White Christmas in Texas?

It snowed HARD yesterday. Reports vary as to how long it has been since we have had a white Christmas, but I honestly can't remember one. Ice, yes. Snow, no. But it snowed a large portion of the afternoon. Thankfully, we were prepared to spend the night with my parents. Plenty of extra insulin, a change of clothes, etc. Traveling with diabetics is almost like travelling with a baby again. We can't just pick up and leave spontaneously. The list of supplies has to be checked then checked again. It would be catastrophic to forget anything.
After 2 days of travel and eating with different parts of the family, I would classify the holiday as a success. Blood sugars stayed under 400 for both of my guys. I would have liked them to have been lower, but it was Christmas! No real restrictions on what they ate, so I expected them to run high, even with extra injections. Some foods are just hard to calculate, but we continue to learn.

Merry Christmas!

It has been a year of challenges to be sure, but also a year of blessings. Here is it, good and bad:
1 kid home from college for a couple of semesters
2 diagnoses of diabetes...a type 1 and a type 1.5
3 worked as lifeguards this summer
4 days in the hospital for Seth and 4 years of teaching for Jason
5 k of swimming by Jason (at one time, not total)
6th year of DI by Seth, and a 2nd place finish at competition
7 years in our house
16th birthday for Seth
17 years of teaching for Cassie
19th birthday for Josh
21st anniversary for Jason and Cassie
62 miles swimming for Cassie (total, not at one time)
Much love and multiple blessings for our friends and family. They helped us through this very trying year of loss and pain. Merry Christmas to you all, and may 2013 bless you all year long.

Diabetes Doesn't Care

Diabetes doesn't care if your friend is leaving town for several weeks and you want to say goodbye before she leaves.

Diabetes doesn't care if you are tired and want to go to bed.

Diabetes doesn't care if you are tired of eating sugar.

Diabetes doesn't care if anything else is going on in your life.

Diabetes doesn't care about you in any way. But the kicker is, you have to care about it. You can't ignore it. Ever.

The last 2 nights we have battled lows that Would. Not. Budge. Even with massive amounts of carbs. Tonight was shorter than last night. We have done more insulin adjustments, so hopefully tomorrow night will be better. But who knows? Diabetes likes to keep it confusing. It doesn't follow any rules.

This is what's left behind after several hours of stubborn lows :

The food tally for that low: 2 graham crackers with peanut butter, 2 juice boxes, 2 packages of Skittles (fun size), 6 spoonfuls of cake frosting, and an entire regular Dr Pepper. It took all of that to get him over 100 so it was safe for him to go to bed. He was nauseous and exhausted. Imagine his frustration when the scene was repeated tonight. Oh, and I haven't even mentioned the finger sticks yet. 10 last night and 9 tonight. He is out of fingers to test on. We need a break. HE needs a break, but diabetes doesn't care. 

Another Diagnosis

Jason has struggled for several years to control his type 2 diabetes. Despite eating pretty well, exercising, following doctor's orders about medications, and even the type 2 last resort of Lantus (long lasting insulin), his A1c values continued to be too high. Comments about losing weight, eating better, exercising more, just getting it under control were not helpful. They often came from well meaning people, but the pressure it creates is not helpful. At. All.

After Seth was diagnosed with type 1, I began researching to learn all I could to help him. I stumbled across some new numbers. Type 3 diabetes is a nonmedical term used to describe caregivers of diabetics; that's me! I never dreamed I would have a diabetes number, but now I do. Then I saw type 1.5 diabetes. As I read more, I began to think it described Jason....diabetics that might be slightly overweight but having poor control. It's basically slow onset type 1 that is often misdiagnosed as type 2, the best I can understand. The ADA doesn't distinguish it from type 1.  I encouraged Jason to discuss it with his doctor at his next appointment. That appointment was today. The doctor agreed that he was misdiagnosed, and changed his diagnosis to type 1.5, also known as LADA (latent autoimmune diabetes in adults). Previous treatment plan scrapped completely, as it was a completely inappropriate treatment plan for a type 1. No wonder control has been unattainable! New plan is in place, and I am hopeful it will work fabulously. We are a family determined to KDA.

