Our long story shortened...

20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

To see the whole story click on the "about us" tab

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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12/23/11

Christmas! yeah! ugh...

I am so conflicted when it's Christmas time. Having young kids makes it truly "the most wonderful time of the year"! But my complicated life of having twins (one with diabetes) makes me anxious. Many challenges spring up at this time of the year. You may be able to relate if you have twins or a child with diabetes or even if you have two kids.

On the twin side, the boys are now six. They share some similar interests but are becoming their own men. I can still buy Legos and Star Wars items and put both names on the tags, but this year their Christmas lists are quite different. You can really see their personalities showing through when they write a Christmas list, can't you? I used to be able to just buy two of everything, but not anymore.


I am anxious to see how Christmas morning will work. For example, one kid asked for a giant elephant. I had no idea what this meant and truly was afraid to ask. So I ("Santa") bought him a big elephant stuffed animal. The other kid didn't ask for a giant anything so I didn't buy him any type of stuffed animal. I wonder if he will complain about it on Christmas morning. We will see.

One idea my friend told me about was to buy the double-sided wrapping paper and wrap Rocco's gifts in one color and Zeke's in the other. I know this is simple but it sounds awesome! I bought the huge roll of double-sided wrapping paper from Costco this year. I hate wrapping gifts, and anything that makes it easier I willdefinitely try.

The second part of Christmas that makes me anxious has to do with the food. My family has become so good about helping me serve "carb friendly foods". That includes the extended family as well. The first Christmas after Rocco's diagnosis, we were only a diabetic family for three months. My mom, aunts and uncles were new to it as well. My father-in-law has had Type 1 diabetes for 30 years, and he was very helpful in counting carbs when we went to his house.

The other Christmas parties we visited that year were a total disaster! The boys were only two. Food was everywhere and sweets were on display! I was tempted myself to over indulge. Imagine a two year old who sees that same sweets table. Not one item had a carb count on it, and my husband and I had no ideahow many carbs were in anything. Now you can hold up any food in front of me and I can guess the amount, give or take a few carbs. By the final party that first year (my mom's), I was exhausted. I just didnt have it in me to work through diabetes and the terrible twos and the holiday season for another minute.


But then I walked into my beautiful mom's house on Christmas day. As I was taking my shoes off and helping my toddlers take off their coats, my mom came to me with a stack of processed food boxes.

"I tried to cook only things with carb counts”, she said. It may be a processed food Christmas, but at least we can measure how much he eats".

Even as I type this, I still get tears in my eyes. I will remember this sentiment as long as I live. It meant so much to have someone just understands our world and tries to help. I texted her later and told her his "going to sleep" blood sugar number was a perfect 110. She has truly been a godsend ever since. Thank you mom!

As we have gone through additional Christmases, it has gotten easier. We’ve become experts on eye-balling food and knowing carb counts. My father-in-law and I make a contest out of guessing the number. Then we look it up to see who won!

So, even though the thought of Christmas sometimes gives me hives, I still get excited as that most magical day approaches!


What are your Christmas challenges?


12/21/11

Pork rinds?

My mom told me pork rinds have 0 carbs. I had never tried these morsels but always heard people love them. The idea that Rocco could "pig out" on a whole bag of what resembled chips got me excited to try them! So I ran out and get a bag. The general consensus... Yuck! The boys and I hated them. Don't waste the money! No such luck here. Guess we are back to celery sticks.

12/19/11

snacktime at our house

It has been said over and over - "being a parent is tough".   The constant worry, the ever present questioning of oneself, and the deepest fear that something bad will happen to your child.  Well, for parents of children with diabetes we have those same feelings with a little extra kick.  For us, something bad has already happened to our children.  Something life-threatening is happening to our children every day.  Hour by hour, minute by minute and carb by carb, our lives are in a constant state worry and concern, especially around something as simple as snack time.  

Here is an example of my family's snack time.  One of my boys says "moooom, I'm hungry".  Instantly, the hair on the back of my neck stands up.  These words elicit the following thoughts: "I wonder if Rocco’s blood sugar is high or low?”.  "I wonder what he will want?".   "I hope it works with and not against his current blood sugar level".  "If he is low, let him crave something with carbs and if he is high please for the love of God let him crave celery".  I have yet to hear him say "I'd love some celery sticks, mom!", but a girl can still hope.  

