I invite you to read about Renata, and then visit her blog The Diabetic Duo. Not only is she an expat living in New Zealand, but she has two teenagers with type 1 diabetes. You can also follow her on Twitter; she’s @DiabeticDuo.

I’d like to introduce you to Renata of The Diabetic Duo.

Tell me something about your children.

Both of my children are really funny. Very witty and make me laugh at times when it’s probably not appropriate to do so.

How old were your children when diagnosed?

Kelsey was four and Marty was nine.

How were your children diagnosed?

I was completely clueless with Kelsey. We were going through a big custody battle over her (I’m her stepmom) and all I knew was that she was sick and she looked worse and worse every time I went to pick her up. I won’t get into the details because it’s a pretty brutal story, but my husband had a voice mail on his office phone when he showed up to work one Monday morning. Let’s just say obtaining custody was pretty straight forward after that stunt. I do remember being an overwhelmed new mom of a child with a disease I knew nothing about. It brought Kelsey and I together pretty quickly; we all were learning to love and take care of each other. It was a lot to take in, but we rallied as we Porters tend to do.

Martin’s hit me just me like a ton of bricks. He was allergic to red dye for the first six years of his life then he moved into epilepsy. I had just pulled Marty out of the neurology department because I knew in my gut something wasn’t right. I never once felt it was epilepsy. We finally figured it was most likely sleep apnea and had surgery scheduled for his tonsils and adenoids to be removed. All the weight lifted, so I thought. We were sitting at the movie theater a couple of days later and Marty had finished his gigantic diet coke, gone to the bathroom and started drinking mine. I remember yelling at him to not be so greedy and him crying because he was thirsty. My heart just sank. All four of us left the theater, sat at a table and tested him with Kelsey’s meter. People swirling around us all happy with their cokes and popcorn and we just had the rug pulled out from under us again. And…that was that, we got up and went straight to the hospital.

How have your children’s life changed since diagnosis?

Kelsey’s been diabetic for 13 years, so I don’t know that she knows any different. To be honest, I don’t know how to answer this question. It just is. Their life, our life, just is. The kids do what they have to do because they love themselves and life. They complain but it doesn’t last long.

I guess one thing I could say is they are more organized than most kids their age and like all D-children have more responsibilities.

How has your family’s life changed since diagnosis?

I think we are a really close family. And I don’t know that diabetes is fully responsible for that, but I do know that it plays a part. I think Marty is still getting over my being a worry wort with him since he is basically a new diabetic. But he understands why I check in often and doesn’t resent it. As far as our overall life, I don’t know that we would be doing anything different. We don’t hold back from anything now because of diabetes, so I don’t imagine that we are missing anything.

How has connecting online helped you cope with diabetes? What online resources do you use?

The online community has been amazing for me. I read about 15-20 blogs a day. I use Twitter when I can, TuDiabetes and the new D-Mom and D-Dad Connection site. I have learned so much and there are so many people there to support me even in times when I feel I don’t need it. I wish New Zealand had a bigger online community because I know there are families that would benefit from it. Kelsey has started to read my blog consistently and now has made some quality D-Facebook friends. I am hoping she will get the bug and jump in. (I am trying not to push!)

How do you manage diabetes?

Both of my kids are on MDI. They love their freedom and are extremely active. They don’t want the hassle of unplugging and re-plugging in. They know they have the option to explore the pump, but for right now they have no interest. They both do a great job with counting carbs when there are labels and they are diligent, I am quite proud of that. It’s when there aren’t labels that I think we all kind of slip up from time to time.

They test often (4-5 times a day). Marty tests more than Kelsey but he has that type of personality and sometimes goes overboard. I am thinking about getting the funding for a CGM. Being able to strap that on once a month would do wonders for us since night time (like most families) are the most nerve wracking.

What would you tell parents of a newly diagnosed child?

Well telling them to not worry is useless isn’t it? I would say have faith.

Have faith that you and your family can manage diabetes. If it’s a family effort and everyone tries their best, that’s all you can ask. I would also tell them to have an open, honest and as much stressless relationship you can have with your D-kid. They pick up on the stress and you don’t want them to hide it if they ate a cupcake at school. You need to know everything that is going on so you make the right decisions. Blood sugars do what they want to do even when you manage the disease tightly. No sense in freaking out, just correct it. Bolus or pop some food into them and move on. The more even keel you are, the better they will be during the teen and grown up years.

Lastly, connect with the DOC. Read blogs and go through their blog rolls until you find ones that align themselves closely to your personality. There is someone out there for you to connect with. All you have to do is look.

What do you know now that you wish you had known at diagnosis?

We were told that Kelsey’s life was over. And I think we believed it for a few months. Thankfully we came to our senses early, but even now I think back at how stupid I was to believe it even for a minute.

I think the other thing I wish I had known early is that there is no one way to treat and manage diabetes. That it’s an ever changing disease and you need to expect the unexpected and it’s okay to follow your gut if you feel like you wish to adjust some things.

Are you involved with any outreach or support groups? Do you do any fundraising?

To be honest, as the years moved on I fell out of outreach in the US. Since moving to New Zealand, I have started again. I am on the Diabetes Youth Auckland committee and the Diabetes Youth New Zealand committee. I feel privileged to be a part of two big organizations and I am truly enjoying myself. It has also forced me to pull my kids into more events and learning activities. Now I wish I had done more in the US if only it were just for them.

