Heavy conversations

The following took place one morning as Elise, Mattias and I ate breakfast.

Elise: Mattias, I want to talk to you about something. About my diabetes.

Mattias: Bleeg!

Elise: Mom, can I talk about my diabetes?

Me: Of course you can.

Elise: Why do I have to get insulin shots? (we've talked about this many times with her, but she likes to ask again from time to time)

Me: Because you have diabetes. A part in your body, called the pancreas is broken. The pancreas makes insulin, which we need to live. Since your pancreas doesn't make any insulin, we have to give it to you with shots.

Elise: Why did my pancreas break?

Me: (thinking in my head, oy... I'm not going over auto-immune attacks with a THREE year old) Well Elise... we just don't know why your pancreas broke. Doctors are trying to figure out why.

Elise: Does your pancreas work?

Me: Yes.

Elise: How about Mattias's?

Me: His works too.

Elise: Why did I have to get diabetes, Mom?

Me: You know what I think? Only the strongest, the bravest, and the most special kids have diabetes. Because God knows that you would be able to handle it. Other kids would run away screaming from a needle, but you just hop up in my lap and you don't even cry! You and all the other kids with diabetes are pretty amazing!

Elise: Sometimes I don't feel very brave.

Me: But you are. And I want you to always remember it, okay?

Elise: Okay.

And with that, question time was over. Pretty heavy stuff for a three year old.

***some of the content of this conversation has been edited; like when Mattias stuck his hand in his smoothie, or the squirrel who decided it would be fun to taunt our dog from the safety of his tree, causing Seven to go all sorts of berserk.

Muito obrigada

A little thank you video Fred put together with some pictures from the Team Elise Portugal walk.

Muito obrigada means thank you very much in Portuguese.

One small step

Actually, it was a pretty big one.

Let me explain. Like most parents of kids with D, Fred and I don't get out alone much. Like, AT ALL. Because we have no family here and no one who can care for Elise. Of course, we have fabulous D-moms like Jessica and Laura who can help out in a pinch, but we don't have anyone close enough who can help on a regular basis.

The cool thing about our new neighbourhood is that it's VERY social. Every Friday night during the summer, they have a happy hour. It's at a different house every week, and there's food, drinks, one house had live music and another had a margarita machine.

Fred and I planned to attend these happy hours, but we would do it in shifts. Meaning, we would never get to go together. It kind of became a running joke. I would just tell people that Fred and I were like the president of vice-president of the United States; we never attended parties together for security reasons.

We had many offers to babysit, but when they found out Elise was a T1, their eagerness waned. Except the parents of one girl who I'll call "A".

According to everyone in the neighbourhood, A is 17 going on 30. She's very responsible, smart, and is thinking about going into medicine. And she was interested in learning about what it takes to care for Elise.

So we set up a time when A could come observe. Elise loved her instantly. And she did a great job watching, asking questions, and even did a finger poke on me (we had just tested Elise before she came over). We booked her for Friday (last night).

On Friday I tried to come up with any excuse not to leave Elise. Her rash. She had been low all day. Saturn was in the fifth house of the rising sun. Whatever. I just wasn't ready.

But Elise was so excited that her friend A was coming over that I willed myself to leave. People at the party were excited to see Fred and I together. I stayed until 11:30 and had a great time.

In fact, the only reason I went home is because babysitters now get $10 an hour, and we have a mortgage to pay. All was quiet and Elise was a steady 178.

Am I glad I finally was able to leave Elise? Yes

Will we do it again soon? Not unless we become independently wealthy.

But it's nice to know that I can do it. Such a small step to some.

Such a big step for me.

You take the good, you take the bad

Okay. 'Fess up, how many of you are now singing the theme song to the "Facts of Life?"

You're welcome.

And thank you for indulging me in my last, very whine-infested post. Sometimes a girl's gotta whine when she can't have any wine. And there's no chocolate in the house. Or gummi-bears.

I really must go shopping.

