Good Check-up for Ben

Ben had a good check-up! Ears have cleared up nicely & tubes are still in. He is 75th percentile in height & head circumference & 40% in weight, which is up from last time. Irony is that he looks like a butterball. She was perfectly fine with waiting until Ben is 2 on the MMR. She has been patient with an alternative schedule since his birth. She said that she didn't mind spreading them out as long as he got them. He is actually fairly caught up. He will get the MMR by itself at age 2 & we will draw titers then for one other. Then he should be set until age 4.

Andrew's numbers are improving & his attitude is too! :)

Vaccines

A friend sent me this link. It was so interesting that I just had to share! It is written by a doctor in Florida and is filled with interesting research. Slide 45 recommends waiting until age 2 on the MMR & "Do not vaccinate when there are signs of over-inflammation such as active wheeze, eczema, or allergy." Ben will be waiting until he is 2 and healthy!
http://www.slideshare.net/drdavid999/2009-08-15-vaccines-adverse-reactions-and-the-florida-law

Results?

Well, friends are starting to ask if the natural meds have helped, so I guess it is time to post. Actually, Andrew's BG numbers have been sky high since he took the flu shot. That happened before we started the Cell Food, so, yes, I think it is the shot. Two days after the shot, he felt achy & his ears hurt. He thought he might have an ear infection, so we took him to the peditrician. The doctor took a glance at him & said that looking at his eyes, she expected it was infection not the shot. Once she looked though, she couldn't find anything. Today is one week from the shot & his BGs are just now coming back into range. They are only coming into range because his basal rate is now 19% higher than last week. Other parents of T1Ds have noticed the same trend with shots, but doctors usually think it's a coincidence. The scary part of that is many times, once the increase is needed, the kids never go back to needing the smaller amount. Does that mean he just lost more islet cells???

Of course, there are other possibilities too. He got out of school the same day, so it could be because he doesn't have P.E. & recess. That theory is hard to believe if I admit that he has earned over an hour a day in Wii Fit & is plenty active. It could be the excitement & food associated with Christmas. It could be the Cell Food. Maybe it's helping his digestion & he is absorbing more without having insulin to cover the extra glucose. Maybe it isn't good for him at all.

The truth is, I'm not sure what is going on in his little body. I know that I need to watch him extra close right now & give lots of boluses & make changes in his basal. Even if it means all new basals & carb ratios, we will figure out what he needs.

Tomorrow Ben has his 18 month check up at the doctor. He is supposed to get lots of shots. However, his eczema is acting up again. We haven't found the true cause of the eczema, but it flares up when his body is stressed by infection or antibiotic. He just finished antibiotic for his ears on Friday, and he has lots of eczema. One theory on autoimmune disease triggors is that viruses (live or dead from the shots) leak into parts of the body (say pancreas). As the body tries to kill the virus, it ends up attacking itself too. Some theorize that this is especially true for kids on or recently on antibiotics. I don't know, but I'd rather wait until Ben is completely healthy. Let's hope the pediatrician agrees!

Natural Med News

After finishing Andrew's appointment, we headed to a new place - Breath of Life. TI was very kind. She ran an electro-dermal screening (EDS) on Andrew. I have mixed feelings about the EDS. The screening is based on some sort of electrical current completing a circuit through acupuncture points. I won't pretend to understand it. You can read more about it at http://www.amomentspeace.net/tibishop/electrodermal.htm. I have had a couple of friends have very good results from getting a screening done. On the other hand, traditional medicine is not a fan. Most of his systems came up "red". He came up deficient in the vitamin D & calcium, which is okay since those are some of the supplements shown to help diabetics. I just got the generic of Viactin chews to help with that. She also thought he may have some issues with parasites & yeast. The yeast didn't surprise me. We are doing some kind of probiotic each day - kefir, yogurt, culturelle. I am very comfortable with those because we've used those with antibiotics before. Mom even switched Ben to sweet acidophilus milk recently during a little cold. When we gave him regular milk the next day, he regressed.

The parasite news scared me. My fear was what did she want me to do to my child to get rid of something I couldn't prove he had? She recommended Cell Food. It looked innocent enough & isn't supposed to have side effects. It is safe to take even if you don't have parasites. The bottle says it is a dietary supplement with dissolved oxygen, trace minerals, plant source amino acids & enzymes. He is to take 10 drops in water twice a day until the bottle is gone. Then he done. He took it last night & said he couldn't taste it. I've done an internet search & it seems okay. We will try it & see. She asked Andrew if he gets stomachaches. He said no, & she was surprised. The truth is, yes, he does. That is why I've worried about celiac. It will be interesting to see if the stomachaches disappear!

Vanderbilt Day

Kaitlyn's OGTT was moved to the Vanderbilt Children's Hospital Doctor's Tower instead of the Medical Arts Center. It was the first time we had been in the hospital proper since Andrew's diagnosis. We got to go through the underground tunnel on the way there. The kids enjoyed the Christmas decorations & train, gift shop, etc. It was fun to see something different. Kaitlyn was a trooper as always. She always acts so mature about it. I'm very proud of her! Her fasting BG was 80, which is perfectly normal. We won't hear about the other readings for a few days, but I don't expect any problems. She and Andrew seemed to enjoy the day together. On the way home, Andrew asked if he could unbuckle & move seats. He moved to the back row of the van with Kaitlyn. They laughed and carried on like best friends. I couldn't help but smile.

Andrew's check-up went well too. His A1c was 7.4 - down another tenth of a point from last time for another all-time low! With all the Christmas parties and a site that pulled out the day before, we weren't sure how it would be. Anything 7.5 or below is good for a child, so we are happy. They approved of our basal changes. The only change they made was the correction factor. That meant new school orders, which the school nurse asked us to get hard copies of. School orders would still be Vanderbilt's weakness. However, they got them right on the second try.

I told each person we saw that we were looking into supplements that afternoon & asked for their recommendations. No one seemed counter to the idea. Kaitlyn's questionairre even asked whether she was taking extra niacin, etc. I asked if putting her on some supplements would prevent her from participating & they said not unless she was on some extreme dosages. The general consensus was that both kids should have extra vitamin D, calcium, & fish oil. They even recommended the Viactin chews with vitamin D & calcium together. We have to count the carbs for Andrew of course. They also gave Andrew a seasonal flu shot before he left.

Kaitlyn Carbs Counts for Vanderbilt Day

Tuesday will be a long day at Vanderbilt. Kaitlyn has her oral glucose tolerance test from 9 am until almost 1 pm. Andrew sees the doctor at 1:40. Then he sees a certified nutritional counselor at 4:00 for an electrodermal screening. It should be interesting. We were told that Kaitlyn needs to eat at least 150g of carbs per day for the three days leading up to her test. She decided that she wanted to carb count this time. She hit 150g before dinner today! Much of that is due to some mint chocolate hot cocoa mix that Gene brought home from one of his students. She also had a juice pouch & chips after cheerleading today.

I'm a little nervous about Tuesday. I hope Andrew's A1c will be good. We have struggled for awhile trying to make the changes that were recommended after the iPro work for Andrew. We finally quit & went back to what we were doing before except for pre-bolusing at least part of all meals. I'm not sure how all that will affect the A1c. After Kaitlyn's last OGTT, we got a call saying that everything had checked out just fine. It was the first time that was the only news & I realized that was the purpose of the call. It is just a little chilling to realize that one of these visits could yield a more upsetting result. She is doing great & showing no symptoms, so I expect no problems. She even checked her BG a few weeks ago. She came & asked me, "Isn't thirst one the symptoms?" I told her it was, but it is also normal to be thirsty sometimes. She checked just to be sure & her BG was perfectly normal.

Donate Bone Marrow!

AJ was on Andrew's baseball team last Spring & was diagnosed with aplastic anemia. His life was saved by a bone marrow transplant from his brother. This is copied from his blog:

Austin's bone marrow saved my life! I was lucky to have a sibling match. But some people do not have matches in their family. They have to have strangers that help them. Maybe you could be one of those strangers who saves a live. Please join the bone marrow registry. It is free from now until the rest of the year. It is my Christmas wish to get at least 100 people to join the registry. Please help me reach this goal. The National Bone Marrow Registry has set up a special link to help me reach my goal.
Here is how to do it:
1. Log on to http://join.marrow.org/ajchristmaswish
2. Follow the directions.
3. They will send you a packet to complete and swabs for your cheeks.
4. Mail it back. You are one the registry. It is easy.
Austin is only 5 and he did! So can you! Remember you can help save a life.
AJ

It is normally $100 to register, but it is free until the end of the year. I joined, and it was easy! You have to be over 18 to join, but Andrew will never be able to join because he takes insulin. Anyone want to join for him? It's for a great cause! If you are interested, AJ's blog is wonderful & I learned a lot from it! http://ajrevera.blogspot.com/

Happy Thanksgiving!

