Monthly Archives: July 2012

Diabetes Camp – September 2011

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From the time Lyla was diagnosed, we heard about diabetes camp and how amazing it is. For Lyla’s age group, they do a family camp for three days over a weekend. Initially I was going to do it and then started to have second thoughts as the summer progressed and I imagined how difficult it would be to camp with two babies. About a week before the last family camp, we got a postcard in the mail saying we could sign up for Saturday only of the family camp week. Greg and I talked about it and decided it might be a good thing for us to do.

As the day approached, I started to have some serious second-thoughts about it. The camp activities were scheduled from 9 a.m.-9 p.m. and were in Ogden canyon. I started realizing that it would take us nearly two hours to get there and two hours home. The kids would probably be hellions and it would take a tremendous amount of planning. I had everything packed the night before and still was asking Greg if we really should go. The sign up fee was only about $30, so I didn’t feel like we’d be out that much if we decided not to go. Greg kept insisting, so I complied.

The day started early. We were out of the house by about 7 or 7:30. The first directions we had were wrong and it took us much longer to find the campsite than we had planned. We finally got there around 9:30. Immediately an older woman came up to us and tried to take the kids so we could go to the parents class that was being held. Surprisingly, Nick went with her. Lyla had fallen asleep in the car and wasn’t happy. I finally decided we needed to check her blood sugar and suggested that we run to the car and get her kit. The camp volunteers quickly told me they had supplies right there and could check her. They were great with her. The kids were working on crafts and playing on a playground. Lyla would have none of it, so we decided to take her with us to class. She was noisy, though, so Greg went back and did crafts with her. She loved the crafts.

The day was absolutely wonderful. We had several class sessions with parents, had lunch on a beach and were able to play on the beach for a couple of hours, and then the kids had a carnival that night. Even better, we were able to meet other families who have young diabetics. We really saw what a pump looks like and how the parents manage it on young children. All of the teenage volunteers were diabetics and it was good to see so many happy, healthy diabetic children. The kids warmed up to everyone pretty quickly and really enjoyed the time there. It was kind of an odd, but nice, experience for us to allow strangers to watch our children. We so rarely get away anymore, that it was nice to have someone else with them for a while.

Here is Lyla with Amanda, one of the kids’ favorite camp counselors:

 

 Here is Nick:
Lyla working on one of her many crafts:

A family shot before we left:

 

We got home after 11. Luckily both kids were asleep before we got out of the canyon. It was a long day, but definitely worthwhile. The next morning, everyone was sleepy and tired:

One of the best parts of diabetes camp — SWAG — The doctors who run the camp gave us various diabetes supplies. I started trading with other mothers who used different types of insulin or supplies than we did. It was like trading cards, but with high value items. We came home with almost a year supply of insulin. I was so excited about that. I have wanted to have extra supplies, but insurance won’t pay for insulin more than once a month. A month’s worth of insulin costs us about $100 with insurance (about $700 without). Overall it was well-worth our measly camp fee and gas money!
Here is our diabetes SWAG:

Six Months Later – August 14, 2011

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Today marks six months from Lyla’s diagnosis. I have resolved that I need to be better about documenting our struggles and successes with diabetes. Someday, Lyla may be very interested to read about all of this. Or, heaven forbid, she may even have a diabetic child of her own and find it comforting.
Friends and family frequently ask me how Lyla is doing. I don’t really have a good answer for that question. In many ways, she is a typical two-year-old – she loves going to the park and playing with her friends and hates taking naps and sitting on the naughty spot. When it comes to her diabetes, how she is doing fluctuates by the day, hour and minute. We rarely have “perfect” days, where her blood glucose levels stay in range all day. Yesterday was actually one of the better days we have had. We had only two readings out of normal and they were off by only 20 or so. Earlier this week, however, we had several days where she bounced back and forth between being too low and too high. It’s like a nauseating carnival ride that just won’t stop. If I remember right, she had a reading over 500 and a reading of 32 (her new lowest ever) in the same day (she is supposed to be between 100-200).
Lyla knows she has diabetes and that it means she gets shots and checks her blood. She has not yet realized, though, that not everyone has diabetes. Last week she was playing with her little friend Kambree when she started to get really whiny. She had been low only a little while earlier and I was afraid she had dropped again. Kambree watched intently as I checked Lyla’s blood and Lyla said to Kambree, “You check your blood at your house?” as if the behavior was a typical part of a two-year-old life. It made me sad for her. One day she is going to realize that other kids don’t have to have shots and blood checks. It’s going to be a hard time for her when that happens.
Lyla rarely complains when we check her blood. Sometimes she fights us because she wants to do it herself. She is fiercely independent. She flinches and whines when we give her shots, unless the shot is followed by a treat of some kind. We want her to be as normal as possible, so when we go to social events, we will give her the option of having a treat and a shot, or no treat and no shot. She ALWAYS chooses a treat and a shot. Those shots are the easiest to give. She is still getting 4-5 shots a day, with Lantus at dinner.
Even as a health professor, I don’t think I really understood diabetes. I think I knew that diabetics took insulin in proportion to what they ate, but I had no idea the extent of it. We are still trying to figure out the intricacies of Lyla’s disease. It is certainly not easy. If she is active, it drops her blood sugar; but if she is excited, it raises her blood sugar. There are certain foods (pop-tarts, Café Rio candies) that spike her blood sugar levels, regardless of insulin given. Other foods seem to have little effect. From my contact with other mothers of diabetic children, I have learned that diabetes has a mind of its own, with no rhyme or reason.
At every meal we have to check Lyla’s blood sugar and then guesstimate how much she will eat so we can dose her with insulin according to what she is having. We have a carbohydrate to insulin ratio that actually changes each meal. Currently, she needs more insulin in the morning so her ratio is around 15 grams of carbohydrate for each unit of insulin. At lunch we are around 30:1 and at dinner 25:1. The ratios are constantly changing. Sometimes we adjust them on our own and sometimes we call the nurse line and they tell us how to change them. We tinker around with them until we find something that works. Then, within a few weeks we have to totally change it because her body is responding differently.
We lovingly joke that Lyla is our expensive child. Our out-of-pocket expense for her prescriptions each month is around $200 . . . and we have good insurance. I can’t imagine what we would do without insurance. She sees a pediatric endocrinologist at Primary Children’s every few months. That bill is usually around $900 for a visit, but luckily we pay only 10% of that.
Lyla’s immune system seems to be weaker than it used to be, as she catches everything and anything. It seems like she is always sick. When she is sick we have to check her ketone levels as well as her blood sugar. If her ketones get too high, she is hospitalized. We haven’t gotten to that point yet, though our doctor told us to prepare ourselves because it will happen. Every time we check her ketones, it costs us about $2 out of pocket. When she is sick we have to check them several times a day.
With an immune system that is somewhat compromised, we have been advised to keep Lyla away from big crowds and lots of other children. I think I mentioned in an earlier post that our doctor told us to keep her out of nursery. We let her play with friends, and try to be as normal as possible, but also try to keep her away from others as much as we can. Aside from our time as nursery workers in our old Orem branch, Lyla has been to nursery twice in her life, which is also the number of times we have made it to all three hours of church since her diagnosis.
I do worry that without normal experiences like play groups and nursery class, that Lyla’s social development may suffer. Before her diagnosis, she was my friendly, extroverted little girl. She liked everyone and was afraid of nothing. I don’t know how much of her current behavior is age-related and how much is a result of an environment where she is always with Mom, Dad, or Grandma. Recently, though, she has been very fearful of new people. She tells me she is scared when people come over who she doesn’t know. She is clingy and shy.
