The Last Few Days

A lot has been going on over the last week or so; Tucker attended a full week of school last week, yay! I didn't want to post about his first day back, and brag that it was a success only to jinx us. So I waited until we were done, including a great field trip. Tucker started feeling better on a Wednesday, then that Thursday I kept him home to monitor him, and he was much better. That Friday, school was out for parent/teacher conferences, so Tucker didn't go back to school until Monday; he was out for a total of 8 school days, and 13 calendar days. We were quite nervous about how we would get back into the school routine, especially when his speech therapist came to our house and said she could tell he was out of his work routine. So that Monday morning I woke him up and told him he was going to school. He was SO excited, and rushed to get ready. He had a hard time letting go of Spiderman, but I promised that he would wait on the couch until Tucker came home. We ended up outside a full ten minutes before we usually are, and he kept looking down the road, waiting for the bus to appear. When the bus arrived, he ran on! The bus driver said they missed him, I replied that obviously Tucker missed them, too. That day was pretty hard for me, I missed Tucker:( I stayed home, just in case the teacher called me and needed me to pick him up. It was so odd to have "me" time again, even though most of the day was spent on neglected housework. At least I could control the TV and/or radio, I had watched Elmo Firetruck and listened to Chamillionare rap songs for a whole week! When Tucker got off the bus, he ran past me into the house. He said two words when he got home: "Peye-da-man", then he found him, then "Huck" meaning the Incredible Hulk. He held both of them and was so happy! No "Mommy", haha! He did not miss me so much as his stuff. He did pretty well at OT that day; he had missed the previous week from being sick. According to his notes, he had a good day at school, so by Monday night he was very tired. He made it through the rest of the week just fine, and he got a good behavior note on Thursday. Tucker missed school on Monday and Tuesday because he made a trip to Houston. Tucker had his echo/EKG on his heart on Monday, then an appointment with the mito dr, Dr K, Tuesday. The trip was not as easy as usual; Tucker almost never sleeps in the car, he really never has. So when we take a 5 hour car trip, you would think he would at least sleep a little, but he doesn't. He is very good in the car and usually enjoys trips, but after about an hour he started asking to "get out the car" and "home". So we stopped a few times for gasoline and breakfast, and he was not happy to get back in the car each time. I was worried that he would be even more upset when we got to the hospital, but he was fine. I think he was just happy to run around. We signed in, and Tucker got his orange patient bracelet. Chris took Tucker for escalator rides for about 10 minutes, (he really loves that!), then we went into the imaging center. Tucker looked around the waiting room, then looked down at his bracelet, and burst into tears! He said "home, home" and tried to escape out of the door. We had already told him that it wouldn't hurt, so he decided to believe us. He sat down and watched Mickey Mouse on the laptop. He was happy when the techs came to get us, and he was very compliant with the EKG. The tech told him the leads were stickers, so Tucker liked that. For the echo, Tucker had to lie down for at least 20 minutes while the tech moved the wand around and took pictures of his heart. We thought that was going to be hard; they had even offered to sedate him, which we declined. They had on cartoons for Tucker to watch; well, he put his hands behind his head, propped his leg up, and watched the monitor with the pictures of his heart. He was totally at ease, like he watches echos all day long. He even "helped" the tech move the wand around. It was dark, and Chris and I both almost nodded off. When the tech said she was done, we were surprised; we thought it was going to be much longer. We left and headed to the Knights. Lauren was sick, and her pedi wasn't sure if she was contagious, so she spent the night at her grandparents' house so Tucker wouldn't get sick. So that left the whole house of toys for Tucker, he loved running around getting into all kinds of trouble! Pictures and signs of Samuel were everywhere; Tucker didn't understand that Samuel wasn't there, but he appreciated playing with all of his toys and bossing his Mommy:) I got to talk to Missy a little bit while Tucker napped; I miss her so much, I wish we could have talked more. We ate dinner with Ben and Missy, then we got ready for bed. Tucker was running around like a crazy person, and by 10pm he was not even tired. Missy gave Tucker his first dose of Melatonin, which helped him sleep. Within 10 minutes he was out, and he really needed to sleep after his long day. We will be using Melatonin from now on. We are not trying to knock Tucker out, it's just that sometimes he literally can not slow his