Kaitlyn's OGTT

When caller ID said Vanderbilt, I knew it wasn't good news. No one would be calling about Andrew, & good news about Kaitlyn could come in a email. She doesn't have an official diabetes diagnosis yet, but she barely missed it! Here are her numbers:
-10 minutes 88
time 0 min 86
30 minutes 169
60 minutes 221 :(
90 minutes 232 :( :(
120 minutes 194 (>200 at 2 hours on two occasions is diabetes)
Her A1c though is still fantastic at 4.8, where <6.0 is normal.

The impaired glucose tolerance paired with her antibodies for type 1 diabetes paint a pretty clear picture. Vandy even mentioned that she's having a strong honeymoon, which is the period at the beginning of the disease where you still make lots of your own insulin. She did say to watch for any symptoms, especially if she gets sick. We can go back for another OGTT before the six months if we are concerned.

Pumping Untethered!

Andrew has decided to "pump untethered". That means that he has switched to using Lantus shots for his basal insulin and is no longer wearing his pump. However, instead of switching back to shots altogether, he is leaving the site in for meal & correction boluses. It gives him only one injection every couple of days instead of every time he eats. We still have the advantage of rounding boluses to the nearest .05 instead of the nearest .5 & can use the pump to calculate insulin on board, etc. It's the best of both worlds. I have to admit, it is nice to look at Andrew again without seeing him hooked up to a machine for life support. It will take awhile to find the right Lantus amount, but we were going to have to experiment anyway to find the right summer basals now that the 4 weeks of camp are over (family camp, 2 weeks of VBS, followed by a Backyard Bible Club!). We started this morning, and so far so good!

Going Back On Shots

Andrew wants to take a break from the pump and go back on shots. I probably started it unintentionally. Andrew wants to play football in the Fall (a story for another time). It is too rough to play with the pump on, and he doesn't do well disconnected for a long time. Some players take a Lantus shot (24 hour basal insulin) & still use some basal insulin from the pump so that they have the advantages of both. That was my plan. However, Andrew decided to go back on shots entirely. He has no choice but be a human pin cushion. He gets to decide whether it comes in the form of shots or a pump. I can't imagine having to wear the pump 24/7, so I'm not going to complain, at least to him.

That said, I'm nervous about going back to shots!!! We start in the morning as soon as Vandy tells me how much Lantus to start with. I hope I still remember how to load the pens! I got a Lantus pen so that I don't have to uses the syringes, but I've never used it. However, it only does whole units, so they may tell me to use the syringe anyway. I was so unhappy with the A1c last time, but 8.1 was the best ever A1c on shots. I hope his control isn't going to get worse! I know that people are praying for us, so I'm open to the Lord working through this. I just can't imagine how we will get the Lantus right. He is so active during the day that his nighttime basal is much, much higher than his daytime basal. After a couple days without the flexibility of the pump, he may go right back on it anyway. He's used to eating whenever he wants now and just taking another bolus. We couldn't do that on shots. I need to review all the old rules!!!

A Difficult Day At Vanderbilt

Today was a harder day than normal at Vanderbilt. We started out really early in the morning so that we could stop & put EMLA cream on Kaitlyn & still get to Vanderbilt Children's Hospital by 9 a.m. I had asked to see Kaitlyn's numbers from her last test. I wanted to research numbers on specific antibodies. What I didn't expect to see was that Kaitlyn has already had two times where she had "impaired glucose tolerance" on her OGTT!!! How did I not know this??? Challenge #1: Don't freak out in front of the kids. They sweetly suggested that it might be a little insulin resistance due to puberty. Did she see my little girl a year ago when she took the test? It felt like confirmation that the inevitable is closer at hand than I want to believe. Her fasting glucose was 80 (perfect, but just like all the other times), but I couldn't help but wonder what the other numbers were. Will they be high enough that she will be diagnosed when the labs come back on Thursday??? Still, the staff there is amazing, & they constantly tell Kaitlyn how wonderful & brave she is, and how she is one of their very best patients. She really is fantastic about everything. At the end of the test, she gets to order lunch, but she always get the french toast sticks, bacon, eggs, & orange juice. The OJ slipped & fell all over her pants, but she remained sweet & easy going. I only mention it because it may have contributed to panic #2.

After Kaitlyn was released, we stopped by the food court to get lunch for the boys. I suggested that Kaitlyn take her BG so we could see what it was. It read...HI. Kaitlyn smiled and said, "Hi!" back, but Andrew & I both looked at each other knowingly. HI means high glucose, over 600!!! My heart sank. Challenge #2: Cry later. Stay calm for the kids now. She must have had orange juice on her hands or something, because when we rechecked in the clinic 40 minutes later, she was 97. It was a long 40 minutes. I'm still anxious about Thursday. Her highest number up to this point was 187. Over 200 on two occasions is an official diagnosis.

So now, it's Andrew's turn. His A1c ... 8.1! How???? How did it go up??? We have worked so hard! I've been checking the average in his meter & it isn't that high! I wake up every night at 2 to correct highs so it won't go too long & drive up his A1c. I don't know else to do. Our doctor really is good. I like him & trust him, but I need to vent. He wants the A1c at 6.5. Yeah, me too. His solution - change the pump site every 2 days instead of every 3 days & run Andrew on a reduced basal after exercise. Some people do have to change sites more often because numbers trend up the third day. Andrew doesn't. That will just cost us hundreds of dollars in extra supples. We already do the reduced basal after sports & split basals into school days with recess & P.E. & weekends. Have you ever seen Andrew? How do you quantify when he's more active than that? The doctor specifically mentioned swimming & we haven't been doing that. Oh yeah, that's because we take the pump off & he gets 0 basal while swimming! Still, I'll reduce it afterwards. Sarcasm & frustration aside, Andrew is very sensitive to activity, and it may be a good part of his variability. Fixing that won't be easy. All I can do is try again. The doctor is also running lots of tests on Andrew - thyroid, celiac, cholesterol, triglycerides, etc. His blood pressure is always on the higher side of normal, I think - 133/65 today. They will also routinely check for protein in his urine to see if there are kidney problems. How can my 9 year old have these problems? Oh yeah, he has an A1c of 8.1!

Thanks for being my place to vent! I can't do it in front of the kids, but this somehow helps. Thanks!

Here's a picture of the precious wounded: Kaitlyn had her IV for her OGTT, Will has a band-aid from his Trialnet rescreening, and Andrew has tape from his bloodwork plus a bandaid from the pneumococcal vaccine. Let's hope it doesn't raise his numbers like the last vaccine!

Camp Slide Show

http://www.flickr.com/photos/campascca/sets/72157624065542401/show/with/4664033066/

This is a slide show of of pictures that the camp posted online. Every child either has diabetes or is the sibling of a child with diabetes. The slide show is long, but you can click through & look at just a few of each activity.

Family Camp Was Fantastic!

We had a great time at camp!!! I just haven't had much time to write about it! The kids had lots of great experiences tubing, water sliding, canoeing, swimming, and at riflery, the cargo net, zip line, etc. The counselors at camp are so wonderful too! They are all 18+ young adult diabetics who are so amazing with the kids, even the smallest of them. I will definitely take Ben next year! The kids all felt normal checking their blood sugar, taking insulin, etc. & were safe at all their activities. The parents attended education sessions in the morning while the kids played &/or had education of their own. I enjoyed making friends with other parents of diabetic children & discussing some of the issues that are unique to parenting them. I also realized that I am really lucky to have the medical support team that we have!