An Expat in New Zealand

Were your children diagnosed before or after your move to New Zealand?

Before, we have only been in New Zealand a year.

Were you hesitant to move to another country so far away? Did their diabetes play any role in your decision to move?

Yes, we were hesitant. We found out that the kids would be covered under the medical system. However, I probably should have done more looking into it. Some things are covered and some aren’t. Not that it would have changed our minds, just so we would be financially prepared.

Were you able to find out about medical care before the move or did you go into it blindly?

We were able to call and ask about it before hand. However, I am nervous about what will happen to them if they have serious complications. If something happens before we get residency, we will have to go home. If it’s after residency, the burden of proof that medical treatment will further their life is on us.

How does the medical care compare between the US and NZ?

Our care is wonderful. There are some things that are behind the times but, it’s more from an administrative standpoint. However, there are people who live nowhere near the cities and don’t and aren’t able to receive quality care with regards to their diabetes. It’s a big issue here. But overall I am very pleased with the quality of care my kids are receiving.

How does the insurance differ? Is there private or nationwide insurance there?

You can purchase private insurance if you have no medical issues. The kids don’t qualify, which may or may not create big problems if they have complications when they are older. I would say the good thing about socialized medicine is that the kids don’t have to worry about getting that top notch job to be covered. But how much they will be covered is always going to be an unknown.

Anything else?

Laugh, Love, Listen and BELIEVE that it will be okay. Diabetes sucks, but it’s manageable. You can do it, your kid(s) can do it, your family can do it. Have faith.

Meet other D-Moms and D-Dads each Monday.

Visit D-Mom and D-Dad Connection

Meet a D-Mom: Renata of The Diabetic Duo is a post from: D-Mom Blog

I invite you to read about Julie, the co-owner of Pump Wear, and then visit her blog. She offers the unique perspective of having three children with type 1 diabetes. You can also follow her on Twitter; she’s @pumpwear.

I’d like to introduce you to Julie of Pump Wear.

Tell me something about your children.

My youngest Nikki loves ballroom dancing, bowling and is starting to learn how to golf.

My middle son Patrick is leaving in 2 weeks to go away to college, he has spent the summer working at “Moes” and saving his money.

My oldest son Adam, just moved into his own apartment with three friends and is working a lot at the center for the disabled.

How old were your children when diagnosed?

Nikki got diabetes first at the age of 2, then 2 years later Adam at the age of 14 and 4 months later Patrick at the age of 11.

How were your children diagnosed?

Nikki was peeing all the time we were potty training and after she went 10 times in a row we thought she had a urinary tract infection.

Adam, same thing peeing all the time we were on a trip to Florida and had to keep stopping for him to pee. We finally tested his blood sugar at a rest stop and the rest is history.

Patrick was drinking a lot. When I walked into his room and saw over 20 empty bottles of water and drinks, I knew instantly.

How have your children’s lives changed since diagnosis?

Nikki has never known life without diabetes so she doesn’t really know anything different.

Patrick and Adam know what it is like to not have diabetes and they both struggle with wanting their old life without diabetes back. The boys struggle with not wanting to test all the time, and pretty much hate the hassle of it all.

The people they have all met have helped guide them in the right direction and they have made lots of friends of children with diabetes, also.

How has your family’s life changed since diagnosis?

I don’t think there is enough room here to describe it. One day we woke up and the world was turned upside down. No more just going someplace, it was hard to leave them at all, let alone find someone willing to watch them. Family and friends seemed scared to take the kids anywhere without us there. My husband and I didn’t go out on our own again for about four years.

We have become educators in all that is diabetes.

How has connecting online helped you cope with diabetes?

We use online resources all the time. We like Facebook the best because it hooks us up with people living similar lives to ours. It’s really nice to know that we are not alone and even at 2:00 am. someone is on Facebook to chat with you!

How do you manage diabetes?

All three are pumping.

What would you tell parents of a newly diagnosed child?

Allow yourself time to grieve. I didn’t realize that’s what was happening to me, but it really is like a death of one life and the beginning of another.

What do you know now that you wish you had known at diagnosis?

I wish there had been Facebook and I wish that I had known that there really are other groups and support systems out there to help.

Your oldest just moved out of the house. Is it difficult not to be right there managing his diabetes?

Yes my oldest just moved out and it is very nerve wracking not knowing all day that he is alright. I used to see him first thing in the morning, usually spoke to him during the day and than again at night. Now I usually hear from him once a day so that makes me feel better. If he for some reason doesn’t call or text me for a day I can’t sleep!

You are the co-owner of the company Pump Wear. What prompted you to start a diabetes-related business?

We started Pump Wear nine years ago when my daughter Nikki was diagnosed at the age of 2 with type 1 diabetes. We worked hard to get her on the insulin pump. At that time they were not putting very little children on the pump, but we found a wonderful doctor willing to work with us. And then we discovered that there was no way that was fun or cute for her to carry this life supporting device.

Nikki went on the pump in April and 4 months later we had Pump Wear Inc. up and running with six original products. Today we offer over 800 products for children and adults with diabetes.

What has been the biggest reward owning this business?

I have to say that the biggest reward has been the families we have met and the “Free Family Camp Weekend” that we help sponsor every year called “The Caring & Sharing Weekend”  (this will be our 4^th one in April 2011).  This has been the biggest reward to me personally because I remember so well after Nikki was diagnosed how it truly effected every person in our family and people that didn’t have type 1 could not possibly understand the devastation that we were working through. Being able to be a part of this weekend and bond with these families has been the most rewarding to me.

