All Grown Up

I am so behind on updating this blog, and I apologize for that! I know I am not recording so many funny things that Tucker does and says.

Over the last few months, Tucker has really grown up. Well, over the last week or so, he has really just changed a lot. We went to his buddy Wes's 5th birthday party last Saturday and I heard at least 8 times, "Wow, Leigh, Tucker is almost as tall as you!" Well, that's not hard to achieve, lol, but I'm not sure how I'll feel when he actually does reach my height. Tucker is now saying 7-8 word sentences (with people he is comfortable with). Yesterday, he told his ABA therapist Liz "Miz, I need to go to the batroom now, peez." lol

He also told Dr. Thomas to "get up peez" because the Dr. dared to sit in the comfortable chair in his own office, the chair that also spins.  Tucker was not pleased to be sitting on the patient table, but he did help Dr. T to place the stethoscope on his heart and he showed him his tummy when he asked.

Tucker spent the whole weekend with Chris, Pops, and Chris's brothers at the camp this weekend. I didn't realize how hard it was going to be to have them both gone! For years now Chris and I have worked out a hunting schedule so that Chris spends some weekends at home, some weekends at work, and some weekends hunting. So for the weekends when he was at work or hunting, I had the responsibility of taking care of Tucker, the house, and all of the other things that moms take care of .

So I was really looking forward to the "break" of being on my own while Chris had Tucker for the weekend. On Friday afternoon Tucker had therapy, so when therapy was over and I was home from work, Chris and I packed all of their stuff into the truck. Tucker was SO overjoyed to be going to the camp with his daddy, we couldn't pack fast enough for him.  Chris made him give me a good-bye kiss, and I hugged him extra tight, and a little too long, I guess, because he pulled away and ran to the truck. 

I waved to them, then went back inside and shut the door. I was totally out of my element! I still had tons of stuff to do with the house, running errands, and getting things taken care of for Tucker that I didn't get accomplished during the week, so it wasn't like I had the weekend off. I did get to see my mom and sisters a lot more than I usually would, so that was a nice treat.  I also watched TV and just sat on the couch all Friday night, which I am not at all used to doing, lol. But I just missed Tucker so much, and by Saturday night I was counting the minutes until they came home. 

On Friday night, it was dark by the time they got to the camp. Around 830 Chris called me, and Tucker was crying in the background, saying "mama, mama, Tucker come home with mama." I was shocked, as he has been working hard at potty training to go with Chris, the punishment is always "do you want to stay home with mommy?" and he says "Go to da camp peez!" But it was his bedtime and he all of a sudden realized that his mommy wasn't there! It broke my heart, but at the same time, I thought, thank goodness, he is not too big to ask for his mommy :)  Chris lost cell phone service, so I was panicking. I called Sarah and told her that Tucker was crying. She said "come pick me up, and let's go get him!" I didn't even know where to go, especially in the dark, but she was serious about going, lol.  About 20 minutes later Chris called me and said that as soon as they got to the camp and saw Pops, Tucker was so excited. So then I relaxed and told Sarah we were staying home.  Over the next few days, Tucker had a blast riding four wheelers, bossing all the men around, and looking for deer in the woods.  One thing he did not do is pee in the woods. Every time he had to go, Chris had to drive him back to the camp to use the potty! I cracked up at this, I told Chris that Tucker was potty trained, not tree-trained, lol. That is a different process.

Tucker pooped in the potty at the camp, which is a huge deal. We started potty training him over Labor Day weekend, and he got the #1 potty training very quickly. He has even learned that saying "pee pee on the potty!" gets him out of any unpleasant situation, such as therapy work, feeding time, or even church! We are starting to catch on to when he actually has to go, vs. when he is saying he has to go just to get up and out of the room. We don't want to make too many mistakes with that, lol

#2 has been a bit of a struggle, with his last accident happening last week with all 3 ABA therapists at the house.  We have resorted to some crazy tactics, such as wiping his bottom with freezing wipes when he poops in his pants, and letting him have literally everything he asks for after pooping on the potty. We think he finally has it, thank goodness.  Tucker also pooped on the potty at school for the first time yesterday, then again yesterday afternoon for Miss Liz for the first time. So we think he has got it!!!

Tucker's teacher at school and other aides and people who have seen him last year and this year are amazed by his recent progress. He works extremely hard at everything he does, and he is starting to have more language and social skills because of all of his hard work.  As the planner in the family, I am looking to next school year and wondering where Tucker will be as far as his grade.  We love Tucker's current PreK teacher, and Tucker is in her class for the second time this year. We have no idea what teacher he would have next year, or if he'd move into a self-contained class with all elementary ages, or how they'd try to include him in other kindergarten classes, or if we'd like to put him in a different school.  So Chris and I have so many ideas right now and decisions to make. 

Please pray that Tucker continues growing and thriving, and that Chris and I make wise decisions for Tucker's care and education.   I will write a medical update soon, we have made several changes lately and saw quite a few specialists, and luckily it is all just good updates.

The Good, the Fun, and the Ugly

Tucker has had a few busy days. We went with his class to the Christmas Tree Farm on Friday. I think the long bus ride there and back was the highlight of the trip for Tucker. He likes Christmas trees once they are inside with lights on them, but he was not too impressed by the real trees outside. He did try to steal the saw from Addi's Dad, our appointed tree cutter. After the tree was loaded into the bus, we took a hayride around the farm. Tucker tried to escape a few times, but Mrs. Wanda made him sit still. We were happy to see two friends. Sonny was in Tucker's class last year, and his class was also at the farm. So I got to see him and talk to him mom, and get updates on all the therapies and progress our boys have made. We also saw Mrs. Charity, one of the private duty nurses that used to spend 10 hours a day at our house, back when Tucker was 1-2 years old and still had the ventilator and trach. Mrs. Charity was there with one of her sons, and we hadn't seen her in about a year. She was so surprised by how big Tucker had gotten, but she was not happy that he still isn't eating! She worked hard to get him to eat several years ago, she had hoped he was getting better with that. After the farm, we all headed to Mc Donald's. For most kids, this was the fun part. For Tucker, it was less fun. He got his burger, complete with the Sesame Seed bun from my burger (he likes the way they feel). This picture really sums up his enthusiasm! He escaped from the table a few times, too (this is becoming way too common with him), but he made it through lunch.