We had a great Thanksgiving! I am thankful for family & friends, for our Savior & church, and our many blessings! We are blessed in so many ways and had a great day celebrating with family!

This was Andrew's second Thanksgiving with diabetes & the first on a pump. I am thankful that the pump gave us more flexibility in planning Thanksgiving. We planned to eat when it was most convenient for everyone to come without worrying if it matched Andrew's normal mealtime. I was thankful to serve dessert when we were ready instead of trying to decide whether to serve it immediately when everyone is stuffed so that Andrew could take one shot or wait 3 hours when Andrew could have another shot. I have Thanksgiving dinner carb counted & a card similar to his school lunch card where he could eat like the other kids & record what he took. It cut down on "diabetes talk" at the table. It felt like a normal holiday!

I'm thankful for the normalcy that the pump has given us, but then on Saturday morning Andrew went from 171 at 2 am to 374 with large ketones at 7:41 am. The site looked fine, but changing it fixed the problem. It made for a rough couple hours for Andrew. He was starving (symptom), but I wanted him to wait a little while to let the insulin work before sending his BG higher. He wanted to help carry Christmas boxes down from the attic, but you can't exercise with ketones. Have I mentioned that high BG makes you irritable? I was reminded that even a artificial pancreas is just a fancy pump. Fancy pump sites will still have problems. I'm thankful that someone out there is working even now on a real cure!

Sometimes You Just Have To Laugh

Today was one of THOSE days. :) School hadn't even started when a student brought my phone out in the hall. It was the school nurse - Andrew's site had come out of his leg. I found someone to watch my class so that I could go put in a new site. The nurse watched as I had Andrew prepare most of it, and then she actually pushed the buttons to insert it. I finished it from there. The nurse said that if she wrote down the steps next time (there are 15 steps according to the manual I plan to give her), she could do it so I wouldn't have to come anymore. Sounded good to me! As I reloaded the insulin cartridge, the first alarm went off. Low insulin - less than 30 units. No problem. He uses less than that in an entire day. Then another alarm went off - low battery. Okay. I was glad I was there, because you have to change the battery right away and then the pump has to be reloaded, primed, etc. Problem solved & Andrew and I head back to class.

About 1:50 pm, the phone rings in my classroom. It's Andrew's school nurse again. Andrew was slipping his pump down his shirt so that the tubing wouldn't get snagged during recess. He accidently dropped the pump, and it ripped the site out again! This is a record! I have always found someone to cover & gone immediately - he does have to have insulin. This time, I looked at the clock. Gene has 7th period planning, so his students would be gone by 2:00. I had students until 3:27. Dad gets this one. Gene has only done a handful of site changes, so I felt bad for both of them.

Andrew gives Gene an A+ on inserting the site. However, since this was now the second time we had to prime the pump, when Gene went to fill the new tubing with insulin, there wasn't enough! We had emergency insulin at school, but it wasn't a vial. It was a cartridge used to fill one of his old insulin pens. Gene assembled the needle, filled it with air, and inserted it into the cartridge just like he would a vial. I'm laughing even as I write this. The pressure of the air inside the already packed cartridge blew the cork off the end of it and spilt insulin all over Gene. Gene somehow got enough insulin into the pump. When Gene went to remove the blue plunger (you can see it in the pictures of a site change), instead of snapping off, it crumbled into broken bits of plastic. Between the two changes, that's more problems than I realized were possible with site changes! Miraculously, both sites were good and Andrew's numbers have been fine.

Andrew has been wearing his pump during basketball practice. On his way in tonight, Andrew asked, "Can I take my pump off so I don't rip off the site?" Given today, I thought it was a good idea!

Natural Med???

Okay... Andrew now has an official appointment with a "certified nutritional counselor" for December 22nd after Andrew meets with his endocrinologist. She is in Franklin, TN and was recommended to me by a friend that I met through this blog (Hi!). This friend took her daughter with T1D to her and it helped. She made the recommendation months ago, but we have taken awhile to come around. One of our closest friends has seen great results for her children through a natural med doctor. I do feel like this is what we are supposed to do next. Yet, sometimes I still think, "Are we crazy?" This area is harder to blog about, because I don't know where it is going. I also run the risk of sounding hypocritical. Some days, I believe doctors know what they are doing & some days I don't. The same is true for natural med. Just for the record- I am not a doctor & I reserve the right to change my mind! :)

Gluten

Gluten is a special type of protein commonly found in rye, wheat, and barley. There is a definite link between gluten & type 1 diabetes, but it is uncertain what the link is. Some suspect that early exposure to gluten is one of the environmental triggers for the disease. Being type 1 diabetic gives you a 1 in 10 chance of developing celiac disease, an intolerance of gluten. My sister and a couple of great aunts have celiac. For these reasons, we kept Ben gluten-free for his first year of life. Andrew has been tested twice for celiac antibodies and has tested negative both times. Still, I wish it were easier to eat gluten-free!

Don't give gluten to infants!- http://www.ncbi.nlm.nih.gov/pubmed/14519706
GF diet doesn't prevent T1D once antibodies start -http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783529/

Update

AJ is better! Thanks for praying! Today was busy with correspondence with nurses from school & Vanderbilt, but everything is working out well.

AJ & iPro charts

I don't know the details about AJ, but I heard that his fever broke last night! Praise God, and please keep praying!

I love the faxed iPro charts that I got at school this morning! One interesting fact - Andrew's highest peaks are always after school lunch! Since I see good readings at 11:15 & 2:15 every day, I didn't expect it. Because of having to return to the nurse after the meal for carb counting, his lunch bolus is often as much as thirty-five minutes past the beginning of the meal! Meanwhile, his BG is soaring really high before falling quickly! It's hard to predict what kids will eat, so Vanderbilt suggests bolusing right after a meal. At home, we can bolus quicker. I will ask the school nurse to bolus for BG & 30g of carbs before lunch. Then after lunch he can accurately count the total carbs he ate and bolus for the remainder. He is a good eater & has NEVER consumed fewer than 30g of school lunch. A friend of ours used this approach with her child. This can't be done very well with shots. Multiple site injections metabolized quicker for Andrew and always drove him low. In the pump, it doesn't seem to make a difference since it all goes in the same site anyway.

Andrew has gone low between 4 & 6 pm the last couple of days. We're not sure if it is because of the increased basal or because he is loving his new Ripstik! We are going to try a decreased basal when he plays the Ripstik & see what happens. Life is full of experiments!

Please Pray for AJ!

AJ was on Andrew's baseball team last Spring. Just after practices began, AJ got sick and then was diagnosed with aplastic anemia. He was unable to play for fear that any injury could cause unstoppable bleeding. He had a bone marrow transplant this summer. He has done very well so far, but is running a fever for the first time today. He is still on immunosuppressant drugs. He cannot go to school or anywhere with large groups of people because of the risk of infection, so this is obviously not a good sign.

Andrew has followed AJ's story on his blog. It has been sweet to watch Andrew care & pray for his friend. AJ went to Vanderbilt Children's hospital, which was where Andrew was, but in Andrew's words, "What AJ has is much worse!" This young man has been a trooper in very difficult circumstances. He and his family could use your prayers tonight & tomorrow as they likely head back to Vanderbilt. Thank you for your prayers!

Happy Birthday, Andrew!

Andrew had a good birthday! His BG didn't, but he & his BG are not synonymous. Andrew was happy most of the day. A friend who couldn't make it to his party came by in the morning & dropped off a stunt remote control car. It is a hit with all the boys! He got the lunch of his choice followed by gifts from grandparents and his great aunt & uncle. He had the afternoon to enjoy those, and then he had a party in the evening at Pump It Up. He enjoyed his day, and the rest of us did, too! I thank God for nine years of blessing through Andrew! Although I am about to share with you how diabetes affects a birthday, neither Andrew nor I will probably remember the diabetic details soon. Birthdays are still about thanking God for blessings and enjoying friends and family. Those are the memories we cherish & diabetes is just one of the things we try to take care of so that the important things can remain important. I do think it is interesting though that Andrew's birthday (November 14th) is World Diabetes Day!

Andrew wanted "lots of Domino's pizza" for lunch. Pizza had high carbs & high fat, which is always hard to handle. The high carb needs lots of insulin, but high fat takes longer to digest, so the insulin need is spread out. The pump has a great combo feature where you can give say 65% of the dose now & the remaining 35% over the next 3 hours. It's great - once you have it figured out! The lunch ratio had been 1:18, but Ann recommended 1:20 with the changes. After Friday night, we changed it to 1:19 instead. It still wasn't enough. He ran high through the afternoon. When the party started, he was jumping around & falling often, so I had him take the pump off. Soon all that exercise kicked in, and he was low - BG 48. He doesn't mind being low at home. It is a good excuse to eat sugar. He will sit & talk to us or watch tv until his BG comes up. It was a lot harder to be still at a birthday party! He said he felt better & retested in efforts to convince me he was coming up. BG - 50. The time stamp revealed that it had only been 6 minutes. I agreed to a glucose tablet to help him get up faster. In a few minutes, he looked better & went off to play. I didn't worry about complex carbs because we would be eating cake in less than an hour. I probably should have because he ended up low a second time. He had some more sugar & soon it was time for cake. He reconnected his pump in the party room & ate cake like everyone else.

iPro Results!