On a positive note, Seth's endo appointment was today also. A1c was 7.3. This was the first A1c that included a full 3 months of treatment. I was thrilled! I continue to be so proud of his attitude and proactive approach to living with type 1 diabetes. The only thing that worries me is his unawareness of lows. He was 58 in the endo's office, but didn't realize he was low until she asked how he felt. It was then he realized his hands were shaking. Type 1 peeps/parents -will he likely learn to recognize it?

Random thoughts on diabetes and life

I haven't posted in a while. Life without diabetes was busy, but with it, it's relentless. Here are just some random thoughts and occurrences from the last couple of weeks.
*God is good. He didn't give my child diabetes; that's just part of our fallen world. But He had provided for us in countless ways, some even YEARS in advance. One example: several years ago, Jason was a bit of a job drifter. He was struggling to find his next career. He tried selling insurance for a while. Because of that, Seth has a life insurance policy that can be converted to an individual policy when he becomes an adult. No medical questions. Wow!
*Seth has an escape. When he is playing his drums, he isn't thinking about diabetes. So I let him drum away. It also helps with his blood sugar. It's always lower after he had been drumming a while. I don't have an escape yet; I am ALWAYS thinking about it. So I am a little jealous and that makes me feel guilty. He is the one that has to live with it every second of his life. He deserves a few minutes every day when he isn't thinking about it.

*People ask frequently how Seth is doing and if his numbers have stabilized. It's really hard to explain over and over that there's no such thing for a type 1. His numbers will ALWAYS fluctuate wildly. I really appreciate people asking how he is doing. Really. It shows they care. But there is no short answer to that question. I usually just say that his attitude about it is amazing and leave it at that unless it's someone who truly wants to know the whole answer.
*I have realized that the amount of insulin he needs isn't an indication of how good a job we are doing. His body needs what it needs. Period. No shame or anything negative in increasing his dose. It's literally life support.
*Sometimes there is a pattern in the numbers, sometimes there's not. I look for patterns almost obsessively, hoping to figure it out. I am learning from parents that have been doing this much longer than I have that there sometimes is no rhyme or reason to the numbers. Treat the number and move on.
*We got Team Seth awareness bracelets. I think it has really helped him to see how many people are standing behind him in this fight. If you have said you wanted one and haven't gotten it yet, I will send them as soon as I can. My intentions were to have them mailed already, but getting to the post office is hard when they are only open during school hours.

*Yes, every conversation I have these days revolves around diabetes. Be patient with me. I will eventually be able to have regular conversations again. I have been told that, so I am choosing to believe it. We were told to give everything 6 months; it has been just over 3.
Like I said, pretty random thoughts. That's how life has been recently. It will get better.

Thanksgiving prep

Our preparations for Thanksgiving have been a little different this year. Ok, a LOT different. Mom made the menu as usual; she will be doing most of the cooking, with me making Grandmother's dressing. But this year we have to think seriously about carbs, so we sat down to do the calculating. The conversation went a little like this:

Mom: How much in the turkey and ham?
Me: They average 1 per serving.
Mom: Ok, let's work on the pies. One cup of flour for the crust, and we don't have to count the butter, right?
Me: Right. So a cup of flour has 88, plus the filling (more adding). So that's 62.5 per slice if we cut it into 8 slices. How about the broccoli and rice? (We add up the total carbs for the recipe.) But how many servings?
Mom: We'll just have to measure that once we get it made.
Me : Yep, we have the total, we can divide on Thursday.

On and on like this for each recipe. We have carb counts for every dish that will be on the table Thursday. Some are already figured per serving, some we will have to finish once it is cooked. Because of our advanced planning and awesome math skills, Seth will be able to enjoy a reasonably normal Thanksgiving dinner. Lots of food, lots of insulin. Is it worth it? Absolutely!

