Nuts and Bolts Update

Lots of planning is going on for Tucker right now, and I want to get it all out and straight in my head and for everyone. When Tucker got diagnosed with Mito in July, we began questioning every symptom and illness Tucker has ever had, and trying to look at them from a Mito light or a Prematurity light, kind of looking at where it all came from. As we went to follow-up appointments for lungs, eyes, and pediatrics, doctors' reactions to the diagnosis made it look kind of like a lightbulb went off, like "ah, yes, that makes sense." As time went on, we have attributed many of the symptoms that were nothing like mito (being over excited and having lots of energy) to actually being exactly like mito....because that is Tucker's way of trying to compensate for his lack of energy. So it has taken me weeks, months really, to wrap my brain around every issue I wanted to discuss. When we left Dr K's office in July, we agreed we didn't need to come back until February. A few weeks ago, I sent Dr K's nurse a list of about 5 detailed questions, about his blood sugar, sleep, hyperactivity, breathing, eating, and his heart. I also want to discuss his autonomic function (whole new ball of wax, right?). Dr K's nurse always emails me back right away, pretty much instantly. I often wonder when this team sleeps, because when I read other blogs it seems like they are in hospital rooms, at conferences, in clinic, and answering emails simultaneously! Anyways, this time I got no response. I waited about a week, then I emailed her again; she apologized but said she never got it. I re-sent it, and for some reason, I re-sent it about 3 more times before she finally got it. I even sent it from Chris's email, and I check each time, it was in my "sent" folder. So anyways, I finally saved it as a Word Document and sent it as an attachment. I got a reply that they would like us to come for a visit in October to really address my questions. Tucker is set to get more bloodwork then anyways, and he needs an echo/EKG on his heart that must be performed there, so we are trying to get all this scheduled together. Dr K also wants Tucker on insulin....I was pretty sure she would, since Tucker's "normal" blood sugars are fairly high. Since there is no cure for mito (yet), the treatment is to treat the symptoms before they become a big problem if possible. So maybe a regular patient would get insulin at a certain point, but a kid with mito may need it sooner because any extra work the body has to do in order to regulate sugars is really too much stress. So I don't know anything about insulin; I have a suspicion that it involves daily shots....well at least it's not bad enough that she wanted him to start it right away. She also wants to discuss Tucker's sleep study. I am very interested in seeing her point-of-view on this, and to see what she recommends. I need to call Dr T's office to see what he wants to do, since we found out 5 weeks ago that Tucker gets horrible sleep and no real rest, and we have no plan to deal with that yet. I also feel that Tucker does not get enough sleep for a regular 4-year-old, let alone a kid with mito. He gets about 9 hours most nights, and I would much rather him get 12-13. Ideally, going to bed at 8, wake up at 7 (that's 11 hours) then take the one-hour nap at school. So far he has taken a nap at school about two times, and on those days his behavior and energy level were great when he got home. The solution is not for me to pick him up early from school, though, because I don't know that he would nap any better for me! His teachers are trying so many techniques at school to get him to sleep, we are just praying that one works out! I also had questions about Tucker's motility. Motility is the motion of the food in the digestive system. When you chew and swallow, your esophagus moves the food down into the tummy, then the tummy has acid to break it down and push it on through the intestines, where the nutrients are absorbed, and waste is pushed out. That is a super simple explanation, really it is way more than that. So Dr K added GI Dysmotility on Tucker's list of symptoms, and we were puzzled by that. Tucker has regular bowel movements, and when we vent his g-tube before feedings, no formula comes up (if it came up 4 hours after a feeding, that would mean that obviously it had not moved downward to the intestines). Two years ago Tucker had a test to see if his fundoapplication was still in place (the surgery he got at 3 months old to wrap his tummy around his esophagus to prevent life-threatening reflux). This test showed that his fundo was definitely in place, and that his tummy emptied at a perfect rate. So we were very happy, but that test was over 2 years ago, so who knows what it looks like now? Tucker has always had a big gut, and little everything else! When he was 1 and 2, he looked like a bowling ball with little stick legs, my grandma Mimi had to do major alterations to every pair of pants he wore those two winters because he had to have big sized pants to fit over his gut, but then the legs and everything else was WAY too big. Last year he wore size 3T shirts and 18month pants, and Maw Maw didn't have to alter them, this year he looks like he will fit 2T pants and 4T/5 shirts. We always just laughed about it and said it's just