I was excited to get an email at work today saying the results were ready from the iPro & that we could discuss them over the phone instead of driving to Nashville!!! Ann (the nurse) called me on my way home & said the iPro showed that Andrew is running too high for the first two hours after every meal & then dropping too low. She recommends raising the basal rate to assist with the after meal highs, but then reducing the carb ratio so that he doesn't drop so low 3 hours post meal. It sounds logical to us, & we were very excited to have something to try. She also made some changes to his nighttime regimen. I was feeling great about it, but so far the results haven't been good:

5:14 56; ate 2 hard candies from low box. Dinner followed shortly after. Programmed pump with new settings.
5:58 Bolus for dinner at higher carb ratio;
7:29 327 Bolus for BG & drink
8:36 401 Bolus
We were at the Bob Jones football game & left after the third quarter because he wasn't feeling well from the high BG. We listened to the Patriot victory on the radio, and it did save us a lot of time in getting out of the parking lot!

Andrew could be rebounding from the low earlier. No ketones. I will keep a watch on him through the night. I would so love to sleep through the night again! I checked him just after midnight last night because he had been running high. He was doing great, so I planned on sleeping through until morning. I woke up around 2 am, so I asked the Lord if He had woken me to check on Andrew. Sure enough, Andrew's BG was 48. Please pray for Andrew! Please pray for wisdom as we seek to make the right changes. Please pray that he can enjoy his birthday tomorrow. I hope he doesn't feel this badly at his party. He asked me at the game tonight, "Can I go to my party if my BG is still high tomorrow?" Of course, the answer is yes.

Pictures of a Site Change

We have some friends who are considering a pump, so we took pictures of one of Andrew's recent site changes. Here are all the supplies:

Insulin,
Insulin Cartridge pack,
IV Prep,
Alcohol Swab,
Inset for site (round case),
Tubing is coiled inside this site, but comes in a separate pack for others

We use the alcohol swab to clean the top of the insulin vial. Then we open the cartridge pack, attach the needle, & plunger and use it to draw up the insulin. Andrew can do this step himself!

Then it is time to choose a location for the site. We rotate right arm, right hip, right thigh, left thigh, left hip, left arm. We can also use his stomach, but his stomach needs a break for awhile. Andrew uses the IV Prep to clean the area. It also leaves a sticky residue which helps the site stay in place. Once we open the round case, we unwind the tubing, remove the cover over the needle, peel off the sticker, and pull it back to cock the needle. We are ready to go!
Now comes the L..O...N.....G count to 1, 2, th....r...e..........e before I push the buttons to insert the site. Once the site is in, we remove the tubing that is attached. The tubing goes through the cap of the pump & connects to the insulin cartridge. The insulin then slides in its slot & the cap is screwed on tight. The pump loads the cartridge and automatically detects the number of units of insulin in the cartidge.

Priming the pump is filling the tubing that you see with insulin. We also fill the cannula, which is the part of the tubing under Andrew's skin which you can't see. Now the pump is full of insulin and ready to pump it out through the tubing and into Andrew in little bits per hour or as needed for meals. It can be removed for baths, swimming, or contact sports, but for the most part, the pump is his constant friend.

Goodbye iPro

We took the iPro out of Andrew Tuesday morning. We are all glad to see it go! Andrew has been good and has not had a single piece of candy with it in even though it was Halloween weekend. We went to the carnival this year, so he didn't get that much candy anyway. They did go to the cake walk, so he still had sweets. We wanted to get good information from the iPro experiment, so we still had a pizza party & stuff we normally do.

Most of the time he had pretty good numbers while the iPro was in. Sunday afternoon & evening his numbers were great, but he ran non-stop. I just knew he was going to go low if I didn't turn down the basal. The previous Sunday he had gone low after AWANA even without all the other exercise. I turned it down 10% at 10:30 pm & rechecked him at 2 am. BG 330. I guess that was a bad call. Monday night, Andrew had his first basketball practice. It was only an hour long, and they really didn't run that much. Given what happened Sunday night, I didn't turn down the basal. At 2 am, he was low. After juice & 15 minutes, he was still low. Finally, 15 minutes later, his BG was up! Andrew woke up that morning with high BG & ketones. I had the nurse recheck him at 2 hours after breakfast to make sure the site was okay. However, his BG hit 41 first. After juice, it was 38.

Andrew slept between checks & snacks in the middle of the night, but I was tired & cranky Tuesday! However, I am thankful that we got some of those crazy nights recorded. Maybe the data will help us make some good changes. Maybe we can even sleep through the night soon!

Artificial Pancreas Someday

Wearing the iPro & the pump reminds me often of the possibility of an artificial pancreas. An artifical pancreas will sense the glucose like the iPro, send it to a computer algorithm, which then tells the pump much insulin to give or withhold. I've been reading tonight, and they have already done this on teenagers overnight! There are still issues, but the research is very exciting! I don't think Andrew would be excited, though. It's not fun to wear all the machinery. What is exciting is that doctors think they can get much better control than anything we can do right now. That is good news for his eyes, heart, kidneys, nerves, etc. Here is an interesting link to read: http://www.endocrinetoday.com/view.aspx?rid=43543

One doctor thought the first models will be available in five years. Insurance won't cover it for longer than that. They are just now starting to cover continous glucose monitoring, and even the best companies only cover 80%. I hear that the CGM supplies cost even more than the pump supplies.



In the meantime, Andrew continues to live an active life. Here he is with his trophy from tonight's end of year soccer party with Gene, who helped coach his team. Andrew starts basketball on Tuesday!

Bionic Boy!

Andrew is wearing his iPro on the left & his pump site on the right. We have nicknamed him bionic boy! The insertion hurt, & he fought tears for a few minutes. Still, he was brave! The people at Vanderbilt were great! The Child Life Specialist designed a scavenger hunt for all the patients who have come in the last few weeks. Andrew got to explore the clinic and meet lab techs, phone nurses, & even see the adult side. Each station gave him a small prize. At the last stop, he got to pick a blanket! It was really sweet and helped make a dreaded visit for him a special one! All my kids love the Child Life Specialist & love playing in her playroom. She helps them learn about diabetes & helps kids cope with living with a chronic disease.

The tape over the iPro is driving Andrew crazy! However, we want to keep it in until Monday night or Tuesday morning. Even though the sensor is recording all the readings on the chip, we don't see anything. They also want to compare the interstitial glucose with blood glucose, so we are actually testing more often! He pricks his finger before breakfast, 2 hours after breakfast, after P.E. (safety check, not iPro related), before lunch, 2 hours after lunch/before loading bus, before dinner, 2 hours after dinner, before we go to bed, and at 2 am. He had a couple extra today because of going low. Counting the site change, he will have been pricked with a needle eleven times today. All of the BG readings have to be done with Vanderbilt's meter, which we will actually mail back to them along with the iPro. That means the meter has to go with him to school & back each day. I was nervous about him remembering to bring it home, so I handed him the meter this morning & explained how important it was that he keep up with it. My phone rang at school first block. The meter was still at home. I spent another planning period running to Legacy. Andrew came to nurse (low) while I was there, so at least I got to see him.

Since this office visit was so much shorter than most, we stopped by the Nashville Zoo when we were finished! It was Andrew's first time at the zoo, & it was precious to spend that time with him! The temperature was comfortable & it wasn't at all crowded. I wished all the kids could have been there, but I also enjoyed spending one-on-one time with Andrew. He enjoyed all the animals, but his favorite one was Amber. He still wants to bring her home!

He also enjoyed the playground. He loved this slide, and I have to confess it was fun! Andrew is standing on the slide so that you see how big it is!
It was a great day, full of lots of blessings. God's creation is amazing, and His mercies are new every morning!

iPro

Andrew goes to Vanderbilt on Wednesday to get his first iPro! It is a new CGM (continuous glucose monitor) that will measure the glucose in his tissue every few minutes. He will only wear it for a week. We won't see the readings, but they will be recorded on a chip that will get returned to the doctor. Then we will return to Vanderbilt to get results and recommendations to fine tune his insulin regimen. I think it will be very helpful. Andrew is less excited. I mentioned the iPro a month ago & he immediately responded, "How big is the needle?" We told him this morning that he's going on Wednesday. He didn't say much, but I know he's scared. I think it will be a lot like getting a site. Some don't really bother him & others really hurt. I hope the iPro goes in easily for him!

Caught Up!

October 26, 2009. This blog is finally caught up with the present. I am surprised that anyone is still reading this, but it has been great fun to write. I plan to write about our adventure with the iPro since that starts on Wednesday.