After the calculating, we rewarded ourselves with banana pudding. Yum!

How important is math?

A student asked me the other day if I really used math outside of school. I answered that yes I do, every day. She wanted to know how, so I explained that my son has an illness that requires us to calculate the carbs in every bite of food he eats, and to calculate his medicine to match the food. Her response? "I would die then." I assured her that if her life depended on it, she would learn math quickly. She didn't seem so sure.
We had similar thing happen in our last diabetes education class. The lady sitting behind us was beside herself trying to calculate her son's insulin to carb ratio. She was very frustrated, to say the least. Jason turned around to help her, ever the teacher. He patiently explained it to her again, but when we left that day, I wasn't convinced she knew how to do it. Thankfully, I heard her say she had a friend that could help her. And she will do what she needs to do in order to care for her child. That's what good parents do. We do it so that our kids can live a reasonably normal life, and do things they love, like this:

Photo a Day Challenge

Seth and I have taken on the National Diabetes Awareness Month photo a day challenge on Instagram. It has been interesting, sometimes fun, sometimes really hard. The first day, cereal was his struggle. I wrote about that last. I am so proud of him for taking on this challenge. Here are his pictures since Saturday:

Of cereal and anger

Today I am both proud and angry. I am so very proud of Seth. He has taken on a photo challenge for National Diabetes Awareness Month. Each day this month, he is posting a picture on Instagram related to diabetes. Day 1 challenge was struggle. What did he post? A picture of a bowl of cereal. And that's why I am angry. Angry at diabetes for taking this away from my child. You see, Seth really loves cereal. I mean, he REALLY LOVES cereal. He would eat cereal any time of day. Yes, he can still eat cereal. But not without planning, calculating, and injecting. That's why I'm angry. A teenage boy should be able to eat a bowl of cereal without having to count. Every. Damn. Carb. We pray every day for a cure. Until then, we are thankful for the life-saving insulin that he injects 4 times a day or more. One day, we will KDA.

Diabetes Awareness Month

November is Diabetes Awareness Month. Didn't know that? I didn't either, until recently, even though I have been living with a type 2 for about 9 years. When type 1 entered our lives unexpectedly, everything changed. I have always been aware of the research being done to find a cure, and I have always been hopeful that a cure would be found. But now it's personal, very personal.
There are a couple of things you can do to participate:
1) Be a type 1 for a day. Through the Juvenile Diabetes Research Foundation (JDRF), you can experience a tiny bit of what we go through each day. If you are game, sign up to receive text messages for 24 hours. You will receive text messages throughout the day to let you know what a type 1 experiences, minus the finger sticks and injections, in a day. Text T1D4ADAY to 63566. You will receive a confirmation text that completes your registration. Or visit
http://www.jdrf.org/index.cfm?page_id=117942 for more information.
2) The Big Blue Test. Check your blood sugar, do a little exercise, check your blood sugar again, then log the results at http://www.bigbluetest.org/. The goal is 20,000 tests by November 14, World Diabetes Day. The organization will donate diabetes supplies to people in need.

Do it for these 2 that I love so very much.

One day, we will KDA.

Pattern management

After 2 nights over 200 at bedtime, we are struggling to get over 100 for bedtime tonight. Actually, it's morning. It's Friday night/Saturday morning after a high school football game, the first chilly one this season. Seth and I had already planned a couple of nighttime checks to see if we can figure out what is going on with his recent morning highs...are they real, meaning a Lantus increase, or are they rebounds? Or they could be cause unknown. Lunch has been a tad low the last couple of days, making me suspicious of rebounds. So, what better way to spend a Friday night than checking blood sugars a few times? Doing all we can to KDA!

Graduation Day

Today, we graduated! No more sending in Wednesday blood glucose logs. We are free to make our own dosage decisions, with support, of course. I think we are ready.
Today is also 2 months since diagnosis. Wow, hard to believe it has been 2 months. How did we spend the evening? Marching contest, followed by Dairy Queen for supper. Yes, we had mini Blizzards. We know how to calculate for those now. Life is slowly returning to a sense of normal. We will indeed KDA.

