We have been thinking about getting an insulin pump for our daughter for a few months. When you make a decision, the process is not instant. You have to jump through hoops and wait for appointments. We are not at the finish line (or even the starting line as the case may be), but this week we moved one step closer to diabetes management that will hopefully increase her freedom and benefit her overall health.
We headed south to St. Louis for our first “pump clinic.”
What amazes me about our daughter is her spirit. Spirit which you would think would be dampened by diabetes.
But she had fun. In some ways it felt like a vacation for her (which is why we always try to pack some fun into our trips to see the endocrinologist). While we were in education sessions learning what we had to do to keep our child alive, she got to play in the playroom where staff indulged her with endless art projects and games. She came home with a huge stack of paintings. She hung out on the rooftop garden that overlooks Forest Park. She charmed every nurse and doctor. She became a fixture at the nurses station. They even gave her a real stethoscope. By the end of our stay, everyone knew her name and greeted her in the hallways.
She told each and every person that her brother’s first birthday was approaching in a couple of weeks. Told of our monkey theme. Drew pictures of monkeys to show them.
She had every right to be self-centered in those days, but instead she was focused on her brother’s upcoming big day.
And she chose to have fun, as much as she could.
When we were discharged, she asked if she could stay a few more days. But my husband and I were eager to return home. But not before a quick trip to the adjacent zoo.
This past week I was reminded of how remarkable she is when it comes to her medical condition when we were summoned from the waiting room to follow the nurses to the conference room to begin our appointment.
We walked toward the elevators, us, two nurses, and a teenager named Riley and his mom. My daughter did not stay by our sides, rather she walked right up front with the nurses. She began chatting, “You know, this is my favorite hospital. Did you know that I came here right when I found out I have diabetes?”
I had to hold back the tears as I thought at once how wonderful she is and how it’s not fair that at five sentences like these have to come out of her mouth.
My daughter said to the nurse, “I’m going to get a pump.”
We headed up the elevators by the purple columns (if you’ve been there, you know which ones) and began our short class on how to use the OmniPod during our week long trial.
To be continued…
Her first real OmniPod which delivers only saline during this trial week. We have to do double duty using the pump as if it was delivering insulin and doing our normal routine of daily multiple injections (DMI).
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Q: I’m hungry and I can’t walk.
Me: Are your legs wobbly?
Q: No, they’re just too bendy.
Her blood glucose was 80, so she was in fact going low. Her normal sign is being extremely hungry. I need to eat NOW hungry.
My daughter and I were sitting together in the recliner. She sat upright, looked to me and said, “I need a pump.”
This came as news to me because she has had mixed feelings about pumping. At five the unknown is scary. Will it hurt? For how long? A second or a minute? Where can I wear it? What if I am swimming in the bathtub and I rollover; will I bump it?
So after her proclamation she told me why.
I was just having a daydream and the injection that daddy just gave me in the leg suddenly split my leg open. And the injection was making me bleed everywhere. It was terrible. So I need to get my pump so that I don’t have injections anymore.
A little imagination goes a long way. But if that’s what it takes to get her on board, well okay then.
This comes just a day or two after she told me she doesn’t want a pump. I did what any good mother could and played it up. I said, “Oh, did I tell you about this little boy that’s exactly your age? His name is Caleb and he’s diabetic. Guess what? He has the exact pump you are going to get. And did you know that he can eat whenever he wants? And did you know he can even go swimming with it on?”
I grabbed the laptop and showed her this video:
Thank goodness for Lorraine who is documenting her own family’s struggle with diabetes.
I am 99% sure of our decision to change from multiple daily injections to the insulin pump. I am 99% sure about the pump we chose.
I asked the d-moms (that’s what we call each other) a few more questions about it and asked if pumping will make our lives more easy or more difficult. Turns out that it’s a lot of work (I knew it would be as we learned a completely new system), but the reward is tighter control (and better long term health).
