Having two...

So it is no secret that both my girls are T1D. Elly was diagnosed at 25 months old and Anne was 11 months old. At this point, both girls have had diabetes for more than half of their lives. As much as I HATE diabetes, and I HATE that both girls have to live with the D monster, I LOVE LOVE LOVE how they support each other when it comes to diabetes. They fight horribly about EVERYTHING, except when diabetes comes into play. They could be having a knock-down, drag-out fight, and the minute one of them needs a site or sensor change, they are there for each other. It is so heart-warming to see. Tonight Anne needed an infusion set change, and Elly immediately went to go and get Anne's kitty (her kitty is her lovey) and then sat right next to her until the change was done. And Anne will do this exact same thing for Elly. They have a bond that most sisters don't have. Now granted, I wish it wasn't a bond that they have, but I do feel that it will make them even closer as sisters as they get older, and for that I am grateful.

November is Diabetes Awareness Month

November is a month where diabetes gets to take front and center (not that it doesn't take front and center EVERY SINGLE DAY in my house!). But, in November, we 'D' families try and spread as much awareness as we possibly can into the dangers of diabetes. We explain what Type 1 diabetes is, how to spot the signs, how T1 is cared for, and how life is like with diabetes.

So, since Halloween just passed, I'm going to start my month of blogging with that. Halloween is such a magical and fun time for kids, and mine are no exception. They were SO SO SO excited to wear their costumes and go out trick or treating. So, I started working on their costumes in the beginning of October and got both done a couple days before Halloween. Anne was SilverMist from Tinkerbell and Elly was Dorothy from the Wizard of Oz.

For me, Halloween can bring a bit of anxiety. The girls are very excited, which usually makes their blood sugar plummet, and then with all the walking they will do, it will prolong the low, as exercise also lowers blood sugar. But, they are kids, and kids go trick or treating, so off we go while mama keeps her anxiety to herself.

Before we left, I checked both of the girls' blood sugar so I have a starting point. Elly was in the low 200's where Anne was around 150. I left them both even though they were a little high, and off we went. Within about 30 minutes of trick or treating, Anne's CGM starts beeping "low predicted." At the time, her blood sugar was 144 but I went ahead and gave her a glucose tab since we were staying out a while longer. After about another 20 minutes, her CGM beeps again with a "low predicted." This time, I didn't not do a finger check and just treated with another glucose tab. Once we got back to the house, her blood sugar was 141. If I had not given her those 2 glucose tabs while we were out, she most definitely would have gone low.

When we got home, I got the girls right into bed. They were both very tired and both fell asleep within 30 minutes of getting into bed. For the first half of the night, both girls' CGM's were beeping "low predicted." Anne was hovering at around 100, which is an amazing number during the day, but at the beginning of the night, it is way too low. Elly was hovering around 130. I treated both girls with a few Tree Top Juice Treats (my go-to low blood sugar treatment at night) but neither girl's blood sugars rose to a "safe" nighttime level until after midnight (I put "safe" in parenthesis as this number is very different for every family. Some families want their D children to sleep in the 200's or higher where some families want their kids to be in the low 100's. It is a comfort level, and my comfort level for the girls is between 150 and 200. Before they were on a CGM, my comfort level was anything between 200 and 250, as I wasn't able to see where their blood sugar was heading). Then, Anne's blood sugar decides to sky-rocket into the 300's, and i need to start bolusing her to get her back down. This can happen sometimes when coming down from excitement. Elly's blood sugar slowly started rising after midnight and by morning she was in the mid-200's, but Anne woke at a beautiful 117.

 And now, the day after Halloween, candy is 50% off. This is a beautiful thing to many D mamas. Fun-size candy is a perfect size to combat lows. For my girls, skittles and starburst are perfect to raise low blood sugar, and peanut butter cups or hershey bars are great for when blood sugar is on the low side but not too low, where it can slowly raise blood sugar and keep it there (chocolate contains fat, and fat slows the absorption of sugar into the blood stream. The fat is great to raise a mild low and keep the blood sugar more steady, but when you have a severe low (below 70) you don't want the chocolate so that is where the skittles or starburst come into play). So, off to Wal-Mart I go to buy some Halloween candy.