Next, I think of his fingers.  One more poke in his little fingers to check his level.  Most children with type 1 diabetes average 6-10 finger sticks per day.  I constantly think to myself, "you only get one set of hands and it you can't get a finger transplant" and then I have to decide to check or guess. Sometimes, I take a leap of faith and guess the number, depending on his mood, his past meal, his exercise level and whether  he looks pale (low) or is biting his nails (high).  But, most times I check him. 

Finally, I consider his twin brother who does not have diabetes and who almost always wants a Gogurt which has lots of sugar. I then wonder "Will  Rocco be low enough to handle Zeke’s Gogurt request?".  If they request something that works against the current blood sugar level, there is a typical sad kid groan when I deny the request.   Once again, Zeke is put on hold because of Rocco’s blood sugar level.  Sometimes Rooco says "Its ok mom, Zeke can have the Gogurt - I can wait until my sugar comes down".  This is when my heart leaps out of my chest in pride and breaks a little at the same time.



Thankfully, I am blessed with boys who will eat anything I call food and put in front of them.  Most days go well.  Sometimes I can say "Yay! Rooco's number is 52. Juice boxes all around!" - these are a coveted treat in our household.  Once, I overheard Rocco whispering "Dear God, please let me be low so Zeke and I can have our Nerds Ropes".  I laughed and gave them the Nerd Ropes anyway even though Rocco was in the 200’s.  The good news is that pushing a button on Rocco’s insulin pump can effectively offset such indiscretions!  Another time, Zeke said "Moooom, Rooco's low - can we have candy?".  Being four years old at the time, it’s remarkable that Zeke would be privy to such pertinent information. Stinker! 

So even though having a child with diabetes means extra care and attention to everything my child eats, I do feel blessed that at least it is manageable, for now.  I feel lucky to be able to teach him healthier habits than I probably would have. I am proud he is growing up heathy, happy and so far pretty well-adjusted. 









12/15/11

and the award goes to...


Ok so today I do NOT deserve this award! 


More like this one...
 

Here is the story. I really enjoy making cute lunches for my kids. Having diabetes sucks. Eating healthy food while all the kids around you garbage down on HoHos sucks. So, I try really hard to ease my mother's guilt and I do this by making them fun. 

What also sucks is my son who does not have diabetes has eaten the EXACT same thing his brother has to eat for the past four years. I am not joking every meal was the exact same. Dictated solely by Rocco's blood sugar.  Thank God they are not picky!

 So once I split the twins up into separate classrooms I was truthfully a little excited to give the non-diabetic kid some sugar in his lunch. No! I do not pack hostess treats, just a really gooey PB and J once in a while. For my child with diabetes I give him a small amount of sugar free strawberry jelly and almond butter. Peanut butter is the devil for him and almond butter works better to keep his blood sugar in a good range. They get this treat on gym days so my child with diabetes can work off the AB and (s/f) J after lunch. 

So the day after we decorate our Christmas tree, I made a cute Christmas tree sandwiches. One child gets goey peanut butter and the other gets almond butter. 
If you can't see the picture there is a tree sandwich (I even decorated it with my new food color pens), six nacho chips, a couple of blackberries and some carrots. Under the napkin is the rest of the sandwich pieces. I was so proud I even showed my husband. Yeah me! 

I sent them off to school. At lunch time his blood sugar was 180. Then I got a call that before gym two hours later and his blood sugar had risen to 470! What? That's weird. He hasn't been this high in school yet so she wanted to call and let me know. I told her his pump infusion site might be clogged but go ahead and give him the insulin and send him into gym. I wondered if I should go up to the school and change his infusion site but he only had another 45 minutes of his day and he was in the gym. So I let it ride. When they got home, his blood sugar was 220. Ok, coming down. I was able to get them to eat this when they got home. 

Before dinner it was 230. That's it stupid port, you are coming out! So we changed the site and everything went back to normal. Chalk it up to a port problem. Until....

this morning when I opened the fridge and there was the culprit! 
Yep, you guessed it!!! The stellar mom that I am was soooo proud of my cute sandwiches that I switched them! Diabetic kid got gooey one and non-diabetic kid got sugar free strawberry jelly and almond butter! Best part about this story non diabetic kid is allergic to strawberries! Way to go Shar .  Oprah will be restarting her show just to have you on as a guest! Mom of the year! 