Sometimes it's just life

3 times today, I thought diabetes was to blame when it wasn't. Sigh.
1) During first period, I got an email alert that Seth was marked absent. Mini heart attack...I knew he rode to school with me and knows better than to skip class! Was he passed out in the bathroom or something? Calm down, call his teacher. Teacher was clearly confused...Seth is here, oh wait, I marked the wrong person absent. I have done that so many times.
2) Seth comes in to fix his lunch. He looks upset. Maybe he is low. I got my class started, then walked back to the prep room to check on him. Meter read 97, so not low. I asked what's wrong, he said he is tired, didn't sleep well. Which lead to #3.
3) Me: You weren't high last night.
Seth: No, I don't think that was it. I just had trouble going to sleep.
Me: Yeah, I have trouble falling asleep sometimes, especially on Sunday nights. (Maybe an ok save?)
Later we talked about how lots of teens seem to have trouble falling asleep, and suggestions I have read that should help. We'll see, I guess!
Oh, and we didn't make it a 3rd day in range. But he was BARELY out of range tonight. Still a win.

Two whole days in range?

Every blood sugar check has been in range for 2 whole days, after 4 days of being high, followed by a roller coaster day. I have to say, I am feeling a little giddy, despite knowing that it isn't likely to last for long. I'll take as many in range days as we get, and remember that they are possible on the high or roller coaster days.

A beautiful sight!

Brothers

On Seth's birthday earlier this year.

I remember the day Seth was born, and Josh ran up and down the halls at the hospital trying to get people to "come see my baby." Who knew that 16 years later, he would be helping take care of a very sick little brother? Through a strange set of circumstances, Josh didn't return to college this fall. He stayed home to work and regroup before going back to school. Little did we know how much we would need him. The week before Seth went to the hospital, Josh was his main caretaker. Jason and I were in our all-important staff development week preparing to return to school. So Josh tended to Seth. Thursday, the last day before diagnosis, was really hard for Josh. He could feel his brother wasting away. He later told me that once Seth was in the hospital, he quit worrying. He knew Seth would be ok. As hard as it is to watch your child when he is ill, it is also hard to watch your other child caring for their sick sibling.
Josh being home during this time has had another positive effect for Seth. You see, at 16, Seth has become pretty independent. That is our job as parents....to produce independent young adults. At diagnosis, I felt that independence slipping away. Enter Josh. Big brother can "hang out" where parents really can't. We would have never asked Josh to stay home to help us. God provided in a very strange way for things we didn't even know we needed.
Josh will leave again for college, probably next fall. That's the way it should be, and I'm excited about his future. But for now, it's nice having the brothers together again.



What time is it?

If you ever need to know what time it is, ask someone with type 1 diabetes. Our life now revolves around the clock. Testing, injections, meals, snacks all perfectly timed. Until there is a schedule change. Yesterday was one of those changes. Seth took the PSAT at school, and the schedule was nothing like his regular school day.
First, the teacher in his testing room was a new teacher that neither of us knew. Would Seth have to fight for his scheduled snack? He carries a copy of his management plan with him...would that be enough? So we came up with the first part of the plan: get there a little early and talk to the teacher. If there were questions, he would then have time to call the nurse.
Second, lunch was an hour and a half later than normal. Would he go low in that time? So we decided to make his snack a bit later to avoid that. I also checked his bag for Skittles and a juice box, just in case. What to take for lunch? He wouldn't be able to come to my room like normal to heat up his food, so we had to plan something that didn't need heating up.  The directions for the teachers were not to let the students take belongings to lunch with them. Would it be an issue taking his supplies with him?
All worked out fine, as I was sure it would. He was a little high at lunch, but that is to be expected on test days, I understand. We had so many things to consider that I had never thought of before, but we planned and it worked. When exit level TAKS rolls around in April, I think we will be prepared!