The scariest part of type 1 diabetes is her blood sugar getting so low that she seizures or goes into diabetic shock. We have yet to have that happen, though I think it is probably inevitable that it will happen at some point. During the day, it is rather obvious when she falls low. She gets super whiny and wants to be held. More often than not, though, she falls low when she is sleeping. We try to have dinner early so we can dose her with insulin at 5. Insulin takes 3 hours to fully work. If we can have dinner by 5, we can check her at 8 to see if we need any correction. If she is over 300 at bedtime, she has to have a small correction dose. Usually even a half a unit can make her dramatically fall at bedtime. She will sometimes drop from 300+ to 50 with a half a unit of insulin. Anyway, back to my point – we give her dinner at 5, so we can check her at 8, so we can give her more insulin if necessary and it can be out of her system by 11. That is the ideal, so we can go to bed at a decent hour. It is worthless to go to bed while there is insulin in her system, because we have to check her so often. But, like I said, that is the ideal. It doesn’t always happen. When her blood sugar is low or she has insulin in her system, either Greg or I will stay up until she is stabilized. This can sometimes be hours and is a frustrating process.
As an example, last Wednesday Lyla had a bad day. I was at work late and Lyla’s blood sugar was over 400 when Greg was going to put her to bed. He gave her a correction dose and let her fall asleep on the couch so he could test her blood more easily (she lets us test her in her sleep without flinching). I got home around 11 and Lyla’s blood sugar had fallen to 32. We gave her a little juice in a sippy cup, which she will drink without waking. Then we have to test her every 15 minutes to ensure that she is going up, until she reaches 100. At 11:15 she was at 51, 11:30 at 56, 11:45 at 58, 12 at 59, 12:15 at 56. We gave Lyla sips of apple juice at least four or five times and she did not seem to respond to it. I finally went to bed at around 12:30 and Greg came to bed around 1:30 when she got above 100. I wish I could say nights like this are rare.
Even if she is stable, we typically set our alarm for 2 or 3 a.m. to check her blood sugar. Some nights her sugars rise as she sleeps and sometimes they dramatically fall. Usually she is okay and the check was unwarranted, but we have had nights where she is dangerously low and we are glad we checked. We really miss sleeping through the night.
Maybe one day when my work life is less busy, I will conduct a research study on the coping strategies of parents of type 1 diabetics. It has been interesting for me to assess my own coping. For the most part, I think Greg and I do okay. We worry constantly. I never feel like I can really “get away”. If I am away from her or she is asleep, I am worrying. It is almost an obsessive, compulsive worry in the back of my mind. I am naturally a worrier (I get it from my mother) and can usually come up with the worst possible scenario. Lyla’s diagnosis really threw me off though. Up until that point, I worried about horrible diseases or conditions that were never actualized. When Lyla started asking for lots of water just before her diagnosis, I worried that it was diabetes, but then reassured myself that it is never as serious as I imagine it to be. Only this time, it was. It totally messed with my worry sensor. I don’t know if that makes any sense, but I can’t think of a better way to describe it.
In addition to worrying, it is high stress. Everywhere we go, everything we do, we have to keep diabetes on our minds. When she gets whiny at the store, I have to check her blood. We can’t let her eat at restaurants unless I first can find nutrition information and figure out a carb count. It is stressful to dose her and then hope she will eat what we thought she would. Typically her place at the table is a messy concoction of food scraps. It is nearly impossible to figure out exactly how much she ate.
One of the hardest things for me in relation to Lyla’s diabetes is feeling trapped. I say that in the nicest way possible. I love my children and would do anything for them. But, sometimes the selfish side of me really wishes that I could have a break from it all. I have a two-year-old and an almost one-year-old – they are a lot of work without diabetes! It would be nice to get away once in a while, for an evening, a weekend, a vacation, anything really. But, we can’t leave Lyla during a meal time. It is too much to expect a baby-sitter can check her blood, count carbohydrates, give her a shot, watch her for blood sugar changes, know what to do if she gets too high or low . . . oh, and take care of Nick too. My mom watches the kids while I work. I’ve changed my schedule this fall so I will be home during mealtimes. The biggest problem gets to be when I have meetings or other commitments that come up during the week while Greg is in class. It is nearly impossible to find a baby-sitter for our kids. Most of our friends have kids of their own, so taking two little kids and managing Lyla isn’t something I would be willing to ask of them. Greg and I could probably count on one hand the number of times we have been out to dinner as just the two of us since Lyla was diagnosed. When we are able to go, it is usually at an off hour – late lunch or early dinner, so we can be home to get meals for the kids.
I think that pretty much sums up the hardest part for me – the job is very stressful and I worry constantly. Yet, I don’t feel like I can ever just get away from it all. As bad as it sounds, sometimes I do feel really trapped, like I would like to get away and relax, but even when I am away, the worry is constant. I am trying to accept the fact that my life may always be like this. I imagine I will be worrying about Lyla and her diabetes until the day I die.
Even though it has been a hard six months, and will likely be a challenge that we will face for the rest of our lives, I am grateful that we have our little Lyla. When we checked into Primary Children’s six months ago, the pediatric endocrinologist told us that a hundred years ago the diagnosis of type 1 diabetes was terminal, with six months to live. It is humbling to know that without modern medicine our baby would likely be dead by now. It is a matter of life and death for her, so no sacrifice is too big. We would (and will) do anything we need to do to keep her as healthy and happy as possible through the coming years. I thought Greg put it so well at dinner last night – “We hate diabetes, but we love insulin.” Yes, we love that synthetic insulin allows our baby girl to live, and to live a mostly normal life. We will forever be grateful for that. We couldn’t imagine our life without our little Lyla. She is a bright, shining star in our world, full of personality, wit, and charm. I have no doubt that she will be influential in the lives of many.