part of his anatomy, but now I realize it could be because of slow motility. So anyways, that's something that we are going to look into. Dr K recommended a GI doc at Children's Hospital in New Orleans who specializes in motility issues as well as feeding issues. If a child has motility issues, their food may not move, and therefore eating isn't very comfortable. Tucker had a scope in May that showed he had no reflux, so eating is not painful for him. That is very good, but his lack of progress with feeding lately has got us all so confused! So more testing is in the future for that. I need to call and make that appointment. So on top of all of that, we had the follow-up at the Pediatric Psychology office two weeks ago. Chris and I took Tucker in for his attention issues, and we got the "official" autism diagnosis finally. Sounds weird, I know, since we have been basically treating him like he has autism for 2 years now, but the diagnosis was not formally in his chart. The diagnosis code won't help him get services, though, because our insurance is actually one of the plans in LA that are not covered by the new law that mandates coverage of autism services. I left the office actually kind of happy; the 10 page report they typed up sounded exactly like Tucker, and even had recommendations. Most of the recommendations were already being implemented at school, and much of the literature they recommended for us to read....well, we already have it all, haha! It just once again reminds me what a weird crazy ride we have been on the last 4 years.....when you get told your 4-year-old son definitely has autism, it should devastate you....make you rethink everything.....but it honestly wasn't even the worst news I got this month. One thing that was very interesting, but that I already knew. Mitochondrial disorder is very closely linked to autism. The psychologist said that she couldn't say for certain in Tucker's case, but that the research shows that his mitochondrial problems caused his autism; if he didn't have the mito, he wouldn't have the autism basically. So that hit a nerve, adding to my new mantra "I hate mito!" Sounds like a good motto, right? Last week, in an attempt to get every test imaginable done in 2010 and therefore save money in 2011 (that's my great new plan!), I called Tucker's neurosurgeon to schedule his annual follow-up in November. I said if he needed any tests (CT scan or MRI) I would really like them scheduled in 2010. They called me back the next day and said that Tucker wouldn't need any tests, but the neurosurgeon doesn't want to see us in his clinic; he wants us to come back to the cranio-facial team. This is the 8-specialist team that Tucker saw last October. This is the appointment where we learned that 3 of Tucker's 5 skull sutures are closed, and that basically his head hasn't grown in years, and it isn't trying to. So there was no surgical fix, so we thought we were done with them. It makes for a long day! We wait in one room, while different specialists come in: neurologist, neurosurgeon, geneticist, pediatric dentist, pediatric oral surgeon, pediatrician, speech therapist, and ENT. After they each see all of the patients, they spend the whole afternoon discussing each patient and writing reports with recommendations. We will likely see them in November (they only meet together once a month, so I'm not sure of the date yet). I really don't know what to expect with them-just a repeat of last year where everyone said he looks great except for the neurosurgeon who found glaring problems....I really have no idea! Tucker also has a cold that he can't get rid of. We are giving him his usual Claritin, Nasonex, and Albuterol treatments, on top of which I have added Triaminic. He had a 100 degree fever Thursday night, his usual temperature is about 97 degrees, and he almost NEVER goes above that, even when he is sick. So I was worried about him, but the pediatrician said he is okay. She said it is a "bummer" (really, she said that!) that the meds aren't controlling the cold, but he has no infections, his ears and throat looked great. Also his lungs sound very clear (yay!). If this continues, I will put in a call to the ENT just to make sure she is okay with the situation. Ahhh, and to think....about a week ago I was complaining that I was bored!!!! What on earth was I thinking?? On another note, I am still in shock and so so sad about Samuel. His fight with mito had a direct and obvious impact on how we are now treating Tucker, and it just amazes me how many lives this little boy and his family have touched. Mom and I are leaving for the funeral tomorrow. We will stay in Lake Charles tomorrow night then head to Katy Texas for the funeral services and the celebration of Samuel's life on Wednesday afternoon. Chris has to stay home to work (he uses all of his vacation time for Tucker's appointments), and Mrs. Mia and Mr. Ricky have graciously offered to take care of Tucker in the mornings and get him on the bus, while Aunt Alexis and Aunt Sarah are getting him off the bus and keeping him until Chris gets home. I am extremely nervous to leave him! I know that sounds funny, but I really am. I just really need to be there with the Knight family....as selfish as that may sound....I really need to hug them and be there to celebrate Samuel.