We attended the Dreams Come True Christmas Party on Saturday. This is the organization that granted Tucker his Dream, which is a 7 day trip to Orlando that Chris, Tucker, and I will take after Christmas. The party had a lot of activities, like face painting, balloon animals, and caroling. The noise was a little too much for Tucker, but he did like the little firetruck that sang fire safety songs. He also really liked the dramatic dancing that a church group performed. They danced to different Christmas songs and spiritual songs, and Tucker was upfront grinning! I just never know what he will like and what he won't like, because I was not expecting him to like that really. Tucker lasted for about an hour and a half (the party was 3 hours), with many many breaks to look at trucks. There was a window to the parking lot, and Tucker's favorite part of the party was looking at all of the big trucks through the window. We were very happy to see our cousin Gracie with her family at the party. Gracie was diagnosed with sarcoma, a very rare type of cancer, in July. She has had treatment at St. Jude's that seemed to work but didn't, and she has to go back once they figure out which type of treatment will work (right now her cancer is a mystery). She has an amazing positive attitude, and it was nice to see her with her sisters and her parents. Her Dream Come True is to swim with the dolphins, so hopefully she will get her dream soon. I realized that I forgot Tucker's feeding supplies (Mother of the Year, right??), so we had to leave so Tucker could eat. He threw a big fit, because he thought he was finally getting to go play with the trucks in the parking lot, but we were actually going to our car. He screamed the whole 45 minute ride home, and continued at home. Feeding him made him feel better for a few minutes, but I think by then he was too far gone. He tantrummed (if that's a word) for about 4 hours, stopping for a few minutes in between until he found something else to yell about. Nothing worked to calm him, and he refused to take a nap, which of course would have helped. A fellow mito mom said about her son: "this is what autism looks like at naptime." Good way to put it. Chris came home from hunting around 130, and Tucker didn't miss a beat with the screaming. Jackie invited us to ride on a firetruck in a Christmas parade, and Chris said he was going to call Jackie to come pick up Tucker, and they could both go without us;) Tucker finally got it together when it was time to leave in Chris's truck. I told him he had to settle down, or no truck. So he pulled it together, and we left. He had a lot of fun riding in the firetruck. He was so excited to see the firetruck in the parking lot, and he climbed right up! He did not like when it stopped, of course! He said, "ride da fiyatruck." He threw a few beads and pieces of candy, but they only made it a few inches. He didn't mind our firetruck's sirens, because we really couldn't hear them. But the firetruck behind us was much louder, and Tucker jumped everytime that siren went off. His favorite part was at the end of the parade, when the truck went a little faster to get back to the parking lot. Tucker loved the wind in his face and the uninterrupted ride. It was a very nice ending to a bad day. We just never know what to expect with him, and are pleasantly surprised when experiences like that turn out so well.