Yes, my girls can have candy and sweets, in moderation, just like any other child. Diabetes does not mean that they have to swear off of sugar for life. In fact, sugar is necessary for their survival. Because they have to take insulin via an insulin pump, it isn't an exact science and insulin overdosing is a way of life. I am their pancreas since their pancreas decided to go AWOL, and I can't do nearly as good of a job as a real pancreas can, and sometimes a bit too much insulin is given. Too much insulin causes blood sugar to drop too low, and the only way to stop low blood sugar and raise it back up is to eat sugar.

But, if their blood sugar is within a normal range, they can have a piece of candy or two, and it just needs to be covered by insulin. So, yes. My girls can eat sugar, just like every other child. My girls my have diabetes, but they are children, and they need to be allowed to act and behave as such.

School!!!!

I have got to keep this more up-to-date! Lord knows I have enough to say LOL!

Since Elly was diagnosed 3 years ago, the biggest fear I have had with her (and Anne for that matter) was school. I was petrified of how we were going to handle that and keep her safe. I had a little bit of practice last year when we placed her in pre-K at Kindercare. That turned out to be the best experience, for Elly and for me. Kindercare cared for Elly better than I ever would have imagined. Last September we placed Elly into Kindercare for 2 mornings a week. We had Animas come out and do a training on how to work her pump and ADA came to give the staff glucagon training. The only thing Kindercare won't do is bolus for high blood sugar (and due to being a private school, they can do this). With Elly being on a pump, they would bolus for food, where if she was still MDI, they would not and I would have to go in and do that. Also, with Elly having celiac, I had to provide all of her food rather than her eating what is made there. This, in some ways, made it easier because i would write the carb counts on all of the food and then they would bolus after she ate. They kept me informed of anything that happened with her blood sugar and called with any questions of concerns that they had. Over the summer, we went to 3 half days a week, mostly to get Elly prepared to start going 5 half days a week in Kindergarten.

At the end of the school year, Kindercare had a graduation for all of the pre-K kiddos. It was the cutest thing ever! The kids wore little mortarboards and were given a diploma and a balloon. Way too cute!!


Anne at Elly's graduation.


All the kiddos coming outside for graduation.


Elly is getting her diploma from the center director.


Elly getting her balloon, which is the biggest reason she wanted to go! And I am NOT kidding!!!


With her diploma and balloon!


My little graduate!

As we got closer and closer to September, I started to get more and more nervous. Kindercare had treated us so well, that I was hoping the public schools would do the same. In April I had called and talked with the school nurse who assured me that Elly, as is all of her diabetic kids, take 1st priority and that we need to get a 504 in place before school starts. About a week before school starting, I met with the nurse and then a few days later, we held a 504 meeting so everything Elly would need would be on paper and legal. Our nurse assured me that she would be at our school for at least the first few days while Elly was there to make sure that everyone that needed to be training in working with her was trained correctly (our nurse in in charge of 7 other schools in the district).

I am happy to report that so far, everything has been going smoothly and I am so pleased with how our school is working with Elly. Our nurse is fabulous and I couldn't ask for a better nurse or a better office staff, who is the main caretakers for Elly when the nurse isn't around. Elly is happy and loves school. She is in afternoon kindergarten, which I requested because I wanted to know where her blood sugars were trending before sending her off, and that has been wonderful. Her teacher (a man!!!) is great and Elly loves him. Our school has a very strict dress code (uniform actually) and that has actually made it easier for me to dress Elly. She has to wear navy pants/skirt/shorts/jumper and then can have a white or navy collared shirt. She has to wear tied athletic shoes as well. I had a navy pump pouch made for her which I love love love!!! It hugs her body beautifully and easily hides under her shirts, as she is beginning to become a little more self-conscious about it. I make sure her CGM sensor is places fairly high up on her arm so most of it can be hidden under her sleeves as well.

For a while I won't be venturing far from the school, just in case...but I have great faith that they will do what is needed and Elly is in the best hands possible when I can't have her with me. I couldn't ask for a better situation and thank my lucky stars that she is where she is.

