One month of school down, Six months of Diabetes down

The kids and I have completed one month of school. We are finding a good rhythm, thanks to our kitchen being 98% complete, and to having an after-school nanny. Both kids, and I, really became accustomed to the convenience of them riding the bus home from school last year. This year school start times moved up by an hour, which moved the time they got home to an hour earlier. There is just no way for me to get home in time to get them off the bus.

There is an afterschool program at school that they could do, but honestly, they just want to get home after school, and so do I. Also, I didn’t feel super-confident with the diabetes management in the after school program, especially due to Blaine tending to run low in the afternoons. Thankfully, we have a sitter who has been getting them off the bus, taking the dogs out, getting snacks and homework going and helping with little things like the dishwasher or laundry. This has allowed me to do my errands after school or work a little later if needed. Fingers crossed that this continues to work!

Blaine is enjoying his tennis clinics and lessons. He didn’t feel ready for a match this month, but hopefully by October he will be. Aislin is getting ready for her first football game this weekend and is still doing tumble every other week. She is determined to get her front walk over soon. They are both just growing up and maturing so much. It seems to happen every school year. This past week, Aislin has gotten herself completely ready for bed and gone to sleep early, by her own choice, every night. Sometimes I miss the fact that she doesn’t ask me to read with her, or lay with her as she falls asleep.

This week we had Blaine’s endocrinologist appointment. I was holding my breath and bracing for a higher a1c. The last one was 7% (which is an average BG of 150 over the past 3 months). This time it was 6.8%! I was so excited. I know that some extreme lows may have contributed to the a1c, but I was still happy. We had our first good appointment. I’ve not been thrilled with the doctor we saw last time and was braced for feeling like crap when we left the appointment, but this was not to be the case. This appointment was great.

I can’t remember the name of the women we saw, but this is what I do remember. She smiled, she listened, she paraphrased back what we said to make sure she understood us, she took her time with us, and for the first time ever she said to both of us, “Blaine you look great! You are a healthy and strong boy that will live to be 100 with no complications!” I wanted to cry when she said this. I realize she has no idea if what she said was true. She has no idea how long he will live. But, she was going off the fact that each day we are choosing to be present and manage this blasted disease. She gave me hope that if we continue on this track there is no reason to believe that Blaine won’t have these things.

I was so encouraged. Not simply because of his numbers, but because of the human interaction from the appointment. It made me think, in my profession, do I give other parents hope? Sometimes, no, a lot of times, I am working with frustrated parents, teachers and children. I have no idea what parents think when they hear that their child has a learning disability, ADHD or autism. I hope that I am able to give the slightest bit of hope or comfort to these parents. I now realize that it can make a world of difference.

Streakers, 504 plans and Lows

Every new school year, or start of a new calendar year, I have good intentions to record our family history somehow, yet my thousands of pictures on the iphone are really the only consistent documentation. Nonetheless, I’ll give it a go again this school year.

First- to address the Streaker. I’ve worked in several different elementary schools within my county. Each building has its own vibe, made up by the neighborhoods that it serves and the faculty and staff that work there. One of my schools has a high energy atmosphere based on the components listed above. There is never a dull day at this school. We started this year off with a woman running frantically into the front office, within the first week, demanding to run back and check on a child that she knew was wounded, bleeding, and in need of her help at our school. We have many eyes on children as they enter the school. No staff saw a bleeding or wounded child enter the building. Our principal was able to contain her in his office, get a copy of her ID and keep her from leaving until the police arrived. Turns out she’s a regular. The police escorted her out of the school and allowed her to drive herself home. So, where’s the streaking part? She turned up a few days later in a swim and tennis neighborhood, streaking. To be fair it was a hot day, and all the kids were now in school…maybe she just wanted a quick dip in the pool?

The 504 plans: I have sat in many meetings these past two weeks where I was part of a committee determining 504 eligibility and getting plans in place for children at school. This is my first school year sitting at the same table, but now as a parent with a child who has health needs of his own. I’ve always advocated for children, but now I feel that role more deeply, as my child is one of the children who needs accommodations. It scares me a little as I learn of new and growing illnesses in childhood. Why are so many children being diagnosed with life-threatening allergies? Are there environmental triggers, is it because of genetically modified foods, why so many autoimmune conditions? I empathize with parents who must entrust a school system to keep their child alive during the day. This statement may seem extreme, but it’s really not. Not when you are made aware of the medical needs of so many children.

Finally, the lows. Aislin is cheering again for her third year. Her first year of cheering, I was one of the coaches. That was a tough job. I wish I could say that I enjoyed every moment of being out there with my daughter, and watching her do something that I loved doing at one time in my life. But, honestly, I was working at three different elementary schools, commuting 30 minutes each way, and had a spouse who commuted, worked and traveled, and a son who was playing baseball at the time. I did not enjoy it. It was one more thing that stressed me out. Coaching 6-7 year olds after they’ve been in school all day, and after I’ve been in meetings or putting children through batteries of psychoeducational testing, felt like herding cats.