Frustrated

Well I should have known when I wrote that Tucker would have a "full" day of school this week that I was jinxing him...this week was the only week that we had no planned appointments. I really wanted him to have 5 full days with his school routine before we go into several weeks of appointments and holidays. Tucker's blood sugar has been higher lately, but it has been correcting itself. Both the Endo and Mito drs were fine with monitoring it, but this week it started skyrocketing. On Tuesday evening it went up to 420 after he ate. You are not supposed to check blood sugar right after you eat because it is higher than usual, but no matter what time it's tested it should never reach 400. I called the endo afterhours, and then re-checked, by this point it was down to 380. The dr said that if his blood sugar didn't get down to 250, we'd have to go to the hospital for insulin. If it didn't get down to 150, we had to call the dr back and see what he said at that point. So we checked it every hour, and it went down by about 80 each hour. He got down to 66 after 3 hours, then back up to 98. The next morning I fed him before school and his blood sugar got up to 491. I decided to keep him home long enough to check him after 30 minutes and 60 minutes to get a good pattern for the doctor. I called the endo at 8am, then waited for them to call back. I brought Tucker to school late and explained the issue to his teacher. I also apologized in case Tucker had been acting wacky due to his high sugar. The teacher told me that he has been amazing lately, and that they are so happy to have him in the class. She even thanked me for sharing Tucker with the class:) I was so thrilled at that point...I always feel like Tucker slows the other kids down or doesn't fit in. But he really is fitting in well with the kids and working so hard to be his best...I am such a proud mommy!:) As I walked back in the door at home, the endo called. They told me to bring Tucker in at 145 and we would be changing his feeds. When I went to pick Tucker up from school, he was NOT happy. I had to drag him out of the school until he saw my car and Sarah waved to him. Then he was happy and ran to the car, thank goodness! We went to the drs office, and Sarah kept Tucker busy while I spoke to the nurse practitioner. She and I had a long talk about Tucker's issues, his sugar readings, his feeds, and his mito. They gave me more of a schedule, a prescription for ketone strips to test his urine when his blood sugar is high, and they changed his formula from Pediasure to Glucerna. I usually blend up food for Tucker and feed that to him 3 times a day at home (fruit, veggies, grains, soy milk and yogurt, meat, and fats) then he gets 2 cans of Pediasure at school. Tucker's sugars were skyrocketing equally high no matter if he got the blended food or Pediasure. The NP said that the dietician will look over the blended food and change out the simple sugars for more complex sugars, then we can re-start blended food next week. For two days (starting Wednesday), Tucker will get Glucerna formula. It has fewer calories per bottle than his blended food or Pediasure, so he has to get a lot more of it. Starting yesterday evening, he got Glucerna, and his sugars came down considerably. So I was thinking it was successful after the first feed! Of course nothing is that easy...last night after Tucker was in bed, Chris and I heard him cry out several times. We ran into his room, and he was asleep. We watched him writhe for awhile, and we thought he was having a nightmare. Chris felt his tummy, which felt kind of hard, but he was still asleep so we just left him alone. Today I had to go into Tucker's school at 930 am and feed him the Glucerna. The endo faxed over the orders to change his formula at school, but they didn't get entered into the system quite in time for 930. So I went in and fed him and told the teacher and aides about the formula change. Again, this is at 930. By 11am, I was back at home, and finally starting some housework. I actually vacummed (I know, hard to believe!) and when I was done I noticed two missed calls from Tucker's teacher. I didn't check the message, I just called her back. She said he had horrible diarrhea, and I had to pick him up from school. The school nurse said it was likely from the formula change (endo agrees) but he still had to go home just in case. So I went back to school, and took Tucker home for the second time in two days....again, he was NOT happy! Once he got home, he ran around and was acting fine, so we are thinking it is definitely a formula issue, which the doctor thinks will resolve. The diarrhea came back after his afternoon and evening feeding, I am still waiting for it after his 830pm feeding. His sugars have looked great, by the way... I am incredibly sad and frustrated right now....it seems that as soon as we get one issue figured out, or even a little bit better, something else pops up. This is the nature of mito...I should not be surprised, in fact, I should expect this. It's just different from saying that we know he'll have more issues, to actually experiencing the issues. Tucker's tummy is huge tonight, and I am worried about him. Tucker's class is going to Global Wildlife tomorrow. The kids have spent all week learning about the animals they will see, and they are so excited about it. No, Tucker doesn't come home talking about animals or anything, but I know that he realizes what is going on at school. Mrs. Amy told me that she really doesn't want him to miss the trip; neither do I! Chris and I tried to figure out how we can go, but he pointed out that we'll spend most of the day on a covered wagon feeding animals....no bathroom or changing area nearby! So I don't think we really have a choice. I am going to stop his Levo Carnitine again tomorrow to see if that helps stop the diarrhea at all, and then call the Endocrinologist's office at 8am to get a new plan if the diarrhea doesn't stop. I really don't want to "wait out" the diarrhea, but I'm not sure what other option they'll give us. Another thing that hit me today was that I realized that Tucker actually missed more school in October than he attended; I really do not want the same to be true for November. And these are supposed to be his "healthy" years, before his issues get worse. (At least, the way we understand depletion syndrome...maybe we're totally off the mark). Even with all of this, Tucker has been hilarious. Today Mrs. Joy came over for speech, and she said that she could tell he was bored! He went through the whole box of language cards and was "reading" a book when Chris and I went into the therapy room at the end of the hour. He told Chris a whole sentence "I want de teye-gah bank". He had to say it a few times before we understood what he was saying, we had never heard so many syllables come from his mouth that actually made sense. I feel much better about Tucker's blood sugar, especially now that we have the urine test strips to get more information and know if he needs immediate attention. I just hate that fixing his sugar issues has led to the tummy issues. Hopefully we'll get it all figured out tomorrow. Please keep Tucker in your prayers!

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.