Heartbroken

I woke up to heartbreaking news this morning. I found out that Samuel lost his fight with mito last night. He is now dancing in Heaven, eating ice cream and brownies (as his mommy Missy put it). To say that I was shocked is an understatement....this little boy has fought through so much. We met Samuel Knight this year, during 2010 I got to meet him several times, along with Mom, Gina, Chris, Mrs. Mia, and Mr. Ricky, and this little boy was truly amazing. I met his mom through the March of Dimes, and this is one of those connections that are so unlikely, but later on I have thanked God over and over that I met this wonderful family. People often tell me that I am a super mom, that I do so much for Tucker and they wonder how I do it all. Well Missy and the Knights are one of those families that I look up to, and wonder how they do what they do, and keep a positive attitude through it all. I have gone to Missy so often during this past year (starting in October 2009) for questions, advice, and guidance on the "big monster", mito. I knew Samuel had mitochondrial disorder, and that Tucker likely had it as well, even though their cases present so very differently. Last October, I attended my second Share Union, which is an annual convention for NICU families, held by the March of Dimes. It is very important for me to see these women (and few men!) face to face because they really get what the NICU experience was like. Well there are also a few women who understand what it is like to take your child's problems home with you from the NICU, and watch them get worse, not better. Missy, Kate, and I joked about how our three boys lick their snacks and dinner instead of eating it, and how we order their own burgers and food, only to throw it all away. I just looked at a picture of Samuel, he is wearing a "hungry" shirt; Tucker has the same shirt. It was so nice to be around other moms who had encouraged me online for years, and Missy and I discussed Mito in depth that weekend; this is the point when I decided to look at further testing in Houston. At the Remembrance Ceremony for our little ones, Missy was chosen to read a speech or poem. I went up with her and stood next to her as she read a poem she wrote about how proud she is of Samuel....and her words brought me to tears. This week is Mitochondrial Disease Awareness Week; last week the Mito Clinic held a big fundraiser and awareness event in Houston. Missy and Ben shared their story, and she read the poem she shared with us last October. I am sure there were no dry eyes in the place. Missy and her family opened up their home to us, and gave us detailed directions for every part of our visits. In March, Mom, Gina, and I stayed at the Knights' house. Meeting Samuel was such a big deal for me; I had prayed for him for so long, and he was such a sweetheart. He was very interested in what kinds of medicines I was giving Tucker and if they matched up to the ones his Mommy gives him. He also wanted to help me feed Tucker, since he was apparently an expert:) In July we saw Samuel and Missy twice in one week, he was in the hospital and Missy said she had been praying for me. That was the day we found out Tucker had mito....I can't really express how much it meant to me that she was sitting there with her child in the hospital, and she was praying for me and offering me advice, helping us out with navigating the hospital and getting Tucker's labs drawn. Samuel spent years hooked up to monitors and tubes, with many many meds and much pain. Samuel endured more procedures, tests, and pain in his 4 years than most people can imagine. He amazed his parents and doctors over and over with his positive attitude and funny personality. Missy and Ben have done literally everything they could do to give their two kids the best chance at healthy futures. I doubt they ever took one day, one milestone, or one breath for granted. After four years, it just wasn't enough; in the end, the disease won. Samuel's fight is over, and he can now run around in heaven, with no tubes or wires to slow him down, no pain or worries to bother him. His family's new journey is just beginning; please pray for them as they try to move through their grief and this new "normal" if that is what to even call it. Also please keep his sweet sister Lauren in your prayers. She is 5 years old and just started kindergarten. I only saw Lauren and Samuel together once; and Oh my Goodness, what a pair! They giggled and loved eachother, it was one of the sweetest sights. I know that she is old enough to understand that Samuel is in heaven, and my heart is breaking for her right now. Please pray for the Knight family, and pray for a cure for Mitochondrial Disease.