I don’t know that we will ever be able to say with 100% certainty that any of the decisions we make about her care are the absolute best. I don’t think anyone can. We just have to do what’s best given the information we have and the resources available to us.
We head to St. Louis this week for the first insulin pump clinic.
She is suddenly all for the pump, though I doubt it will be completely stress-free for her as she learns the new system and feels the insertion and what it’s like to have a device attached to her 24 hours a day.
When she came home from school the other day she grabbed paper and markers and asked to see a picture of the OmniPod and PDM. I grabbed the sample and she got to work.
Next thing I know she has drawn, colored, and cut them out. She attached the “pod” to her arm and handed me the “PDM.”
I said, “Looks like we are at a birthday party. Would you like some cake? You would? Do you need an injection for that? Nope. Let me punch in the carbs. Wow that was easy.”
Many times that evening she ran through similar scenarios, naming what she was going to eat and entering the carbs in the PDM, complete with sound effects.
She even wore it to dance class and was showing everyone her new pump.
Granted they probably had no idea what she was talking about because most of the adults and kids just seemed to smile and nod.
But I take this as a step in the right direction and an indication that maybe she is ready to transition to the pump.
Today marks the one year anniversary of my daughter’s diagnosis of Type 1 diabetes.
I began writing a post describing the ups and downs, but I realized that I didn’t really have it in me to dig to the depths of my heart today.
And I certainly am not going to sit here and complain. We have nothing to complain about. Yes, it sucks for my daughter to have diabetes. It sucks for her, not for me. I do what I have to for her and would do even more.
But you know what? I bet if we asked her if her life sucked, she would say no.
Just this morning she announced to the librarian matter-of-factly that she has diabetes and couldn’t have the orange juice they were serving with pancakes. The librarian remarked that it’s great that she knows what she can and can’t have.
And having diabetes did not ruin our morning or our outing.
Yes, we had to rearrange meal and snack schedules. Yes, we had to test and inject in front of a room of strangers. Yes, we had to bring our own syrup.
But in every other way, she was a happy-go-lucky four-year-old participating in a great activity at the library.
At the farmer’s market she didn’t ask for home made sweets, instead she went right to the last row and asked for a bag of sprouts. And that has nothing to do with dietary restrictions and everything to do with her sophisticated tastes.
She and my husband went to the other library in the afternoon for a screening of the latest Scooby Doo movie (her favorite!). I packed popcorn as her afternoon snack.
Minutes before dinner she told me that she was hungry and needed to eat something. She said she couldn’t wait.
I checked her finger and she was going low. 73 to be exact (her target range is 100 to 200 and anything under 80 is considered hypoglycemia).
I reached in the high cabinet for her emergency juice and then poured her a cup of milk.
At not-even-five it’s difficult to articulate how you are feeling when you are going low. But we have noticed that she usually and suddenly feels very hungry.
Today we finally received notice of the school that she will attend for kindergarten in the fall. We got the school that we put down as our first choice. A school chosen by us not only because we loved it when we walked in, because academics seem strong, because there appears to be a real sense of community. But also because my husband and I can get there the quickest in case of an emergency, because there is another diabetic child there now, and because the staff did not skip a beat when we started asking questions about caring for a diabetic.
A year ago today I was wondering how I could care for a child who’s life is literally in my hands. And today I begin wondering how I can trust total strangers to care for her almost seven hours a day in my absence.
I have not even begun to add up our out-of-pocket medical bills from the past year. I am thankful that we have decent insurance.
In the past year we have (minimally)
- Checked her blood glucose level 1,460 times
- Used 1,460 test strips and 1,460 lancets
- Used 1,460 alcohol swabs
- Given her 1,095 injections with a pen needle
- Given 365 injections by syringe
Lather, rinse, repeat. Right?
I could check her BG level in my sleep…and sometimes do in hers.
Last week as I conversed with David the Pharmacist about our co-pays going up and supplies per refill going down, I asked how diabetics without insurance do it.