body down to go to sleep, and his sleep is necessary for his health. Dr. K said it was fine to use Melatonin. The next morning we headed out early for our appointment with Dr. K. We had to wait for about 20 minutes in the waiting room, which is very short for this doctor. The room got crowded, though, so we had to buckle Tucker into his stroller; he does not know how to keep his hands to himself! We took out the laptop and put on his Mickey movie with his headphones. I have said this before: thank goodness for technology! I don't know how else we would occupy Tucker for such long waiting times. Tucker was so compliant for the weight and height check, and even the blood pressure check, which he usually HATES and fights against. The resident came into the room and examined Tucker and talked to us. Going to a teaching hospital is such a different experience for us. We have been in doctors' offices where one or maybe two residents observe a doctor's appointment, but at this office the doctor comes in with a whole team of students. Tucker was pretty rude to them, he wouldn't even look at Dr. K until she touched his purse! Then he was pretty mad at her. Dr K thinks Tucker looks great, she said that he looks much different than when she first met him. It was funny because Missy said the same thing to me that morning. They both said he looks much more proportional, something that I had noticed also. He used to be all belly with little stick arms and legs, and he is much more solid now and more proportional. Missy asked what we had changed, and the only real answer is that we added his mito supplements. So they are doing something positive! Dr K even suggested that we increase his dose of CoQ10, but if he seems to have too much energy, we could drop it back down. It's funny, because we give Tucker the supplements to increase his energy chain at the cellular level; while at the same time, he seems to have a ridiculous amount of energy! He bounces off the walls sometimes, and has attention problems because he can't slow down. One of our main concerns was Tucker's high blood sugar. Tucker has random high blood sugar readings, and lately they are almost to 300. This is very alarming, but for the most part his blood sugar is normal. So the endocrinologist in BR decided to just monitor him, and Dr. K agrees. She said it would be hard to decide how much insulin to give Tucker because we might give him too much and his sugar could get too low. She wants us to see the Endo in Houston, along with the Pulmonologist/Immunologist (one doctor who takes care of both specialties) that specialize in Mito the next time we come in. We are slowly moving Tucker's specialties over to Houston, while also keeping the ones in BR for regular monitoring. Dr K ordered the second round of genetic tests for Depletion Syndromes. The first round was taken in July, and they all came back negative. The hope is that we find the exact gene that caused Tucker's mito, that way the family and our future kids could get tested for that gene to see if we are carriers and/or affected. It would also help mito research to know what genes cause which types of mito. We know that we may never find that gene, but we will still take all the tests to see. Dr. K also ordered another A1C to test Tucker's blood sugar over the long-term, and an IgG level to check his immunity level. The last few times that Tucker had blood drawn, it was easy for the techs to find a vein and get the blood; the problem was that Tucker flipped out and had to be physically held down by at least two people to get the blood drawn. This is the main reason that I made Chris come with me to Houston; Mom and I had a hard time forcing him to lie down last time. This time, we told him that we had to get blood drawn so that we could go home. Tucker went into the basement lab and sat on Chris's lap, held out his arm, and watched as the tech set up. Once she stuck him, he held her hand and sat very patiently! Chris and I exchanged glances, and wondered where our feisty Tucker was! The tech said she was reading her Bible, waiting for next patient, so she must have gotten blessed by having a good little boy to take labs for. I looked at her desk, and sure enough, an open Bible was sitting there. I told her we should always ask our techs to read the Bible, because that was the best experience we'd ever had, lol. Tucker went back to school today, and we hope to have an uneventful few days. Then on Saturday we have our annual Halloween party (it's only the second one) for the kids. We started this last year, and it was a big hit! We have games, trick-or-treat, crafts, and Halloween-themed snacks. The theme is usually "fun, not scary", and the kids love that. Chris tries to sneak scary elements in, but so far I haven't let him! I like to give the kids a chance to get together in their costumes, and it's a fun reason to get together. Most of us go our own ways for the actual Halloween night, so it's nice to see all of the kids together in their costumes. I hope this party is as fun as last year's, but I have quite a bit to do before then.