Welcome to the Adventures of Injectagirl!

Our daughter was diagnosed as Type 1 on May 16, 2016. She is the only Type 1 Diabetic child in about a 50 mile radius of our home. As her mom, I began to scour the internet for resources and encouraging things to help her not to feel alone. I discovered that most things on the internet were geared toward parents/adults. Then Diabetes Awareness Month came around, and Katie was more “out there” on the internet, answering questions and things. As part of celebrating November 14, her older sister did a special superhero makeup look for her…and Injectagirl was born.  We began a YouTube channel, and today we have begun our blog.

If you have questions you’d like to ask, or videos/demonstrations you’d like to see, let us know in the comments!  You can see our YouTube page here, and the Facebook page here.  We are glad you are joining us!

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Getting Support for your T1D Child

Today Katie did a new video for her YouTube Channel on the topic of “How to Help Your T1D Friend”.

Katie was the only Type 1 kiddo in our valley for over a year. Just recently another family has moved in with a smaller T1D child. It’s easy to feel alone. One thing which has helped Katie is the Snail Mail program through Beyond Type 1. They pair kids up with a pen pal, and provide a super cute stationery kit for free!

Diabetes Camps can also be a big encouragement for these kids. We have not been able to attend one yet.

One of the reasons we started the YouTube channel was so we could be an encouragement to other T1D families who may not have a strong network locally.

Education is important as well. Last year in Katie’s Girl Scout troop, we did a presentation on Type 1 Diabetes, including handouts and demonstrations. Just getting accurate information into people’s hands can help so much in changing the stigma surrounding this disease.

We do have a Facebook support group, which includes links to blog posts, videos, and other helpful info.  I also follow several groups for support as a parent, like T1D Mod Squad

and Christian Type 1 Diabetics and Support Group. There are numerous other ones I follow which are specific to Dexcom, Pay It Forward, etc. Once Katie is old enough we plan to set up a group for teens called Teen 1D. Keep an eye out!

Sheesh! Those Shpikes!

prebolusWe’ve had an awful time with carb spikes. Dealing with 300+ after a Chinese meal just sort of pushed me over the edge. Even after giving a correction dose while she was sleeping, I could not seem to shake that trend. I had tried everything I knew, so I asked in one of my mom’s support groups for some strategies to counteract this.

Several suggested a pre-bolus (giving insulin with a span of time between the actual injection and the meal). I had tried having Katie wait 15 minutes, and that didn’t seem to be the ticket (on that day), so I had given up. But what these ladies suggested was different.

The gist of it is, take the first two numbers in the current BG reading you have. Let’s say that prior to a meal, your meter is reading 250. So the first two numbers would be 25. Then, given the injection for the correction/carb ratio you are using and wait that many minutes before eating. So in the case, Katie would wait 25 minutes before beginning her meal. Yes, I know…not so easy to pull off if you are eating out or at a special event. But look at that line on her Dex. It was very similar since supper last night (which was Chinese leftovers!).

We are very early into this, but I’m very encouraged! She went to bed at 131, and only dropped to 80 one time. She hasn’t been higher than 167 since starting with this new protocol.

If the reading is under 100, five minutes would be the most I would probably try, depending on the direction of the arrow on her Dex.

Another mom suggested that she gives the injection and then monitors the Dex. After she sees the first drop from the insulin, she lets her kiddo have the meal.

Just some troubleshooting ideas, if you are as frustrated as I was! Give it a try and let me know how things go in the comments. I’m rooting for you!

Is She Getting Better?

breathedeepleanhardgodsloveholdsFrom time to time, I am asked this question. Sometimes folks mean well, and they just don’t know what to say; but they want to express their concern. Other times, people simply don’t understand how this disease works.

The Answers to the Question

The super short answer is, No. My short answer for those who just want to make conversation or those who don’t understand and really would rather not talk about details is, “The doctor says she’s doing well.”

The long answer is that there is no cure for Type 1 Diabetes. Not yet. When Katie has setbacks, there is such a thing as “getting better” in that we can help the bad symptoms to go away or lessen. But that’s pretty much as far as it goes for now.

What Getting Better Looks Like for Us

The positive thing here is that, after having dealt with her condition for over a year, we are “getting better” at troubleshooting. We know if her numbers are high that drinking water and physical exercise can help bring them down, in addition to insulin.  We know that if her numbers are high because of excitement, then we just need to wait it out for a little bit.

We know when Katie has a crazy drop (like yesterday when she had 53 with double down arrows) that we can’t panic and do a truckload of carbs. Take small measures, pray and monitor. So in that case, she had a pack of fruit snacks.