Anything else you’d like to add?

Yes, as a mom of three children with type 1 diabetes I have come to understand that I can’t control this disease, but I can give our children the tools, support and understanding they need to live a long and happy healthy life.

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Julie of Pump Wear is a post from: D-Mom Blog

Though I’ve been reading Heather’s blog for some time, I’ve really connected with her on Facebook. Read her story and then visit her blog Sweet to the Soul.

I’d like to introduce you to Heather of Sweet to the Soul.

Tell me something about your child.

Audrey is our “love bug.” She is the extremely loving and caring. Without a doubt she gives the best. hugs. ever.  She LOVES Fancy Nancy. She is carefree and very energetic. She is also extremely silly and has a contagious laugh.

How old was your child when diagnosed?

Audrey was diagnosed exactly one month after her 3rd birthday on April 1, 2009.

How was your child diagnosed?

Audrey was diagnosed informally over the phone by our girls’ doctor, who also happens to be a good friend of ours. She had the normal symptoms, which gradually got worse over a 5 day period. She lost weight, drank all the time, was wetting through diapers every 1 to 2 hours. She lost her appetite, she got blue lips and her eyes started to look sunken in. She was very clingy and whiny.

I called and scheduled an appointment the morning after I talked to the doctor. I will never forget the dread of going into the office and hearing the words confirmed. Type 1 Diabetes. I remember standing in complete shock and breaking down when I got to the van. I had to break the news to my husband over the phone. It was horrible. The worst day of my life.

How has your child’s life changed since diagnosis?

Audrey has adjusted so well. We are so very proud of her! She rarely ever complains about anything except on the occasion when she is playing and doesn’t want to stop. She is very proud of her pump and her “Dexie” (our CGM) and loves to show them to everyone. Audrey is pretty carefree and seems to go with the flow.

How has your family’s life changed since diagnosis?

At first life change a lot. We had to go from a pretty laid back life to a very rigid scheduled, everything planned out life. It was hard at first. I really struggled to keep our “schedule” so it would benefit Audrey, but it was extremely hard when we went anywhere. It was hard to work around her schedule, all the extra snacks, eating every couple hours, and remembering to take her diabetes supplies with us everywhere we went. She started on the pump just 5 months after her diagnosis and it was a wonderful change. It made life seem a little more “normal” again.

It has also changed the way we eat a little. I care a little more about which foods we eat and where it comes from. We have also learned more about nutrition and what foods affect her blood sugar more then others. It’s all kinda crazy when I think about it! I have never been a math person and now math is my life.

How has connecting online helped you cope with diabetes? What online resources do you use?

Connecting online is something I wish that I would have done right after Audrey was diagnosed. I just found this wonderful online community a couple months ago and it has been one of the best things that has happened since her diagnosis. This group of people who experience the same struggles and feelings that I experience is priceless. I would recommend it to everyone.

I use as many resources that I can get my “eyes” on. Blogs and websites about diabetes. Blogs written by other moms, ones written by adults with type 1 and blogs about research and technology.

How do you manage diabetes?

We have been using the Animas One Touch Ping Pump since September 2009 and the DexCom SevenPlus CGM since June 2010.

What would you tell parents of a newly diagnosed child?

Get connected. Find other parents out there who have been and are going through what you are going through. They understand and are a invaluable source of information. You will also find that they can be the best of friends too.

What do you know now that you wish you had known at diagnosis?

That I would still be struggling with the emotional roller coaster over a year later. I wish someone would have told me that it gets easier but the heartache doesn’t go away.

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Heather of Sweet to the Soul is a post from: D-Mom Blog

Emily is a busy single mom of two. Read her story and then visit her blog Life As I Know It. You can also connect on Twitter; she’s @em180.

I’d like to introduce you to Emily of Life As I Know It.

Tell me something about your child.

Camden is a pretty typical eleven-year-old boy. He rides dirt bikes, plays basketball, and loves video games. He had always wanted to be in the military when he grew up. He has a passion for learning about past wars and the weapons they used. He could tell you details about wars as though he’d been there.

How old was your child when diagnosed?

Camden had just turned ten when he was diagnosed with diabetes in July, 2009.  He was also diagnosed with celiac disease two months later.

How was your child diagnosed?

He had typical symptoms: drinking lots, peeing lots, lost 11 pounds, lethargy, nausea.

About a week before diagnosis I told a friend, “I hope he doesn’t have diabetes” due to him using the bathroom frequently. Little did I know that diabetes was serious or we probably would’ve headed to urgent care right then. By the time we did see the doctor (eight days later) his vision was blurred, he could barely walk on his own and his saliva was so thick from dehydration that you couldn’t even understand him when he tried to talk.

He was transferred to another hospital where he stayed in the Pediatric ICU for three days before being transferred to the regular pediatrics floor for three more days.

How has your child’s life changed since diagnosis?

As crazy as it sounds to me, he doesn’t seem to feel like his life has changed very much. Of course he gets frustrated by lows and highs and sometimes he tries to run off with a friend without wanting to test first. Otherwise, he’s still him and his life is still his life.

I think he seems to realize more than ever that his family is “his team.” He’s a very responsible kid and has always done really well with tight boundaries. I knew while we were learning about managing diabetes in the hospital that this trait was going to help him in a big way.

