A Great Few Days

Tucker did very well once he got back to school this week.

It always takes me awhile to get myself and the house back together after a trip to Houston, but by Thursday we were back to our routine. Tucker came home with a surprising note on Thursday: He had Good Behavior and did Awesome at Academic Tasks!! :) He usually gets fair behavior, and the teacher usually just checks off the time that he spends on academic tasks; so I knew for her to write a note, he must have done great! She even let me keep the note (usually we sign them and return them for the next day), for myself, haha.

Tucker's usual therapy was cancelled for that afternoon, so we headed to Wal Mart for groceries and party supplies. I told Tucker since he did so well at school that he could have ANYTHING at Wal Mart as his prize. He replied "eggs!" I told him, "no, you can have anything...chips, cookies, crackers, even a Mickey toy." Again he said, "eggs!" So we went to the egg section, and he took his time picking out the perfect dozen! Then he held him very gently for the entire trip. We also had taken the trip in Chris's truck, so it was an extra treat for Tucker. When Tucker had to give his eggs to the cashier so we could pay for them, he was very hesitant. I told him "we have to pay for the eggs so that we can get in the car and go home." He replied, "ride the truck!" and I said "Oh I'm so sorry, I forgot we were in the truck! Thanks for keeping me on my game!" He is such a mess, ever since he started putting 2 words together he has been such a boss....well, maybe way before then actually...

On Friday morning, Chris, Mom, Dad, Maw Maw Rose, Paw Paw Charles, Jessica, and I all headed to Cracker Barrel for breakfast to celebrate my sister Jessica's 30th birthday. I got her a blinking button that says "30 rocks", which she wore with pride:) She was so excited to eat breakfast with all of us, and she ordered pancakes and sausage. We all enjoyed ourselves, and were joking that Jessica better have brought her birthday money to pay for all of us...then the waitress came up and said our ticket was taken care of. A gentleman had paid for the whole breakfast, and said,"just tell them the servant of the Lord Jesus Christ took care of their meal, and enjoy their day." We had never had something like that happen to us before, so we were a little shocked. Chris and I had to rush out to make it to Tucker's class Halloween party, but Mom and Dad went to the nearest few men and told them thank you, but it wasn't them! So thanks to whomever it was, we appreciated it:)

Tucker's Halloween party was only an hour long, so it was a little rushed. The kids went to three centers to play games and make crafts, and the parents were invited to mainly observe. Tucker ran up to Chris and me and hugged us, then he was very obedient and ran back to his teacher and his seat. During the party he struggled to follow directions, as all he wanted to do was play with his Daddy! Chris stayed very close to Tucker and Wes and helped them with their projects, so Tucker did okay once he realized his Daddy wasn't leaving.

The rest of Friday and Saturday were spent getting the house and decorations ready for the Too Cute to Spook Party. We ate dinner at mom's Friday Night for Jessica's Birthday party; Mom's lasagna is so delicious, maybe one day Tucker will appreciate that! We all had a last-minute strategy meeting (as I call it) about the party....in my family, parties go up to a whole different level...they require strategy meetings:) We discussed last minute necessities, who needed to be where at what time....plans were good.

Gina came over on Saturday to help with food and decorations. She made the cutest backdrop for the party, I am having trouble posting pics, so I will have to do that on my next post. My friend Lacy took pics of all of the food and decorations, we had so much food, like "Mummy Toes", "Monster Punch", and "Dragon Eyes," but the obvious hit of the party was the "Vampire Blood" and "Witch's Blood", which were really lime jello and strawberry jello pulled into Tucker's 60 cc feeding syringes!! My sister Meagan had the idea, and I thought we could really make it work. Chris put them together Friday, and I knew they would be cute...but people really loved them. Some kids even suggested that next year we put different puddings in them and other toppings....I guess we will have to save up Tucker's feeding supplies:) My sister Sarah took pictures of everything for me, and was my party assistant. She did a great job, thanks!

We also worked very hard on a Trick or Treating game that involved clues. There were 18 characters, and 18 types of candy. So each kid got a list with 18 pictures on it over different characters...ladybug, mummy, princess, etc. So they went to each grown-up, who then read out a clue. The clues were like, " I like to walk around in my fancy gown, I even get to wear a beautiful crown," so then the kid would guess "princess", get the picture of the princess marked off, and then get their candy. I just wanted it to be different than just a rushing free-for-all for candy that was over in 2 minutes. It took a while to get set up for this game, and the kids were getting antsy. My mom was leading them in song, it was hilarious! But once we got all the ducks in a row, the kids really enjoyed the activity, and it was a nice way to get them thinking and focused on the game, not just the treats:) This was also a family affair-Mom bought the candy, I made up the game and decorated the characters, and Meagan made up the clues. Of course Superman did not take part in the trick or treating:( He was too excited that the swingset was empty! So he took that time to swing on his swings, and then when he decided to join in, he tried to steal Wes's candy...but that didn't work!

My favorite picture of the day is the one I posted at the beginning of this post-it's the Super Friends, Wes as Spiderman, Daniel as Iron Man, and Tucker as Superman. You can kind of see the backdrop Gina painted, but you can see it much better with just one child in the picture, so I'll have to post some of those. I just love Tucker's hair, Chris slicked it down just like Clark Kent:)

Tucker has a hard time interacting with other kids, but I'll always remember what one of his therapists told me: Kids with autism don't interact with other kids well....they learn pretty quickly that they are not good at it, so then they quit trying.....we all like to do things we are good at, so if you teach your child how to be better at interacting, he will want to interact more, and then he'll get even better...and so on and so on.

