Thursday, Emma's Principal called me after Emma got home from school. She wanted to tell me about something that happened at school that day that was concerning to her. While Emma's teacher was at lunch, Emma followed one of the class aids out while she took one of the students to therapy. The aid that left didn't know that she followed her and the other aid who stayed in the room didn't know either. Someone else at the school found Emma about 10 minutes later, she had found a couch and was hanging out. Emma has a tendency to run off now and I do have to keep a close eye(or grip) on her. She wasn't hurt or anything, but she could have easily gone outside and the school is on a busy road. I appreciated the phone call and I wasn't too concerned about it. I doubt it will ever happen again because the Principal told me that there was already a gate on the door and the window and a rule was established to verbally communicate who they are taking and where. I guess Emma was 1 of 3 runaways that day, two went out the window. I felt bad for the Pricipal it sounded like she had a rough day, I was impressed with how she handled the situation though. We still love her school.
This Tuesday was Emma's A1 c appointment. We meet with her Endocrinologist every 2-3 months. Every time I leave this appointment I feel just as overwhemed as the day she was diagnosed. They run a test called an A1c, it represents the average glucose in her blood over a 3-4 month period. It provides a lot of information to help manage her diabetes better. A1c goals for kids Emma's age(0-6 years) should be below 8.5%. This time she rang in at a 9.1, I was glad that it had come down from the previous appointment(she was at 10.0). With that being said, it really isn't a good number. I don't like that her result lands on the scale where you see Dangerous. I would love to see it in the Excellent control range and would even take Fair control. We have only received a fair once or twice and never ever see excellent control.
This is an appointment that I dread. Besides the A1c, we also meet with the Nurse/Diabetes educator followed by the Dr. They have me fill out paperwork that provides current dosing information. They download her pump and glucometer into a computer system that prints out a summary of her imformation. It adds that info into charts and then we can use those averages and readings to look for problematic times or meals that might need tweaking in her insulin doses. There is no way a teenager could fake taking care of their Diabetes, it all gets recorded. So if they weren't doing anything, the downloads would be empty. I kind of feel bad that these kids are living with that kind of pressure.
They ask me all sorts of questions and while I attempt to answer them, Emma is either emptying all the cabinets out or hitting and screaming. Saying it is stressful is a huge understatement. It is always frustrating for me because they really don't know why we can't get better control. I always feel like it is my fault, maybe I'm not carb counting accurately or maybe I am getting too lenient. Deep down inside I know I am doing at least enough. I also have good reminders, like on Monday, her blood sugars ran in the 100's all day(I did nothing different than any other day). They can tell her blood sugar is being checked enough and that we are giving her plenty of insulin in a 24 hour period. Her numbers are just depressing. Ben, one of the educators, reminded me that I am doing a good job. Maybe he could tell that I was fighting back tears the entire time(I always am). Every time we're there he kind of shakes his head when he looks at her charts and numbers because he doesn't know what to do. We both spent a lot of time looking for patterns. He explained to me that they will usually show up at the same time of day or on the same day of the week or at the same meal. Not Emma, there was no distinct pattern. Her numbers were all over the place. I mentioned to him that I noticed I was getting better numbers when I put her pump site in her arm(we can use the back of the arms, the top of her fanny, her chuncky thighs or her stomach). He still wants me to rotate through the site areas in spite of that though. We both kind of decided that maybe she just wasn't getting enough insulin. Dr. Donaldson came in at that point and came to the same conclusion. He ended up switching everything. He is having us use a new glucometer and a new brand of test strips. He increased her basal rate, that is the amount of insulin she receives about every 10 minutes. He increased her bolus amount, the insulin she gets for her high blood sugars. He increased her carb ratio(meaning she gets more insulin for the carbs she eats) she is at a 1:20 ratio now. She receives 1 unit of insulin for every 20 grams of carbs that she eats. I think it is a pretty agressive dose, I have met grown ups with a 1:10 ratio. Since insulin absorption is the best on the first day of a new pump site, I have to now temporarily lower her doses 20%. It sounds more difficult than it is, there is a feature I can use on the pump. I program how long I want it and how much I want it lowered. One more thing I have to remember in the day, if I don't she could have low blood sugars that first day. It is interesting the things we have to do to "fine tune" her Diabetes management. I have seen good blood sugars since the appointment, but I have also had way more lows. If it doesn't level out, her doses will have to be tweaked again.