Mitochondrial Disease Awareness Week

This week is Mitochondrial Disease Awareness Week.

The United Mitochondrial Disease Foundation works to raise awareness of Mito and to raise funding for research of the disease. By raising awareness about the disease and its effects on so many people, we hope to bring in donations to the UMDF to hopefully find cures for the different disorders. Mito is not a rare disease; however, most people have not ever heard of it. Through awareness week we hope to change that.

Tucker was diagnosed with Mito in July, so I have explained and re-explained this disease in the last few months. You can go back to my blogs from July and August to read more technical info on it.

The main point is that Tucker's mitochondria don't provide energy to his cells like they should. It's like his batteries are always running on low. Most people go to sleep to "recharge" their batteries, but for Tucker, sleep is never enough. His sleep isn't even restful, so he lives life in a state of exhaustion. This manifests in many different ways, depending on the person.

For Tucker, Mito mainly affects the cells in his brain. His brain is smaller than other 4-year-olds; in fact, it hasn't grown in about 3 years. He has autism, he is developmentally delayed, and attention problems, all of which can be linked to his mito. Tucker's case is so complex because he was born at 27 weeks, so most of his problems were blamed on that. Prematurity has taken so much from us, but there was always hope that he would "get over" some of those issues. In fact, he has...he got his trach out last year. Mito has taken even more from Tucker and our family....Tucker's ability to interact with his world, because his mito is strongly linked to his autism.....the hope that things can get better, as we know with Mito symptoms get worse not better....the security that parents feel knowing that they will watch their children grow and thrive; no mito family is guaranteed that.

We know that over time it will be harder and harder for Tucker's mitochondria, or "his batteries", to provide energy to his cells, and that one day his batteries will lose the ability to recharge at all. We hold out hope that this day will be years and years from now, and that in the interim the UMDF and researchers will find a cure so that this day will not have to come.

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.

Waiting...