So we give Tucker lots of opportunities for fun and games with other kids. He loves having kids over to his house, and he is pretty good at sharing, except for his favorite swing. At one point, he was swinging, and I said, "don't you want to get down and play with the kids?" and he said "play wit the kids! play wit the kids!" and I took him down and he ran and played....it was precious:)

Next year's party plans are already underway...Gina wants to use our shed as a Haunted House...the point of the party has been "fun not scary" for the last 2 years, so I told her we'll have to think about that. As the kids get older, they will probably want to be scared, though, so we'll see.

I have a few medical updates, nothing big, though, and I'll get to them later. I have been really enjoying the last few days with Tucker, and keeping in mind so many of his friends who are in the hospital fighting for their lives right now....and the ones who are up in heaven eating more candy than any of us....those sweet kids and their families are never far from my mind, and I am so, so grateful that I have been able to focus my attention on planning a party for Tucker and his friends. We are a lucky family.

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.

Pumpkin Patch 2010

Today Tucker's class went on their first fieldtrip. Chris and I joined the class at the Pumpkin Patch. Last spring Tucker's 3-year-old class went to the Strawberry Patch, and that place becomes a Pumpkin Patch in the fall, so I thought we were going there. It turned out that we went to a different one, and even the busdriver had no idea where it was! I am usually the overly controlling parent, who plans out all the details, and Chris just goes with the flow. Today we followed the bus driver and other parents in through neighborhoods near Chris's plant, which we KNEW was nowhere near the pumpkin patch, and Chris was freaking out:) I told him to relax, that we would get there, and we had to trust the people in charge, he was not very good at that! We knew Tucker was having a blast, as it was a much longer bus ride than they planned, it took us about an hour and ten minutes to actually get there. Mrs. Amy said that Tucker loved the busride, and they fed him on schedule while the bus was rolling. I am proud of Mrs. Amy, they are getting very used to his tube feedings. Since we got to the Pumpkin Patch late, we were scared that we missed our scheduled ride. Since we were such a small group, they fit us right in. Big tractors were hooked up to large wagons; we all stood up in the wagons, in a pretty tight fit, and rode out to the pumpkin patch. I love this picture! I couldn't get down on his level, because there was no room, so I snapped the picture from my (not too high) vantage point. Once the tractor started rolling, Chris picked Tucker up so he could see over the big kids' heads.

Then the big kids' from another school were so sweet and moved out of the way for Tucker to see.

We were near the front of the wagon, right behind the tractor. Two of Tucker's classmates loved being right behind the tractor, and when Tucker noticed them, he joined them. This is a picture of Brian pointing at the tracks and explaining to Tucker that the tractor made the tracks, how cute:)

The kids mainly stayed with their parents, but it was so sweet to see Tucker interacting with the other kids. In the classroom before we left, Tucker just kind of sat around and stared into space while the teacher and kids talked. But out on the field trip he really interacted much better.

Once we got out of the wagon, the kids took all of 3 minutes to pick out their pumpkins!! Tucker was ready to actually ride the tractor, but that was not allowed. He got in the wagon and stared at the tractor, saying "get in the tractor," but the answer was a firm NO. He did not have a fit or anything, he was very well-behaved.

Then I just took some pictures of Tucker walking in the field.

And some pictures of him back on the wagon, waiting patiently for the tractor to GO!

The ride back was so hot! By the end of the ride we were all ready for some water. Tucker drank pretty well out of the cup, then we found a spot for a picnic. True to Tucker form, guess who was the first one ready for lunch?? ;)

He is hilarious! He has always been the first one ready for snack and lunchtime, even though he only licks the food. We had to keep telling him to "stay out" of the lunchbags until we had the blanket set up. He even went around digging in the parent's lunchbags! I had to stop him until Chris got back with our lunch, including 3 bags of chips-one for each of us.

Tucker's current favorite chip is Fritos, so that's what we bought for him. I brought Cheetos for me, and that is what Tucker wanted instead of his chips. He sat and licked every single chip while the other kids ate their PB&J sandwiches, apples, and juices. Mrs. Amy works hard with Tucker everyday to lick his lunch as long as the other kids eat. We have seen a difference in him at home as far an attention span at meals. Well today was wonderful, he sat there and licked the chips all during lunchtime, then put his discarded cheetos into the trash, which is much nicer than his usual method, which is to lick chips and then feed them to us!

After lunch, Chris cleaned Tucker's face and hands in the water fountain, then we brought him to our car to change his clothes. We had him in pants, but it was too hot! Luckily, we had packed his shorts. Once we got back, the kids were in line for the potty. Tucker kept saying "ride the bus" so I told him he had to ask Mrs. Amy. He found Mrs. Amy, and I told her Tucker had a question for her. She asked him what he needed and he said "ride the bus!" She told him it wasn't time, so he held her hand and waitied until it was time. He was so patient! :)

Once the kids were loaded on the bus, the parents discussed how to get home. Chris suggested a much better route, and the parents agreed to follow us out. We got back much sooner, thank goodness. I think the teacher and aides were tired of the pumpkin patch and ready to get the kids back for naptime. This is only the first fieldtrip, and the teacher has planned one per month. All of the parents can't attend each one, though, and next month only two parents are going to Global Wildlife. Global Wildlife is about an hour away, and it's a place where you ride in covered wagons to see Safari animals. Since there is limited space on the wagons, only 2 parents can come, including me. Chris has had his fill of field trips for now, so he is not jealous of me at all! I told him "this is only the beginning of our field trip years," haha, we are lucky to be looking forward to hopefully many more trips to the pumpkin patch and other oddly educational places.

Today was enough excitement for us for a while! Hopefully we will just relax this weekend, then leave for Houston bright and early Monday morning. I will update more on that this weekend.