He also has a great group of friends who are genuinely interested in learning about diabetes and sometimes even want to test their own blood.

Just to make certain that I did make assumptions, I asked Camden to answer this question and he couldn’t. I asked if diabetes HAS changed his life and his answer was “No.” This makes me very happy.

How has your family’s life changed since diagnosis?

Between his diabetes diagnosis and celiac disease, they definitely added a lot of stress to the entire family and added a lot of sleepless nights for me.

We used to just pick up and go do whatever we felt like, stop for dinner if we didn’t make it home on time. No big deal. We’re a lot less spur-of-the-moment now since we have to pack supplies, snacks, lunches/dinners and we may have a high or low to deal with.

Some days I feel like it’s affecting us minimally, other days I still feel like every single aspect of our lives has changed.

How do you manage diabetes?

Camden uses a OneTouch Ping insulin pump. He and I weigh/measure his food to count his carbs and I try to remain very aware of his activity level. He still thinks that he can jump on the trampoline all day long and not worry about a low later so we’re working on him being pro-active in that respect and remembering to ‘carb-up.’ He tests his blood glucose about 8-10 times per day. I test him at least twice through the night.

What would you tell parents of a newly diagnosed child?

Biggest advice is just to not get emotionally attached to the number you see on the meter. See the number, treat it and move on…Of course I have to remind myself of that often.

What do you know now that you wish you had known at diagnosis?

I wish that I had known that this was a condition that we were never going to rein in and control. I thought that you just figure out his insulin dosage and everything would be fine. I didn’t realize that we’d be constantly trying to keep up what’s going on inside that busy body.

With that knowledge, I have lightened up and know that we’re going to see numbers that aren’t quite what we expected. But… we can handle them and keep on with our lives.

How has connecting online helped you cope with diabetes?

It’s been super good! I’m really not a social person at all. I remember as soon as he was diagnosed and they started explaining things to me, I realized that I needed to get over that and find a support group. Of course, how do I get out of the house when I’m the only one caring for a child with diabetes?? Oh! Find an ONLINE support system! Perfect!

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Emily of Life as I Know It is a post from: D-Mom Blog

You’ve met a few D-Moms here each Monday, but today I am excited to get to know another D-Dad a little better.

I invite you to read about Scott Benner and his daughter Arden and then visit his blog Arden’s Day. He offers the unique perspective of being a stay at home father raising a child with type 1 diabetes. You can also follow him on Twitter; he’s @ArdensDay.

I’d like to introduce you to Scott of Arden’s Day.

Tell me something about your child.

Arden is a softball player and a yoga enthusiast.  She is a very good student. She loves fashion, she has been picking out her own clothes and dressing herself since she was 3 yrs old.

How old was your child when diagnosed?

Arden was diagnosed almost 4 years ago on 8/22/06.  It was one month after her second birthday.

How was your child diagnosed?

To read the complete story of Arden’s diagnosis, please read How Did I Know? on Scott’s blog.

How has your child’s life changed since diagnosis?

I can’t lie, nothing positive has come from Arden having type 1. Positive things have happened since that wouldn’t have happened without type 1, but there’s nothing that I wouldn’t trade for Arden to not be sick. I’m never negative about type 1, but I am honest.

Arden has an awareness about life that she doesn’t deserve to have at this age. She knows that she is sick, she feels different at times, and she can resent the hoops she has to jump through to do everyday things, like eat and run.  The other day she cried and said she didn’t want to have diabetes any more – that happens a few times a year.

How has your family’s life changed since diagnosis?

More stress. Less time.

We haven’t just picked up and run out the door in years. We are always tired. We never don’t know what Arden’s BG is/was.

We’ve met a ton of wonderful people that are also effected by type 1. They are generally a strong bunch with wonderful spirits.

How has connecting online helped you cope with diabetes?

Connecting online has helped in so many ways, but if I had to choose one… Knowing that there are other people living the same life is knowledge that helps me remain centered. Not feeling alone lifted a huge burden. It’s very psychological, as it brings me no tangible improvement, but it’s definitely the best part.

How do you manage diabetes?

OmniPod & DexCom Seven Plus

What would you tell parents of a newly diagnosed child?

Not to set “timelines” for things. I had it in my mind that after a year I would feel less overwhelmed, confused, and scared. When that day arrived and I didn’t feel any better, it was depressing.  Honestly, it took almost two years for me to feel reasonably in control of the situation. It gets better, but there is no way to know when you’ll feel that relief.

What do you know now that you wish you had known at diagnosis?

That everything we were being taught was subject to change without notice or reason depending on the hour.

Meet other D-Moms and D-Dads each Monday.

Meet a D-Dad: Scott of Arden’s Day is a post from: D-Mom Blog

Hallie describes her blog as “the window into the world of one family living and loving with type 1 diabetes.” Read about Hallie and her daughter Avery and then visit her at BitterSweet.

I’d like to introduce you to Hallie of BitterSweet.

Tell me something about your child.

Avery is a very outgoing, happy 4 year old girl. I often say she’s small but mighty! She has personality plus! She is a very happy child who sings and skips her way through life. She is an extremely verbal child. She talks A LOT, makes up her own songs, and often comes out with some phrase or idea that surprises us. She loves reading, learning, and playing with friends. She is very independent and insists on doing things on her own!