So we discovered that Elise's rash is viral and could be sticking around for the next 3 weeks. And what a suck-fest that's going to be. We have her on so many different creams/medications/treatments, it seems like every time I see her I'm either injecting her, syringing something into her, slathering something on her, or throwing her in an oatmeal bath.

With all the craptastic stuff going on (and there's more than what I talked about in my last post, some of it I just didn't feel like going into), there is one ray of light that has me doing a little jig.

Today was Elise's endo appointment.

Her A1C was 6.7.

I almost pooped my pants.

With our crazy life over the last 3 months, I had no idea what it would be. My guess would have been high 7s. We have been seeing our share of high numbers, but I forget that she doesn't stay there for very long.

The rest of the appointment went great. She didn't grow all that much, but that's okay since she had a huge growth spurt the last time.

We did get a raised eyebrow from the endo when we told her about our mad diluting skills. But she's cool with it, since it seems to work.

6.7... it's got a nice ring to it.

Itchy and scratchy

This describes how poor Elise has been feeling for the last four days.

It started off with what looked like bug bites. Weird because nobody else in the family has them and it's not mosquitoes because we have started the summer hibernation due to the 100+ degree weather here in Texas.

Then, on Sunday, it turned into an all over body rash. It looks awful. And she is so itchy that she cries. As if she doesn't deal with enough.

I took her to the pedi, and she said it could be a rash due to a virus, or an allergic reaction. She recommended Benadryl, oatmeal baths, calamine lotion, and using hydrocortisone cream very sparingly (and only on the most itchy spots). She didn't want to prescribe steroids because of what it would do to Elise's BG.

But today the Benadryl isn't really working, and the rash is worse than ever. The pedi prescribed some stuff, but wanted the endo's okay first. Of course the office hasn't gotten back to me yet, so Elise has to suffer for another night. Meanwhile, her BGs are all over the place. I just wish I could figure out what is causing this rash.

It's been a seriously pissy week... we found out that there are some issues with the house - some small, one that will cost us $1500 to fix - that the previous owners did not disclose (not sure if we have any recourse). Then this weird rash, and then last night we had a nasty storm that caused a limb from our tree to fall on both of our cars, doing about $3500 worth of damage to Fred's car, and the wind tore down a section of our fence.

Seriously universe? Can we get a break? Please?

Been locked out, been locked in

Our trip to Portugal had a very strange theme. Locking ourselves in and out of places. Not THAT big of a deal.

Except, of course, when your child happens to have type 1 diabetes.

The first incident happened to Fred. He was getting Elise into the car after visiting one of his many, many relatives (seriously, I think I met 30 "cousins" while I was there). Elise was strapped into her car seat and Fred threw the keys onto the driver seat, then shut the door.

Only then did he realize that the doors were locked. Crap.

What made this situation so bad is that lunch time was fast approaching. Elise is on NPH, which peaks around lunch time. So what we had was a child locked in a car, with insulin active and NO FOOD.

Fred tried to get Elise to unlock the door with her toes (she inherited my monkey toes). She couldn't quite do it. Fred started to panic a bit, which for anyone else is a full-blown freak-out. At home, Elise can unbuckle herself from her car seat, but this one wasn't so easy for her.

Finally she was able to Harry-Houdini her arm out and unlock the door. Whew, crisis averted.

The second incident happened at the condo we stayed at in the Algarve. For some reason, pretty much every door inside a Portuguese house has a key (think cool, olden-times looking key. I guess it's the equivalent to our push-button locks). I was running Elise's bath and walked out of the bathroom the get something. She shut the door and managed to lock herself in.

This situation wasn't as bad as the first, but I had just given her her bedtime shot, which meant she needed to start eating her snack in the next 45 minutes or so. Elise tried and tried, but couldn't unlock the door. And the space under the door was too narrow to pass the key through.

I was starting to freak out, wondering where the hell we would find a locksmith at 8:00 at night in the teeny tiny town we were staying in. We told Elise that she HAD to get the key to turn and after about 15 minutes, she was free.