Parent/Teacher Conference

On Friday I attended Tucker's Parent/Teacher Conference. Tucker is only 4 years old, but I have already attended many of these....none of them ever bring good news or warm, fuzzy feelings...the pride that comes with knowing our son "fits in" at school and is learning and progressing as he should. At least now I don't go to the meetings with the hope that I will hear something different...that I will leave the meeting with the knowledge that Tucker somehow "caught up" to other kids, like the doctors said he would....at least now I have the perspective that any improvement is a reason to be cheerful, as there are many kids who never improve...it still hurts, though!! For any of Tucker's therapists or teachers who read this, please don't take any of this as insulting. Giving us honest evaluations of Tucker's progress is a wonderful gift you all give us; each of you gives us many positive things to look at while also giving us the truth. But this was the first teacher's conference of this school year, the first conference in a classroom with 13 kids, half of which are neurotypical. As I've said before, I love the set-up of this class. The teacher and aides gear the class to the typical 4-year-old curriculum, and they put help in place for the kids who can't keep up, like Tucker. This way Tucker is not placed in a room with just kids with special needs; he has the opportunity to interact with typical kids all day, and be exposed to all that other 4-year-olds learn. Obviously, he can't do all this, so he also has the support to learn the things that he can handle. The other kids are still young enough that they don't bully or exclude Tucker, which is a concern we have for the future. For now, he is just another kid in the class, which I love. His teacher opened the conference by talking about how sick Tucker got. The other kids who went home came back in a day or two; Tucker missed 8 days of school. Chris and I knew that this year would be a trial of Tucker's immune system. As a former preemie, Tucker should have spent months sick, and any little bug that we caught, Tucker should have caught it much worse. This has really never happened! It has always perplexed us and his doctors; we just thought maybe since he spent the first winter of his life in the hospital (which would have been when he was most vulnerable to infection) maybe his body was exposed to so many bugs that his immune system figured out how to fight them. Last year Tucker attended preschool with 3-5 kids in the class for 3 hours each day. Tucker goes to many therapies, and other kids run around during his therapy sessions. Tucker also goes to many public places, like the carousel at the mall and Chuck E Cheese. His doctors haven't told us to avoid any of this, and this last illness really threw us all for a loop as Tucker is not sick very often. Well, I would like to think that this sickness was a freak occurence, and not just a sign of things to come. Tucker's teacher asked me what our plan is if every time Tucker gets sick, he misses 2 weeks of school. The truth is, Tucker NEEDS to be at school....he has to work twice as hard and twice as long to accomplish way less than the other kids. Because of this, each day of school he misses keeps him even further behind. As a mom, I know that Tucker and I have tried the "stay at home" approach to school, where the teacher comes to our house once a week. It is not enough! Tucker is developing by leaps and bounds based on just Tucker's baseline...but really he is much slower than the other kids, and having a homebound teacher just wouldn't help that situation at all. So my plan is: Don't get sick! I think that all parents are amazed by what their kids learn at school. As a parent, you are always worried about your kids, and when they come home knowing new things, it makes us proud. Tucker is learning his colors and different routines. His vocabulary is expanding rapidly-if only we could understand him! But when I got the last few class newsletters with the class activities, I knew Tucker was out of his league. The science section talked about inferences and observation, the math section was about counting to 10 and language was about learning letters. So that was the main question I had for Mrs. Amy: How does Tucker even fit in here? She said for times like that, they pull Tucker and 2 other kids out to the side to work on lower level skills that still fit in with the theme and ideas. She said that Tucker probably won't know his ABCs by the end of this school year....but maybe he will recognize a "T" and other meaningful letters, so they work on that. They also do a lot of language work with him, since he wants to talk and be understood so badly, so they are helping him with that. I am very happy with how they accomodate Tucker into the classroom, without letting him run the show!! Tucker gets two tube feedings during the day; these can't be changed around as they are ordered by his pediatrician. The first tube feeding was scheduled during playground time, which meant that Tucker missed out on Outside Time. Well, that didn't work! He cried real tears and fought the feedings the whole time, so the teacher moved playgroud time around for the whole class so that Tucker could be included. They also put Tucker in an empty classroom for rest time. There are 13 kids, and they all rest on their mats for 1 hour and 15 minutes each day. Well 2 of the kids still don't sleep and make noise; the other 10 kids are fine with this and sleep anyway. Tucker does not! He crawls around and even rubs the other kids' hair! So since Rest is SUPER important for Tucker, the teacher and aides take turns each day taking Tucker and his mat to a different classroom so he will have NO distractions. So far it was really working, but then he missed all that school, so we'll see how it goes. Mrs. Amy also said that Tucker is enjoying lunchtime more. At the beginning, Tucker's only requirement at lunch was that he licked everything on his plate at least once. He also had to stay in the cafeteria until one of the grown-ups was finished; then that person would take him to the classroom while the others stayed at lunch. Tucker would help Mrs. Amy set up for journal time until the other kids came back. Mrs. Amy said that now, Tucker doesn't like to leave early. He wants to stay with the other kids. He also used to sit "alone" at reading time and rug time. He had to sit in a chair instead of on the floor because if he could reach any kids, he'd hit them! So now he doesn't like to be alone, so he sits on the rug with Mrs. Amy, who keeps a close eye that he doesn't hit anyone. Mrs. Amy also said that he's making progress with interaction, though not much! Tucker is very much "all about me." I wonder why, haha? Tucker loves older kids, and he is very into babies lately (especially Kate, aka "baby Tate"), but he is not too great with kids his own size or age. This is one of those very autistic characteristics that Tucker meets. Anyways, Mrs. Amy said that lately he will let the kids hold his hands while they walk in line, and he will tolerate the kids being near him! I guess tolerating them is progress, right? Mrs. Amy said that she feels like she pushes Tucker so hard all day long, and he gets very frustrated. She said it's a fine line between pushing him just enough to make him work, and pushing him too hard. By the end of each day, she is "Tuckered out." I told her to keep pushing, and that Tucker has been progressing, so she must be making the right choices. We all wonder this about Tucker-how hard to push, how much is too much, and how far is too far....really no one knows! Today Tucker went back to school for the first time in two weeks. He was SO excited to ride the bus again, I am hoping that he transitions back into the school routine very easily:)