He said they don’t. It’s catastrophic. They have to go on public aid. Many people aren’t testing as often as they should.
That’s sad. It’s sad that in America people can’t get the medical care they need, that they can’t get affordable prescriptions.
In fact I consider myself a pretty savvy consumer and only found out within the past month of a service that has the potential to save me $50 a month on testing supplies. No one told me about this and I went an entire year without this service.
I don’t think you’ll ever hear “whoa is me” when it comes to my life. Of course it has its ups and downs. Maybe more than some people, but definitely less than others.
So is this a “happy” anniversary? Though it marks something that I would rather not have as part of our daily lives, I am happy with where we are today given what we have been dealt.
Life is good.
Most days I don’t even think about it.
That statement at once is true, yet couldn’t be further from the truth.
This morning my daughter asked, “Remember last Easter when I was diabetic and I could only eat some of the candy that was in the eggs that I found at the Easter Egg Hunt?”
I replied, “No, you weren’t diabetic last Easter. Not yet. I just didn’t want you eating too much candy.”
I find myself categorizing events as pre- and post- diabetes diagnosis. And she is beginning to as well.
We recently left a birthday party and as we drove past a familiar building she said, “Remember when daddy worked in that building and he took me on a tour? I wasn’t diabetic when he worked there.”
The conversation went on and culminated with the following:
Why do I have diabetes?
Some kids have diabetes and some don’t. Unfortunately, we don’t have a choice.
But we do have a choice and I choose not to be diabetic.
I’m sorry, but it’s not that simple and not our choice to make.
What do you say to a four-year-old saddled with a condition most adults can’t even handle?
That was the first time that she asked me why her? And as I continued driving tears came to my eyes because there was really nothing I could say or do to take it away from her. I cried most of the way to our destination, glad that she was seated behind me out of view, putting on the happiest voice I could as our banter continued on a different subject.
That’s what it’s like for her. She takes it all in stride. After a bad moment, she gets on with her life.
We are approaching the one year anniversary of her diagnosis. At once it seems like it’s been a long year and that it has flown by. At moments it feels like she’s been diabetic forever. At times I remember the pre-diagnosis freedom and it seems like only yesterday that we were carefree.
We could just jump in the car and go. Go wherever we wanted, whenever we wanted. Footloose and fancy free. And we could travel light.
Now every trip outside the home revolves around schedules. Three designated meal times. Three designated snack times. Divergence can mean drastic highs or drastic lows.
Now we require all the accoutrements: a big bag full of emergency snacks, drinks, her glucose meter, phone numbers, supplies, life-saving glucagon. Even more if we plan on dining out: insulin, pen needles, food guide, charts with blood glucose corrections and how much to bolus based on carbs consumed. And more.
My husband recently waxed nostalgic about their Sunday morning trips to a nearby lake. Every Sunday morning the two of them would take off on little adventures. Would walk around the lake at least once. Feed the ducks. Pick up and discard trash. Talk to whoever might be there fishing. Sometimes they would be gone so long they wouldn’t get back until lunchtime. Sometimes they would stop and dine and not get back until well into naptime.
Those were carefree days.
One warm afternoon a few weeks ago I took the kids for an afternoon walk. We ended up going to the park to play for a bit before trekking back home. My daughter and I used to go for long, long walks ending up at one of several parks at quite a distance from our home.
But last summer, we often drove to those same parks. My fear was that she would have a low and I would be stranded without a vehicle and unable to get help for her.
But we have to live our lives. We have to be constantly prepared for the worse, but we have to live.
So when I say that days go by without thinking about diabetes, it is both true and false. It is a part of every minute of our lives. It is ingrained in our routine. We constantly pack the heavy bag before leaving the house and dutifully lug it with us. We test her four times a day and give her four injections. We count carbs. We weigh and measure food. We read labels. We pack snacks. We fill prescriptions. We calculate insulin dosages. We awake at 2:00 in the morning to check her finger while she sleeps to make sure she isn’t going low after her long-lasting insulin has been increased.