The final incident happened at the same condo. Portuguese front doors are funny things. If you close them... they latch. It's not locked, you still have to turn the key something like 4 times to lock a Portuguese door (as well as mutter some incantations, I think), but it is latched And if you don't have the key, you are up a certain brown creek with no paddle.

What happened to us is, I thought Fred had the key, he though I had the key, I shut the door, locking us out of the condo at 8:00 at night with the kids, the clothes on our backs, our wallets, the insulin (thank God!), and Elise's snack.

At this point I'm wondering if we've pissed off whatever diety is over locked doors.

We placed a panicked call to the owner who told us the closest keys are in Lisbon, about 3 hours drive (one way) away. But she does have a caretaker who might be able to break into the condo. It's not a crime if the owner tells you to do it, right?

After about 30 minutes, we were back inside, and the condo only had some very minor damage.

The rest of the trip, I lived in fear of closing a door. I even made up my own pithy saying:

Never close a Portuguese door if you don't have the key.

Le sigh

Let me set the scene. We were at a church event. Elise is standing in line for one of those obstacle course bounce houses. I'm hovering nearby, holding Mattias. Hovering because this event holds all the ingredients for a BG disaster; extreme heat, bounce houses, excitement, running around, and ice cream. I was hoping the last item on that list would counter-act all the other stuff.

Anyway, back to the bounce house line. A girl, about 8 years old, is standing next to Elise. She points at Elise's dexcom sensor on her arm and asks what it is.

Elise replies very matter-of-factly, "it's my sensor. I have type 1 diabetes." Elise looks at me with a sweet, beautiful smile. My heart is bursting with pride at that moment.

The girl asks her, "so... you're sick?"

"No," Elise says, just as firmly, "I have type 1 diabetes. I wear a sensor." She shrugs her shoulders as if to say, "doesn't everyone?"

The girl comes back with, "but you have diabetes because you're not healthy, right?"

Elise looks at me again, her smile starts to falter. She says, "I'm NOT sick. I just need insulin."

The well-meaning, but very misguided girl takes Elise's hands and says, "I know ALL about diabetes! I can teach you. All you have to do is eat healthy and you won't be sick anymore!"

***insert needle scratching on record here***

Elise's face starts to fall, so I swoop in. "No", I say to the girl, "you are not right. She has type 1 diabetes. Part of her body, the pancreas, is broken and cannot make insulin. So she needs shots. There is nothing she did to get diabetes and it's not the kind that goes away."

"Yeah," interjects Elise, "I need shots. Insulin shots!" And with that, she was smiling again.

The girl looked at me as if I was growing another head right there in front of her and turned away.

Oy. Where to start with this one? I am so proud of Elise with how up front and open she is about her diabetes, but man-oh-man did I want to punt the little girl into next week for what she said. I know she's not to blame for her ignorance, but she had to have picked it up somewhere.

You know what? I blame Oprah.

You can do this. We can help.

***I was going to do this as a video. Still might. Unfortunately, with about a million boxes left to unpack (this might be an exaggeration), kids to chase after, and that fact that it's 2011, and no one has figured out how to get dinner to make itself, all I got is this all-over-the-place post.

This is my submission for the "You Can Do This" Project.
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My whole world stopped on September 6th, 2008.


My 12 month old baby had been diagnosed with type 1 diabetes.

I stopped living.

I stopped being.

I don't think I left the house by myself with Elise for about a month. I sank so deep into a chasm of despair, I feared I would never emerge.

Then came a revelation.


How I lived with Elise's diabetes would be how SHE would live with her diabetes.

Live.

I wanted her to live well.

So I had to start living again too.

I started small... going back to the story time that she loved so much at the library.

Then, trips to the park.

My big moment came when I took her out to Chick-fil-a to have lunch with my Mom's group... All by myself.

I started believing... I can do this.


If someone had told the post-dx me all we would have done in the last 2.5 years, I would have laughed at them.

We have not only lived.


We have LIVED WELL.