What's KDA?

I've had several people ask what KDA is. It is a statement of strength in honor of the beautiful memory of my friend Amy. She battled cancer with grace, but her battle ended the same day we realized Seth was very sick. Our friend Julie had coined the phrase KCA as our battle cry....Kick Cancer's Ass. We would regularly use that phrase to comment on Amy's Facebook updates. I asked my friends if I could change the phrase to KDA for Seth. The responses? "Absolutely. Amy would love that! I'm sure she is smiling!" So it has become our battle cry, and it reminds me daily not only of Seth's fight, but of my beautiful friend. Her memory and her legacy live on.

Just keep swimming

Those of you who know me personally know how much I love to swim laps; it helps keep me sane as well as healthy. Yesterday, as I was swimming I kept having to fight back tears. Even the music coming from my waterproof mp3 player couldn't drown out the screaming thoughts. I finally had to quit swimming....tears and goggles don't really mix very well. I realized I really haven't cried much since Seth got out of the hospital. Now it seems all I can do. Tears of relief, sadness, and fear all mixed together.  I know this phase will pass too, so I will let the tears flow. Then I will get back to swimming.

Classes, classes, classes

The classes started while we were still in the ICU. We barely had time to digest what had already happened and they were already giving us homework. 4 hours of sleep total in the last 2 nights, and we were doing homework. I'm not sure how much we actually absorbed those 2 days, but we did our best. As a teacher, I love learning. But this isn't something I ever wanted to learn!

They told us he would be hungry once his appetite returned, and boy were they right! He was eating massive amounts of meat and cheese between meals and snacks, just to get by. A trip to Red Lobster resulted in 125 shrimp being eaten, along with carefully calculated sides. I was buying 5 lbs of chicken breasts at a time and baking them for between meal snacks, as well as boiling a dozen eggs at a time. How long can this go on?? But he was regaining the weight he so desperately needed to gain, so I just kept cooking those carb free foods!

9 days after discharge, a full day class. Tons of information presented in a PowerPoint. Needed information, but boring. We learned how to estimate carbs, more about doing corrections, how to figure out snacks/insulin when exercising, and lots more. The dietician said if he was eating a whole chicken breast for a snack, then he needed a meal plan adjustment. That helped a bunch!

First doctor's appointment at one month, we learned more even though it wasn't an actual class. They introduced us to ratios. Ratios will make life a little more normal, I think.

Too tall to be measured!

Playing video games in the waiting room

Today, we had our second required class. I think we are all feeling better about how the ratios work, and they introduced us to a little more flexibility in both meals and snacks. We also met a family that lives not too far from us. The boy is 14, and was diagnosed about 3 weeks ago. It was nice to make a connection.

We have one more class to go, if Seth decides he wants to get a pump. He is researching, trying to figure out if it's right for him. There seem to be lots of pros and cons. Something else to learn!

Seth's story

Looking back, all the signs were there: weight loss, thirst, frequent urination, hunger. But they were masked by the fact that Seth has always been a skinny kid, has always had a big appetite, and was a lifeguard during summer. All lifeguards are thirsty and eat a lot. We were cautiously watching the weight loss, planning a check up with the doctor, just to be sure. Then he started getting sick on the day of his Eagle Court of Honor, August 19, 2012. He could barely keep his eyes open during the ceremony. I knew he was very ill.

Eagle Ceremony, Aug. 19

Jason called the doctor Monday morning, and scheduled the first available appointment, which was Wednesday. I took the day off from work to take him, then to attend a funeral that afternoon. The doctor was very thorough, I thought. Asked lots of questions, thorough physical exam, but no lab work. He ruled it a viral infection, possibly mono. Rest, plenty of fluids, should be good to go soon. We went home relieved. Fastforward about 36 hours. I came home from work on Thursday evening to this:

I cried and cried. Jason was at the Ranger game. I texted the picture to him. He got home as soon as possible. In the meantime, Josh was helping out. He was such an awesome big brother! We decided to have Seth at the doctor's office when they opened at 8 the next morning. Seth slept in our room that night, for the first time in about 16 years. We were up with him about every hour and a half, going to the restroom. Jason left about 6:30 Friday morning to get a couple of things done at work before we went to the doctor at 8. I got up, took one look at Seth in the early morning light and decided we couldn't wait until 8. I called Jason, he came right back home. I showered and quickly threw a bag together. Texted my department head and a dear friend from church. And called my mom. We headed to the ER.