When her Dex updated after 5 minutes she still had double down and 51. She chugged a juice bag. By this stage she’s weak and not very coherent to listen to reason, and her body is screaming at her that she needs food.  If left on her own, she’d have cleared the fridge. You T1D mamas know how that is.  I told her we needed to do a finger poke (which is real-time numbers and the most accurate…the Dex has a 10-minute lag on it and the readings can sometimes be squirrely). She was 69. We waited another 5 minutes. 78.

After another Dex check, she was 103 with a slanting up arrow, so I let her have a “free” snack (which in this case was hard boiled eggs). We don’t want to do that before her number indicates that she’s rallying because protein and/or fat can slow down carb absorption and we really wanted those fruit snacks and juice to kick in.

Toward evening, Katie’s numbers were still wanting to drop, but it was a slow drop. So I treated multiple times before bed with a few Ritz cheese crackers and a little Fairlife milk, and then finally with one Gogurt. Her numbers were great the rest of the night and she woke up with a very nice 98. These forms of protein with carbs help her number to rise without spiking.

We get better at strategizing. We get better at being patient. We get better at discipline. We get better at leaning hard.

Child of My love, lean hard,
And let Me feel the pressure of your care;
I know your burden, child, I shaped it;
Balanced it in My own hand; made no proportion 
In its weight to your unaided strength,
For even as I laid it on, I said,
“I will be near, and while she leans on Me,
This burden will be Mine, not hers;
So will I keep My child within the circling arms 
Of My own love.” Here lay it down, nor fear 
To impose it on a shoulder that upholds 
The government of worlds. Yet closer come: 
You are not near enough. I would embrace your care; 
So I might feel My child reclining on My breast.
You love Me, I know. So then do not doubt;
But, loving Me, lean hard. ~May Prentiss Smith

Some New Bling!

We have been very blessed by Daniel’s Jewelry! Not long after Katie’s diagnosis, someone told us about these wonderful people. Their own daughter Kaydin was diagnosed with Type 1 Diabetes when she was about Katie’s age, and they founded the KD Foundation in support of children and families who are battling this relentless disease.

These good folks do some terrific things, not the least of which is providing free Type 1 medical alert jewelry for local kids. Katie was given an adorable bracelet with a Frozen theme last year from some very sweet friends, but she was quickly outgrowing it. So we stopped in about a month ago at the jewelry store and she got to pick out this neat necklace and super cute bracelet!

katiebling

The KD Foundation also sponsors an annual Color Rush event. My husband and Katie got to walk in it this past May. Next year we hope to have the whole family participate, and perhaps even some friends!

rush1

We are very grateful today. It is so easy to feel alone when there is not much available in the way of kids and families who really understand this journey. It’s always a bright spot in our day to talk with Kaydin (and her new puppy Saige…Katie is in love!), because she “gets it”.

Thanks, Daniel’s Jewelry!

Pump or No Pump…That Is the Question!

pumpWe had a recent one-year follow up appointment with Katie’s Endocrinologist. At this appointment we were to talk about getting Katie a pump. The theory was to get her acclimated to the Dexcom, and then add the pump 6 months later.

I will be honest, I vacillated back and forth on this one. With Katie’s growth spurts and increasing pre-puberty hormone fluctuations, I wasn’t really looking forward to adding one more factor into the mix. When you add a pump, you may add convenience but you also may add other things like the possibility of a bad set, a bad site, a bent cannula, and other mishaps. I was really preferring the fact that when I give an injection, I know what she’s getting, how much, and how well.

In the end, I thought the decision should be Katie’s, since she is the one who will be wearing it. At first she was excited about the possibility of less injections (you change a pump site about every 3 days). She decided she might like to try the Omnipod (if our insurance covers it). Then, on the ride to the doctor, she said she’d rather wait and make sure she was engaging with her current protocol (my translation) more actively before adding something else to manage.

Right now, Katie can count carbs and figure out how much insulin to give. She does most of her injections, but periodically gets maxed out with that and wants me to do it all. Figuring out corrections for high or low numbers is something she’s not comfortable with yet.

I’m in total agreement with her decision. I’d rather see a little more maturity and proactive behavior on her part before adding another element to our lives. So, we’ll wait.

What has been your experience? Do you use a pump? Which do you prefer? Share the pros and cons as you see them, in the comments below!

Ups and Downs (and more Ups and Downs)

diabetes learning curve

This.

I made this graphic not long after Katie’s diagnosis. Diabetes is not something that you necessarily “fix”. You manage it. You try to do it responsibly. But if there is one thing I’ve learned in the past year, it is that this disease is relentless and unpredictable.