It has become so routine that it is just a part of life now.
And then there are moments that hit me like a ton of bricks. Like when I read about another diabetic having a low in the middle of a store and thankfully an employee saw that it was a life-threatening emergency and got her juice. And I deeply weep because I know there will come a time when my own daughter is faced with the same situation and I will not be there to help her.
I wrote this post one year at Valentine’s Day when Q was still in preschool. At the time we were still doing injections and practiced a tight eating schedule. Now that we have an insulin pump, she can indulge a little more at parties. But big bowls of candy are still off limits.
The preschool had a Valentine Disco Dance earlier this week. This is our third one and I knew the drill. Luckily most parents are opting to bring somewhat healthy snacks like veggies and cheese and crackers.
The dance is from six to eight in the evening, which forces us to break from our schedule. Dinner had to come a little early and anything consumed at the party would be outside of our normal snacking guidelines. Not a big deal for any normal kid, but for a diabetic child changes in normal eating times and snacking outside of normal parameters can cause wild swings in blood glucose levels.
I did what I could, serving dinner as close to our departure time as I could. I gave the little pep talk about choosing the veggies and cheese if she gets hungry while we are there. And I promised that we could bring something home.
I packed two empty containers in the bag we take everywhere we go. You see, cupcake decorating is one of the big activities at the party. My daughter decorated a cupcake, topping it with layers of sugary icing and sparkling sprinkles. The other children licked icing-covered fingers and opened their mouths wide to sample their delicacies.
With a positive voice I told my daughter how yummy her cupcake looked and helped her put it in our container for later.
She headed to the snack table and loaded a plate with veggies and cheese. She asked if she could have some apple slices, strawberries, and crackers.
I let her indulge in two apple slices, one strawberry, and two crackers.
I knew that with all the running around and dancing that she was expending energy and the small amount of carbs would keep her from dipping.
But a cupcake would have sent her over the edge causing a crazy high that would take days to even out from.
At bedtime that night she asked for the sugary cupcake we brought home. I said perhaps she could have it the next day with a meal. And in all honesty, three days later it still sits in the refrigerator, untouched and forgotten.
And this is what we do, what we have done even before the diagnosis of Type 1 diabetes. We limit the bad stuff and encourage the good. And the bad stuff is quickly forgotten.
We find stashes of Halloween candy in the high cabinet as we make room for Easter treats. We remove bags of candy from our home, tempting coworkers or stashing them in desk drawers.
But it has to be difficult for a four-year-old to not only be tempted time after time with forbidden fruit, but to have the understanding that the answer is no.
She is a normal preschool girl. You wouldn’t be able to tell her from the others on the playground, or at dance class, or at the library.
But unfortunately food, bad-for-you-food, is so strongly entrenched in how our society celebrates. Name any holiday and there is a traditional food-centric activity or indulgence.
Today they celebrated Valentine’s Day at school with the traditional card exchange.
Valentine’s cards don’t have carbs, you say.
Oh yes they do! Because attached to the cards are suckers and smarties and chocolates and heart-shaped sugar, sugar, sugar.
Refined sugar that sends glucose levels skyrocketing.
And even if I let her indulge in one of the treats, individually-wrapped candy rarely has nutritional information and carb counts would be a guess.
So as she pleaded at lunchtime today and again at dinner for just one, please just one, lollipop, I went to the stash of sugar-free lollipops and talked her into one of those instead.
But they are not special. They are not Valentine’s. They are not heart-shaped. They are not special gifts from her friends.
We gave out Play-doh, which we have done every year, even before her diagnosis.
In return she received a huge bowl of temptation, being denied, and confirmation to her four-year-old self that she is diabetic and different.