This year, at the first practice I was approached and told that because they had so many cheerleaders, they wanted to create at third squad, rather than two big squads. They asked if I’d coach again. I hate to say no. If I can find a way to say yes to most things, I’ll say yes. I deliberated on it for an hour. I just couldn’t say yes. Aislin’s cheer practice time, twice a week for two hours, is my time with Blaine. He’s not playing football, and that was my planned time to go to the jogging track with him. I can’t leave him home for two hours and I definitely was not going to make him sit at Aislin’s practice for two hours while I coached.

I know Aislin would have loved for me to coach, but now is not the time. Sometimes with diabetes it’s hard to have set plans and I’m learning to be okay with that. Yesterday was Aislin’s practice. I came home and made sure everyone did homework, had snacks, took the dogs out and were ready to go. I had told Blaine that we would be doing the track while she practiced. I knew he wasn’t thrilled, but he was going along with it.

As soon as we got in the car he said he felt low. He checked. He was 39. This is only the second time we’ve seen a number in 30s register on his monitor. While trying to park in the madhouse of a parking lot, I was also trying to keep a close eye on Blaine to make sure he had a juice, granola bar and sugar tablets. We got Aislin safely to her practice and decided to get our groceries first. The plan had been, walk, groceries, unload groceries at home and then get Aislin. We obviously had to adjust that plan.

We went through Kroger gathering what we needed. Blaine seemed completely fine. We got everything home and quickly unloaded and then rushed back to the track. I estimated that we could still get in a mile and a half before practice ended. As we were stepping on the track to start a very fast paced walk, we decided to do a quick BG check. He was 79. Forget it. There was no way we were going to force a bunch of juice just so we could exercise. We decided to head back to the car, have some more juice and then just watch the rest of Aislin’s practice.

I know that watching a cheer practice was the last thing Blaine wanted to do, and honestly, my heart was set on getting in a few miles for my exercise. But, this is life. I know that right now I’m modeling for Blaine how to handle these things. I tried very hard not to appear frustrated or disappointed, but Blaine still apologized to me. I told him it wasn’t his fault in anyway. These things happen. We deal with them and move on. There will be other days for me to get my walks in, just as there will be other days that he’s about to go and do something important, but he’ll have to take a few minutes to get his BG back on track. We’re learning to cope, and maybe learning to be a little more flexible with life than we would have learned to be otherwise, had diabetes never entered our family.

First Week Back- Success!

The kids had their first days back at school. I now have a 3^rd and 5^th grader. We had a very smooth first week, despite having no kitchen and having to use all paper products! I just keep reminding myself that it is temporary…


Blaine -5th grade, Aislin- 3rd grade

I am working out of two elementary schools this year which is going to be great. One of my schools I’ve had for several years now and the other I had last year. Last school year I had three elementary schools and it was hectic to say the least, especially when in March Blaine was diagnosed.

This year I have two schools and I was able to pick up where I left off in May. I’m feeling very organized (at school, not home: no kitchen!) and ready to tackle this school year.

Aislin has Blaine’s 3^rd grade teacher, which she and I were both thrilled about, and Blaine seems to really like all three of his teachers this year. There is a new school nurse who has been awesome. She was a pediatric nurse prior and her communication with us has been excellent. The fact that she was so willing to jump on BlueLoop through www.mycareconnect.com was a hint that she would be on top of things.

Aislin’s cheer practice started this week and Blaine had his first tennis clinic. We are getting a feel for the rhythm this school year will bring. I’m hoping it’s a good one!

I'd choose to live

Blaine is our resident history buff.  He has loved learning about historical facts for as long as I can remember. A lot of history can be fairly violent in my opinion, however, it is not unusual for Blaine to read a book on Viking torture devices before going to bed. He is now reading the Hunger Game series for the third time (I read them first before I agreed to let him read them). Yes, they are violent, but they have opened the way for discussions of what living in a totalitarian government system would be like, leading us to conversations of what life may be like in places like North Korea. Later I’m sure it will lead to conversations about human rights.

When Blaine was four years old, my aunt gave him a dream catcher to hang in his room. It’s been hanging on his mirror for six years now. Coincidence or not, he hasn’t had a nightmare that he can remember since.  Maybe that’s why he can read such disturbing books before bed. On the other hand, Aislin would be traumatized by reading about a dog being temporarily separated from its family and would insist on sleeping in my bed all night. She will have to be 18 before she can read the Hunger Games, if ever!

The other day, out of the blue, Blaine asked an interesting question.