Meet Avery. Look at those curls!

How old was your child when diagnosed?

Avery was diagnosed on April 27, 2009 – just weeks after turning 3.

How was your child diagnosed?

The first symptoms we noticed were increased thirst and urination. She started going through her diaper at night. She had NEVER done this before. She always seemed thirsty. But it went in spurts – and as soon I would be certain that it was a problem (and even then I knew the symptoms of diabetes and was worried about it), it would get better. We were potty training at the time and she was doing so well. But then she started having accidents. The big clue was not that all this was happening – because it CAN be normal – but that it was so different for her.

We started seeing a lot of irritability. She would fall apart over the littlest things and be inconsolable. Again, so different from what she was usually like. We saw weight loss. She lost 4 pounds in a couple of weeks; that is A LOT when you only weigh 25 pounds!

Avery was diagnosed in the spring. All winter long she battled one thing after another: pink eye, scarlet fever, a few rounds of the stomach flu, a weird infection that was feared to a blood infection but turned out to be ‘just a virus’, and all the normal colds and coughs that go with the season.

Right before diagnosis, she was very lethargic and began throwing up. This was just the excuse I needed to take her to the doctor and ask about the other symptoms. As soon as I saw her weight loss, I just KNEW. I had known all along but kept hoping it wasn’t that, hoping that I was just worried over nothing.  After listing her symptoms and my concern about diabetes, her doctor thought it was probably the flu, but he said they’d do a blood test to see because it was so easy. Unfortunately, I was right.

How has your child’s life changed since diagnosis?

It’s hard to say how Avery’s life has changed. Being diagnosed so young, her life now would have been very different than it was a year ago regardless. That being said, the maintenance of diabetes does affect her. She’s gotten used to checking her BG many, many times a day. She knows she can’t just go to the pantry and get food or eat whatever might be lying around at a friend’s house.

All of her babies have diabetes. She plays treating their low blood sugar, changing their sites and checking their blood sugar. When she plays kitchen or restaurant, she often talks about how many carbs are in the food. She’s been known to ask us if we think her carb ratio needs changed. She uses words like bolus, carb counts, insulin, etc. in normal conversation. That’s probably not “normal,” right?!? But it’s just part of her now. It never seems to get her down much. She can’t really remember life BEFORE.

How has your family’s life changed since diagnosis?

Honestly, it’s kind of hard to remember OUR life before! We definitely don’t sleep as much. Jason and I take turns doing night checks so we only get to sleep through the night every other night. We were always fairly organized people, so managing all the supplies, keeping track of EVERYTHING she eats, all her BG numbers and doses is definitely more work, but not that big of a deal.

We don’t go out for “date nights” as much. That tends to be the rare occurrence. We had to quit our couples Bible study because we can’t just leave her with a sitter or even leave her with good friends and family – because most don’t know how to take care of her.

We speak a new language now – diabetesonese!

If I’m being totally honest, I also have to say that I have a constant level of worry: about what her numbers are doing, what changes need to be made, is she going low, how to treat it, what kinds of foods work well together to hold blood sugar steady, will she tell if she feels low or high, is she okay when she’s not with me…? I worry about her future now. I never did that before. At least not in the same way.

However, I also think that we are a closer family. I think there is strength that comes when you are tested and you are working through it. I think I notice the small things more, I appreciate the good days more, and I’m able to see what REALLY matters much more clearly than before.

Avery with her mom and dad

How has connecting online helped you cope with diabetes?

Connecting online has been a wonderful surprise! I started a blog to keep family and friends up to date. Through it, I have met some of the most amazing people! Although many of us have never met, I consider them to be true friends. They are my D family! The support I have found is amazing. I’m sure that I would not know as much about diabetes and how to handle it or be as far along in our journey are we are if I had not found the DOC!

How do you manage diabetes?

Avery has an Animas PING insulin pump (pink, of course). We are totally in love with the pump! She hated shots; she cried and fought each one. We REALLY needed the tiny doses that the pump offers. We feel that we are able to control her diabetes better and we KNOW that she is much happier using a pump! We count carbs and write every. single. thing. in her logbook!  We check blood sugar around 10 times a day.  It just depends on the day – sometimes more, sometimes less.  We change her pump site every 3 days.

Avery testing her own blood sugar

What would you tell parents of a newly diagnosed child?

First, I would tell newly diagnosed families to seek out support. Whether it’s online, through your local JDRF chapter or through people you know with the disease, the support of people who “get it” is priceless.

I would say that it’s okay to feel whatever you’re feeling and it’s okay to fall apart. I think we have all been through that. Don’t let anyone ever make you feel like it’s “just diabetes” and that you should not be feeling sadness or anger or grief. It’s not “just diabetes.” It so much more than that.

I would also say that it DOES get better and it DOES get easier. Not easy by any stretch of the imagination, but things won’t always be as tense as they are right after diagnosis. You will eventually learn how your child’s body works and you will be able to make lots of good decisions about his/her care. Not that high or low numbers don’t happen, they do! But eventually you will have a lot more experience to fall back on when it does. So it won’t feel (as much) like a failure or that you did something wrong. At least for me, that has gotten better!

What do you know now that you wish you had known at diagnosis?

I wish I had known that the road through the sadness and grief we feel when our children are diagnosed is not a straight one. And it’s not a short one.

I guess I thought that one day I’d wake up and just….be over it.