Hoppy Bithday

Yesterday was Chris's 27th birthday, Happy Birthday Chris!:) It was pretty lame, as birthdays go! He had to work for 10 hours, then have a regular weeknight with Tucker and me. At least I made him some brownies (he doesn't like cake) and offered to make him a special dinner, but he didn't really care. We watched the Office and I let him play video games, so not too exciting. He is also on-call this week, meaning that he can get called into work anytime this week and weekend, so there are no weekend celebration plans either. He said Tucker made his whole day, though. I had been practicing with Tucker, telling him to say "Happy Birthday." Half the time he would say it, and the other half of the time he would ignore me. I got Chris a card from me and one from Tucker, so I got him to draw Chris a picture on his card (really just scribbling, he can't draw). When Chris came home, Tucker gave him the card. I said, "Tucker, what do we tell Daddy?" He said, "Hoppy Bithday." Chris and I were so excited! He didn't just repeat it, like I expected he would have to; he said it on his own. So we are super excited, and that will be our new birthday gift to everyone, haha, getting Tucker to say "hoppy bithday" to them on their birthdays. Tucker has still been hitting at school, but his teacher called me again this week to tell me how typical his behavior is, and that she expects it to get better as he gets used to school. She said they are pushing him so hard all day, and every once in a while he gets very frustrated and hits. The other day at OT he went up to a kid and hit him several times. At that point, he was hitting the boy to say "hello, I want to play." Once the boy moved over and let him on the OT swing, Tucker was so excited! Then after they were done, he turned around and hit him again with a big smile on his face. His therapist corrected him each time and made him say "hi, I want a turn" and all that, it was like Tucker was too excited to think about what words he needed to say. He loves big kids! And, unfortunately, the big kids he knows are my cousins, who encourage him to play rough....because really they are rough, haha! A few visits ago, the big girls were letting Tucker "push" them, and they really hammed it up, acting like he was knocking them over and he was Mr. Strong. Then a few weeks ago, Tucker went back to Maw Maw's and started randomly pushing people....not good! Tucker doesn't really understand the difference between rough playtime and then when it's time to stop that. So it's really better to have a firm NO roughhousing/NO hitting policy, even when other kids are playfighting. Tucker had taken a 3 week break from therapy because school was just making him exhausted. On Monday he was very excited to go back to OT; I bet he was even happier when he realized we have moved the emphasis from feeding to fine motor skills. We have hit a major roadblock with Tucker on eating, so Terri wants to work on some skills that he may need in school. They started with a test to see his skill level; they worked on things like cutting, writing, stacking small blocks, threading beads, and picking up small items. Terri was so happy with his compliance, she said she could tell that school was already making a big difference. He fought to get out of the chair at first, but after Terri told him he had to sit, he got right to work! He actually did well with the test:) We are so not used to him doing well on any tests, so it was nice that they were impressed with his fine motor skills. He even does circular scribbling, a term I had never heard, but apparently it's a good sign! Tucker's speech has still been improving, and he has a much larger vocabulary. Yesterday he found a vaccuum filter somewhere (he loves the vaccuum cleaner), and told Chris, "put it in the bacoom." We laughed so hard because he knew the words, and because he knew the filter belonged in the vaccuum. Tucker has also been pretty defiant lately. His teacher said that he really wants to win a fight! He has to listen at school, and at home, and at therapy, and he is trying to assert his indepence anywhere he can! So this can get pretty ugly. His new thing is that he hates his tube feedings. And I mean Hates....which is not good since he gets 5 bolus feedings per day. We are dealing with this development, and he still gets all the food he needs. It's funny because Chris and I were always so proud of Tucker for how good he was during tube feeds; then this summer we had a psychology appointment about Tucker, and they mentioned how odd it was that he didn't fight us for feedings and trach care...they said that if he fought us that was actually a sign of developmental growth. So we are seeing this as a positive! Haha.

Getting Adjusted to School

Tucker has been adjusting well to school, but it has definitely been a harder transition than I thought. It has also been a longer transition, as his issues seem to change every week. For the first few days there were only 4 students, then new students were slowly added until the full class attended last Friday. Now there are 13 kids, and 3 adults, which is more kids than Tucker has ever been around.

For the first few days Tucker came home hyperactive, then for about two weeks he rocked for hours afterschool and/or napped until 530, then didn't go to sleep at bedtime. Well this week, right as I got used to that routine, he came home as his regular self at 330. He is definitely tired, but he plays and gets his bath, goes about his routine and crashes at 9pm. This gives him about 10 hours of sleep per day, since he is still not napping at school.

On Sunday night Chris, Tucker, and I went to dinner at Rotolo's with my parents, Gina, Dylan, and Jene. Tucker was very well-behaved, he colored the kiddie menu with crayons and licked his breadsticks and pizza, as well as drinking water from his kiddie cup. He hit Chris a few times (I know, yikes!) but Chris kind of play fought with him, and he got over it. On Monday we went to lunch with Chris's parents; I thought since lunchtime was before naptime he would be in a great mood...not so much! At one point he choked on a Goldfish cracker, which really freaked me out...I am still not really recovered. I haven't been watching him as closely when he licks food, since he doesn't really put it in his mouth. Chris had to lay him down and sweep the cracker out of his mouth, then Tucker sat there in silence...I think he was really scared, even though we told him it was over and he didn't have to eat anymore.

Last Thursday, Tucker's behavior note from school said "fair" (the choices are excellent, good, fair, and poor). The comments said he hit twice. By Friday his behavior was good again, so we shrugged it off and kind of laughed at it. But on Monday his behavior note said he hit two kids and one adult. I really freaked out then. By the time Tucker gets home from school it's too late to punish him for something he did at school. But I still sat him down and told him the rule is "No Hitting," and he would get in trouble each time he hit. So from 330-530 he didn't hit me, but he really never does. So once Chris came in, it's like a light went off and Tucker was hitting him over and over. We have talked about it and realize that Tucker just loves his Daddy's attention, and since in the evenings Chris is exhausted, Tucker does what gets his attention the fastest-hitting him! Once we gotused to Tucker pulling on us and bossing us, we have both gotten good at tuning him out. But a surefire way to get Chris's attention is hitting him, especially in the face....which is exactly the worst thing to teach him! So on Monday evening Chris said "No Hitting" about 40 times....but he said Tuesday evening was much better (I wasn't home to supervise).

On Wednesday I sent a note with Tucker's folder, asking his teacher to please call me about the hitting. I wanted to see if it was at a particular time of day (maybe he was tired), or if it was during a certain activity, or if Tucker was hitting kids to get their attention. Wednesday afternoon, Tucker's note said he had hit again; by this point I was scared he was getting out of control! (Over-react much?? Haha) His teacher called me yesterday and said that Tucker's behavior is really OK and that she didn't even realize that we were taking it so seriously. I told her that I take every note she sends very seriously, I am a first-time mom with a special needs kid. She said that they have really been pushing Tucker very hard at school, and he is working very hard to keep up with the other kids in the class. So every once in a while he gets frustrated and hits; he also loves hair, as we all know, and sometimes he goes to rub a kid's head, but it really looks like he is going to hit them, so the kid gets scared. She said he definitely hits for attention, though, and they tell him "no hitting" and he stops. I felt so much better knowing that. Of course hitting is bad regardless, but I was worried that he was having big fits where he couldn't stop hitting, or that he was making enemies all over class! Luckily, I was very wrong. Mrs. Amy said Tucker is still testing their limits, so his behavior may get worse before it gets better, and she will work through it.