 

Blaine: “Mom, if you knew, before birth that you would die a horrible death, would you still choose to be born?”

Me: “Wow, I have no idea. What would you choose?”

Blaine: “I’d choose to be born anyway, even if I died a horrendous death.”

Me: “Well, that’s a pretty optimistic view point from a pessimist!”

Blaine: “Yeah, I know.”

I don’t know why he thought of that question, but I thought his answer was interesting. He’d choose to live anyway. 

Sometimes I think about friends and people that have been in my life that died before their time. For one year I worked and a speech and language pathologist on a preschool assessment team. For one year we had lunch together nearly every day. We talked about our families; we laughed together and shared the stress of being a working mother with children and a life outside of work. At the end of that school year she was in a fatal car wreck. She and her youngest son died in that wreck, while her husband and oldest son lived. There is not a day that I don’t think of her. If I’d known I’d only have one year to get to know her and enjoy her presence, I’d choose to spend that time with her, all over again. None of us know how long we have, but we can chose how we focus our energy on the time that we do have.

Hearing Blaine say he’d chose to live anyway makes me so proud. It comforts me on the days that I still want to scream, shout or sit down and cry. It wills me to keep going. I pray he will keep this veiwpoint in the years ahead. It scares me when I hear other parents talk about diabetes-burnout, but for now, all we can do is choose to climb the mountain and live each day.

End of a Honeymoon

This may possibly be the end of the honey moon phase.

I must say using www.mycareconnect.com has been amazing. These moms are brilliant! They saw the need to be in the loop about their daughters health needs and made a tool to do just that. Then they decided to share this tool, free of charge, for others to use for their benefit. This year Blaine’s school nurse is also linked in to this tool. She, Brent and I can input information each time Blaine checks his BG, has carbs or insulin. We can add notes for one another to see and his doctors can see the information as soon as it is added. We use this tool daily! I have the app on my iphone and Blaine has it on his ipod (although he has not used it yet). We are able to communicate with his doctors and make adjustments to food and correction ratios as needed without calling or waiting for our every 3 month endocrinologist appointment.

This tool also provides very nice graphs and charts, like the above. This bar graph shows the average daily total of Blaine’s fast acting insulin (Humalog) and slow acting insulin (Lantus) by week. Jumping from an average of 14 units of fast acting daily to 35 may just indicate that his pancreas is no longer dumping its own insulin into the mix! We’ve seen numbers like 317 (three times the normal limit of BG) to 37 (1/3 of the normal BG) in the same day. Definitely some adjusting of food ratios and corrections factors is going on in our house! All you can do is actively monitor and problem solve. There are no vacations from diabetes, that’s for sure. I am very appreciative of these innovative mothers who have made our daily management a bit more bearable.

Climbing the Mountain, Each Day

What is it like to live with diabetes? When we were first told that Blaine had diabetes I thought foremost that I was glad it wasn’t cancer.  Secondly, I thought that I would need to get over my needle phobia quickly. Then lastly, I thought that it would be as simple as doing a few shots a day.

While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.

Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.

Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.

I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me.  While we climbed I’d see other kids Blaine’s age skip, jog or run past us.  They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.

But I knew what would be on the other side.

I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.

While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.

I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.

These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.

To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.

Thankful

I'm thankful that some days are just normal days. Diabetes is always on our minds. How can it not be when constant blood glucose monitoring, carb counting and insulin ratios are required?

But, some days, when the numbers stay within range, just feel like normal days.

 

 

It has been a dreary, rainy three weeks, but today, the sun came back out.

 

 

 So we took advantage and loaded the pups up with their new life vests and took them out on the boat.

 

 

The kids swam. The pups snoozed in the sun.

 

And I took in this precious family time and enjoyed each and every minute of it.

Tennis for the Fall?

Blaine has never been one to love sports. As a baby he didn’t walk around kicking balls or asking for me to throw balls to him to catch. He sat for hours with his Little People, and then Legos, and then Minecraft building worlds. He will read books with several hundreds of pages in one day. He absorbs facts and can carry on adult conversations with assurance and always seems slightly disappointed when I don’t have immediate answers for him. No, I don’t know how many galaxies there are and sadly I cannot contain historical facts or dates. He was a team captian for Academic Bowl this past spring.

But sports? That is something I feel like we have (painstakingly) encouraged each year, season after season. We’ve tried karate for a year, two baseball seasons, two summer swim teams, one track and football season, a junior PGA golf team and three basketball seasons.  Our goal was just to complete each season. To be fair, he did like track and basketball and we will likely do those again this year. But, my rule for the fall was at least one activity per child that will require two nights of practice a week.