12/14/11

My guys LOVE Lenny!

Even if you do not have diabetes in your family, get this app! It is so fun and a really great way to show kids healthy eating choices.
Lenny® the Lion Carb Counting Games Now Online!

Lenny the Lion is pleased to announce that you can now play his carb counting games online!  WIth  Lenny's food guide of over 50 foods and four different games, Lenny makes learning to count carbs fun and easy for both kids and parents. Check it out!

http://www.lenny-diabetes.com/

12/13/11

Eggo Nutrigrain Waffles

For the first 3 1/2 years, breakfast was my nemesis! Anything I gave Rocco would send his blood sugar straight to the moon. I tried every cereal, oatmeal, bread, and english muffin on the market. With virtually no insulin in his system, the carbs would rise before the insulin hit him. Then by lunch, he was always in the 300s. I would send him outside to play hard or send him off to play with his twin (if it was too cold outside). Unfortunately, poor Zeke got the brunt of Rocco's high blood sugar behavior. It was so hard to see them struggle all morning. Fits, tantrums and frustration.

I always imagine this feeling to me eating four chocolate cakes then having to sit in a box for four hours.

I even just eliminated all carbs together but the fat in the other non-carb foods ate away at him too. Not as bad so I stuck with that for about 9 months and EVERYONE was sick of greasy breakfasts by the end of that stint.

But then! Then I found my best friend - The EGGO Nutrigrain Blueberry waffle! I only add a couple of squirts of spray butter and an egg on the side. This breakfast of champions did the trick!! I would check him about two hours into the insulin, low and behold- SUCCESS!! He was always in the 100's!!! He didn't yell at Zeke anymore! He didn't cry. Our mornings ran so much more smoothly. Thank you Kelloggs!

I hope if you try these little gems, your child loves them too!
http://www.leggomyeggo.com/waffles/nutrigrain-blueberry/

Blueberry Waffles

lucky

If you asked me how I feel about taking care of a child with Type 1 diabetes, my answer would be ..."lucky". 

Now, does that mean I feel lucky when I have to poke his finger 6-10 times in a day?  No. Does it mean I feel lucky when I have to inform him yet again that he isn't allowed to eat his treat yet because his blood sugar is too high for now? No. Do I feel lucky for those mornings when I pray that he will wake up today after I possibly gave him too much insulin over the night? Absolutely not. 

I do feel lucky to be given the opportunity to teach someone at an early age that life is not what is given to you, but what you do with it that matters. I feel lucky to show my son how to overcome such a duanting obstacle. I am lucky that I have the opportunity to show him how to handle his health well throughout his adult life while he is still so little and impressionable. 

I have noticed my son and many children with diabetes have this kind of "bounce back" gift. None of them seem to mind their condition. None of them seem to notice their blood sugar checks or their administration of insulin. The diabetic children I have met all seem to perceive their diabetes as some sort of an afterthought from their more pressing daily thoughts of Wii levels, birthday parties and texting conversations. 

Children with diabetes are resilient. They do not let their diabetes identify them, label them, or even really effect them. They run to the sidelines like professional athletes letting their mothers or fathers check their blood sugar all the while keeping their eye on the ball in the game. They stop bouncing with their friends at the local bounce house to drink their juice to keep their sugar leveled. They are like super heroes to me. True wonders.

Finally, I feel lucky caring for a child with diabetes because he is teaching me how to behave. I am learning how to be truly compassionate for others. I am learning that every human has a story- something that they must overcome everyday. I am learning that having a life threatening medical condition enter our family is not the end of the world and is quite "doable". I am learning how to take my otherwise meek personality and really advocate for something/someone, no matter what the cost. Finally, I am learning how to teach someone how to make lemonade out of sour lemons (with Splenda, of course!). 

So, it is for all of these lessons and reasons that I feel lucky to take care of my thriving, beautiful, and perfect son, Rocco.  I only hope I can teach him as much as he has taught me. 



Future

Today is a good day. Rocco's numbers have been in the 100’s all day. He is currently slurping his favorite after school snack - chicken noodle soup. It is autumn and it is getting colder. Soup was the perfect option.