Life is pretty routine now, although it still has its ups and downs. Today, Andrew's BG was 66 at 2 am. I gave him 15g juice & rechecked in 15 minutes. His BG was 59. I'm glad I was checking him! I have no idea why he dropped so low. Maybe he was more active at AWANA than I knew. I gave him more juice, waited 15 more minutes, retested, and gave him a small more complex snack. Andrew woke up with BG in the 200s. His BG was still high mid-morning, so the school nurse corrected. Sometime after 10 am, he felt low & asked to go to the nurse. On the way, his site pulled out of his leg. The nurse called me, & I left school to go change his site. By next year, he will be able to do it himself. The nurse watched, so she might be able to help him too. Since he was low, I walked him to the lunchroom before returning to school. When I got home, Andrew had gone to a new friend's house. My first thought was, "What about his diabetes?" Gene explained that he had taken his supplies & the mom seemed knowledgable. I was happy that Andrew might have another safe place to play. Then, after he got home, he had left his diabetic bag in their car. After driving to their house & not finding it, he remembered he had left it upstairs in our playroom. Where was it really? In the laundry room, which is actually where it is supposed to be so that it is handy from the kitchen or on the way out the door. Diabetes still makes me tired, and I'm not even the one who has it!

Back To School

Andrew returned to a new teacher & a new nurse. Both have been wonderful to Andrew. The only surprise was that the teacher gives candy EVERY day if the kids behave. She offered to give Andrew stickers instead, but that's just not right. We didn't want Andrew eating candy everyday, so we had him take the candy to the nurse to be used for lows. Then he wanted to argue about what to eat when he was low. Now, he takes his candy to the nurse at the end of the day. She keeps it and sends it home in a bag with a list every other Friday. We put it in his "low box" here at home. It is where all the candy that he gets at birthday parties & holidays goes. If he is low, he enjoys some candy. We have NEVER had to buy anything for the low box. We do buy lots of juice boxes because we use those if he is <60.

I go to school the first week of school and read Taking Diabetes To School to Andrew's class. It helps prevent problems of misconceptions by educating his friends. Most of the kids have been fantastic. Sometimes an overzealous friend will drive him crazy asking, "Are you low??? You look high, etc." Yes, we realize that in the next few years we need to quit asking our son if he is high.

Sweet Summer

Summer was a wonderful time of healing & rest. Andrew loved to sleep late & eat a late breakfast, so we had lots of opportunities to tweak his morning basal rates. It was a relaxing time for all of us. We had to relearn what the pool would do to his BG since he took his pump off to swim. The first time that he went swimming, he didn't want his site to show. Then he went to camp & most of the kids had sites showing. From then on, he didn't care if it showed at our neighborhood pool. He wore a swimshirt when he went to a birthday swim party. Some friends at church had a backyard Bible club at the end of the summer. I let the kids go without me & gave them a cell phone to call if they needed anything. The house wasn't far away & it was only 2 hours long. There was a snack that Andrew ate & they carb counted. They can read labels & had a book for other things. I think they called me on the homemade cookies. One day, he said that he ate cookies & a lollipop for snack. I wasn't thrilled, but he had carb counted it well & bolused for it. His BG was doing fine. Andrew will have to live with this disease until they find a cure. Learning to manage temptations & keep his BG in line is an important skill. Hopefully, he won't always think cookies & lollipops are a snack. In the meantime, Kaitlyn & Andrew loved being trusted & seemed honest when telling us what they had done when I picked them up. It was a good learning experience.

Baseball Tournament

Andrew made it back from camp in time for his tournament game. His BG had been fine since I picked him up & reconnected the pump. He was excited to play. His team, the White Sox, had lost one tournament game while he was at camp. Tonight's game would put them in the finals, playing the team they lost against. Andrew did fine playing, but he looked like he felt bad & his body language was horrible. One of the other parents commented that he might just be tired from camp. He was tired. But there was something else. He acted like he did last year when I was convinced that baseball was bad for his health. Back when he was on Lantus. I don't think he ever felt well on Lantus, especially if he was out in the heat. He acted like he felt so much better on the pump. He loved being able to eat snacks with his team, which he had not been able to do most of the year before.

The White Sox won their game that night. They played the Red Sox for the championship the next day. They beat them the first time, and then, because it was a double elimination game & we had lost to them before, they took a short break & beat them again! Congratulations, White Sox!!!

Camp Was Great!

Finally, I got to see Andrew! It was so good to see him! He had so much fun! He had enjoyed boating, fishing, archery, rifles, swimming, ropes courses, tubing, crafts, games, & more. Many of those things he had never done before. He walked with a new confidence too. He had learned that he was okay without us & he had felt completely normal for a week. Everyone had taken their BG, had highs or lows, counted carbs, and it was just a normal part of life. My prayer had been for him as he got site changes. God answered that prayer through his problems & frequent site changes! He learned to put in his own site & had learned by observing his new friends how to handle sites in new places. Prior to camp, we were rotating sites around his stomach & rear. His friends used their arms for sites too, so Andrew tried it & loves it! They taught him how to drop the tubing down in his clothes to make it work. His friends used their thighs too, so Andrew tried that when he got home. What would have been a battle to make him try at home came naturally when he saw other kids do what was normal for them. The bad BG numbers from camp are long gone, but the positive affects of being around other diabetic kids are still here. It was one more reminder that life is more than numbers. Camp was good for Andrew!

Problems At Camp

I was excited to pick Andrew up on Friday morning. I got there early to be one of the first in line to pick him up. That was partly from eagerness & partly because he had a baseball game in the evening. We had to meet with the doctors/nurses first & go over BG numbers before getting our children. The lady who pulled out Andrew's chart explained that the doctor had decided Andrew's pump might be broken & had put him back on shots (What???). The doctor next to her leaned over & said, "Is this Andrew's Mom?" (Over 100 diabetic kids here, and you're looking for me. GREAT!). Apparently, Andrew's numbers had run high much of the week. They had changed Andrew's site again & again with no luck. When he was "High, over 600" the previous evening around 9 p.m., they discontinued the pump & gave him 8u Lantus, the 24 hour insulin. The doctor explained that I could try the pump again at the 24 hour mark. I explained that Andrew had only been off of Lantus since January & needed 11.5u then. 8u wasn't going to work, as his morning BG proved. The doctor explained that they weren't sure what dose to give & needed to be cautious. (You could have called me! I could have told you what dose he had been on!!!) I didn't say anything in the parentheses of this post. I replied, "I understand, but I need some advice. Andrew has to play in a tournament ball game tonight, and I don't want him to feel horrible. 8u Lantus isn't going to be enough. What do you recommend that I do to get through the day?" When I finally got to see Andrew, we reconnected his pump & ran it at 50% because of the Lantus.

Andrew's pump wasn't broken. Once he got home, everything returned to normal. Andrew is very competitive & his BG goes up when he competes. Most kids were going low because of activity, so Andrew was unusual. He did have one low while he was there - the lowest low he has ever had. I think he said it was in the 20s. He was fine, but he said his counselor carried him back to the cabin because they didn't want him to exercise at all, not even to walk. Andrew liked that.

Checking In - Tuesday of Camp

I decided to call Tuesday & check on Andrew. The nurse who answered the phone said she hadn't seen him, and that was a good sign. She would have another nurse call back with how his numbers had been. The nurse who called back was very nice. She said that his numbers had been high Monday night, but they had corrected him & he was doing better that day. I got the sense from talking to her that she had probably never met Andrew. I understand. I can't imagine how they manage over 100 diabetic children! I decided not to bother calling again. I prayed for him & his site changes. That was his biggest fear about camp. He had never let anyone other than me do a site change. We had changed it right before he left in hopes that he would only have to change it once. When we checked in, they told him that it would be changed every other day at camp. He was not happy!

First Diabetes Camp

Several people told us that it was very important that Andrew go to diabetes camp. The first year, he was only seven, Ben had just been born, and it was VBS week. This year seemed to be a good time. We drove down to Camp ASCCA (Alabama Special Camp for Children And Adults) in Jackson's Gap on Sunday afternoon. The camp is beautiful & has lots to do. We stood in line to check in medications, check BG & temperature, lice check, vision check, nutritionist check, etc. Then Andrew got to go to his cabin, which was nice, but unairconditioned. We unpacked everything & then headed to the meeting for parents. They explained that we would not be able to call & talk to our child. We could call & talk to the nurse about how the diabetes was going, but we would not be able to call our kids & they would not be able to call us. I didn't think Andrew would suffer from homesickness too badly. Surely, a diabetes camp full of doctors & nurses could handle his diabetes. I figured that he would be fine, but I wasn't too happy about not seeing my baby again until Friday. Suddenly, I could sense how little time I left with my kids before I drop them off at college. Scary thought!