Since 6 months post-dx, we have taken total control of her care, making all changes ourselves. And doing a pretty decent job of it, despite the curves diabetes likes to throw at us.


We have travelled.

We had another baby.

Elise went to pre-school.

We enrolled her in gymnastics.

Ice skating.

She takes ballet and tap lessons.

We bought our dream house.

And we just got back from a 17 day trip to Portugal, where we:

Dealt with a 6 hour time change.

Experienced new foods.


Excitement.

Fun.

Stress.

And all sorts of craziness.

It was HARD. Harder than I could ever put into words for you.


But we did it.

And you can too.

If you are finding yourself in that same pit I was almost three years ago, take solace in the fact that you are not alone. There is a whole community waiting for you.

We are here.

We get it.

We are "same".

You can do this.

Thank you to Kim, from Texting my Pancreas for putting this together. She is just one example of what makes the DOC so great.

Finding same... 30,000 feet in the air

I don't know about you, but when when I'm in a fairly large group of people, I start to wonder if there are any PWD, or CWD in the crowd. I even look for the tell-tale signs.

A medical ID bracelet.

A meter case.

Tubing.

Am I the only one?

As we were flying from DFW to Madrid, I started to look at the other people on the plane. I remember checking out the wrist of the woman seated across the aisle from me. I saw nothing.

Then, during dinner, I heard beeping.

I thought to myself, "somebody's pump is beeping."

Then... "wait... somebody's PUMP is beeping!"

I looked across the aisle to the woman whose wrist I had checked out earlier, and there she was, bolusing at 30,000 feet up.

So we started chatting. She was dx'd at the age of 21, and her endo at that time had worked with Drs. Banting and Best. I'd say she was probably in her mid-70s.

I was so encouraged by our little chat. She has had very few complications, and told me about how she loved to travel all the time. In fact, she was flying to Madrid by herself to meet up with some friends from Germany. Living with D, loving life, and thriving.

Sweet music to this D-Mom's ears.

Team Elise Portugal... more pictures!

Here are some more pictures from the walk. I wish I knew all the names of the people that appear in these pictures, but I don't. I just wanted to share their beautiful faces with you. I am thankful for everyone of them.

The walk took place at the Parque das Nações (site of the '98 Expo) right by the Vasco da Gama bridge

Saying a few words before the walk begins

Love seeing all the blue!

Away we go!

Love this picture for the background... people playing soccer on a beautiful Sunday morning

Cheeeese! (or should I say Queijo!)

Elise and her cousin Carolina.

Run!

Walking along the Tejo River

So many came to walk

People of all ages

Love their smiling faces

Babies came to "walk" too!

Unfortunately, I missed out on my massage!

This picture overwhelms me. How about you?

So there you have it... Team Elise Portugal 2011, was a HUGE success! Thank you to everyone who was invovled.

A quick P.S. - I've posted my non-D related Portugal trip stuff on my other blog. Click here to read it.

Team Elise - Portugal style!

I wanted my first post about Portugal on here to be this one, because it was undoubtedly the coolest. Let me give you a little background...

We have this friend, Tiago. Fred met him in NYC, and he has since moved back to Portugal. Last year, he organized a walk the coincided with the one here in Dallas.

This year, since we were going to be in Portugal, he planned it during our trip. When I say HE planned it, that's exactly what I mean... Tiago was pretty much a one-man walk-planning committee. It was not put on by the JDRF, or any other diabetes group. It was started and run by Tiago. I think he had some help, but there were times when Fred would be on the phone with Tiago, discussing walk things at 10:00 pm our time (4:00 am in Portugal).

The end result was a fantastic walk, complete with shirts, sponsors, and almost 200 people walking. I cannot believe that so many people, most of which have no connection to Elise or diabetes, would come out and walk to show support. I think it really speaks to the generosity of the Portuguese spirit. I don't have the final numbers on what was raised, but Tiago thinks it could be over $2000 Euro (almost $2900 USD).

Many of the people were return walkers from last year and were so excited to meet Elise. Some even wanted to have their picture taken with Elise!