Dr. Donaldson is using a new system to help the parents manage better(at least the ones who are on insulin pumps). I spent an extra hour on Tuesday getting set up and learning what to do. I wasn't too thrilled about having to stay longer, but I am excited for a better change. Until now, when her blood sugars were giving me problems, I have had to chart everything for a day or so and fax it into them. The nurses or the Dr. would review it and then fax the changes back. It has presented problems for me because it is not a fast process and like I have time to do that on top of everything else. Now when I need their advice, I will use something kind of like a usb port to download the pump into the program. I can call the office and they will have all the info they will need broken down into log books and summaries. So much less work for me(two weeks worth downloads in like a minute) and I think this will be a valuable tool in them helping us. Doesn't this information make your head hurt?
I received Emma's quarterly report for her Occupational Therapy goals yesterday. All 5 are brand new goals as of this year. They are 1. will imitate and progress to copy from a visual reference the pre-writing lines and shapes while using a tripod grasp on writing utensils. 2. Will find 10 objects hidden in a soft resistive theraputty in under 5 minutes independently. 3. Will match the letters of her first name and then trace her name with correct letter formation. 4. Will use adaptive scissors to cut a theraputty snake into 10 pieces, snip a straw into 10 pieces, snip a strip of 1" wide paper into 10 pieces, and progress to cut along a 6" line. 5. Will button and un-button on a dressing vest in under 4 minutes independently. The performance measurements are (G)=good 75% or more accuracy. (F+)=50-75% accuracy. (F)=fair 50% accuracy. (P+)=25-50% accuracy. (P)=poor=25% accuracy or below. For goal #1 Emma received a P+. 2. She received a P+. 3. she received a P. 4. she received a P. 5. she received a P. A few years ago I probably would have spent the night crying knowing that she scored at the very bottom. But, I have learned to look at her progress with the right perspective. I can't compare it to 'normal" kids, that is depressing. I definately can't focus too much on the actual score. As long as she progresses I don't care where her marks come in at. I am pleased with the progress I am seeing in her.
It's true, I am finally updating about Emma. Things have been interesting and I literally have been left speechless. The results for the stomach issues came back normal. Are you thinking what? Don't worry, we did to. It is a long story that honestly I don't know if I have the energy to fully explain. The short version is that the gastric-emptying study came back at 27%. Anything under 30% is considered normal. When I met back with Dr. Downey, miraculously he wasn't worried about her stomach anymore. To be honest he was kind of a jerk and in a way made me feel like an overbearing, worried parent. He was the one who got "specialist" on me and sent us off on a completely unnecessary rollercoaster ride. Originally, I was just wondering IF I needed to be worried about the reflux that I was seeing. He made no mention the first visit(or really ever) that it was still normal to reflux 8-10% of the time after a nissen. At the follow up appointment however, he made it known like I was some sort of idiot. The appointment was a battle between him and me and actually got pretty uncomfortable. I felt bad for the intern. I wasn't rude by an means(I wish I had it in me to tell him off), but I didn't sit there and take his crap. The best part was when he told me he didn't even think she was refluxing. I am so glad he knows her, since he sees her once maybe twice a year(Did you pick up on my sarcasm?). I wonder what he would call the little puke spots that I have to scrub out of the carpet? I'm pretty sure he knew I was not happy by the end of the appointment and he tried to make amends(it so didn't happen). I didn't even make it out to the parking lot before I burst into tears. He has no idea the way he messedwith me. Since day one, the responsibility I feel over her is indescribable really. I would do anything for her and I have learned that if I am noticing a problem it is better to act fast than to wait it out. I don't care if he is one of the best surgeons in the country, it would take something BIG to go back to him. This isn't the first time we have faced "possibilities" that turned out to be nothing, but this was by far the worst experience I have had so far with a Doctor. I have since gotten a few other opinions and feel like the reflux I am seeing isn't a problem unless she starts having symptematic problems(pneumonia). Sigh..............................
The t-cell function ended up being normal in her immune system. She doesn't necessarily have a normal immune system, but her t-cell function is normal. I am relieved that overall everything has turned out to be okay with her. It isn't fun to think about the worry and fear we were facing, but it really doesn't matter knowing that she is okay. We will move on from this and just keep going. I am sure it won't be the last time, we have "scares".
Some of you might have met Emma when she spotted you in the crowd and greeted you with a hug. To her friends and family, she's the soul-reader. She always seems to find the person who's in need of a friend the most. In tears of gratitude, a woman in the park thanked her family for Emma's comfort. "She knew I needed a hug today," the stranger said. It's for this reason and so many more that we're so grateful to have Emma in our lives and why we've decided to share her life with you.