Aislin will be doing cheer again and tumble, she wanted to squeeze in hip hop too, but I think that may have to wait. Blaine needed something. We had tried a tennis camp the summer before 2^nd grade. I found a Groupon for tennis lessons and bought it. We found a coach that he has clicked with. So far, he likes tennis. After the Groupon lessons ended I signed him up for more private lessons that the two of us are now sharing. Then I signed him up for a 10u tennis league in our neighborhood. I'm not a tennis player and I don't even know how to keep score, but it has always been on my bucket list to learn. We shared our first lesson and had a great time. My fingers are very tightly crossed that this will be the sport that clicks for him. We’ve seen the difference that exercise makes on his blood sugar. Being part of an organized activity is the best way to ensure exercise. I’ve got some strong hope for tennis to be his sport!

The Blasted Numbers Again!

I had a pity party for myself yesterday. I don’t know if my house is too quiet after having family in town, or if I’m missing the structure of work, or if I’m sleep deprived, or stressed about an upcoming kitchen remodel, but the numbers really got to me yesterday.

I’ll not give you the whole day, just the range we experienced.

It started with a high of 355 corrected to a scary low of 40.

The average range is 70-150 for Blaine. That means he was nearly twice as high as he should have been and nearly twice as low. That low took forever for him to come up from too. Two juice boxes and 4 glucose tablets later he had only come up to 57.

I wanted to scream, or cry, or just go back to sleep and wake up to our old normal. I should be way past wishing for the old normal.

Other kids his age are off at all kinds of camps this summer. Guess how many Blaine has done? Zero. None. Not one single camp.

How am I supposed to send him off to even a half day camp with numbers like that?

Next week he will do a three day mini- basketball camp. I plan to sit in the lobby. In contrast, his younger sister is doing three weeks of camps in a row. What am I doing while she’s away? Definitely not worrying. I’m taking advantage of that time to run errands, or run the neighborhood…with Blaine, because for now he needs to be with me.

Please let me look back on this one day as the "Remember your 1st summer with diabetes? Look at you now!" Please let that happen.

Independence Day

One day my wish is that people with diabetes will have freedom and independence from daily blood glucose testing, carb counting and injections. One day maybe this will come to be.

July 4th Reunion

We had a great holiday. It was the first family reunion that I attempted to organize. And by organize I mean, create a private Facebook page and ask people to show up at a certain time. I am so blessed to have a truly wonderful family consisting of my parents, aunts, uncles and cousins. My cousins are more like my siblings and my cousins and siblings are my friends. I loved every moment of the craziness we experienced over the weekend.  Morning coffees and talks, three mile daily walks, little people all over my house with Kindles, iPods and iPads. Such a rainy weekend, but we still had a great time.

How do you not let the numbers dictate your mood?

This is what I need to find some better answers to. And our walkie talkies died so I was awoken at 1-something-am with Blaine yelling “Mom! Mom! I don’t feel good!” His numbers were fine. I think it’s just us being horribly off-schedule this summer. He was still up, but reading a book at 1:00 am. I told him that he was just over-tired and to go to sleep. Once he saw that he was 170 he fell asleep. I know he’s holding on to some anxiety about dropping low while he sleeps.

I thought we were doing pretty well this morning. I woke him up by 9:30 am in attempts to find some kind of schedule. His numbers were good. We did his insulin immediately with breakfast. Then we went to run some errands before picking up Aislin from a sleep-over and then meeting my friends for lunch.

As soon as we got into the car Blaine said he was thirsty. Polydipsia. The word comes to mind every time. I was feeling confident with the amount of insulin that we did and it was too close to the dosing and breakfast to get an accurate BG check, in my opinion. We picked up Aislin and they immediately began bickering. We have quickly learned that Blaine has various levels of high.

When he is slightly high, he talks nonstop, he says silly words and can be sometimes funny, sometimes annoying. When he is too high he has zero tolerance for his sister and becomes very moody, very quickly. Coping skills vanish and he is irritable. We decided to check before going in to meet Jackie and Robyn for lunch. He was 299. What!?

Aislin asked Baline what happens when he is too high. He told her that he gets headaches and doesn’t feel good. She again asked the same question, getting frustrated from her lack of sleep from the sleep over. Blaine tried to clarify the question. She yelled her question louder, with no clarification, just amplified volume. I tried to clarify. She got angry and yelled that she didn’t care. Blaine, equally angry, and high at this point finally yelled back to her, “If I’m too high I will die. Okay? There, I will die if I stay too high. Does that answer your question?”

Truly not a conversation I ever anticipated my children having.