Memorial Day Weekend Fast & Feast

Throughout the Spring, Andrew had strange episodes of highs with ketones & yet still lows other times. I struggled with the frequent feeling that things weren't right. Vanderbilt tested for celiac & other reasons that he wasn't regulating better. Thankfully, those results all came back fine. Finally, I got to speak with Ann, who has always been the best nurse for Ann. She asked us to raise Andrew's basal & do a basal check & email her the results. So that Saturday morning, we raised Andrew's morning basal rate from .075u/hr to .375u/hr, which is a huge jump, but was closer to his other hourly rates. Andrew skipped breakfast that morning & let us check his BG every hour. His BG actually drifted up a little each hour showing he actually needed a little more insulin each hour.

As a reward for skipping breakfast & doing the basal check, we promised Andrew we would go to Shoney's and let him eat the breakfast buffet. We let him eat whatever he wanted, but he had to have sugar-free syrup & drinks. Please don't ask how many carbs he ate!!!

This was a wonderful experiment for us! It explained so many of Andrew's problems. The lack of sufficient basal insulin was why he had gotten so ill with strep. It was why he kept having ketones. We had lots of opportinities to test his basal during the summer, and we were able to finally get it right. I found some pictures of him around his diagnosis & he looked so frail to me. He got better, but it wasn't until this past summer that I noticed him putting muscle back on & looking more like himself!

Broken Pump

The day after the wrestling, Andrew commented that his screen wasn't as bright. I still figured it was a setting change from changing the battery. At 1 am, I checked his BG & it was a little high. I wanted to cancel the -20% basal we had set from playing baseball so I pulled the pump out of Andrew's pocket. I couldn't read it! I turned out the light & could barely see well enough to cancel the temp basal. I still wondered if it was the battery change, so I found the new battery cap & replaced it. No improvement. I pulled out the manual & reset the screen using keystrokes from the book since I couldn't see the screen. Finally, I woke Gene. He looked at & said, "It says pump not primed." You have to reprime it everytime you replace the battery & I couldn't see the reminder! If Gene hadn't been able to make it out, he wouldn't have had any insulin the rest of the night. Finally, we called Animas, the producer of our pump. I felt really silly calling the person on call because our screen was too dim! The lady who called back was very nice & assured us that is why they provide 24 hour support. She agreed the pump was broken & ordered us a new one. That was 2 am on May 12th. The new pump was delivered to my school May 13th at no charge!

Wrestling

One afternoon, we let the kids wrestle in the family room. I remember thinking that I should make Andrew take his pump off, but they seemed to be doing okay. Then the neighbors invited Andrew to play at their house. Andrew "fell off the bed" twice (No, Mom, we weren't wrestling!). Andrew mentioned it because his arm hurt. We didn't think much about it until his bedtime BG - 578 with small ketones. When I checked the site on his bottom, it had completely ripped out! "Oh, I forgot. I hit my site when I fell off the bed." It was fixed by a new site, but his BG read High before it all got cleared up. Then he was 48 in his sleep. That night when I changed his site, I also changed the insulin & the battery. I thought the backlight looked more green than usual, but then I decided that it was just my imagination. It wasn't!

Strep Throat

In mid April, Andrew woke up not feeling well with a sore throat. Kaitlyn had just had strep throat, so I took him to the pediatrician to be tested. The quick test was negative. I wasn't surprised the next morning when the phone rang. It was the nurse telling me that Andrew's culture was positive, and he did have strep. She called in some antibiotics. Before I could get out of the building, my cell phone rang. It was the school nurse. Andrew was in her office throwing up. Vomiting is not good for diabetes. It can trigger ketones, which trigger vomiting, which triggers dehydration, which triggers ketones, etc. I called the doctor back to say it was too late for oral medication. When I picked Andrew up, he was pitiful! He was getting sick every couple minutes. I ran by the house to get his supplies & give him Emetrol. Emetrol didn't help at all. We went to the doctor for a shot of antibiotic. FYI, a child who has taken 1,460 insulin shots a year can still be needlephobic! They also gave us a presciption of Zofran, which from the insert looks like it is used mostly for chemo patients. We went straight to the pharmacy which said that it would take nearly an hour to fill the prescription. I cannot explain what it was like to watch Andrew for those few hours. It took my breath away and still does. Andrew got sicker in a matter of hours than he was at diagnosis. I don't know what his ketone levels were while I was driving him around waiting on the Zofran. Thankfully, Zofran is a fantastic drug!!! I got him home, gave him Zofran, and the vomiting stopped. After he settled down, I remembered to check for ketones. His urine ketones were large! I checked blood ketones & they were still 1.8. On that scale, 2.o means head to the hospital. He was coming down fast enough that I'm sure he was over that at the peak. Andrew cleared his ketones around dinner time. Once he hit the 24 hour mark, he was no longer contagious & went back to regular activities. However, his little body was worn out. The next day, he had ketones every time he ate a meal! He played baseball on Saturday, but that was hard on him too. It took days before he seemed okay to me.

I remember when Andrew was newly diagnosed, a couple who are parents of two diabetic children offered us advice. "Someday, there will be an illness that you can't stay on top of. When you get the ER, just mention DKA (diabetic ketoacidocis) & they will get right to you." It scared me at the time, but it might just be good to know!

Lows, Lows, and More Lows

Once we switched to straight sites instead of the angled ones, our user error went way down. February went fairly well. Once March hit, it started to warm up, baseball started, and Andrew began to fight tons of lows. We kept turning down basal, adjusting meal ratios, and were calling Vanderbilt all the time. Again, thank you God for a student teacher! Finally, one Vanderbilt nurse told us to turn down the basal immediately whenever he had a low until we could get them to stop. The school nurse didn't program pumps, so that meant leaving school & turning down Andrew's basal at school, on the ballfield, etc. He went 2 solid weeks with multiple lows every day. Of particular concern were school mornings. His basal was turned down to literally almost nothing (.050u/hr) & he still had lows. His BG was still high at 2 hours post breakfast so it didn't seem wise to drop the breakfast ratio. Nothing made sense. Your body naturally fights low BG by releasing stores of glucagon, adrenaline, & other hormones. I worried that as his reserves got more and more depleted, we were headed closer to serious trouble. I called the school nurse in exasperation & suggested we just prevent the morning lows with a snack. It didn't treat the cause of the problem, but it kept him safe in the meantime.

First Bad Site 2/6/09

About a week after starting the pump, Andrew woke up with BG 498. Since it was so high, Gene bolused right away & included his breakfast carbs in the bolus. When he told me about it, I asked if Andrew had checked for ketones (it's a urine test). We'd never really seen ketones before, so Gene had forgotten our new rule that we must check for ketones before giving a bolus. Andrew checked and they were large (scale is negative, trace, small, moderate, large)!!! They had only been moderate when he was diagnosed. We called the doctor on call to find out what to do. The site was likely to be the cause, but there was no way to tell how much of the 10.6 units he had actually received. We had to wait another 2 hours to check & if it was still high, give a shot. The doctor said not to bother sending him to school until this was resolved. There was no time to get a sub, and I had a student teacher, so I took Andrew to school with me. At 8 a.m., I took his BG and the meter read, "High, over 600." His BG was too high to read! The doctor's recommendations made sense at 6 a.m., but now that it was time to give a shot, I didn't know whether to give the 4u maximum correction or replace the entire 10.6u dose he should have had at breakfast. I picked up the phone and called our friend, Andrew's school nurse. I told her I felt like I needed to give a shot now & asked her which dose she recommended. She said that you can always give more, but you can't take it out. I gave 4u. Then I went to change the site. I was very nervous & worried. I tried to follow the steps for preparing a site, but somehow messed it up. I had only brought one site to school, so then we had to leave school to come home. We had just changed the site when the phone rang. The school nurse was checking on Andrew & asked where his BG was. Still High, over 600. She recommended giving the rest of the breakfast dose via injection. At 10 a.m., his BG was down to 460, but his ketones were still large. It was scary to see him get so sick so quickly. By 11:00, he was down to 287, & at lunch 84. The crisis was over, but it took awhile for my nerves to calm down. There was no point in heading to school at this point, so he just stayed with me at school. At the end of the day, he went to the gym to shoot hoops with a friend's child. He put the pump in his pocket, but it fell out during play. You guessed it! The site ripped out! All I could do is laugh. I learned that day that a pumper should always carry multiple sites!!!

New Vocabulary - Sites, Basal, Bolus, & Ketones

A site is where Andrew gets insulin from his pump into his body. It's like getting an IV. It is inserted with a needle, but leaves a soft "straw" (cannula) once the needle is withdrawn. To prevent infection, it must be changed to another part of the body every 2-3 days. If it doesn't get inserted correctly, Andrew gets NO insulin and gets sick very quickly.

Andrew needs insulin to live, even if he doesn't eat anything. The pump gives small amounts of insulin every few minutes just like your pancreas does for you. This is his basal insulin & it takes care of his basic needs. The pump allows the amount of insulin given each hour to vary. On shots, long-acting insulin works the same for all 24 hours, even if you need more or less while you sleep.