In all honesty, she constantly amazes me with her understanding. She proudly tells me when an injection didn’t hurt or only grits her teeth and crinkles her nose when I know it burns and pinches. She is able to take no for an answer, when she has every four-year-old right to throw a fit in protest.
And she will get through this holiday, not once questioning “why me, why am I diabetic?” Instead focused on her meticulous plans for giving to those she cares about.
My daughter’s preschool teacher is out for a few weeks and there is a substitute. I think the kids miss her and miss the routine.
I can’t say that I am entirely comfortable leaving her with someone who doesn’t know her well. The only reason why I was confident allowing her to return to preschool after her diagnosis is because the two teachers know her and care about her (as they do all the students).
The sub seems a bit flustered at times and doesn’t always have full control of the class–a group of four- and five-year-olds who can be pretty unruly at times.
My daughter returned to school today after a week and a half off. She told me this morning that she was nervous about going because she hadn’t been there for so long. But she went and the kids greeted her and told her that they missed her.
What was disheartening is getting a phone call from my mother at 12:30 with my daughter crying in the background. It seems when her grandfather picked her up at noon she was pretty upset. When she got home and told grandma why, she became very upset again. They called me and she said she wanted me to come home, which I could not.
She told grandma that she was upset because she was very thirsty and the teacher wouldn’t let her get a drink from her cubby.
Each and every time we leave the house I pack two drinks for her. On school days, one of these is a smaller cup of diluted sugar-free Kool-Aid that she can have if she wants while the other kids drink juice. Most days she just drinks water. The other, larger cup is always filled to the top with water.
When a diabetic’s sugars start getting high, they get thirsty. That is why extreme thirst is one of the first signs of undiagnosed diabetes. And it was the first sign for us. Diabetics must have undenied access to water. And the doctor’s note that is on file with her school states that she must have access to water. This has never been an issue.
Now I wasn’t there and I don’t know exactly what did or did not happen. But I will say this: even at only four, she knows her body and knows when she needs to drink. And just like in the weeks leading up to her diagnosis, if she doesn’t get water when she needs it, she will become emotional, crying without being able to stop. (Being very emotional can be a sign of extreme high or low BG.)
When her BG was checked at lunch today it was in the 300’s. That’s high. Over 300 and we have to check for ketones. I saw the snack she had at school today and that was not the culprit.
I am sure she was running high for whatever reason and her body needed water to flush it out.
As I prepare to send her to kindergarten next year, I have been reading up on our rights at school regarding her care. The ADA has prepared an almost 300 page book on The Legal Rights of Students with Diabetes. I have had two different conversations with people in the last two days about advocating for my own child and my fears that it will be a struggle when she enters public school.
Diabetes is not a disability, but at the same time you cannot be discriminated against.
My daughter is not the first diabetic child to go to public school. But it is hard to have a positive outlook in the months leading up to it when I hear over and over again about the struggles of other families.
Like children who are not allowed to even carry their glucose meters because the small lancet could be used as a weapon (ridiculous). Or whose meters are under lock and key. Or teachers refusing to get even basic training. Or being denied to participate in activities or go on field trips. (Read this great story from the Chicago Tribune.)
We know a family who moved to a small town just south of ours because they have a full-time school nurse. Our district has one nurse for about 10 grade schools.
It is difficult to be positive. And even more disheartening when my daughter’s only safe haven these past nine months is no longer.
If she can’t even get a drink of water in preschool, what will she be denied next year in elementary school?
Update: After talking with my daughter more and with the substitute teacher this morning, I figure the story is somewhere in the middle of what each said. The teacher said that Q never said she was thirsty or was going to her cubby for her drink. I am still angry that this teacher implied that my child was lying…she said “children at this age tend to make up stories to benefit themselves.” I can say my child does not do this and has never had a reason to. I chalk a lot of my daughter’s emotional state to being away from school for almost two weeks and not wanting to return and to her high blood sugar. Hopefully today will be a better day for her. But the fact that it is difficult for diabetic children to get the care they need away from home remains.