Breakfast with Rufus – April 16, 2011

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The Juvenile Diabetes Research Foundation of Utah has an event every year around Easter time called “Breakfast with Rufus”. Obviously this was our first year to attend the event.

Here are the kids with Rufus, the bear with diabetes:

The Easter Bunny was there ready for pictures. Lyla was very wary at first and didn’t want to have anything to do with him. Then she started to warm up and kept waving at him from a distance. She has been taking about him ever since.
Feeling left out because he doesn’t have diabetes, Nicolas decided to take a nap on Greg:
Lyla had to scope out the field:

 

Then, while we waited for the egg hunt to start, we went over and saw the ducks. Lyla kept chasing them saying “Come back, ducks, come back!”

 

 Finally the egg hunt started. It lasted about thirty seconds before all the eggs were gone. Luckily it only took Lyla three seconds to figure out what she was supposed to do. She loved the hunt.

 

At the event there was also a very nice vendor fair where Lyla got a new doll and an accessory for Rufus. She chose a little picnic basket for him. We had a good time at the event. I think we’ll be going back again next year!

Honeymooning – March 6, 2011

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Lyla has officially hit the honeymoon phase of diabetes. I’m not sure who named this phase. He/she must have a pretty crappy marriage though. For us, honeymooning has not been particularly fun.

Here’s the long and short of it — The islet cells in the pancreas make insulin. For some unknown reason, Lyla’s immune system started fighting off the islet cells. As they started to die, it became harder and harder for the remaining islet cells to regulate her blood sugar. When there were only a few left, they became overworked and under-appreciated so they decided to go on strike. Once the strike began, we started to see the signs and symptoms of diabetes. The few remaining islet cells spent a couple of weeks on vacation (doesn’t that sound nice?!?), having insulin injected to keep blood sugar levels under control. Once they felt rested, they decided to come back to work and contribute to the process. Unfortunately, they aren’t the best workers. They are sporadic and unpredictable.

So, what does this mean for us? It means Lyla’s blood sugars are wild and crazy and we have had almost daily “crashes,” where her body is making insulin and we are injecting it so she goes way too low. The first such crash happened last Saturday. I had gone running with my sister while Greg fed Lyla breakfast and gave her insulin. When I got home, he went ice climbing. Lyla had been pretty good throughout the morning, but her behavior deteriorated fast. She didn’t want to do anything and then she started crying for no apparent reason and wanted to lay on my shoulder. I checked her blood and she was at about 60, which is much too low (ideally she should be 100-200). Truthfully, I just assumed that her blood sugar was low because Greg had miscounted her breakfast carbs and given her too much insulin. It’s not that I don’t trust Greg, but more that I am very comfortable with the nutrition side of diabetes because of my professional training. So, I unfairly attributed it to Greg’s incompetence. I was wrong. I am sorry.