Tucker also had some positive school things this week. He had his first homework! Chris and I thought this was hilarious, and a little bit of a challenge. Tucker had to find pictures of things that he likes in magazines and cut them out, then glue the pictures on his Tucker page so the other kids can learn "All About Tucker." All we had was a massive stack of hunting magazines and one therapy toys catalogue. So we had to improvise; luckily we saw pics of a truck in the Cabela's magazine, and a few pics in the therapy catalogue, but I had to print out some pics off the Internet. Tucker had to point to the pics on the Internet that he liked as well, so it was the same concept. Tucker did a pretty good job of helping me cut and glue the pictures, although of course he wanted to do it all on his own! He had almost no control of the scissors, so that didn't happen. Tucker's finished assignment ended up being pretty messy, haha, proof that he worked on it, not just his Mommy:) Chris helped him as well.

The class is also working on one letter and one color each week, as well as one nursery rhyme each week. Last week was "B", and Tucker had fun saying "buh buh buh" every time I said "what does B make?" Saturday night he was playing with Chris's workboots, and he said "buh buh boots, buh buh boots." This week's letter is "N", so we need to start on that. We read "Jack be Nimble" to him Tuesday night, that is quite an odd nursery rhyme...Chris said "that's ridiculous, why are we reading a story to Tucker about some kid jumping over a candlestick?" But Tucker liked listening to it! He also has a picture book with a picture of each of his classmates. Tucker turns the pages and he knows about half of the names without me having to say them first.

We are glad that he gets to be around other kids and get the chance to learn so much. With cold and flu season approaching, we are hoping Tucker stays as healthy as possible so that he can get a lot out of school.

Good and Bad Changes

Tucker is a creature of habit, but this week has brought several changes, both good and bad. We went to the endocrinologist on Wednesday, and we got the results I had expected. Tucker's blood sugar is normal almost all of the time, and the doctor suspects that the few times it is too high were due to his mitochondrial disorder. He said he is not ready to change his diet or give him meds since his sugar is only high about once a week. I also told him that the few times it was high, each day had been a particularly long day for Tucker, so we weren't going to push him that hard anymore. The doctor said we could go from checking his sugar 3 times each day down to 4 times each week (yay!!!!), and if I notice any upward trends to call him ASAP and we would make a new plan. As for now, we made a follow-up for late December and we are keeping things the same. At that appointment he will check his A1C again and re-assess. So that was as close to good news as we've gotten in a long time! He said Tucker definitely has the potential to get Type 2 Diabetes, but he's not there now. Another change is that a new kid joined his class. Tucker has been SUPER tired when he gets home from school. On Monday he has OT, well he got off the bus at 330 pretty much crying "night night". I told him we had to go to therapy to see Mrs. Terri; usually he lights up and says "Te-ee, Te-ee" but this time he pretty much screamed bloody murder the whole way there. I had to carry him from the car to the building, then when Mrs. Terri wasn't in the waiting room Tucker flipped out. I told him he had to wait just a few minutes; he tried to play with the blocks, but some other kid wouldn't let him have any:/ I suggested to the kid that he share....he refused, and his mother didn't help me out at all.....so Tucker went all out crazy right there in the waiting room, and I decided we were quitting therapy....I'm kidding! sort of;) Once Mrs. Terri had him in the back room he was all smiles, but he was still exhausted. He again cried the whole way home, took a quick bath, then crashed in his bed. On Tuesday and Wednesday I took him off of the bus at 330 and pretty much rocked him in the recliner until 530 when Chris got home. Then Tucker had a few hours of playtime before he took his bath and went to bed around 9. Yesterday (Thursday) I met with Mrs. Amy, Tucker's teacher, and the first thing she said was that they got a new student. Well, that alone explained a lot! Tucker doesn't like change, and so this new student put a dent in his little routine. Mrs. Amy then explained that this child is too loud for Tucker....my goodness, Tucker and his preferences, lol. She said by Thursday Tucker was really getting used to the new kid and being much nicer, except at naptime. This little boy doesn't rest, and I guess he is kind of loud....so the other 4 kids in the class go to sleep regardless....but not Tucker. While the teacher and aides try to help the other little boy go to sleep and get used to his new classroom routine, Tucker shouts at him: "shhhh, night night!" The little boy continues to not sleep, so Tucker continues to boss at him....So Tucker gets no rest. The teachers have tried several techniques, but today they tried putting headphones on Tucker. His note today said "did not rest" so I am assuming they did not work....I am hoping the other little boy gets used to the classroom soon! Mrs. Amy totally understands how important it is for Tucker to rest, so they are really working on that for me. It is so funny, Tucker sleeps in the reading corner all by himself! He doesn't even lay on his mat; he sits on the beanbag chairs. On Monday the other kids joined the class, so I am sure that was rough on him as well. As of last week, Mrs. Amy said he is adjusting well to the classroom, and he is even sitting at lunch and licking all of his food:) For the first time today, he even got an "excellent" behavior rating! I may have to email the teacher and double-check on that one:) Another change-For the first time in Tucker's life, he is having trouble pooping...yes that is gross to talk about, but the poor kid is having a very rough time going! :( It hurts to watch him really, so I am going to switch one of his cans of Pediasure at school for the kind with fiber. He is usually on a blended diet at home and then gets 2 cans of pediasure at school; maybe his belly doesn't like the introduction of Pediasure, or maybe his belly has just been tired this week. At least we got an explanation for his lethargy Thursday night. On Thursday night after Tucker's bath I was rocking him (again!), it was about 630 and he was in A MOOD. Chris worked late, so I just decided to rock Tucker as long as it took to calm him down. By 7pm he was asleep. As I was rocking him, I noticed the nastiest smell! It smelled like really nasty feet, but it was coming from Tucker's ears:/ I went to the bathroom, and checked his custom-made ear plugs (he has custom-made ear plugs to block out water from his ear tubes when he bathes). They smelled exactly the same. So I assumed some water had gotten stuck in his ear and made the smell. Well about 30 minutes later the ear plugs smelled fine, and so did Tucker's right ear. His left ear, though, was still pretty gross! I called my mom, she told me to call Tucker's pediatrician in the morning since he had no fever. So the next morning I called, and the dr called in some ear drops. After a weekend of drops and Ibuprofen, as well as lots and lots of rocking chair time, Tucker is back to his "old" self. I asked my mom today "Where is my lazy Tucker when I need him?" lol, I was very worried about him last week, but man, he can wear me out during the few hours he is home at night! Tucker went to the eye doctor today (the last of his dr appointments for a few months hopefully!!), and there are really no changes with his eyes. She dilated his eyes and checked for pressure in his skull (his skull sutures fused too early, so if his brain is trying to grow, the skull won't let it, which could lead to increased pressure). No pressure! So that's good and bad news....good because there's no pressure in there, bad because his brain is not even trying to grow....sad, really, since his brain pretty much hasn't grown in two years, getting closer to three. We have the annual follow-up with the neurosurgeon over Thanksgiving break, I have a feeling he will just check him out and leave him status quo since his brain is not growing. The eye dr is one of the specialists that has followed Tucker from the NICU on out, so she always likes to get the health updates on him. When I told her he was diagnosed with mitochondrial disorder, and the mito doc suspects it has nothing to do with the prematurity, just two totally different problems, she asked, "wow, you guys ever think of playing the lotto?" I smiled and said "maybe in that case the odds would work in our favor!" Tucker's friend Wes is in for some big changes as well, he is going to join Tucker's class sometime this week, and he became a big brother today! Lauren and Kirby had their baby girl today, it was an exciting day. I had to leave before Kate was born to run home and get Tucker for his appointment, but Chris and I plan to go up to the hospital tomorrow. I won the baby pool, I guessed that it woudl be a girl, and that she would weigh 7 pounds, 3 ounces, which she did. I am still not sure exactly what I won! :) Tucker saw Kate's picture on my phone and said "baby" and tried to kiss her:) We found out last week that Chris's sister is having a girl in February, so Tucker will add another girl cousin to his long list! Maybe my sisters will have boys one day to help him even it out:) Or maybe Tucker just won't notice that his little cousin is a girl; he has a strict "no girls allowed" policy for his clubhouses and tents....seriously, I don't know where he gets this stuff!! I just re-read this post and realized it's all over the place and rambling, I need to post more often, then maybe I wouldn't try to sum up a whole week in a very short post. I will have to work on that.