Today as I watch him slurp his soup, I wonder about his future. As I do, many thoughts creep into my mind. At six, I feel pretty good about the type of man he will become. My crystal mommy ball says he will take care of his diabetes responsibly. He is already handling it so well. He has never played with his insulin pump like a toy. He has never pulled his port out because he was curious. I also believe he understands that his diabetes, if handled the wrong way, is life threatening. Well, as best as a six year old understands life or death.

Often, I visualize moments of his future in my mind. I think of him taking off his pump to play football and knowing just how much insulin or carbs to give himself so he can sustain his energy throughout the game. I see him checking his blood sugar before the SAT’s to ensure he stays focused. I see him bringing all the necessary equipment for his care during his honeymoon.

These are the Pollyanna thoughts I have. My worrisome mother instinct sometimes eats at me like a devil on my shoulder. That devil says "what happens if he wants to binge drink in college?" or "what happens if in 5th grade they call him robot boy because he has a pump?". Just as every mother does, I worry.

I also worry about whether he will get low during a business meeting and "blow the deal". I wonder if his wife will check his blood sugar at night. I wonder how he will react when he is sixteen and I ask how his blood sugar numbers have been all day. I wonder if I will be as patient with him while he learns as he was while I learned.

It is also hard to imagine letting him take control of his diabetes. Currently, my husband and I handle everything except when he is in school. Then there is a Mary Poppins type lady that cares for him during the day. What will it look like when it is just him? No me, no dad, and no Mary Poppins.

How am I supposed to let him just learn? How am I supposed to let him make mistakes, mistakes that I know are either life threatening or will make him feel awful? I know he is going to want to ride his bike up to Dairy Queen and get the 131 carb large Blizzard like all of his friends. Finally, at what age or point do I let him take the reigns?

Gosh! Sometimes, these thoughts seem so overwhelming to me. So today, once he finishes his soup, I guess I’ll just teach him how to add and subtract...

12/9/11

Tea


Thankfully enough, I knew Rocco had diabetes when he was just turning two. So, I started a habit early on that has blessed me during some cold days. When his blood sugar is too high for hot cocoa, he has tea. He doesn't fight it because when his blood sugar is high, cocoa doesn't sound good anyway. Peppermint tea is a favorite option in the winter. Truth be told, on those days when he is growing and "STARVING" all the time, I have often fantasized about giving him some of my appetite suppressant blueberry green tea. I have never bit that bullet! yet.. LOL!
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Btw, my funny friend told me this pictures makes it look like Rocco is plugged into the wall. Too funny!

after school snack


Here is an example of what we have after school if Rocco's blood sugar is high. Total carbs 9. He didn't like the cream cheese. I will try ranch dip next time! By the way, why does EVERY kid love ranch???? Brussel sprouts, blah! Smother them in ranch: "Mom! these are awesome!". One of the many mysteries...
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12/1/11

Yin yang twins











Ok, so I have a question for all you twin moms out there? Do twins always end up to being the opposite of each other? 

Since my boys have been babies I have joked with people that I have the blessing and the curse of comparing them at everything they do. Mainly because there are two of them doing the same thing at the same time.

As my boys grow older, I am watching them day by day split personalities from each other right in front of my eyes. I am seeing them literally become the opposite of each other. Where one is dominant the other might not be. Where one child struggles the other may excel. Where one chooses art the other feels the need to name himself the sports guy. 

They have always been close. Up until about 5 years old, they have always been pretty similar. They haven't been too competitive(I tried really hard to dodge that bullet and am still waiting for it I rear it's ugly head. I do have boys after all). So far, they really have genuine concern for one another. 

But now I see them everyday become the ying yang of each other. I am not sure how I feel about that. I am not sure why it is bugging me. 

I realize they are two separate people and I do not need them to be the same. I do not need them to be interested in the same thing but I have noticed a pattern lately that is unsettling.

I am seeing if one kid excels at something it kind of counts the other kid out. For example: if one guy shoots the ball really well, I see the other guy slink as if to say "well I guess he is the one that will be better at basketball". I watch them mentally assign themselves or their brother different roles and then not also trying that role out for themselves. Almost as if they see themselves as one unit. I wonder if anyone else out there has noticed this too? 

So help me out, are your twins the opposite of each other? Do you think it is like a marriage where you kind of just pick up where your spouse leaves off? At what age did you notice them splitting up?  How do you or did handle this? What happens next? Feel free to leave your comments below.