And now I know that isn’t going to happen. There’s not a straight line from point A to point B. I still have days where it hits me like a ton of bricks. When I feel like all the air has left my body. Days, moments where I can NOT believe this is our life and that it’s not going away. Days and moments of extreme sadness. But, those days are a lot fewer and further between now. Now I know that they will always be there. Just not as often.

I wish I had known that she would not magically “get under control” and stay there. Right after diagnosis, people would ask me if her numbers were stable yet. Oh, how I HATE that question. Because the answer is NO. If only it worked that way! We may have stable days or even weeks, if we’re lucky. But it never goes away. There is never a time we don’t have to think about it. Because weird numbers happen. That’s just the D life. You learn to treat them and move on. And I’ve learned to be very thankful for those good days when we have them.

I also wish I’d found the DOC right away. It’s such a blessing to have others who understand and really empathize with you!

Avery wearing her shirt from their 2009 walk

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Hallie of BitterSweet is a post from: D-Mom Blog

Cooking with Mom

Happy Mother’s Day to all of you D-Moms.

Being the mother of a child with diabetes is a hard road to travel; one filled with frustration, worry, exhaustion, and concern.

But it is also filled with joy and love. I know each of you rises to the occasion being the best D-Mom you can be given the knowledge and resources you have at the moment.

We’re all in this together and I want to thank all of you for the support and encouragement you have shown us over these past two years. We wouldn’t be where we are today without the hands that have been extended to us by you.

You can read about other D-Moms who have shared their stories right here.

This coming week I will be participating in the Diabetes Blog Week 2010. I hope you enjoy the themed posts in the coming days.

Happy D-Mother’s Day! is a post from: D-Mom Blog

Christy Vacchio’s children were diagnosed with diabetes at a very early age. Their form of diabetes is called neonatal diabetes, something that most of us probably have not heard of before. Read Christy’s blog My 2 Sweet Babies: A Journey with Neonatal Diabetes.

For more information about neonatal diabetes, there are two studies: Kovler Diabetes Center in Chicago and Exeter in the UK (for anyone outside the US).

I’d like to introduce you to Christy of My 2 Sweet Babies.

Tell me something about your children.

Andy is an airplane nut. He really had no choice in the matter because as soon as we found out it was a boy, the airplane paraphernalia started rolling in. Dan (my husband) has built and flown model airplanes from scratch since he was about 14 years old and now works as an airplane mechanic. His dad was a pilot and was the one who got him started in model building so it’s just being passed down to the next generation. In fact, Andy is so much of an airplane fanatic that he can usually spot an airplane in the sky before I can even hear it. Guess we have a future pilot on our hands!

Andy Riding a Horse

Katie was just born in August of 2009 so we are just getting to know her. She seems to be a very happy baby and Andy has an uncanny ability to get her giggling just by looking at her. It’s also very odd that she looks almost exactly like Andy did when he was a baby. She is very determined and alert which can sometimes make her a little “diva-like.” Katie is definitely a Daddy’s girl and loves to fall asleep on Dan’s chest while they listen to opera. Her favorite singer right now is Andrea Bocelli.

Katie in the Snow

How old were your children when diagnosed?

Andy was four months old. Andy was initially diagnosed as having Type 1 diabetes and was on insulin shots.  He started an insulin pump just before his first birthday, but we found out about a rare type of diabetes called Neonatal Diabetes in September of that year and he has been on glyburide pills since January of 2007.

Katie was born in August of 2009 and we started her on glyburide as soon as she started spiking blood sugars over 200. She was diagnosed at 10 days old, though we didn’t get her actual genetic proof for another 2 weeks.

How was your child diagnosed? What were the symptoms? Was it a complete surprise?

Andy was displaying some odd symptoms within the first week of life. The doctors did all sorts of tests and just couldn’t find anything. At 6 days old, he got better and came home with us. He grew and developed normally for 3 months. When I went back to work in August, he got his first cold. I thought it was just something he picked up from daycare. For two weeks, he was losing weight, nursing every 2 hours for 45 minutes at a time, having really heavy diapers, and even lost muscle control in his neck. The doctors kept telling me it was a virus and it just had to run its course. They were even telling me I just wasn’t feeding him enough. The day he was taken to the emergency room, he was having trouble breathing and his babysitter had trouble waking him up after his morning nap. The doctors told us if we hadn’t brought him in, he would have died that night. His blood sugar was over 1000 and he was in severe DKA.

Just over a year later, an article was printed in the New England Journal of Medicine about children with Neonatal Diabetes who had been able to transition off of insulin and onto glyburide pills (normally a Type 2 diabetic medication). My new endocrinologist (we had just moved) wanted to have his DNA tested because his symptoms fit with the diagnosis of Neonatal Diabetes and not Type 1. The test results came back in January 2007 and he spent a week in the hospital being weaned off of insulin and put on glyburide. He has now been off insulin for over 3 years.

Katie was a little different. Since we knew what to look for, the pediatricians and endocrinologists agreed that we should just check her blood sugars and monitor her. Right from the start, she was higher than what most “normal” babies are. In the first two hours of life, she was 96 and 117 respectively. We sent off her cheek swab immediately to be analyzed and continued to monitor. At 8, 9, and 10 days old, she had at least one blood sugar reading over 200 so the doctor at the University of Chicago advised us to start her on glyburide even though we were still waiting on results of her DNA test. She responded immediately and we later found out that she indeed did have the same gene mutation as Andy.

