so I took off his pants, cleaned up the tinkle and sent him on his way to put on a clean pair of undies. Well, apparently that never happened. When he decided to dive into the living room floor he had nothing but a t-shirt on. Luckily, someone grabbed some underwear on the way out the door but that's it. So, screaming Nate was at the dentist with nothing but a smile, a t-shirt and some undiepants! Yep - that's just how we roll down here in Texas.

Can't decide today ---
Keep Calm and Carry On or Freak Out and Run Amok

Big Nate, Sweet Sophie, and Emma the Wonderful - 1st Day of School

2011-08-22T22:12:00.000-05:00

Here's what it was like at my house this morning --- how about yours? All 3 of my kiddos were SO EXCITED to go to school.

Emma is entering 2nd grade, Sophie kindergarten and Big Nate is starting pre-school.

The girls were thrilled to start the school year!

The girls, the girls, the girls are easy peasy lemon squeezey! Sophie's 504 is in place, all of her teachers know what's up and she has an awesome 'GOTTA GO' pass that she can use at anytime. She is feeling good (update on Soph later this week) and ready for a fantastic year in kinder.

Oh Oh Oh - and then there is my Super Big Boy Nate giving my plenty of grey hair already. I was terrified to send my sweet boy off to school today. I slept maybe for an hour last night --- I went over every scenario in my head over and over and over. I was up emailing the school nurse at midnight and making more laminated lanyard tags to put on his backpack and D Bag.

After we dropped the girls off at school I started getting a bit weepy just thinking about taking Nate to pre-school. Nate was running on the low side while at school with the girls so we carbo'd him up but when we got to his school his bg was 57. Holy can't do this Batman! We gave him some apple sauce but he was so busy playing and pushing us out the door I wasn't sure he was going to eat it all.

The nurse checked in an hour later and he was 71 so they gave him 15g of carbs which is ok but snack was coming and at this point they are not bolusing for snacks. I sent 30g --- whoa nelly I knew he would be high at pick up. Oh yea - 370! Hello Roller Coaster!! Normally he needs the uncovered snack to cover the tail end of his raging breakfast basal and bolus but today the combination of the 30g he got uncovered before snack and the 30g he got for a snack we ended the day high. The good news is he had a BLAST. He got in the car telling me all about playing with his friends, singing songs and playing with train tracks. And 2 hours later he was back in range.

Oh yea - Did I mention that he was WIPED OUT after school?

As for me I had 3 hours by myself for the 1st time in almost 2 years and although it was quiet and somewhat peaceful I could not relax until my little man was home. He took a 3 hour nap which was nice for the both of us.

So, how did I get here? I have to say it wasn't easy. If you've read Nate's dx story then you know he was attending a mother's day out program when he was dx. Since it was just a little church school they were not equipped to care for a 14-month old T1. Then last year I remember being so sad when the girls went back to school. I so wanted him to be able to go but again there was just not a mother's day out program that would take him. Now my little guy is 3 and is able to go to an early childhood school is our (public) school district. Hello federally funded, 504 accepting, full time nurse having school!!

It's not an easy step to take --- letting these little ones head off to school. Letting go of the diabetes control is soooooo hard but turning over that care to perfect strangers is even harder. Trusting that our babies will be safe is almost overwhelming --- there were times today that it literally took my breath away just thinking about Nate being there without me.

I am not the 1st D Mama to send their child off to school. There have been many others facing this day just like I am today. They have done - they have kept calm and carried on!! So must I!!

I am so thankful for the parents that have helped me through this new phase of diabetes and I love that I can look to them for guidance daily. Not only have these wonderful ladies given me the moral support I needed to get through today but they also helped me prepare for this day by sharing tips on health care plans, Section 504 plans and awesome other must-haves for sending type 1 diabetes to school. If you too are embarking on this journey and are looking for some help I haven't had a chance to upload our docs to the blog yet but I can tell you that I got a lot of help from Wendy, Lorriane, Hallie, Heidi, Reyna and Tracy. Seriously ---- these women were so helpful in planning out Nate's 504, his care sheets, his EVERYTHING, even lanyard tags for his bag ---- hello Heidi!! So, thank you to all those that have taken this path before me and shared your knowledge, shared your wisdom and shared your support. Even if you are not listed about --- you all know who you are ---- Thank you. Let me say it again and please know I mean it when I write it --- Thank YOU!

And instead of signing off with my normal keep calm and carry on --- let's face it today was more like this . . .

Thanks, Mallory --- LOVE IT and LOVE YOU!

iPhone Upload - 8/21

2011-08-21T22:25:00.000-05:00

Keep calm and carry on . . .

Just Keep Swimming

2011-08-18T00:03:00.000-05:00

All 3 of my kiddos are little fishies . . . they had such a great time swimming this year! Here are a few pictures and videos to show off their mad swimming skills. I cannot believe summer is almost over. Boooo!!

Ummmm ---- yes, I know the little guy in the background is grabbing his junk. It's ok --- that's what boys do.

Some me showing of Nate's mad swimming skills videos:

Sophie too:

Yea - Emma got the shaft this summer. She's been swimming since she was 2 so she doesn't get a lot of video action. She did however; win her 1st BLUE ribbon in an individual event during her swim team season. She's one fast little guppy!!

Keep calm and swim on -

Oh and thank you for tolerating my braggy braggerton videos!

The Pajamas

2011-08-16T22:49:00.000-05:00

Jim got Nate ready for bed the other night . . . when he came out of his room he looked like this -

Sweet boy.