Throughout this exchange I felt my blood pressure rise. Was it anger, frustration, confusion, defeat? Probably all of those things. What happened? I still don’t know. Did we miscalculate breakfast? Did he not do the insulin correctly? He does the majority of his injections, although I supervise and usually prep the kwik pen. Did it all not go in? It’s just frustrating. On top of that we were trying out a new pizza place. While waiting in line, he did a correcting dose and we guessed at the needed insulin for his food.  Who cares if the people around us don’t want to see my son inject a needle into his stomach? I don’t want him to have to inject a needle into his stomach, or arm, or leg. For the first month we were discreet, but when Brent suggested that Blaine go into a restroom to do his insulin while at a restaurant I drew the line.

Forget the discomfort of others, not that I’m insensitive. I just care about my son, his comfort and his needs more than the comfort of those around me. Even if they have needle phobias. I don’t mind when women breast feed in public, even if it is a walking, talking toddler that they are feeding. Others can get over my son doing injections in public. I will not have him going into a nasty restroom to give himself the insulin that his pancreas is failing to do.

We checked two hours later and he was in range. Good thing. But then, just before dinner, with no snacks or food in between the last BG check he was slightly high again.  His last A1C was 7.0. I’m already stressed that his next one will be higher, probably at least 8. I know the numbers shouldn’t control my feelings. But they do. These numbers are now one more thing that can make me feel like a failure as a mother.

If I let them.

Walkie Talkies

Who knew that walkie talkies may just be a solution for allowing both Blaine and I to sleep a little better at night?

The kids had bought some at Target the other day. I complained to them that we already had some, they were just lost somewhere in the basement. But, it was their own money and they wanted another set. Now, I’m so glad we have them.

This Friday the kids and I went bowling with some friends, plus our cousin Hugh, who was in town for the week. As we were finishing our last few frames Brent called. He had already gone to the gym at his office and was on his way home. He asked about the evening plans.

I suggested we take the boat out for dinner, so that’s just what we did. We had our neighbor Ben for the evening as well as Hugh, his sister, Emily, and Aislin. I ordered pizzas and Brent grabbed some cookies for dessert, bottled water and ice. I have the carb count for Pizza Hut memorized, and we counted carbs on the cookies. Yes, I hated it again, like I do every time, that unlike the other boys Blaine couldn’t just grab a handful of cookies. He had to know how many he was going to eat. I let him set the pace, how many he was going to eat, was how many I gave the other kids. Besides, nobody needs to sit there and eat double and triple the serving size (like I often do).

We tubed and swam. We watched the sun go down. We felt grateful. It was a perfect night.  On the way back, after the swimming and tubing, the kids were hungry again and wanted some more cookies. It was dark, we didn’t check Blaine’s BG, but I also didn’t want to tell him no to cookies. I’m not going to let diabetes steal his childhood. Having cookies with friends after a day of boating seems like part of his childhood, I didn’t want to deny him that. So, he had two cookies, 25 carbs, not quite a unit of insulin for him. We didn’t correct.

Once home we checked his BG, we knew the numbers would be off since he had recently eaten, but wanted to make sure he was above 100 before bed. At 10 pm he was 200. We didn’t correct, just gave his nightly Lantus.

They boys wanted to sleep in the basement.  That makes it much harder for me get up and check on him in the middle of the night like I sometime do, but again, I’m not going to let diabetes steal his childhood. Having a sleep over in the basement with his cousin and best friend is part of his childhood.  I gave him his walkie talkie and kept one with me. At 12:15 am I radioed down. The boys were still awake. I told them lights out immediately and that I’d be down in 5 minutes to check. Of course, I fell asleep and didn’t check. I woke from a nightmare which I can no longer recall. I went down to check on Blaine. I saw that he was still breathing, and all boys were sleeping probably around 2 am.

I got back in my bed. I was just drifting back to sleep. My walkie talkie beeps. “Mom, I feel low.” That singular phrase can send a rush of adrenaline through me at any time. I immediately sprang from bed, geo Blaine’s kit from downstairs, and then rushed to the basement with it. We checked. He was 81. Not low, but maybe he felt himself dropping, which he sometimes says makes him feel low. He had a juice and went back to sleep.

Every night since, we have both slept with a walkie talkie on our night stand. It has eased both of our anxiety.  On his way to bed last night, Blaine asked if Brent or I would bring his diabetes bag up. He said he sleeps better knowing it is nearby.

At the T1 brunch last week I asked the other moms about lows throughout the night and how they handle them. One mom told me she brought her four year old back into the bed with them, and they now co-sleep. The other mothers told me they don’t sleep. Out of the four moms with school aged kids there, I was the only one sending mine off to school. The other three moms had decided to homeschool.

I can’t do that. I know Blaine would love to be homeschooled. But, it’s not for me. I need my career and I need him to be independent of me, or at least not with me all the time. I didn’t ask about their schooling philosophies and didn’t ask if they had homeschooled prior to diagnoses. Although one mother offered that they had schooled at home prior. All these things are reminders that this is a life changer.