Checking into the ER, Seth was so weak he couldn't even stand on the scale for a weight. They got him into a room quickly, and had a diagnosis in minutes. The glucometer in the ER simply read "Hi." They started 2 IVs, wide open, and insulin. We were getting transported to Children's Hospital in Dallas. Our dear friend Rachel came to the ER, contacted people from church, and stayed with us. Jason called his mom and step mom, I think. I really don't remember who called who. It's all a bit of a blur.

The transport team got there, and they had a little trouble getting a 6'6" 16 year old boy onto the pediatric transport stretcher. Then we were off to Children's. I knew how serious it was, but at the time I was very calm. God had his hand on me and kept me from falling apart. I rode in the ambulance, Jason and Rachel followed in their cars.

Once we got to Children's, we went through the ER for them to sign off on something, then straight to the ICU. Jason and Rachel met us there, and the attendant from the welcome desk came and whisked us away to fill out some paperwork. As we left the room, there were 6 nurses and 2 doctors working on my child. Later, it occurred to me....8 people were working on my kid!!!

The next 12 hours lasted a lifetime. A stream of nurses and doctors. The results of his blood sugar...935 when he first got to Children's. Which means it was much higher when we got to the ER. Facebook updates, texts, phone calls, visits. Assuring everyone he would be ok when I wasn't 100% sure of that yet myself. I spent the night, Jason went home so Josh wouldn't have to be alone. I pulled out the little couch and tried to sleep. Sleep wasn't easy....I didn't want to miss anything. I finally dozed off, and woke up to the sound of Seth's voice. That beautiful voice! It sounded tired, but normal! He was quizzing the nurse about what this and that was for. At that moment, I knew all would be ok.





He wanted to see what his view looked like, so I opened the blinds to this:

It's a terrible cell phone picture, but it symbolizes so much to me. There was peace in that ICU room that night, a peace that passes all understanding. I was able to get a little sleep after that. The next morning, he was so much better!  He needed to stay in ICU a little longer to get his sodium level back to normal (it spiked while they were rehydrating him).

Pictures from Saturday:

 The plan was for Jason to spend the night and for me to go home, but when it came time to leave, I couldn't. So we both stayed. I got more sleep that night, Jason got less.

On Sunday, my parents and my brother came, and they brought Josh.  They stayed a big part of the day. Seth got moved to a regular room on the endocrinology floor, my mom stayed with him so that Jason and I could get school started the next day.  She insisted that teachers shouldn't miss the first day of school.  I was too tired to argue with her.

Pictures from Sunday.  Left is sitting in a chair the first time, right is leaving ICU.

 Our great friend Michelle went to pick them up when he was discharged on Monday afternoon.

That first day of school was tough.  I think I cried in every class, but my students now know I am human.  I survived the day.  When I got home, Seth and Mom were there, Jason's mom and stepdad were there, and we had several visitors that evening.  It was a great evening, just exhausting!

He's home, and he just got his back to school haircut!  Thanks, Mrs. Norma!

Seth started school on Wednesday, Aug. 29.  His teachers are amazing, the school nurse has been great, and all the staff has just surrounded us both with love and support.  It has truly made it bearable.

First day of school, carrying his "shield against diabetes."

Friday, August 24, 2012 is a day that changed our lives forever.  In no way would anyone ever wish a chronic life threatening illness on their child, but I am thankful every day for the insulin that saved his life and will allow him to live a (mostly) normal life.  One day, we will indeed KDA!!!