The minute I saw him it hit me. I was a little sad and all the sudden tears were streaming down my face.

My mind wandered back to his diagnosis --- I knew why I was crying but it took me a few minutes to make the connection.

I remembered Penny's post about her Sweet Grace --- when she outgrew the sleep pants she was wearing when she was diagnosed with T1D (If you haven't read her dx story you should --- well if you want a good cry). I have no idea why that post stuck with me but I remember when I read it I knew exactly how Penny felt in all of the moments she described from dx day all the way to the point where Grace had outgrown the pants. Same - Same.

I know exactly what Nate was wearing at dx -- I still have those clothes tucked away in a safe spot.

Nate wasn't dx'd in these jammers but he wore them in the hospital --- I can see him so clearly in that metal crib with the IV tubes sticking out. I remember now how overwhelmed I felt. How much he cried. How much I cried. How scared I was. How sick he was. How desperately sad I felt looking at my sweet boy knowing our lives would never be the same.

Sometimes there are moments that still take my breath away.

They are few and far between but there are still moments of tears and desperation for our old life back.

I had put those jammers away once they were too small in a pile of things to save. How Jim and Nate came to find them I'll never know but it just took a little glance at how much my sweet boy had grown to see too how much I have grown since Nate's diagnosis.

Although there are still moments of sadness . . . they are just that . . . moments.

Keep calm and carry on . . .

iPhone Upload

2011-08-14T05:02:00.000-05:00

I'm going to try something new here on my blog and actually try to stick with it. Maybe.
My friend, Jerod created a page on Facebook called iPhone Photography where he uploads pictures from his iPhone regularly ---- Love it!

I'm going to try and do the same here weekly.

I take a ton of pictures with my phone and they usually just sit on my phone until I upload to Facebook or my phone gets full & I delete them. So, I'm going to start dumping them here on my blog.

Usually there are a lot more --- you got off light this week. :)

Keep calm and carry on -

Inspiration Through Art - FKA Littlest Heroes Project

2011-08-11T21:57:00.000-05:00

A little about Inspiration through art from their website --

Inspiration Through Art is a non-profit organization dedicated to empowering young people to give back, and make a difference through the beauty of art. We are artists with a passion for giving and inspiring others. Through our own artistic talents we are able to come together as one, to let children around the world know that they are loved,despite the challenges they face everyday.

Inspiration Through Art was founded in January 2008 by Felicia Reinhard, made up of professional photographers, artists, children, and other volunteers nationwide that provide free programs and services to our nations heroes. Through the power of photography and the gift of art we are giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. Inspiration Through Art provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various other programs, events, and fundraisers.

Last year we signed up for Inspiration Through Art (FKA - The Littlest Heroes Project).

To make a VERY long story short we heard back from them and then we didn't and a year later we just had our pictures taken by a wonderful photographer here in the Dallas/Ft. Worth area. Brooke Lowther from MaddiePie Creations

Brooke did an amazing job! We met in mid July --- outside --- in Texas --- where it was about 100 degrees outside. Yea - what was I thinking?

To make things even better . . . Sophie had just come out of remission and was not feeling well AT ALL. Luckily, there was a restroom at the park which Sophie and I spent a lot of time in while the others were hanging at the park and taking pictures. The restroom was a God send but the restroom was also a brick building (oven) with no a/c and it was about 350 degrees inside. I won't go into all of the details here but if you've read anything about Sophie's UC you know when she has to go to the restroom it is NOT a quick trip.

Sophie and I were absolutely melting. It was sweltering in that bathroom. As you can see from the pictures Sophie was her beautiful smiling self throughout the entire shoot. Just a week or so later she was in the hospital. T-R-O-O-P-E-R!

I did not fare as well. My makeup melted down my face and I'm pretty sure the heat added about 30 pounds. Seriously! That can happen you know!

Here are a few more shots for your viewing pleasure . . .

Although it was hot as heck and Sophie was sick as can be the kiddos really had a good time. I am thrilled to have these adorable pictures of our children and I am beyond thankful to MaddiePie Creations and Inspiration Through Art for the opportunity to share them with you!

The founder of Inspiration Through Art is an amazing young woman named Felicia Reinhard. She started The Littlest Heroes Project as just that ... A 365 day project. As you can read here it turned into something so much bigger and amazing. If you have applied to The Littlest Heroes Project and never heard back I strongly urge you to read the letter from Felicia and contact Inspiration Through Art and submit your application again. Felicia is a funny, delightful and beautiful young lady that has started something so special and she is trying very hard to make it work.

Thank you, Felicia and Brooke!!

Keep calm and carry on ---

A Quick Intro . . .

2011-08-04T09:14:00.000-05:00

I've been busy working on 504 plans for both Sophie and Nate but I'm taking a little break so that I can share a few blogs with you . . .

1st off a new PWD Blogger whom I've gotten to know and love ----

Please stop by and say hello to Elizabeth over at Mountaineer Proud. We've been chatting for months via email about podding and dexing (does that sound dirty - may need to find a new term for the DexCom) and I am so excited that she has started a blog!!

And . . .

Another D-Mama in the house . . . Ida just started blogging at Wishing for a Cure . . . Now! <--- love the name! Me too, Ida. Me too! Ida's son, Nicholas was diagnosed on November 16, 2009 at the age of 4. Nicholas is a fellow podder. So, she's a Mother Podder just like me. :)

Ok ---- I've got to get back to the 504 planning. Nate's meeting is Monday.

Keep calm and carry on . . .