She crashed again on Sunday and twice more on Monday. I talked to the doctor and we slowly started decreasing the insulin we were giving her. On Tuesday morning she was at 270 as I was leaving for work. I gave her a half unit (which is a tiny amount) with breakfast. My mom called less than two hours later to say that she was down to 60 again. I could continue dictating the rest of the week, but really it is more of the same. She has been chronically low and we have been alternating between giving her fruit snacks to get it higher, and giving her less insulin. At this point she hasn’t had any insulin since Friday morning (2 days now). Her body seems to be processing the sugars just fine. It takes a little longer, meaning her blood sugar is high for longer, and she still gets too low sometimes.

Our doctor tells us the honeymoon period can last days, weeks, or months. Everything I have read has warned us that it will end and that she really does have diabetes, even though it doesn’t seem like it right now. In some ways it is really nice not to be counting carbs and giving injections. At the same time, it has made me even more nervous to leave her because she is so variable and her levels have been so wild. So, wildly unpredictable and hugely stressful . . . I’m glad our honeymoon wasn’t like that!

Hospital Adventure – Day Three, February 16, 2011

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My morning started by about 7:30 in the hospital. Truthfully, this is actually “sleeping in” for us, since we are usually up by 5 or 6. However, the extreme emotion and sleep deprivation over the last few days made 7:30 feel really early.

I awoke to the resident endocrinologist examining Lyla. I chatted with her for a few minutes. She was actually the only one to ask if we had any family members with endocrine problems. Most of the doctors and nurses had asked if we had diabetes in the family. She asked more broadly, which is interesting because my sister’s boy needs growth hormone shots. We talked about that for a minute. She cited that it was likely unrelated, but still interesting that two cousins would need the same specialists. Dr. Lindsay came in to talk to us again. He seems to be very calm and relaxed. He talked to us about her previous day’s sugar levels and about the modifications he was going to make to our plan going home.

Next, the nurse arrived. Truthfully, she was my least favorite of all the nurses. Yet, I seem to remember her name (Gretchen) while I have totally forgotten the rest (Greg tells me their names were Jessica and Angelina). Anyway, Gretchen made a little list on our white board of everything we needed to do that day. They had originally said we would be there until 5 or 6 that day. Then, the night before they said that we could probably leave around noon. I had considered going home and spending the night at our house with Nick, but figured if we were leaving by noon then the drive was not worth it. As Gretchen was making the list, she speculated that it would be dinnertime before we could leave. We were both disappointed. At this point, Lyla was likely one of the healthiest children in the hospital. We caught the diabetes early enough that she didn’t have ketones in her urine and hadn’t gone into diabetic ketoacidosis. We felt comfortable enough with the sugar testing and insulin shots. In fact, we felt she would do better at home where she would eat normally and nap. Plus, we both badly needed a shower!

Lyla got breakfast and watched the “Price Is Right” while I pumped. Gretchen came in several times while I was pumping and seemed to linger some. It was really quite awkward. During our time in the hospital, when the nurses or staff came in while I was pumping, most of them left quickly. Not Gretchen. She even asked if we wanted to start the education classes, to which I replied that I would like to finish pumping and get my shirt on first.

A different nurse did our education. We talked about hypoglycemia and hyperglycemia. Again, nothing too difficult considering my background. Lyla and Greg colored with her new crayons while we learned. Once the nurse left, we were eager to continue with the teaching so we could get out of there. It turned out that the social worker was not coming. Then the pharmacy reported back that they couldn’t teach us insulin pens on a kid so little. The only things left on the list were more nurse education and the Juvenile Diabetes Research Foundation. They weren’t sure if the JDRF was coming though. We ordered Lyla lunch so it would be there before she got too hungry (sometimes it took up to an hour to get her food). Then Greg decided to take Lyla for a walk so I could start cleaning up and packing the room. I walked out with them for a minute and met Gretchen in the hallway. She informed me that the social worker and pharmacist were not coming and the resident was working on our discharge papers. I was thrilled. She also said, however, that she had sent our medication down to the pharmacy. If we wanted Lyla to eat lunch at the hospital, we’d have to go get the medication. I thought it was pretty flighty of her.