Not too much has been going on around here...at least not medically. We have been really taking things easy and not doing too much. This time of year is always pretty good for us. It might not make sense to most people, but other preemie moms "get" it...Tucker spent his first summer in the NICU, and his due date was around the end of August. Every year the summer is kind of hard on me, especially the end of August. Sometimes I will forget just why it's so hard, then the first few weeks of September comes around and it's like I come out of a sad fog. Our situation doesn't actually change, and the weird thing is-Tucker didn't come home in September, so you'd think I would get even more sad....but that's just the way it has been for the last 4 years. Every autumn my feelings perk up, even though these months are never good for us. Tucker spent his first fall months in the NICU. For his second year, he was about 14 months old when we found out his brain had stopped growing. We were referred to the neurosurgeon and had CT scans of his brain. The neurosugeon had no explanation, but he thought we would wait and see. Two years later this wait and see showed us that Tucker's brain had grew barely a centimeter in two years; in October of 2009 Tucker saw a team of 8 specialists at the craniofacial team. We found that Tucker's skull was fused shut at 3 of the 5 possible openings; most kids' skulls don't close until years later. His brain was not pushing up against his skull, so this showed that we had two problems-his brain is not growing and his skull is fused. The doctors had no explanation for this, and they still don't; however this showed that his problem was very likely genetic, even if we couldn't find the exact genetic problem yet. The fall of 2008 is when we realized that Tucker was likely having seizures (until a 24 hour EEG showed that he wasn't) and when Tucker got the autism diagnosis. This summer we got his mito diagnosis, so maybe our usual October surprise came a few months early?? We are hoping at least! So for now, as usual, we are trying to enjoy the present until the next big issue comes up. Chris and I are moving forward, trying to figure out the next steps for our family to take. We have kind of put our lives on hold for awhile, both professionally (me) and personally, and we have decided to start moving on. We have been hyper-focused on Tucker for years, and his good transition to school is giving us some time to think about other things. His mito dr said to carry on "as normal"; after about 7 weeks of taking in his diagnosis, we are trying to decide what normal really means for us! We will keep everyone updated as things get decided:) Tucker has been doing pretty well at school; he didn't hit as much on Friday, so we count that as a victory! He is barely ever hitting at home, which is a huge change from last week. Chris spent Saturday night at the new hunting camp, so Tucker and I spent Saturday afternoon and night cleaning house (me) and playing toys (Tucker). Tucker has really taken much more interest in his toys since starting school and he does much more with them. He definitely still has no imaginative play (unless he is imagining that he is the boss of the world!), but he at least has a much longer attention span and he spends quite a while playing with his toys instead of crying by my feet. While we have these medical breaks, I have a tendency to avoid my blog. I don't feel like there is much to write about, and that our "regular" life is pretty boring. But then inevitably, another medical issue comes up (and it always does) and I realize that I wish I had wrote more entries about everyday life. So I will write about Tucker's new hobby, playing Tball:) Tucker's first game was hilarious and pretty chaotic. This week's game was more organized. There were covers on the dugouts for shade and Tucker stayed in the dugout much longer. There were also volunteers guarding every gate so the kids (mainly Tucker) wouldn't escape out to the stands. Tucker is really getting the point of the game, but he does not like to wait...the waiting for his turn to bat, the waiting for the other batters to hit the ball so he can run to the next base, waiting out in the field for it to be his turn to run back to the dugout. So there is a lot of chasing him back into his spot. For this game the director Betsy was there, and she helped Tucker one-on-one for awhile so that Chris and I could have a break! This is a picture of Betsy telling Tucker what base to run to next. This is a picture of Betsy and Tucker running to second base.

This is Tucker getting ready to bat...his batting habits are hilarious!!

He takes about 5 minutes to set up the tee and the ball exactly how he likes it. The coaches pulled the tall tee out so that it would be short, and Tucker did NOT like that. He picked up the extra piece and put it on, then he put the ball on, then he was ready!

At one point he ran from the field to help a batter on the other team set up her tee. It delayed the game by about 5 minutes! Here is a pic of the 3 of us with our Hurricane team tshirts on. I love the pic, but I need to crop the trash can out of it:)

Chris bought a new camera last weekend. He wants to use it to take pics of deer, but I think I will send the older camera with him to the camp! The other day Chris took some pics of Tucker on his swingset to get used to the camera. It is great, it takes so many shots per second so you can really get lots of pics when Tucker's in motion...which is almost always! For Tucker's 3rd birthday both Chris's and my parents got Tucker a big playset. That was by far the best idea, and Tucker loves it. Here is a pic of him with me on the big glider swing.

And a picture of him in his "baby" swing as I call it. He likes to start out in this swing so he can go super high, then we make him move to the other swings to work out his legs.

He loves to swing! We are hoping for many more boring weeks ahead, thanks for checking in on us:)

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.