If Andrew eats anything, he needs extra insulin to cover it. We still have to calculate the number of carbs he eats and give him insulin for it. A bolus is an extra dose of insulin given to cover food or high BG.

Ketones are created as fat is burned for energy. Blood glucose is energy for the cells in the body & insulin allows it to get into the cells. When a diabetic doesn't have enough insulin, the glucose stays in the blood & the cells starve. That's why newly diagnosed patients were usually losing weight. The ketones release an acid that can be very dangerous. DKA, diabetic ketoacidosis, can be fatal.

Pump Start

Andrew started his pump on January 29, 2009. The first weekend was perfect! His body seemed happy with the new regimen. Andrew was uncomfortable with having the pump attached all the time. At first, he wanted me to come hold it while he was in the bathroom. That wasn't going to work! He wanted to keep the pump in his pocket, but would take it out and hold it when he ran. There was lots to remember about all the site changes---cycle the cartridge twice, remember to prime, it takes .7u to fill cannula,.... It's all automatic now, but I took notes at the start up appointment!

One Year Anniversary

January 25, 2009 was Andrew's one year anniversary of diagnosis. I wanted to celebrate, not that he had diabetes, but all that we had learned. The family had come so far and learned so much. I didn't want it to be a sad day, but wasn't sure how to "celebrate" it either. Then we found out that a new local diabetes support group was having a social that day at an indoor YMCA pool. It was perfect! We spent the afternoon swimming in January - an activity we wouldn't have been invited to without Andrew's diagnosis. Thank you, God, for providing the perfect way to spend the day!

"Getting a Pump Is Like Being Newly Diagnosed"

Vanderbilt warned us that adjusting to the pump was like being newly diagnosed all over again. It is normal to wonder what have you done after the first few weeks, and they encouraged us to stick through the first few months. It was hard to imagine it being that bad, but I was glad for the warning. By two weeks, Andrew hated the pump & wanted to go back to shots. I told him if he still hated it in 6 months, he could quit, but we were giving it a chance. For me, I had forgotten how stressful it is to have to call in BGs daily, wait for the phone nurse to call back, talk about BGs, make changes, etc. - all while trying to work! The Lord blessed me with a student teacher during the transition, which helped tremendously! We all like the pump now, but the start was a bit rough.

Andrew Chooses A Pump

Once Andrew decided that he wanted a pump, he had to go to another carb counting class. learn about the different pumps, wear a site for 3 days, carb count for 2 weeks, and pick a pump. The nurse encouraged the kids to pick since they are the ones who have to wear it. I was happy that he wanted the Animas Ping. It uses the smallest units of insulin, allowing for great precision. It is the only one that comes with a meter that works as a remote control. It is fantastic! When he needs a bolus for high BG during the night, we can use the meter to give it rather than try to dig the pump out of his pocket. It's also great when we are still carb counting and he wants to play. When we're finished counting, we just "zap" him!

Please Talk About Other Stuff Too!

Andrew doesn't mind talking to people about diabetes, but wants people to still see him for who he is. Andrew is so much more than just a set of BG numbers! Although diabetes is a big part of his life, he doesn't let it define him. He is an intelligent, active young boy who plays soccer, basketball, and baseball. He loves to swim, ride his bike, play spades, and plays on the Wii.

Even the other kids complained especially at first that all we talk about now is diabetes. We do spend a fair amount of time discussing carb counts, BG readings, changes that need to be made to his insulin, and adjustments that should be made for activities. We can't stop those converstations, but we are trying to limit how much the kids have to hear them. Learning to work as a team is important for parents and not necessarily easy. Diabetes requires quick reactions with some room for judgement. Gene and I want to manage it consistently, so we have frequent "medical consults" after the kids go to bed.

Just Stories

Once Andrew was diagnosed, I started to hear horror stories about diabetes everywhere I went. They aren't mine to share, but several scared me. One day Andrew's school nurse was encouraging us to consider a family diabetes camp. She said, "As soon as people find out you have diabetes, they all have to tell their story, just like when you are pregnant... At camp, you are around other families finding solutions to the everyday issues." That's when I realized that I had been taking the diabetes stories way too seriously. After 5 pregnancies, I knew better than to worry about every pregnancy story I heard. Yet, I still worried about the diabetic stories. For us, it seems like nearly everyday has a story. We've had extreme highs & extreme lows & close calls. When the day is done, though, it is just another story. We start fresh each morning & try again. Thanks for the perspective!

Considering An Insulin Pump

The doctor told Andrew that he had to use shots for his insulin for at least the first eight months. After that, he could switch to the pump if he wanted to. The pump has some extra features, more precise measurements of small amounts of insulin, and allows for more flexibility. It also requires that you carry a pump full of insulin attached to your body all the time. You have to figure out a way to wear it when your clothes have no pockets, how to sleep without getting tangled in the wires, how to run and play without pulling it out, how to use the bathroom while holding your pump, etc. I hoped for the advantages of the pump, but I wouldn't have to wear it 24/7. Going to a pump would have to be Andrew's decision.

Kaitlyn tests positive!

I was proud of Kaitlyn for wanting to participate in the research study. I didn't think much about it again until my negative results showed up in the mail & hers didn't. Nothing the next day or the next. By the time the phone call came, I knew what was about to be said before she said it. Kaitlyn tested positive for the antibodies associated with type 1 diabetes & qualified for stage 2 of the study. They did a genetic study to see if she had the protective gene. She doesn't. Although testing positive doesn't guarantee that she will get type 1 diabetes, she is in the highest risk category with a 50% chance of developing the disease in the next 5 years. She has a beautiful attitude about it! Every 3 months, she willingly fasts overnight and while we drive to Nashville for an oral glucose tolerance test. They take lots of bloodwork & watch her closely. So far, everything looks good. She likes participating because she feels like she's helping science and because they pay her $50 for her trouble. Andrew wanted to know why she gets paid for an IV every three months and no one pays him for 4 shots a day!

Kaitlyn enrolls in TrialNet

After Andrew's diagnosis, Kaitlyn was the first to enroll in a research study called TrialNet. It is a voluntary study (the kids over age 5 have to want to do it) following the close relatives of type 1 patients. It is a great study and has helped researchers learn a lot about the disease. For example, they have found antibodies only associated with type 1 diabetes & have seen that these antibodies often exist for a long period of time before symptoms occur. These antibodies seem to be created as the islets in the pancreas are being destroyed. The pancreas will function normally until it gets down to 20% of the islet cells. They've also found that some people have lots of the antibodies, but never get diabetes. Genetic testing has shown that there is a "protective gene". People with that gene seem to be immune. Kaitlyn wanted to participate & help find a cure for Andrew. One by one, each of the other kids have done the same.

Non-Medical Adjustments

Andrew had lots of adjustments to make. Here are just a few:

The school nurse wanted him to have a bathroom buddy - just in case.

He got left out of the first school parties because the teacher didn't know what he could eat.

Friends were scared to invite him over to play. I was afraid to let him go.

People will stare at you if your mom pulls out a shot in a public place & you can get too old for the ladies' restroom.

It's hard to play ball if the excitement shoots your BG up very high. It's also scary if your BG goes too low. If you're playing third base & try to tell the other team's coach that you're low, he probably won't know what you're talking about!

Most of these issues have resolved, but there is one more still:
You have to carry a bag of supplies EVERYWHERE!!! He can't even go on a bike ride without a meter & sugar source.

Realizing I'd missed more signs

I was blindsided by the diabetes diagnosis, but the more we learned about his body, the more I realized we'd had symptoms for awhile. I had been worried about basketball. He'd been very emotional on the court & my "mom-radar" kept saying something was wrong. After basketball, he would go back to his normal self. Once we were monitoring BG, I discovered that his BG goes up during competition & triggers the emotions. After the exercise, his BG goes down & my sweet child returns.

One discovery I made was on the last day of school when the scrapbook came home. His first day picture had looked horrible! I remembered thinking, "He's so nervous that he looks sick!" I recognized the look now - high BG probably really from being nervous. At the bottom he was asked to fill in some blanks including I felt "hungry ." Yes, excessive hunger is a sign of high BG!

Will I Have To Give Up TV If I Go To The Bathroom?

About a month after Andrew was diagnosed, his BG was running high. The body tries to get rid of the extra sugar by frequent urination. During the service, Andrew leaned over and whispered into my ear, "Will I have to give up TV for the rest of the day if I go to the bathroom?" I felt horrible! No, I hadn't noticed frequent trips at home prior to diagnosis, but he had a bad habit of leaving the church service during the sermon. I thought he was just looking for a distraction. Then Ryan started asking to go too. I told them to start going before church. If they forgot and distracted the entire church body, they'd have to give up tv for the day. Ryan suddenly was happy to stay in church, but Andrew left anyway. I remember thinking, "Wow, it must really worth it to him" because it happened more than once. Turns out, for the first year or so, his BG always ran high at church. We even made him run laps up and down the sidewalk before church to help!