I met up with Greg and Lyla on their walk. Lyla and I continued walking while Greg went into the pharmacy. We got upstairs and saw that Lyla’s lunch was waiting. Greg met us up there a few minutes later. Then we waited for Gretchen for a very long time. We were ready to test Lyla’s blood and let her eat, but at the hospital, they had to check her blood with their monitor as well. Nobody was able to find Gretchen, so we just sat and looked at Lyla’s food. You can imagine how impatient a one-year-old can get when she is hungry and looking at her food.

Finally the tech arrived to do the blood sugar test. We told her that we had struggled to get enough blood for both monitors and had pricked her twice with many readings in order to make it work. We were really hoping to get enough blood so we didn’t have to poke twice. The tech reassured us that we would make it happen. We got Lyla’s finger pricked and the tech put the blood on the strip, only to realize that she had forgotten to scan Lyla’s hospital badge first. We had to do a second poke. Greg was ticked. Lyla was happy just to finally get her lunch and watch Barney. The tech felt so bad that she brought Lyla a necklace and bracelet set, along with some Play-Doh, and found her a new Barney movie to watch.

Lyla slowly ate her lunch. Greg and I were starving, but figured that we could grab something to eat on the way home. Greg even started loading bags into the car. Lyla finished and we were ready for insulin. Again, we struggled to find Gretchen. We waited for quite a while again before we could find Gretchen and give Lyla her shot. We wanted to leave the hospital, but Gretchen said we had one more lesson to do with the educator and needed to do our discharge paperwork. Again, we waited for the educator to become free. Finally she came in and we rushed through the paperwork and lesson. Finally, we were allowed to leave. The tech walked us out to our car to ensure that we were putting Lyla in a carseat.

We left at about 2:30, almost exactly 48 hours after our adventure had begun. Lyla was asleep before we got to Foothill Blvd. We stopped to grab a bite to eat at a drive-thru and then headed home. I was eager to see my baby, but we decided we needed to shower first because Primary Children’s was full of kids with RSV. We got cleaned off and then woke Lyla up. She was not happy to be awake. Finally we went to my parents to get our little baby. He gave us huge grins and was excited to see us. My parents bought us dinner from Cafe Rio and Lyla’s favorite cousin, Ally, came down to visit. Lyla had gotten an old, broken poker from the hospital and pretended to give Ally pokes with it. Nicolas started to fuss, so we finally loaded up to get the kids home and to bed.

We were happy to finally be home with the four of us back together again. Greg started bathing Nicolas. I started to deal with a messy, messy house. We had bags from the hospital, Nick’s bags, and the mess of having chaotically packed. We even had dishes in our sink from Monday afternoon. I began the long process of re-claiming the house when the power went out. The wind outside was horrible as a storm was coming in. I expected the power to return quickly. It did not. I will admit that for the first time during the week, I murmured a little. “Really, God, Are you serious?” I guess He was. So, we sat around with a messy house, trying to decide whether to get the kids in bed in the dark. We finally got Nick down and then got Lyla in her pajamas. She badly needed a bath, but we were worried she’d be cold if the power didn’t come back on and she had wet hair.

I’m sure it was quite the scene to watch Greg and I fumble with the flashlight (we only own one) and try to find Lyla’s supplies to check her blood sugar. As luck would have it, it came back with a value that left us clueless of what to do. It was at 248. Normally, between 200-250, she gets a 1/2 dose of insulin, but those corrections are divided in half at bedtime. Did Dr. Lindsay really want us to give her a 1/4 of a unit of insulin? I know you all cannot see the shot needles, but just trust me that it is a really, really small amount. Further, Lyla is supposed to have a “free” 15 gram carbohydrate snack at bedtime. Was this still the case if her blood sugar was high? We finally called our good friend Laurel, who is an MD, to get some advice (no 1/4 unit, no snack — Dr. Lindsay later told us the same thing. Good job, Laurel!). We gave Lyla a non-carbohydrate snack and as we were finishing, the lights came back on. I was very relieved. I heard the next morning that our neighborhood was the first in Lehi to get lights back and other areas were out until 11 or 1. Maybe God did have some sympathy for me?