Letting Go...

These past few days have been very hard for me. I had been looking forward to Tucker's new school year for a long time! I know that being at school all day is what he needs for his development and therapy. He really needs a teacher in charge of him who makes him follow set rules and a routine, unlike being at home with me! And I have been looking forward to a break! I mean, really looking forward to it, this summer was a killer for us....20 minute rides to and from preschool 5 days a week, Gymnastics therapy over an hour away, two OT sessions each week, swimming therapy about 30 minutes away, and two speech therapy sessions...by they end Tucker and I had both had enough, and my poor car probably never sat in the driveway! But at least I was with Tucker for most of his sessions, so I knew what he was doing and learning. Tucker's new teacher writes notes about his day, but now there are 8 hours unaccounted for, which is a bigger deal than I thought. It really makes his lack of conversation VERY noticeable...he can't even answer "yes" when i ask him if he had a nap or if he liked the bus ride? I can't ask him "what's your favorite thing about school?" or "tell me the name of your friends"....the stuff moms live for, right? All of the moms who sent their little ones off to kindergarten last week were very heartbroken I'm sure (and I'm not minimizing those feelings), but at the end of the day they got to hear all about it from little ones bursting with stories....me, not so much. Of course, what did I expect? Nothing really, but I did not expect it to hurt this badly. My poor sister (I know, which one?? Sarah) called me yesterday, and cheerfully asked, "How was Tucker's day?" I snapped at her, "I don't have a clue! He can't talk, did you forget that!??" I apologized to her, and she encouraged me to email the teacher, which I did....I just didn't realize how much those questions would bother me.... Parents are so proud to hear their kids' stories, I am 26 and I still crack my mom up with my crazy stories....I love listening to the craziness that comes out of my cousins' mouths, they think the funniest stuff are the most important things in the world, and I love to hear all about it! So this year I will not be just letting go of my son (yet again) but I will be letting go of so many dreams....dreams that I thought I had grieved and gotten over....obviously not. Tucker also rides the "short" bus, which could be its own conversation I know. Tucker LOVES any kind of transportation, and last year they spent time on the bus outside (it was parked) to get used to it, and Tucker was so well-behaved. He rode a bus last year for his field trip, and he sat still the whole time and loved it. The bus ride from our house to the school is really less than 5 minutes, there is a driver and an aide, seatbelts, and less than 5 kids....really there is no reason for him to NOT ride it. Did I mention he loves it? lol, he runs to it every morning and doesn't even hug me good-bye! That all being said, it really hurts my heart....I know how other kids make fun of the "short bus" and yes I really do care how my son is treated at school. I know that this should not be an issue throughout primary school (hopefully!), but kids can be really mean to kids that are different, and I am not looking forward to that. I think I have always viewed "letting go" of Tucker in a completely different light than other moms. Letting go in Holland must not be the same as it is in Italy....my child was rushed away from me at birth, I did not see him again for 48 hours, did not hold him for 7 weeks, and did not take him home for 8 1/2 months. From that point we had home nursing for almost 3 years, and he had so many therapy appointments and medical procedures that I had to let him attend without me. This was all done with the hope that he would one day be "better." I have been letting go of many dreams this summer and I think I will only have more of this. The idea that MY child would not learn to read and write and just love books(because honestly I'm about the biggest bookworm/nerd ever!) or say "I love you, Mommy" and actually mean it are dreams that will be especially hard to give up and grieve. I have been looking at the bright side and for the silver lining in the clouds for 4 years....I have become very good at it, and honestly it's exhausting. I have been letting go of that need to constantly make everyone else feel better about my son's condition(s), it has made for some pretty sad conversations, and also a feeling of a huge burden being lifted. But it has also opened the floodgates for so much sadness, which is what I'm muddling through right now. I'll end with some lyrics from a song that has gotten me through some tough times, and continues to mean more to me as time goes on: "I was sure by now, God you would have reached down, and wiped our tears away, rushed in and saved the day. But once again, I say 'Amen' and it's still raining" "I remember when, I stumbled in the wind, You heard my cries, You raised me up again, But my strength is almost gone, how can I carry on, when I can't find You?" "As the thunder rolls, I barely hear you whisper through the rain, 'I'm with you' And as your mercy falls, I raise my hand and praise the God who gives, and takes away." "I will praise You in this storm, and I will lift my hands, for You are who You are, no matter where I am. Every tear I've cried, You hold in your hand, You never left my side, and though my heart is torn, I will praise You in this storm." Casting Crowns, Praise You in this Storm