You may have a very nice day, with numbers in range. Tomorrow you decide to try it again, with all the same meals and dosing. But today, diabetes has forgotten yesterday’s smooth sailing.

There are countless factors that can cause wonky numbers, for even the most diligent parents. You might have a great carb ratio going for you, and your Lantus dosage is spot-on. But I’ve (part way) jokingly said that any one of these factors (or a combination thereof) can throw a wrench in the diligence:

  • Hormone fluctuations
  • Growth spurts
  • Emotional agitation (happy, sad, angry, excited, anticipation…)
  • Cold temps
  • Hot temps
  • Exercise
  • the combination of the foods eaten
  • the order in which foods are eaten
  • the amount of time in advance that an insulin dosage is given before a meal
  • Stress
  • Lack of exercise

And then my list becomes a little snarky:

  • Breathing
  • Blinking
  • Thinking about food
  • Dreaming about food
  • Sitting
  • Standing
  • Not sitting
  • Not standing

You get the idea.

At our Endo appointment last week, I told our doctor that I’ve finally resigned myself to the fact that this is play-by-play. You do your best from hour to hour, moment to moment. Use the tools you have and the knowledge you’ve acquired. When things seem beyond your comprehension, ask. And bear in mind that the experts may just be winging it in the advice they give you as well.

In the end, I remember that our God is “El Roi”, which means “the God who sees”. He looks beyond all the circumstances and tangible things my eyes can discern.

O Lord, thou hast searched me, and known me. Thou knowest my downsitting and mine uprising, thou understandest my thought afar off. Thou compassest my path and my lying down, and art acquainted with all my ways. For there is not a word in my tongue, but, lo, O Lord, thou knowest it altogether. Thou hast beset me behind and before, and laid thine hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain unto it.  Psalm 139:1-6

He sees it all, and I put our daughter, once again, in His hands.

Why We Celebrate the Diagnosis

Some call it a “Diaversary”…celebrating each year on the day that a diagnosis was received. I’ve seen many varying opinions on this. Some parents are adamantly against it, saying it was the worst day of their lives. Others make a very big to-do, complete with cake and streamers.

May 17th was Katie’s one-year anniversary of her diagnosis. We didn’t go all-out with presents and things, but we did have a special sweet treat to celebrate. Why do we choose to positively commemorate that day?  I’ll tell you why.

Prior to Katie’s diagnosis, I watched her lose weight at a rapid pace. I thought it was because it was finally nicer outside and she was being more active. I noticed she was drinking more water. Well (I thought) that made sense, since she was clearly exercising more. Blurry vision? Maybe she’s just tired.  I had a reasonable explanation for all of these things to be happening.

Then Katie started taking water bottles to bed with her. That got my attention. She continued to lose weight, but now I’d noticed that she really wasn’t that much more active than before. The day she complained that she couldn’t see well enough to do her writing assignment for school, and fell asleep (I mean flat-out cold) during Bible time set my wheels to turning.

It sounded like juvenile diabetes. But it couldn’t be, could it? I searched the internet for lists of symptoms, and I saw our daughter in what I read.  We took her in to our little clinic, and I explained to our wonderful doctor what I’d been seeing. We did a simple test right then, which was positive. He advised us to get her to the ER, and to bypass the local hospital and drive the 3-or-so hours to Children’s Primary in Salt Lake so that her treatment would not be further delayed. That is what we did.

The diagnosis was clear. Our exhausted, sick little girl who was too fatigued to even feel the IV or routine finger pokes, was diagnosed with Type 1 Diabetes.

katiethor

Did our world come crashing down around us? I can honestly say no. Because we trust that God is always purposeful, He never makes mistakes. This diagnosis was not a black cloud for us, always looming above. It is what parted the clouds so that we could see some direction. Our daughter’s symptoms now had a name, and we could take a course of action to help her feel better, and literally to keep her alive. She was in DKA (diabetic ketoacidosis) when she was admitted. That can easily become a fatal condition if not treated. On May 17, we kept our daughter alive and were given the tools to help her have as normal and healthy a life as possible.  That is something to celebrate.

There are many parents today who have received a diagnosis of some sort that is beyond their reach. They can do nothing to help their child. There are still others whose child has a condition that is baffling all the medical professionals, and they are in a frightening holding pattern. And, tragically, there are some who received a diagnosis… too late.

We are grateful that God allowed us to have an answer. Now we look for His purposes in giving Katie a new lease on life. We want to glorify Him every day, and we celebrate each day that Katie survives as she fights this merciless and misunderstood disease. Each Diaversary means we were allowed another year. We will celebrate.

injectagirlpoke