I pumped while Greg watched TV and played on his computer. It was the first “normal” moment for us in the week. We were both exhausted and headed to bed fairly early. We set our alarm for 2 a.m. so we could check Lyla’s blood sugar. When she was seven weeks old, we were setting our alarms to get up and feed her so she could gain weight. Here we are again, setting alarms for the middle of the night to attend to her needs. When she asks me why I am tired when she gets older, I will tell her it is because of her.

Hospital Adventure – Day Two, February 15, 2011

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Our first full day at the hospital began early, probably around 7, when the nurses and doctors started coming in. Dr. Lindsay was one of the first to come in. I was still laying in the bed next to Lyla (Greg was on the pull-out chair/bed). I don’t remember much of what he and I talked about, but I did ask him if Lyla’s ridiculous amounts of energy had anything to do with her high blood sugar. He laughed and said, “No, if anything she has been more fatigued lately.” I don’t think that is what I wanted to hear!

Once I was up, it took a few minutes to get a menu from the food service people and get Lyla’s breakfast ordered. They had a toddler menu and a carb counting menu, but not a toddler carb counting menu. I guess it just shows how unique she really is. There are not very many toddlers with type one diabetes. She was overly hungry by the time the food came. Her blood sugar was around 80, which is a little bit low. She ate some yogurt, fruit loops, banana, and a bite or two of scrambled eggs. After her meal, the nurses gave her an insulin shot. She did not appreciate it.

We met with the nurse educator after breakfast. As an educator, I was impressed by the structured lessons and teaching. We learned more about diabetes and insulin. Lyla looked at some books and pushed the buttons on the bed while we met. Then a volunteer from the gift shop came up with a balloon and book from Grammy Jackson. Lyla loved the balloon and entertained herself chasing after it for the better part of the morning.

Next we met with the diabetes social worker. I’m not really sure what the point of that visit was. She asked us some questions and talked to Greg about her travels around the world. After she left, we checked Lyla’s blood sugar before she had some lunch. It came back at 450, which is really high. She started eating her spaghettios and peanut butter and jelly sandwiches. She ate and ate. Having had a couple of doses of insulin already, she was starting to get her appetite back. I think she is eating to gain back the weight that she has lost over the last couple of months. Greg ran to get us some lunch while Lyla was eating. I met with the pharmacist to go over all of Lyla’s supplies and medication. Truthfully, it was a bit overwhelming. We have ketone strips that we have to use to test her urine if her blood sugar is too high, a glucagon kit for when her blood sugar goes so low that she passes out, two types of insulin, needles, glucose test strips . . . I’m sure I am forgetting something.

Greg got back from Carl’s Jr about the time Lyla was done eating. Of course, though, Lyla decided she wanted some of our food. This is going to be one of our challenges with Lyla’s diabetes. She asks for bites any time we are eating something. Truthfully, we usually give them to her. She’s gotten to the point where she expects it. Finally, after she had eaten her lunch, and some of ours, it was time to give her another insulin shot. The nurses had been training us in the morning on how to give the shots. We had to give her insulin to compensate for the high blood sugar and to counter the lunch. I know that I got the needle ready. I can’t remember which of us gave her that first shot. I think it was Greg.

After lunch, the hospital dietitian came by to teach us about carb counting. Since I teach nutrition at UVU, a lot of the information was a little too basic. However, this carb counting is totally different from what I am used to. I know calorie counting from when I teach weight management. Carbs are a different beast. It seems a little counter-intuitive for me to not be counting things like butter and fat. The dietitian actually knew several people in the health promotion and education department at the U. We talked about some of the people we knew there. Once the dietitian left, the hospital representative came in to tell us about parent resources at the hospital. We actually didn’t use any of those — except the free continental breakfast, of course.