How has your child’s life changed since diagnosis?

Of course, we were one of the lucky families whose children had this rare gene that responds to the glyburide treatment. The positive side of the diagnosis is that their blood sugars are very well controlled now. Andy’s blood sugars were all over the place when he was on shots, and a little better on the pump, but now he runs very stable in a tight range of about 80-140. Though he still has a rare occasion of a blood sugar below 70 or above 200, he is never in that dangerous area where we feel like we can’t handle it on our own.

The down side to his particular genetic mutation is that it is associated with developmental delays, particularly in the fine motor, speech, and cognitive areas. Andy just turned 5 in April and he is functioning cognitively and behaviorally at about a 3 year old level. That has probably been an even harder diagnosis than the diabetes itself. We are closely monitoring Katie because of this and so far she is developing mostly on track and is even a little ahead in cognitive and speech skills.  She is only a little delayed in fine motor skills.  We are hoping she may be a typically developing child due to the fact that we were able to get her on the proper treatment from the start and she was spared the DKA and brain damage Andy had.

How has your family’s life changed since diagnosis?

We had some really rough times, especially financially (I’m still paying on the medical bills!), but we’ve made it through together. I think it’s made us closer. It has also changed my career path. I have decided to go back to school to get my PhD in genetics. I hope to one day do research on Neonatal Diabetes so I can help other families with this rare condition.

I am also in the process of writing a book about our lives with this rare condition. I hope to get it published some time in the next year or two. My hope is that I can spread awareness because there are still so many doctors who don’t know about this and there may be many more patients out there who could have a totally different life if they only knew about it and could get checked.

Dan and Andy on his First Day of Preschool in 2008

Christy with Her Son Andy

How has connecting online helped you cope with diabetes? What online resources do you use?

Writing my blog has been very therapeutic for me. It helps me get my feelings out and not feel so alone in this. I was also very grateful to find a group of families like me. The University of Chicago is conducting an ongoing study of children with Neonatal Diabetes and they started an e-mail support group as well as a Facebook group called Neonatal Diabetes Registry. I have also been able to reach out to other parents of children who were diagnosed at a young age who may potentially have Neonatal Diabetes. They are now getting their children tested. If I only help one person, it is worth it.

How do you manage diabetes?

Glyburide pills. I only check Andy once or twice a day, but I still check Katie every time she eats because she is still growing so fast and I am still adjusting her dose.  For Andy, when he is sick or going through a growth spurt, I tend to check him more often and adjust his dose until he is back in range.  Just like Type 1 diabetes, growth and illness can make their blood sugars spike so we have to adjust accordingly.  It’s a good thing I’m a math wiz!

What would you tell parents of a newly diagnosed child?

If your child is diagnosed under the age of one, please participate in the study to rule out monogenic diabetes. Even though most identified are under 6 months, I read a study of a boy who was diagnosed at 11 months old and he was monogenic and able to come off of insulin. You just never know.

Those of you with Type 1, just know that it does get easier. When Andy went on the pump, it quickly became second nature for us to calculate carbs and give him his insulin. And above all, try not to let every minute be about diabetes. Enjoy your child as a child, not just a diabetic.

What do you know now that you wish you had known at diagnosis?

That Neonatal Diabetes existed.

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Christy of My 2 Sweet Babies is a post from: D-Mom Blog

You’ve read the stories of the moms and dads who have been featured here on Mondays. But now you want to learn even more of their stories, tips, and tricks. I’ve made it incredibly easy to get their updates.

You can read all of the featured D-Moms and D-Dads all in one place by subscribing to the D-Moms and D-Dads Feed Bundle.

Of course you can subscribe to D-Mom Blog in a reader or by e-mail. Subscription buttons are conveniently located in the sidebar to the right.

The orange button is the feed, the blue button with a “t” is Twitter, and and the button with the blue and pink dots is Flickr. To receive new D-Mom Blog posts by e-mail, simply enter your e-mail address into the big gray box.

Click on the buttons in the sidebar to connect or enter your e-mail address to subscribe.

More D-Blogging Posts

Blogroll: D-Mom Blog features a comprehensive list of blogs written by parents of children with diabetes as well as adult patients. Browse the blogs and submit yours for inclusion.

Dining Out: If you are planning a meal out, come check out the Dining Out guide to look up carb counts, download nutritional info, or follow links to restaurants’ websites.

Facebook: Become a fan of D-Mom Blog on Facebook and connect with others.

Subscribe: Did you know that you can subscribe to D-Mom Blog by e-mail or in a feed reader?

Share This: You can e-mail, post to Facebook or Twitter, add it to social bookmarking sites, and even post to your own blog.

Shop: Purchase products mentioned here by using the Shop button in the navigation bar or visiting the D-Mom Blog Amazon Webstore.

Twitter 101: This primer doesn’t tell you everything you need to know about how to tweet with the best of them, it’s a good intro for newbies. If you start using Twitter, make sure you follow me. I’m @DMomBlog.

All posts about D-Blogging.

D-Blogging: Feed Bundle is a post from: D-Mom Blog

Amy Lederer and I share a desire for having a positive attitude. Read her story and then visit her blog Embrace Diabetes. You can also connect on Twitter; she’s @diamomma.

I’d like to introduce you to Amy of Embrace Diabetes.

Tell me something about your child.