Our old life died on 3/3/13 and the new one started on 3/4/13. My old dreams for him didn’t die. I want him to leave me one day and go off to school. I want him to experience living somewhere new and finding his own way. I want him to be independent of me. We will just have to make conscious choices every day to make that happen. Little things for now, like walkie talkies on the night stand seem to be a step in the right direction.

This is a Honeymoon? A day in our life during this phase.

When children (or adults) are diagnosed with Type 1 they will sometimes experience what is known as a honeymoon phase. Once Blaine began receiving insulin via injections, his pancreas remembered “oh, I have some insulin too”. Blaine was diagnosed before he was in DKA or in an “emergency” situation such as coma or seizing. So, I had assumed that maybe he did have a few insulin producing beta cells left that his body had not yet destroyed (type 1= autoimmune condition). If only there were a way to get to his beta cells and clone them!...?

Although, this brings back a memory, so I digress. In college I was in an honors biology class with 12 other students. We were replicating DNA. It was a whole semester worth of work in the labs. I was the ONLY one who failed to have my DNA replicate. It seems I treat science like I treat my baking. Who needs to measure? Seriously, with the DNA we were working with mirco-measurements. Would it really matter if I was .001 mm off? The answer, apparently, was yes. And the answer to whether sugar cookies will rise without baking powder is no, as my children like to point out every Christmas since the year I didn’t use any because it wasn’t on hand.

Back to the honeymoon. Probably a month after Blaine began receiving exogenous insulin (insulin outside his body via injection) we noticed that he needed less and less. His food ratios were corrected from 1 unit per 15 carbs to 1 unit per 45 carbs. That has since been readjusted to 1unit: 30 carbs. We also noticed that anytime we had to do a correcting does (use the formula BG-100/correction factor) he tended to drop quickly.

The past few days have been full on hyperglycemic and hypoglycemic days. Because Blaine was in the 200’s the other morning at 8am, I dutifully woke him at 8 am yesterday to check and make sure this wasn’t a trend.

Yesterday 6/27/13:

8:15 am- 121 (Good number! You can go back to sleep!)

10:00 am- Kids wake up. Aislin wants to play restaurant. She puts on her pink art smock with pockets. She had a notepad to take Blaine’s order. When I come back down stairs I see a carb fest in progress. Mini-wheats, toast, fruit…. Blaine asks Aislin if she put 21 mini-wheat biscuits in his bowl. She says no. They start all over with a new bowl, as the first was piled high with an undetermined amount and was now soggy with milk. He’s eating away, happy to have his sister serve him. I ask about insulin.

11:20 am- Blaine guesstimated 100 carbs, and did 3 units on his own. I’m glad to see him take imitative so I let him do it on his own. He tells me he got a vein and won’t stop bleeding. It’s a nano-needle. He won’t bleed out. I tell him he’s fine, never thinking about the fact that maybe not all the insulin got in him.

12 pm- He leaves to go play at Ben’s next door.

1:55 pm- He comes home to check his blood sugar. While he is supposed to be washing his hands he instead has his head turned sideways inhaling water from the sink. Polydipsia. This was a word we learned in diabetes boot camp. It means frequent or excessive thirst and is a sign of hyperglycemia.  I braced for a high number. He checks.

436!!! That can’t be right. I immediately pull out another strip while he still has blood on his finger. We check again.

448.

448 is the highest we have seen!! What went wrong?! I remembered what other bloggers had written. Don’t get hung up on the number, it just tells you what to do next. I take a deep breath.

I ask Blaine what he thinks happened (very calmly, as if we were watching a movie and I wanted his thoughts on the plot). He says maybe too much insulin leaked out with the kwik pen.

We do a correcting dose (448-100/80= 4.225). We give him 4 units. I know that this will likely drop him, so I tell him to be aware of an impending low.

3:04- 158, one hour later he has quickly come back to the normal range. We are now at the pool and kids are playing in the water.

3:29- The blasted ice cream truck comes by. The kids buy the overpriced sugary treat with their own money. I’m impressed that Blaine got an ice cream bar with only 14 carbs. For now this is a “free snack for him”.

Kids eat and then go off to swim.

3:43 pm- Blaine does the low stagger from the pool onto the chair next to me. He tells me he feels low. He sits. I wait for him to check his blood. 54. Yikes, we’ve been seeing these 50s every day it seems. I tell him to drink his juice. He sits. He tells me he can’t. Yes, he was feeling so low and he dropped so quickly that he was sitting there in a daze. I quickly get the juice ready and give it to him. About 5 minutes later he’s ready to jump back in the pool. I have him take a glucose tablet as well.

4:11 pm- Boys are tired of swimming and want to go back to the house. I tell them that’s okay as long as Blaine’s numbers are fine. He checks- 81. They take one walkie talkie and I keep one with me. Once home they decide that want to ride bikes.