Lyla should have been taking a nap, but there was no way that girl was going to go to sleep with all the excitement. She really struggles to sleep outside of her crib. I can think of only two times in her life that she has fallen asleep somewhere else in the house. We decided that the nap just wasn’t going to happen, so Greg took her for a walk outside. She was all too happy to be out of her room. She wouldn’t hold Greg’s hand at all, and once they got outside all she wanted to do was run. It was windy out there. Greg had to keep picking her up and putting her back in the grassy areas to keep her from the cars in the busy parking lot, which is of course where she wanted to run. Just being outside made her incredibly happy though. It was actually a really nice day and I lamented that we couldn’t be at home enjoying it at the park. Greg and Lyla were still outside when Tami’s family came to visit. Lyla was so excited to see them, she ran across the parking lot to get to them the instant she saw them, with Greg on her tail, looking for cars and ready to catch the bounding one-year-old should she have fallen. They brought Lyla some stickers, coloring books, crayons and fingerpaints. Plus, they brought her some toys and books from their house. The things from Tami kept Lyla entertained for the remainder of her visit in the hospital.

As soon as Tami’s family left, Lyla crawled up on to Greg and fell asleep. She was totally exhausted after a night of poor sleep, followed by no nap. She had only slept for about five minutes when her dinner came and it was time to check her blood again. This time it was at 50, which is way too low. We tried to get her to eat her dinner, but she completely melted on us. Twice before the diagnosis, we had days where she had done this at lunch. She gets too hungry and then she just starts crying. We try to get her to eat and she refuses. She even spits food out if we try to shove it in her mouth. Usually after much effort, we are able to get something in. Once she starts eating, she shovels food as fast as she possibly can. As she did this in the hospital, we realized that this behavior is a result of low blood sugar. We had thought she was just too hungry, when in fact there was a bigger problem all along. That night at the hospital, we finally got her to eat some fruit snacks, then she was interested in eating dinner. Of course, it helped the we found a Barney video to watch while we ate.

Greg and I decided to take shifts eating in the cafeteria so our little bird would not want bites of our food. Since we are counting every morsel, it is really challenging to let her have bites. Greg went down to the cafeteria and I stayed with Lyla. She ate and watched Barney while I caught up on some work emails.

We gave Lyla her next round of shots just as Greg was returning. A few minutes later, our friend/brother, Dickson came by to visit. Lyla was trying out her new fingerpaints while Dickson was there. She loved them, but was using huge globs of paint. I finally had enough and rinsed her off and let her play with the other toys. I ran down to the cafeteria to get some food at that point. Even though the hospital is decorated so colorfully, it is really quite a depressing place to be. There were a lot of adults in the cafeteria. I don’t think any of them looked well-rested or happy. There is so much sadness in that hospital. I heard the people behind me in line talking about a delayed surgery because of a seizure. It made me really grateful that Lyla “just” has diabetes.

I returned to the room as Greg and Lyla were skyping with Greg and Diana. Then our friend David stopped by with some snacks for us. The nurses also came in to do a bedtime check of Lyla. We got her in her pajamas and ready for bed. I was hoping that because she had slept so little in the hospital, that she would go to sleep quickly and be out all night. I was so wrong. She played around for several hours. At one point, I think it was around 11, I took her for a walk around the hospital. She gained quite a bit of attention from the nurses and staff. Here was this tiny little girl in her pajamas, happily skipping through the halls of the hospital at 11 p.m. She walked down and back up all three flights of stairs. Finally, I decided that I had enough and she was going to sleep. I ended up rocking her for a long time and she finally crashed around midnight. Greg and I stayed up talking for a few minutes about how surreal the whole experience had been. We finally went to sleep at around 12:30. The nurses came in again at 2 to check Lyla’s blood. She cried for a minute and I rocked her back to sleep again. She stayed soundly asleep until probably 8 or 8:30 the next morning. I, unfortunately, did not. The doctors and nurses started coming in at around 7, so I decided it was time to get up then.