"There are only two ways to live your life: one is as though nothing is a miracle. The other is as though everything is a miracle." Albert Einstein

On Saturday Tucker had his first TBall game. We signed him up for a local Inclusive League, so there were kids of all abilities from age 4-14 out there to play. Tucker was definitely one of the smallest kids out there, and he ran all over the place! Chris bought him a glove, and Tucker loved it:) He took it from Chris and put his hand right into it, Chris said that was all he needed; he was happy! We didn't really expect much of Tucker during the first game, since we hadn't ever taught him anything. We wanted him to learn about waiting for his turn to bat and being part of a team. He was so excited to play "bae-ball", he has learned many sports names from his speech therapy and Adaptive PE classes, so he knows what a baseball is. Once we got there, we got his uniform and put it on, between the big shirt and his glove, it looked like he didn't have an arm! I would say Tucker spent about 10% of the time on the field or in the dugout! He much preferred running into the parking lot to see the trucks, and of course sitting on the sidelines demanding his Sissy (Mrs. Mia) bounce him. I guess he's more of a spectator, haha! He did bat twice, and he fielded one ball. The first time I helped him bat, and we actually missed the ball on the tee! I was so embarassed, my family got a kick out of that. Then we hit the ball and ran to first base. He loved running, but did not like waiting for the next batter to hit for him to run some more. The second time he batted, Chris went with him, and he seemed to really get the point. It was the first of four games, so we'll see how he progresses. We are not expecting All Star quality, by any means, we are just hoping he has some fun. The weather was much better than it could have been, but we were still pretty hot! After running around for an hour, trying to make Tucker stay on the field, I wondered exactly why we had signed him up.....my mom told me to go home and check the pictures, then I'd see why. So she was right! Looking at the above picture just amazed me. The fact that Tucker has come through so much, and still has so much ahead of him, but he just embraces everything in life and has a blast....that is just miraculous to me. Chris and I (and our families) are trying to give Tucker as many memories and fun as possible, while also conserving his energy for his future battles. We choose certain activities for him, and schedule plenty of rest time, and he seems to do okay. We are just so happy that he can participate in TBall this year. To see him running around with other kids, and so happy to see his family watching him....it's great. Tucker has been showing us many other great things; we dog sat for Meagan and Chris's dog Izzy, and Tucker kept trying to take her out of her pen and calling her "Jace." Jace is Alexis's dog, and we had no idea that he even knew his name! I kept moving the kennel around trying to keep Tucker away from the poor dog, and Tucker kept chasing me saying "Jace, Jace." On Saturday night I put Izzy in her kennel for the night and covered the kennel with a blanket. She cried to get out, so Tucker walked up to the kennel, put his finger on his mouth and said "Shhhh." We cracked up. Yesterday we ran a few wedding errands, and Tucker was very well-behaved. He sat fairly still and quiet while Chris got fitted for his tux, and he even sat with me and looked at Bride Magazine. I showed him the brides in the big fancy dresses and said "princess." I am trying to teach him about princesses to get him ready to meet all of them at Disney World, I'm not sure that he'll care to meet anyone other than Mickey! Next we went look for shoes; I needed shoes for my bridesmaid's dress so that I can take it in to get hemmed. Luckily I found some on sale at the very first store; Tucker was okay in his stroller for about 5 minutes, then he started crying to "go, go." We took him upstairs to the carousel, and he rode it twice. He had the biggest grin on his face, he loves the carousel! I also have to share Tucker's latest night-time routine. He has a Toddler Bible, and he usually says "Bey-bah, Bey-bah" and flips through it. Well lately he lays down, puts his hands behind his head and says, "Read the Bey-bah." I was amazed the first time I heard it! I choose different stories and read them; I think sometimes he just likes hearing my voice. His favorite story is the story of Jesus's birth, he loves looking at the baby, haha! Then right after it is the story of Jesus getting lost and then his parents finding him in the temple. Well in Tucker's Bible, the story has a page with a picture of Jesus playing soccer with his friends. Tucker calls it "baketball" (basketball) and also loves looking at Jesus playing sports! He cracks me up! When he is ready to actually fall asleep, he takes my hand, puts it on his chest, and demands "sing." I sing several songs, including Twinkle Twinkle Little Star, and Hush Little Baby....if I stop for a second to take a breath or because I think he is asleep, he takes my hand again and demands "sing." He is so bossy!! But so stinkin' cute, so I oblige. By night time I am so exhausted that I sometimes would just love to skip the whole routine and just go to sleep! Then Tucker says something crazy or asks me to rock, and I am amazed yet again.