Happy Birthday Elly!

My "little" girl Elly turns 5 on the 18th, and this weekend we had a birthday party for her. I just can't believe that she is going to be 5. I remember the day she was born like yesterday! And next week we will go to Kindergarten Round-up to get her registered for the fall. Ahhhhh!!!!

It was such a fun day and Elly had a great time. She actually appeared kind of overwhelmed most of the time.

She got a lot of really nice things and even was able to have a friend from school come to her party.

The cake was my pride and joy! Since Elly has celiac (as well as being VERY picky!) the option of buying her cake wasn't an option. I wanted to try and make her a cake that didn't totally look homemade, but I also have no training in cake decorating. Elly kept talking about wanting an "Ariel that she could eat" on the cake, and I was able to find a website that sold sugar screens that can be placed on a cake. Elly loved the "baby princesses" one so that is the one that I got. Then, the day before the party, I had to get to work on making her cake. I decided to make a rainbow cake, which means that when you cut into it, the inside is a rainbow of colors. It was super easy to do, but very time consuming as well. But, in the end, everyone loved it and it was TOTALLY worth the time and effort it took to make the cake.




I did find out later that Anne must have REALLY liked the cake, because after finishing her own piece, she was going from plate to plate, finishing other peoples left overs! Little turkey! Needless to day, her blood sugar didn't do well, and it took me most of the night to get her back into range.


For Elly, "D" actually played nice and didn't play too much of a role in the festivities. I was so glad for that and Elly was able to be as much of a kid as she wanted at her own party. Elly got to be a princess and have her own fairytale day, and for that, I am grateful.

Happy birthday to my beautiful girl!

Happy Mother's Day!

To all the mother's out there, I hope you have a wonderful mother's day. To my fellow "D" moms, I hope you have a spectacular day. To be a "D" mom is such an extraordinary position, and it is a place that I don't wish on anyone. Every mom worries about their child, but a D mom's worries are beyond comprehension for most "regular" moms. For a D mom, just putting our child to bed at night is terrifying, as we fear that they may not wake up in the morning. I am constantly causing my girls to bleed so I can make sure their blood sugars are OK. I am constantly causing them pain to change infusion and sensor sites. I am constantly scrutinizing everything they eat and counting every carb so I can dose their insulin accordingly. I am constantly sleep-deprived, as I am checking their blood sugars and making sure they are breathing all night long. I do this because I love my girls more than life itself and can't bear to think about my life without them.

I read this on another blog and felt that it was especially pertinent today.This is my life and the life of most other D moms around the world.

A Mother's Promise by Gary Hempleman

She walks down the hallway in silence so deep,
Keep watch over him, as her little one sleeps.
With meter in hand, she opens his door,
Making sure not to wake him as she crosses the floor,
She sits on his bedside and brushes his hair,
As he dreams of shooting baskets, without a "D" care.
She holds his hand softly; his fingers so small,
As she watches and wonders why "D" came to call.
While she watches him sleeping, so peaceful and warm,
The forces inside him fight a constant "D" storm.
Will he ever be free of shots and blood testing?
She sits and she wonders as she watches him resting.
The beep of the meter breaks the silence of the night;
A small drop of blood tells if everything's right.
The seconds count down to the final display,
I hate this damn meter; i want to throw it away.
The number is fine, one down, a lifetime to go,
As he turns in his sleep, will he ever know?
Why does this "D" happen to someone so small?
My son is my hero, but my baby most of all.
She turns at his doorway, looking back one more time,
It's a nightly routine of the very worst kind.
She walks down the hallway and time passes by,
As she sits in dark silence and quietly cries.
I have to stay strong, and for him i will fight,
We'll battle this "D" with all of our might.
I'll teach him to master and conquer this foe,
This "D" will not stop him, I promised him so.
Gary 2001


Happy Mother's Day everyone!!!

What's involved...

So, I thought I would talk about all of the supplies that are needed to care for my 2 little girls. It really is amazing everything that is needed to keep our little sweeties alive and well, as well as the cost that is involved.