School Lunches

We were lucky in that, after the first two weeks, Andrew was able to eat school lunch. Some diabetic children are forced to take their lunches forever because of the problem of carb counting. That would have killed Andrew! He loves a hot lunch. His school nurse made a stack of cards for the teacher where she writes down everything on his tray. When he finishes, he takes his tray back & she records the percent of food eaten. He takes the card to the nurse for carb counting & insulin. It's a great system & none of his teachers have complained about it.

However, when he was first diagnosed, the teacher had Andrew pick a friend and come eat at the teacher table where she could be sure he wasn't trading food, etc. She only had his best interests in mind, but Andrew did not want to be removed from all the other kids & made to eat with the teachers forever! I insisted that he be able to eat with the other kids. Andrew had to adjust to living a "normal" life with diabetes, and the beginning was so important to guiding his attitude. Giving up the ability to eat with other kids wasn't going to do. I only have a few years to manage diabetes. Andrew has his entire life. I feel like if he learns how to do the things he cares about while taking care of his diabetes now, he'll be more likely to take care of it himself later. I tell him that he can do anything the other kids can do. But I admit that sometimes it's hard to figure out how to make it happen!

Can't Eat When You Want To

Andrew was less frustrated by what he was and wasn't allowed to eat than when he was allowed to eat it. He was in the middle of basketball season when he was diagnosed. He is so competitive that his blood sugar goes up when he plays sports. Do you really want to give a kid with BG in the 300s that aftergame snack? Remember though that high BG makes you cranky & hungry! This issue is much better now that he is on the pump, but we're nowhere near that in the story. He was only allowed to have a shot every 3 hours, so that meant he couldn't eat more than a light snack if he was within 3 hours of a meal. The dietician talked to us about family traditions we thought we'd like to keep. One was the family trip to Bruster's for ice cream. We thought we would try it, but we'd have to have his lunch done early enough to wait 3 hours for ice cream & then have dinner 3 hours after the ice cream shot. Long story short, it's been over a year and half & we've still never eaten there as a family. When Gene & I went on a date once, I asked if they had nutritional information on their ice creams. The gentleman behind me assured me that I really didn't want to know. I assured him that, yes, I really did! That's okay. We can save that money for diabetic supplies!

Honeymoon

Andrew was headed to bed two weeks after his diagnosis & his bedtime BG was 70. Less than 70 is low, so I fed him & almost sent him to bed. The Lord must have led me to recheck & his BG was 49! He continued to stay low despite juice, so I called the doctor on call. He was kind & reassuring but brief. Soon the phone rang again. The doctor said, "I didn't realize from speaking with you that Andrew was a new diagnosis. When I went to put him in the computer, I saw his diagnosis date. I think he may be honeymooning. How is he now?" He was still low. "I don't mean to alarm you, but how far are you from the nearest hospital?" 20 minutes. "Don't go yet, but I want you to find your car keys. Keep doing what you're doing, but if he gets worse or refuses to eat, I want you to put him in the car & go straight to the hospital. Have the E.R. call me as soon as you get there." We were able to manage it at home, but I don't think Andrew had ever had so much sugar in one night! Every fifteen minutes, we gave him juice, candy, soda, anything that would raise his BG. It took over an hour to get him over 70. Too bad that he didn't feel well enough to enjoy it.

Type 1 diabetes kills the islets in the pancreas that produce insulin. I believe the doctors said that you won't have symptoms until you get down to about 20% of your islets left. The little bit of Andrew's pancreas that could make insulin appreciated the help it had been getting and was ready to make insulin again! That is the happy part of the honeymoon in the sense that it requires less insulin to manage BG. This night, it also meant that Andrew suddenly had too much insulin. One silver lining from the episode was that I was able to shift Andrew's Lantus (24 hour insulin) shot from evening to morning as a friend had suggested. Even though he took 2 shots at breakfast, it felt like only 3 shot sessions a day instead of 4.

No One Could Watch Andrew

Less than a week out of the hospital, Will came down with a stomach virus. I took the rest of the kids to Ryan's basketball practice to avoid the germs. Honestly, I wasn't doing well. I was 6 months pregnant, very sleep deprived, and emotionally and physically drained. After talking to a friend about what was going on, I went to the bathroom to try and pull myself together. There, I discovered that I was spotting worse than I had with the miscarriage. I really thought I was going to lose Ben from the stress. I figured the doctor would tell me to go the hospital, but that led to the next question: What would I do with Andrew? We hadn't had time to train anyone on measuring & drawing up insulin, counting carbs, how to handle lows, etc. I really didn't want to go to the hospital alone, and I just fell apart. Thankfully, when I went home and laid down, the bleeding stopped. It helped us realize that we had to train some help! I was having a baby, and sooner or later, both Gene and I would be heading to the hospital.

You Never Get a Break!

Shortly after Andrew was diagnosed , I talked to a adult friend living a seemingly healthy life with type 1 diabetes. He is a wonderful role model, and a great example of the godly kind of man I hope to see each of my boys grow up to be. I think he summed up how I feel about the disease now when he said, "You just get really tired of it because you have to think about it all of the time. You NEVER get a break." He was so right! We have to think about diabetes every time Andrew eats, every time he plays, and even when he sleeps.

Counting Carbs

Although Vanderbilt asked us to start carb counting in the hospital, we didn't start using them to measure insulin until we returned for more training. That's when we got the carb ratios our school nurse was expecting. Low carb diets sometimes help people with type 2 diabetes because they still make insulin. Type 1 diabetes is an autoimmune disease that kills the insulin producing islet cells in the pancreas. No amount of dieting will ever make them work again. Andrew needs insulin whether he eats a regular meal or a low carb one. A healthy pancreas automatically matches insulin to food intake. We get to be Andrew's pancreas. We read labels to find the number of carbs in everything he eats. Currently, he takes 1 unit of insulin for every 12g of carbs that he eats at breakfast, 1 unit for every 18g of carbs he eats at lunch, and 1 unit for every 17g of carbs he eats at dinner. He can eat anything except liquid sugar like sodas, juice, or pancake syrup as long as he counts the carbs. That makes every meal a math problem where we measure serving sizes & carbs. Andrew already has some pretty good fraction skills! For example, he knows that a serving size of Honey Nut Cheerios is 3/4 of a cup and has total carbohydrates of 22g. He likes more than that, so he eats 2 servings, which is 1 1/2 cups and 44g. He measures his cereal with a 1/2 cup measuring cup & takes 3 scoops. Milk also has carbs. He usually pours about a cup into the bowl, but about half gets left behind, so we only count 6g for the milk. That's 50g, which is 4.15u of insulin if eaten at breakfast, but only 2.80 if eaten at lunch. His body is more sensitive to insulin at different times of day that typically have different activity levels. Then we add or subtract insulin based on what his blood sugar was before the meal. My kitchen has changed quite a bit since Andrew's diagnosis, with many of the changes being quite comical. One new rule: No trash with labels gets thrown away until after the meal & all carbs have been counted!
P.S. A must have for carb counters: The Calorie King Calorie Fat & Carbohydrate Counter

Insulin is a lifesaver, but not a cure.

If it wasn't for insulin, Andrew would already be dead. Insulin shots have been around for less than a hundred years, so it's a very sobering thought. We are very thankful for the role insulin plays keeping Andrew healthy. However, it is not a cure & it is not without risks. Too much insulin will send the blood sugar too low. The brain needs a constant supply of blood sugar for energy and quickly begins to starve if the BG drops too low. Too much insulin can cause disorientation, seizures, coma, and death all pretty quickly if not treated. Some people prefer to let their BG run a little high rather than face low BG. High BG over a period of time, however, can cause heart, kidney, eye, & nerve damage. Since BG is affected by food, activity, growth hormones, stress, illness, etc. it's not always easy to balance insulin needs.

A Failed Attempt To Return To School

We picked up Andrew's long list of medical supplies the next morning, took them home to organize them, and then prepared a box for the school nurse. We walked in with Andrew, his school orders, and all the supplies and met the school nurse for the first time. She looked over his orders, asked a few questions, and then told us that she didn't feel comfortable just glancing at new orders like this & being able to keep our son safe. We ended up leaving with Andrew. I remember looking at Gene & commenting, "We're not in Kansas anymore!"

In all fairness to the nurse, who we came to dearly love, we must have been a school nurse's worst nightmare. We walked in with Andrew, fresh from the hospital, with BG still running in the four or five hundreds. He had never had a low blood sugar in his life so he wouldn't recognize one and he had orders that said let him eat whatever he wanted & give him 2u of insulin! When she asked about carb ratios, we didn't know what she was talking about. When we left, she called Vanderbilt. They explained how we were still being trained & would learn about carb ratios in a couple days.