The Cutest Monkey in the Jungle

Today was Tucker's first day of preschool. The anticipation was much worse than the actual first day, thank goodness! Chris went into work late so that he could watch Tucker get on the bus. Altogether there were 7 people waiting with him: me, Chris, Mom, Sarah, Mrs. Mia, Mr. Ricky, and Maw Maw Mimi! A neighbor passed by while walking his dog, and he asked us if we were all going to ride the bus to school:) Tucker climbed on the bus and didn't even look back! All the women had tears in their eyes, but not Tucker. The bus driver later told me that he whimpered when the bus pulled into the school...well of course he did, he probably wanted a longer ride. Mrs. Amy (his teacher) said that he walked into the lobby, which was swarming with kids and parents, and he cried a little then as well. Once he got into this classroom he was fine, though. There are 4 kids in the class right now, these are the kids with special needs. After a few weeks about 6 typical kids will join the class, which makes this an integrated classroom. I had to go to school at 10am and I will go back at 2pm to feed Tucker. The nurses and teachers can't feed him until Dr B's nurse faxes over orders for it, so I am going to feed him today. At 10am he was sitting at snacktime, he ran over and hugged me, but then went back for his snack. Mrs. Amy said he is listening to what they say, but he is having a hard time staying away from their purses and Mrs. Amy's desk! I told them yesterday on our visit that Tucker will just have to learn that classroom rules are different from the rules at his grandparents' houses! Mr. Tucker is used to everything going his way, so school will teach him otherwise. Mrs. Amy told me yesterday that it's hard for every mom to bring their kid to school and leave them with the teacher. She said someone told her when her son was born: "every mommy monkey in the jungle thinks her baby monkey is the cutest one in the jungle. It's very hard when you send them to school or daycare and realize that every other mommy feels that way, too, and they are in the hands of other people." I thought to myself, "well that makes sense, but MY baby really IS the cutest monkey in the jungle!" :) I just like them all to know that Tucker has a lot of love at home, and we will be there to support the school as well as hold them accountable for meeting his needs. God bless his teacher, and all of the teachers who have to deal with parents like me! Most of my friends are teachers, and I have heard some real horror stories of parents who would NOT let go, so I am definitely not the worst that's out there! ------------------------------------------------------------------------------ On another note, Dr B (Tucker's pediatrician) called me today, they finally received his lab results. His blood glucose was 95, which is normal. The problem is that glucose was present in his urine, which is not good. Also, his A1C level was elevated, at 49.4 (normal ranges from 1-31). The A1C checks his level of insulin over time, meaning that even though his current blood sugar is good, it doesn't mean that he doesn't have insulin problems. His body seems to be putting out too much insulin, and is not able to absorb it back. So the Endo said that we need to test it 3 times a day for 4 weeks, then we will take in all of those results to our appointment with him. I am going to see the nurse and get a meter along with education about all this. My mom took care of a little boy with diabetes (don't you all remember Zane? :) ), so she knows all about this stuff, but the dr said she would still like me to come by for education on it. We will hopefully get a free meter out of the deal, so that's fine. So the suspicion is that he may have Type 2 diabetes, but hopefully that is not the case....just add the Endo to the list of specialists and checking blood sugar to the super long To-Do list, I guess! We are hoping to monitor this and not let it turn into a big problem. We are also on the list for an Echo/EEG in Houston to check out Tucker's heart. If it comes back abnormal, we will be followed by a cardiologist here at home. If it is normal, then Tucker will wait 2-3 years to have another one, and that will be that. So another trip to Houston is in the near future, but hopefully it will yield good results.