This is where it gets tricky. Prior to 3/4/13 we would have encouraged Blaine to do just this. Put on a helmet and ride his bike with his friend. Everything is different now with the new normal. I decide that with the walkie talkies I can be in communication, and with Ben there with Blaine he could let me know if something were to happen. It’s called letting go, all over again.

The boys ride bikes. They radio in to tell me they are headed up by my cousin Tres’ house. I say okay. A few minutes later I panic. I can’t get them on the walkie talkies. I fear that they have decided to down this wooded trail that leads to the lake. I try not to panic. I text Ben’s mom to see if maybe they were back at Ben’s. I radio them, over and over. Nothing. What do I do? Grab Aislin from the pool, soaking wet, jump in the car and go to the trail? They know not to do something like that without asking!

Finally, a whole 5 minutes of torture later, I hear Ben’s voice on the walkie talkie. They are headed back home. Sure enough, I see Blaine and Ben, plus our cousin Hugh coming up the hill on bikes by the pool. I breathe a sigh of relief.

The boys go down the basement to play xbox. Aislin and I come home.  She busies herself playing restaurant again with the pink art smock, but this time with three customers. Another carb fest. I walk into the breakfast room and see toast, with cinnamon sugar, graham crackers, and banana with peanut butter. Blaine’s happily sitting with the other boys eating away. Did he check his BG before eating? No. Do we know the carb count? He thinks so.

6:11 pm- Blaine believes he has had 55 carbs so we do 2 units of insulin. What a drag, the other boys are now playing laser tag in the dark basement while Blaine has to go through the steps involved in doing his calculations and insulin. Even though I’m right there helping him, these are just some the minor bumps reminding us that his days are slightly different than his peers.

7:00 pm- The kids are still off playing. We’re out of good dinner options as we didn’t make it to the store. It’s turkey bacon and eggs for dinner or delivery. I order delivery.

8:00 pm- we eat. Blaine is a few bites into his steak and cheese sub. I ask if he checked his BG before eating. No. We are flying in the dark again. He says he feels normal…We correct for the sub with 2 units. I know we will need to check him before bed, but the numbers will likely be slightly elevated because it won’t have been two hours.

9:21- He’s 258, but the insulin hasn’t completely done its job yet. I do his 11 unites of Lantus (long-lasting insulin) and I head to bed.

10 pm- I tell him to sleep tight. Definitely above100 tonight so I’m not worried about him going low.

I'm not sure how different our days will look once his pancreas completely stops producing any insulin. I went to a Type 1 brunch this week and the other mom's assured me that it will actually be easier once he leaves the honeymoon phase. I asked them, then why is it considered a honeymoon? I thought honeymoon was supposed to imply something good. Seems more like chaos to me. I'll do a day in our life 6 months from now for comparison's sake.

Battle with a Bug

This morning Blaine woke up earlier than normal, before 8 am, so we checked his BG.

273. What?! That's too high for the morning.

I looked at his log last night. He was 111 before bed. He had done what I like to refer the “low stagger” up from the basement around 9 pm. He’d been playing xbox with his cousin Hugh after dinner.  He threw himself into the kitchen island where I was standing, almost collapsing, and stated "I feel low".

He's consistent with the low stagger so he really didn't even need to tell me he felt low. I already knew. We checked his BG. It was 51. Yes, he was definitely low. He had a juice box and two glucose tablets. I knew with a number that low we’d be checking again before bed. He needs to be at 100 prior to going to sleep.

One of my original biggest fears was him dropping too low while he slept, not being able to get to us to let us know, and then slipping off into a diabetic coma during the night, and me not being able to wake him in the morning.

We checked again 30 minutes after the juice. He was up to 111. I gave him the long lasting nightly insulin and we headed to bed. I reassured him that he’d be fine as he slept. After our advanced diabetes class he is now aware of the same risk factors I already knew. I had hoped to shield him from some of these things a bit longer. I emphatically told him that I was not worried at all, stated that he was 111 which was perfect for bedtime and told him to sleep tight and that I’d see him in the morning.

So, imagine my shock with him being 273 this morning. A few thoughts began running through my head: is he always that high around 8 am? He’s been sleeping in until 10 am most mornings. It could be that he is spiking every morning and we never knew. Now I need to check him the next few mornings at 8 am to confirm or disconfirm that hypothesis.

Turns out Blaine had another hypothesis. He told me that while taking a shower this morning he had a battle with a bug.

Blaine: I had a battle with a bug this morning.

Me: You had a battle with a bug?

Blaine: Yes. I had a battle with a bug just now, in the shower.

Me: I see. You think that raised your blood sugar?