These are the 2 kits that I have to carry around with me when the girls and I are away from the house. Each girl has their own kit, and in each kit there is: their blood glucose meters, an infusion site change, extra syringes and novolog, fast-acting carbs for low blood sugar, extra test strips and glucagon. So when I need to go to a simple place like the grocery store, it isn't a "grab the kids and go" event. I have to check and make sure I have everything I need in their kits before we leave the house, and then the kits can't just stay in the car. They go with the girls, so even in the grocery store, I am carrying along 2 kits. When you add my purse into the mix, as well as the 2 girls, I have a lot to juggle for a simple grocery run!
At the house, we have a spot in our garage that we have designated the "D" spot, which is where we keep all of the girls' extra pump and CGM supplies. We order their pump supplies in 3 month intervals, whereas their CGM supplies are ordered monthly. Having diabetes is not cheap, and with us having 3 diabetics in the family, our finances are stretched pretty thin. Matt is on daily injections, which is definitely the cheapest way to go, but we chose to have the girls on pumps, which gives us better control of their blood sugars, but that also raised the cost of their care. Being on a pump is actually quite expensive. We have wonderful insurance, but are still charged 20% for all of our pump and CGM supplies, which adds up quickly. Also, since there is no such thing as "generic" insulin, we are charged more for novolog (and lantus as well for Matt). A three-month supply of most prescriptions costs us $10, but three-months' worth of insulin costs us $30. So every three-months we pay $120 for the girls' and Matt's insulin. Expensive, expensive.

We also have an area in our house where we keep our sharps container as well as a Coca-Cola bank where we place our used test strips.

I also have a notebook where I keep detailed notes for each girl. Everyday, every time I poke them to check their blood sugar, I log what it was and what time I did it. I also write down when and what they eat as well as how many carbs were offered. Then, I will write down (in red) how much insulin they were given and, if was a mealtime, how many carbs they ate. This information is priceless when it comes to needing to make changes in their insulin regimen as well as when we go to see their pediatrician every 3 months.

And then, of course, the most important item for me in diabetes care for my girls:
COFFEE!!! I wish there was such a thing as a coffee IV because I would be hooked up to one immediately! I can't really even remember when the last time was that I got a full night's sleep. Even now as I write this, it is 1045pm and I am still up because I am waiting for Anne's blood sugar to go down, as she has been camping out over 400 for several hours now. Slowly, slowly, it is dropping so I am hoping to go to sleep soon but will be up again at least 2 more times overnight to check on them. And, of course, both girls will be up and ready for the day by 730am whether or not I am but, in the end, if my girls are safe, my sleep-deprived state is worth it.

The dangers of "D"

So, since Anne was diagnosed in January, she has been quite healthy. Every time she got a minor illness, like a cold, she fought it off like a champ. Elly, on the other hand, does not fight things off so easily. Counting diagnosis, Elly has been hospitalized twice. The second hospitalization was due to a urinary tract infection and when the culture came back, it confirmed ecoli. Elly was diagnosed with urinary reflux the summer before and we were "waiting it out" to see if she outgrew it, as many children do. With this UTI, we were scared that she hadn't grown out of it and more drastic measures would need to be taken, like surgery. Luckily, after going through some tests, we learned that she has pretty much outgrown it and probably won't require any further medical intervention, at least on the urinary reflux front.

Fast forward to Labor Day weekend. Anne had been acting cranky and not at all herself. She was refusing to eat, which is very unusual for her as she is usually a very good eater, and she had started to develop ketones. Chances are, the ketones were starvation ketones, brought on by her not eating, because her blood sugar numbers were actually fabulous. I just wish her numbers were the way they were that weekend all the time! That Saturday, after talking with the on-call pediatric endocrenologist, we opted to take Anne into urgent care because we could rid her of the ketones by raising her basal rate through her pump but then they would come right back. Anne was also not drinking, which was a little worrisome. At the urgent care, they took some blood and a urine sample but both came up negative for any sort of bacteria. The doctor suspected a viral infection but due to her sister's history of UTI's, as well as Anne being diabetic, they decided to give her a broad spectrum antibiotic and have us come back Sunday. On Sunday, things still hadn't improved and Anne was still refusing to eat or drink so at urgent care, we opted to give her IV fluids, as she was getting dehydrated.