He is a high energy, tenderhearted, 5 year old boy who passionately loves his brothers, the Indianapolis Colts, movies, swimming and riding bikes. He has taken up a new interest in basketball and seems to have a bit of natural ability in it. He is very interested in cooking and baking and loves to help…particularly proud that he can make meatloaf (with a bit of assistance). He is loved by all who meet him because of his infectious smile and single left dimple.

Amy With Her Son Ryan

How old was your child when diagnosed?

Ryan was diagnosed at five years old exactly a week before Christmas in 2009.

How was your child diagnosed?

Type 1 Diabetes was a complete surprise…does not run in the family on either side. In hindsight, he displayed a lot of the symptoms, but I could always logically explain them away. I had made a big push about all the boys drinking water…water, water, water in the late summer. Ryan became my best water drinker; then naturally he had to go to the bathroom more. His appetite was increasing…growth spurt! He was getting up at night to use the bathroom and was “sleep walking” (so we thought), so naturally he was tired and sometimes lethargic during the day because he wasn’t sleeping well. I never put all these symptoms together because I never really considered them symptoms.

When we began getting really concerned was his personality was changing drastically. Sudden outbursts of anger followed by a withdrawing completely. He never wanted to be out of mine or Jason’s presence. We began digging into emotional disorders and that’s actually what prompted me to go to the pediatrician; I wanted to cancel out anything physical before we went down the emotional illness road. It didn’t take too long for the pediatrician to diagnose him and send us ASAP to the hospital.

How has your child’s life changed since diagnosis?

Well, his life has changed for the better when you consider how he was three to four months prior to diagnosis because he feels so much better. His personality is back. But his life is quite different than before. Shots, pokes, checks, carb counting, etc. Overwhelming to me, but not so much to him.

He sees the nurse at school daily, sometimes multiple times a day. He wears a medical bracelet now. He is crazy conscious of the time; he makes it a point to eat meals and snacks at the correct time in a very routine manner. But he has shown bravery and courage that is amazing. Very seldom complains about any of it. He possesses self-control like we could have never taught him. How many five year olds do you know will bring a cupcake home from school in his back pack and say he couldn’t have it because he’d already had his afternoon snack? He is still the same child, just with more responsibility and awareness of his body.

How has your family’s life changed since diagnosis?

Life has changed for sure. Our family has changed. Yes, there are the “worse” aspects with shots and pokes and diet and carbs. It’s often wearisome and overwhelming. But it has really strengthened our family in so many ways. We have seen a bonding between the brothers and I didn’t think that bond could ever run deeper than it already was. My 10 year old wanted to learn all the shots and routines; we were hesitant at first, but Ryan was all for it. So we taught Ethan and he can do virtually all we can do. Aaron, our 4 year old, won’t eat hardly anything without knowing the carbs first, even if Ryan isn’t with us. We have have learned to rejoice in the small victories of of life and dwell on simple pleasures. Sure we have bad moments and bad days, and there is NOTHING I wouldn’t give for a cure. But we have made a choice to do our best to see the best in life and embrace the disease and include it in our lives, not let it control our lives.

Amy's Family

How has connecting online helped you cope with diabetes? What online resources do you use?

It has been everything! There is such a wonderful diabetes community out there. And so many are so willing to embrace another into their support circle. I’m new to searching online and putting myself out there, only about a month or so into seeking, but I have already connected with about half a dozen who really encourage me and ones I feel completely confident I could go to with questions, concerns or just to vent. Nothing is more encouraging than a momma who KNOWS because she is there or has been there.

With that said, I have tried to steer clear of the negative ones that only write about doom and gloom. There is enough “hard” with the daily diabetes life that I long for positive perspective and useful tips and simple encouragement. That is why I started my blog to just document the dailies and record small victories; maybe one day I can encourage another mom in a way that I have been encouraged.

How do you manage diabetes?

We are just shy of four months into our life with diabetes. We are still “honeymooning”, so our only choice for now is injections. We do use the Humalog and Lantus pens (so much easier than syringes). Ryan has four shots a day (unless we have to use the sliding scale at night). We check sugars 4-6 times a day. He eats 6-7 times a day with meals and snacks. Carb counting isn’t very fun and especially right now since it varies from meal to meal. Lunch is actually his biggest meal of the day. Snacks are all 15 carbs though, so our big snack bin in the pantry with all the prepackaged 15 carb snacks or counted out 15 carb snack baggies makes life a lot easier. Right now, he’s relatively easy to manage and we count our blessings for that every day.

What would you tell parents of a newly diagnosed child?

I would tell them they can do it. I didn’t think there was any way I could do it, Ryan could do it or our family survive it. But I was wrong.

Take one day at a time. Celebrate small victories or new ideas. Life will be normal, just a “new normal.” And I meet people all the time who are not letting the disease stop them, so why should it stop anyone? And I would let them know that I’m just an e-mail, Facebook update or Tweet away if they ever need to share.

What do you know now that you wish you had known at diagnosis?

About the online community and how positive it can be.

And not to panic at inexplicable highs and lows (as long as they don’t stay there and form patterns).

A d-mom named Rachel told me that with diabetes, 2+2 doesn’t always equal 4 anymore…and she’s right. And I found so much comfort in that!

Meet other D-Moms and D-Dads each Monday.

Meet a D-Mom: Amy of Embrace Diabetes is a post from: D-Mom Blog