One of the best parts was meeting Laurinda. She is a Portuguese D-Mom that has a 11 year old daughter, Clara, with type 1. She and her family made the 3 hour drive to be a part of the walk. And like all Portuguese people, she showed up bearing gifts for the kids and some yummy Portuguese pastries too!

I wish we had had more time to spend together. Laurinda was so great to talk to, and I felt connected to her right away, even though we had just met. It just shows you how D links us together, despite being from different countries, continents, and cultures.

Okay, get ready... because I have a buttload of pictures to share. I might even have to do two separate posts because there are so many! The following pics are the ones from our camera.

Team Elise... Portugal!

The guest of honour

Too cute for words

All I can say is that Fred needs to shave (he doesn't while on vacation)

And away we go

A long blue line

Cousins!

Fred's sister, their cousin and her husband & son (R to L)

Fred's Grandma (R) and her friend, Olga

Fred's Mom (R) and her friend, Odete

Turning around point and water station

Fred with Laurinda and her family (Clara is in the middle)

Lunch time after the walk

All the type 1s that were there for the walk (except Fred, of course)

Elise sporting her cute bow made by Laurinda

Elise and the amazing Tiago!

Oh internets... I have missed thee!

I'm alive... ALIVE! Well, mostly.

And do I have some stories for you.

About a chance encounter with a PWD when I least expected it.

About BG craziness.

About SWAG-ing Portuguese food, and mostly losing.

About an incredible turnout for the Team Elise walk in Portugal.

About meeting one of the sweetest, most lovely D-Moms ever. And not getting to spend nearly enough time getting to know her and her family better.

About returning home to utter chaos.

About beaches, castles, family reunions, Elise wowing everyone with her mad Portuguese skills, and all the fun that was had.

I missed you guys. Being without internet was sooooo painful. But good too. But I feel so out of the loop! Between the dealing with jet-lag, two crazy kids, diabetes, PLUS unpacking our new home, I won't even be able to catch up on all of your lives.

I think it would be cool for anyone reading this to leave me a comment and tell me something that has happened in your life in the last 20 days. As much as it appears to be a cheap attempt to get comments, I really want to know!

I'm also hoping to get some pictures uploaded to my other blog soon, but for now I will leave you with the utter cuteness that is my kids.

Don't judge me - repost

I wrote this earlier this year... I thought by now we'd be on a pump. But we're not. And to tell you the truth, I don't think my feelings have changed at all...
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I have a secret, and I feel the need to tell you. And when I do, I don't want you to judge me. I just need to get it out. Maybe because one day I'll look back and be able to see what an idiot I was. Here goes...

I don't want a pump for my daughter.

Whew... I said it. I feel better now. Maybe you're reading and re-reading the above statement; scratching your head and asking yourself what I've been smoking. Let me explain.

To do that, you might need a little background. Elise was only 12 months old at diagnosis, and we caught it VERY early. She was put on diluted Humalog and diluted Humalin (NPH). She was put on NPH because it is the only long-acting insulin you can dilute. Her daily doses were 2 units of diluted NPH at breakfast (no fast acting), and 1 unit of diluted Humalog at dinner. If you translate that into full strength, her carb ratio at dinner was 1:100. So you can see, she was on a pretty small amount of insulin at first. A pump was never offered as an option, and of course, we didn't know enough to ask.

So 2 1/2 years later, we're still on NPH as a long-acting insulin. I have had people tell me that it is a horrible insulin regimen. That it's archaic. That we're doing a disservice to our daughter. And yet, we're still using it. Why?

Because for us, it works. Elise's last 4 A1C's have been 7.1, 7.1, 6.6, and 7.0. Unless we're dealing with some unholy hell like an illness or growth spurt, her numbers typically range from 90 to about 200 during the day. I know what to expect from NPH. I know how to tweak it. I understand how it works and how to make it work for us. But, it is a very stress-inducing insulin, and there are days when I am so over it that it makes me cry.

And still I say I don't want a pump. So why? Why would I say something so dumb?