Once she began to get the fluids into her little body, she became an entirely different child! She was laughing, talking and playing like normal again. It was amazing. She was also playing with the gauze from her IV.

The urgent care doctor, just following protocol, again wanted to see us the next day, Monday which was Labor Day. I was not keen on that idea, as it was a "hurry up and wait" kind of thing. At urgent care, there are no appointments. You check in and they call you in the order received, unless an emergency comes in, then you will wait even longer. This is hard enough for anyone, let alone a 1 year old! Luckily, we had a wonderful nurse that was able to talk the doctor into allowing us to call him the next day and let him know how things are going, and we will physically come back in if things don't improve.

During this entire saga with Anne, Elly was doing great. She showed no signs of sickness, which we were so thankful for since things go south very quickly with her. Monday morning, Anne was still doing great. I did a site change on Anne, which Elly was wonderful and "helped" with. Then, 830am arrives. Elly starts to complain of a tummy-ache. Oh no. Please don't let Elly be getting sick now. Then, without warning, Elly throws up. And then she throws up again. And then again. 3 times in an hour. And then I check for ketones, and they are quite large (like 2.1). I page the on-call doctor again and talk with him about what we should do. We decided to increase her basal rate for a few hours to help lower the ketones and push fluids to help keep her hydrated. Unfortunately, every time Elly would drink, she would throw it up. By the time 12N arrived, I had had enough and decided it was time to take Elly into urgent care. Just as I was getting things together to leave, the urgent care doctor called the check on Anne. I told him Anne was great but Elly was not. He said to bring her right in and he would have orders ready for an IV as well as zofran to help stop the nausea. He told me that they will start her IV in the hall if they have to. I was so thankful that he called, because when we arrived at urgent care, we waited less than 5 minutes before we were whisked into a room the the doctor has reserved for us (he picked one with a rocking chair just in case I had Anne with me. I thought that was so sweet of him to think of us like that). The nurse was able to start the IV and drew blood to start labs.

After just one bolus of IV fluids, Elly looked and acted a lot better. Unfortunately, when her labs came back, her numbers told a different story. She had very large ketones and it looked like Elly was heading into diabetic ketoacidosis (DKA). They told us that we needed to go up to Doernbecher Children's Hospital because she needed to be observed at least overnight.

So, off to Doernbecher Elly and I go. We were lucky enough that she was able to keep the IV that was placed at urgent care so she didn't have to be poked again at the hospital. Once at the hospital, they drew more labs and her numbers had worsened. This information caused Elly to be admitted rather than "observed." Overnight, they pushed the IV fluids and we were giving her massive boluses via her insulin pump to flush out the ketones. By the next morning, her ketones were down to a moderate level and we were released. Once home, Elly was able to eat and drink, and within 24 hours she was back to her normal, 4 year old self.

The scary thing about this is that all Elly had (Anne as well) was a stomach virus, which was something that has been going around like crazy recently. To a child without D, a virus like this usually won't be a cause for too much concern. If Elly didn't have D, I would have just given her lots of TLC at home and if a trip to urgent care was needed for some IV fluids, that would have taken care of it and we would have been free to go home. But when you have D, a simple virus can prove fatal. At urgent care, the doctor told me that we caught this very early, because if we had waited much longer, Elly would have gone into DKA. I am still amazed at how fast Elly got sick. 3 1/2 hours. That was all it was. 3 1/2 hours. Way too scary.

The urgent care doctor also told me that he was amazed at how fast Elly got sick. I told him on Saturday when I brought Anne in the first time that I wasn't going to take any chances due to how fast her sister gets sick. I don't think he truly believed me that when Elly gets sick, she gets sick quickly. He believes me now! Sometimes I feel like I'm over-reacting when my girls get sick, or that some doctors feel like I am over-reacting, but I would rather do that and keep them safe.