Home to Jealous Siblings

We left the hospital Monday evening & arrived home after the other kids went to bed. Andrew couldn't wait to see the kids in the morning and show off his stuff - old baseball cards from the courtesy cart, a stuffed Vanderbilt Champ mascot, and his "no-no" that covered his IV. Andrew wanted to put the no-no on & see if he could trick the kids into thinking his arm was broken. He also happily shared that he got to play in the playroom with Gene on the Playstation. I was proud that of all the horrible things he had been through, he chose to share the few good moments. We were in such constant training that he literally only got to play in the playroom one hour the entire time. The social worker had already told us that it was normal for siblings to be jealous of the constant attention required to manage diabetes, but we weren't expecting it to set in that fast. The kids felt like Andrew had been off having a great time with Mom & Dad's undivided attention while they sat at home without us. It didn't help that the training had only started and we were on the road to Vanderbilt quite a bit in the early days.

Going Home

Andrew's BG was still running high when we were getting ready to go home. The night before, the meter read, "High, over 600" twice. Normal pre-meal BG is between 80-120. I remember asking, "Is it really okay for him to go home?" Andrew was worried too. I remember him asking me, "Am I going to die?" They printed out a full page list of supplies he would now need for us to take to the pharmacist. We weren't sure we were ready, but we did want to be back with the rest of the family. We only had to make it a couple of days before we would return for more training.

Middle of the Night Screams

In the hospital, Andrew tolerated the shots better than the finger pricks. The hospital didn't have the needle lancets, but rather the blade type. Andrew checked my blood sugar with one, and it did hurt much more than the needles do. One evening, we were all sleeping when a nurse decided to check Andrew's BG without waking him. He woke up from a deep sleep screaming and scared to death. At the time, I thought it was horrible & promised him that I would never do that to him. Now, a year and half later and still needing to check his BG in the middle of night, I have had to change my mind on that one. I tell him to try to sleep through it, but if he wakes up he can do it himself. He wakes up most of the time. I can't remember the last time the poor guy got to sleep through the night. One of the worst parts of this disease is the exhaustion that comes with it.

Diabetes 101

The next few days were a blur of learning. I felt overwhelmed with information, but I can see now that they were incredibly patient with us. First, we had to learn how to give shots. I thought I'd never be able to give someone a shot. However, if your son will die without them, you can learn to give a shot! Andrew wasn't excited about being the guinea pig for two people who had never given shots before, but he didn't have a choice either. We learned how to measure insulin, how to calculate correction doses for high BG, how to count the carbohydrates in a meal, what he could eat, and how to give glucagon if his BG dropped too low. We had visits from the child psychologist to help Andrew adjust, someone to help us deal with all the insurance copays we'd be paying, & someone to advise us for school issues.

Good! You're Math People - He will be okay!

Once Andrew got his own room, more than one nurse commented that it was good that we were "math people", because that meant he would be okay. I thought that meant that if we learned all the formulas and followed them, Andrew would have great blood sugar numbers. Turns out, we are considered to be doing well if 75% of numbers are in range. The comments came from the fact that from now on, every meal or snack that Andrew eats will be a math problem and mistakes can be devastating.

Lucky

Andrew responded to insulin well and soon cleared his ketones. He was able to move out of the ER by Saturday afternoon. He was really lucky. Lots of kids are really sick when they are diagnosed, and some don't make it. We are thankful for the bedwetting that tipped us off. Lots of kids' blood sugar and ketones get so high that they start vomiting. Normal parent response is to offer liquid sugar, which is not good if you're vomiting from high BG. Parents don't realize it's not a virus until the kids start having trouble breathing. New rule in our house: No one gets soda or juice when vomiting without taking their blood sugar first.

Mom, how long does it take for diabetes to go away?

That Saturday was definitely one of the hardest days of my life. I was trying to process, while pregnant and sleep deprived, that my child had a lifelong illness. He just lost ten years off of his life expectency. He was at risk for heart disease, kidney failure, blindness, and amputation and would need constant monitoring for the effects of high and low blood sugar. Still, I think the most heartbreaking moment of the day was when Andrew crawled up in my lap and asked how long it would take for diabetes to go away! He'd been such a good sport about everything, that I never thought about the fact that everything he'd ever had before got better. It was so hard to hold my sweet seven-year-old needlephobic son and tell him that diabetes never goes away and that he would have to take these shots and finger pricks for the rest of his life.

At least 4 shots a day

Things were very busy once we got to the hospital. It was 5 am before any of us got any rest. Then we only got an hour or two of sleep. Dr. Mathew came in and confirmed that Andrew had diabetes and would need at least four shots of insulin a day to survive. We would have to learn how to give shots and watch for high and low blood sugar before Andrew could leave the hospital. We tried to learn as much as we could, but the information was coming at us so quickly that it was hard to absorb all at once.

Arriving at Vanderbilt

When we got to Vanderbilt Children's Hospital, I handed the nurse Andrew's paperwork & told her that our doctor had sent us. She looked down at the paperwork and then at Andrew and said, "And he's just walking in like that?" I had no clue, so I replied, "Is he not supposed to?" Understanding came over her eyes as she asked if he was a new diagnosis. She asked me to sit in the waiting room, but they called us back as soon as we sat down. They took Andrew's blood sugar (BG- blood glucose) and it was still in the upper 400s. The nurse had her calm nurse voice on and said she would take us back. She stopped by the insurance admitting desk and calmly said, "These are the Coxes. I'm taking them to Room 1." They were so busy that we walked past patients waiting in the hallway. They placed Andrew in room 1 right across from the nurses desk and had heart monitors on & an IV in before anyone even asked if we had insurance. Andrew didn't know any better, but I knew this wasn't normal. I was starting to realize that this was about more than a low carb diet.

Getting Ready To Go

Getting ready to go to a hospital in another state for 5 days when you have 3 other children is not an easy task. Gene's Dad agreed to come stay overnight & my mom was going to take over when she wasn't working. A dear friend volunteered to get groceries for them. We made arrangements as fast as we could & tried to settle the other kids, but it was still after 9 pm when we left town. I didn't know then how dangerous each of those hours were. The Lord protected Andrew! I knew from reading low carb diet books not to feed him any carbs. He had chicken & diet coke for dinner. He was a good sport about anything we asked him to do!

On the School Bus

The math team had just won first place and we were on the way home when my cell phone rang. I was supposed to stop and buy groceries before coming home but Gene said, "Kimberly, where are you? You need to come straight home." He told me the news, but it was hard to process it. Even pregnant and emotional, I didn't cry. I even enjoyed a few minutes of denial thinking surely you can't get that kind of diagnosis that quickly. Denial lasted only until I heard how high his blood sugar was. The good part of being on the bus was that I was travelling with a colleague. He found out what I wanted taught while I was gone & handled the getting a sub and lesson plans for me. I remember telling him, "My life just changed forever" but I had no idea!

At The Doctor

Gene took all four kids to the doctor while I was still at math team. We were just expecting to find out whether or not Andrew had an infection. The news came as a shock, "Andrew has diabetes. He needs to go to Vanderbilt Children's Hospital ASAP. They are expecting him. Expect to be there at least five days. Your other children won't be allowed in his room, so you need to find somewhere for them to stay." The children all circled around Andrew and hugged on him. The scene was apparently very touching, because the nurse and doctor told it to me several times. The doctor has four children of her own. She went home and told her husband that she hoped her children would react the same way in a crisis. I'm glad they did, but every time I heard the story I felt very guilty. At a time like this, the only person not there was MOM. I was on a school bus!

Getting To The Doctor

I had first block planning and was leaving at 10 am to take the math team to a competition at Wallace State. I decided to take Andrew to work with me in hopes that I could get him to the doctor before I left. I called just after 8, but was told they couldn't see him until afternoon. I knew I wouldn't be back until after 5, so I remember asking, "Can I just drop off a sample?" Of course, they said no, that he needed to be seen. I took the latest available afternoon appointment, called Gene about taking him, and then had to contact all the kids' teachers to have them sent to the front office instead of the bus at the end of the day so that Gene could get them all to the doctor on time. I remember feeling like I was making a mountain out of a mole hill.

First Symptoms

On Monday, January 21, Andrew wet the bed. I thought it was strange, but figured it was one of those growing boy problems. Tuesday night, it happened again. We restricted evening fluids, but Thursday night, he wet the bed twice in one night! He had only had one child-size drink that night, so I remember thinking, where's all this coming from? We thought he might have a bladder infection & decided to take him to the doctor Friday morning so that he wouldn't have to suffer through the weekend.

Telling Andrew's Story

Andrew was diagnosed with Type 1 Diabetes on January 25, 2008. The diagnosis came as a shock since no one in our family has the disease. Our lives have changed so much since then. Since Kaitlyn also has antibodies for the disease, but no symptoms (more about that later), we are working with a research team at Vanderbilt searching for clues about the development and onset of this disease. When I asked them what we should do to help the research effort, the advice surprised me. "Tell your story! People just don't understand what these kids go through. They look so normal so they don't get the attention they deserve." That was over a year ago, but I've never forgotten it. This blog is his story.