Blaine: Well... (He's looking off, thinking back on the battle.) It was pretty intense.

Those stupid centipedes. I’m called once a day to kill a bug during the summer. I guess he tried to tackle killing his own bugs today. We've found that adrenaline will raise his BG at times.

Then he returned to eating his 21 mini-wheat’s and cup of milk (FYI-58 carbs). We used his current correction calculation (BG-100/80) plus carb ratio (1unit:30 grams of carbs). So he had 4 units (273-100/80 + 2 units for food).

Babies get diabetes too

Today Blaine and I woke up like we would for a school morning and left the house by 7am to be back at Scottish Rite for an advanced diabetes class. He told me on the way there that he was happy that he would not need an IV going into the hospital this time.

We arrived 30 minutes early and were directed to the waiting room. I didn’t realize that we’d be treated like a patient. We had to wait to be called back to verify the insurance coverage for the class. The person checking us in was like a robot, or an assembly line worker. She made minimal eye contact and typed away on her keyboard. I was getting a little frustrated, realizing that even though we got there 30 minutes early, we may still not make it to class on time. My phone showed we had 5 minutes until class started. I finally broke the rhythm of her incessant typing and stated, “You do know that we are NOT checking in, right? We’re here for a class.” She verified that she knew that. She asked for my ID, asked me to electronically sign a few things, and then we were headed back down the same halls we walked back in March.

Thankfully class had not started when we walked in. We were handed a packet of information and then headed to find a seat in the mini auditorium. I moved us toward the back. Once settled, I took a moment to survey the room. There were maybe 7-8 families there. Half had children with them that were Blaine’s age or older. Except for the family in front of us.  I noticed that they had brought a baby. A little toddler who was moving all around. I thought, my goodness, could they not have found a sitter, how are they going to focus with a baby there. Then I looked to find the older sibling. The one with diabetes, the one that had to share their parent’s attention with a baby, brought to a four hour class.

But I didn’t find an older sibling. All I saw was the mom, dad, baby and a grandmother. Then it hit me, this baby couldn’t be the one with diabetes, could he? I leaned over to Blaine and said, “I think that baby might have T1”. I then leaned way over into their row, in front of us, to investigate. Then I saw it. The same green cameo bag that Blaine has, the hospital issued T1 bag. There it was on top of their diaper bag.

How, why? Why would a little chubby toddler have diabetes? This baby who was likely only 12 months old had to endure multiple finger pricks and multiple daily injections, just like my 10 year old, but he was only a baby!

The thoughts that keep me up at night, my worrying about Blaine’s fingers becoming calloused from the constant finger pricks, or his body needing more and more insulin as he ages. She has those thoughts too, except for, she will have that burden 10 years longer than me. I had 10 years of freedom from these thoughts. What did she get? Maybe eight, nine or 10 months? My heart broke for her and her little boy.

I realized that she likely brought her baby and mother for the same reason that Blaine has 99% of his play dates at our house now. She probably couldn’t stand the thought of being away from him for 5 hours. Who would read his signs to know if he’s going too low? Who would notice if he’s high, or make a judgment call if needed about a correction dose? Who would do the calculations to figure out the insulin for the carbs in the food he had eaten?

I sat throughout the class wondering, how is she going to do it? How will she send him off to preschool, or play dates, or the first day of kindergarten. Will she let him go off to sleepovers? These are anxiety provoking events for most parents. But to have a child with a medical condition, a condition that while it can be managed, can also turn into an emergency situation at any point in time….how will she do it? My heart goes out to her and the other parents of babies with Type 1.

Six Degrees

Prior to Blaine’s diagnosis I didn’t think I knew anyone with Type 1 diabetes. Since his diagnosis the following series of events happened:

· We learned that there were 3 other children at his school with T1. Two are his same age. One is younger, just finishing 1^stgrade. The younger one rides Blaine’s bus. All three of these children live in our neighborhood.

· Blaine’s pediatrician has T1. I thought he wore a beeper. Turns out he wears a pump. He called to check in on Blaine at the hospital, offer his support and let us know he’s on the board of Camp Kudzu, and to also let us know he is T1.

· Blaine’s good friend’s mother is T1. Again, I thought she wore a beeper. She too wears a pump.

· When I took Blaine to have a retina scan (since blindness is now a risk factor) our eye doctor let us know his son who is in college is T1. He spent extra time looking over Blaine’s scans and talking with us.

When I think about these things I know we’ve been relatively lucky. Blaine’s school nurse was very experienced with T1 management. Blaine, when diagnosed, already knew two other kids his age with T1. He has a friend whose mother immediately reached out to us. His pediatrician is T1 and reached out to us. His eye doctor understood why I made an appointment for my 10 year old to have a baseline retina scan. We’ve gotten more support than most I would imagine.

But, still.