Because I don't want everything that comes WITH a pump. I don't want to deal with sites that get ripped out.

Or air bubbles in the tubing.

Or infections.

Or scar tissue.

Or bad sites.

Or a site that bleeds.

Or seeing yet ANOTHER thing attached to my daughter 24/7

Or any of the other problems I've read about that happens when you pump.

For us, trouble shooting a high BG is fairly simple... either her insulin to carb ratio has changed, we messed up on her carb count (something that rarely happens since we weigh everything she eats and use carb factors), or the insulin has gone bad.

Easy.

A pump involves way more trouble-shooting. Something I don't think my brain can deal with right now.

Having said all that... we are taking a pump class this Thursday. And I will go into it with an open mind, and really listen. I know there are a lot of positives about a pump. And maybe in a few months you'll hear ME ranting about how awesome it is.

Stranger things have happened.

Wanna know another secret? I'm not so good with change, and I think out of everything, that's what's bugging me the most.

But what if I can't - repost

Wow, was I a mess when I wrote this. Happy to report that I could, and still am, doing it.

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I think I was born with too few arms. Or maybe I'm missing some hands. I'm not sure, but what I do know is that life with a newborn and a toddler with D is HARD.

Right now my Mom is here, and that's been a good thing. Because I'm not sure how I'm going to be able to do this when it's just me. Elise is a great help, but there are things she just can't do by herself. She can't give herself a shot (though she wants to). She can't count her own carbs. Most of the time she won't eat unless supervised.

Mattias LOVES to eat, and if I let him, he would nurse 24 hours a day I think. I'm not really one for feeding on demand; I prefer trying to adhere to a schedule when it comes to feedings, but I will never deny my baby if that is what he needs. Right now I spend a great deal of my day feeding Mattias and luckily my Mom is there to prepare Elise's food, give a shot or test a BG.

But how will I do it by myself?

I know there are those of you out there who do it, and I know that I will do it too. Because there is no other choice. But it still scares me.

This morning around 6:00 am, just as I was starting to feed a very frantic and hungry baby; Eileen decided to ask for some attention too. Fred was already gone because he had an early flight, so it was just me (well, my Mom was here, but asleep in her room).

I didn't want to put Mattias down because he was screaming from hunger, so I brought him with me to Elise's room and let him go to town on my pinkie finger to keep him quiet. That presented me with a problem... since I was cradling him with one arm, and he had a hold of my other hand, that left me with nothing to pick up Eileen and check out what the alarm was for.

What do I do? I knock Eileen of Elise's shelf with my elbow and press the OK button with my toe. I then clear the alarm, again with my toe, and pick Eileen up with my foot and place her on the bed. I guess I do have an extra pair of hands after all (fred calls them monkey feet). Now if I could just learn to give a shot with my foot...

All joking aside, I know it's going to take a lot of organization, creative problem solving, and a sense of humour to get through these next couple of months.

I think I can, I think I can, I think I can...

I hope.

Things Diabetes has taught me this month... May edition

-Even though I can't take a break from diabetes, sometimes I need a break from the DOC. There were too many horrible things going on, and it hurt too much to read anymore.

-Sometimes you just gotta think outside the box. The diluted insulin at dinner is still working pretty well, but there are some kinks to be worked out. It's still a whole lot better than what was happening with the full strength.

-Even though it's not always sunshine and roses (or unicorns farting glitter), it is getting a tad bit easier as Elise gets older. Or maybe I'm just used to it. I don't know. Sometimes when I read about wee Reuben, my heart just aches for Jules. Because I remember all to vividly the hell of D and a baby. HUGS Jules... it does get easier.

-But in some respects, it gets harder. Elise notices more. And it affects her more deeply. Like the other day when we were at dinner with a bunch of people at Chick-fil-a, and everyone was having ice cream. Elise had already had her shot, and allotment of carbs, and had run off to play. But she came back and was so sad that she couldn't have any dessert. So I just let her have some and figured I'd fix it at bedtime. Kid first, kid with diabetes second, right?