Big Blessings=Lots of Work

“Yes, He, who is in me, is greater than I will ever be, and I will rise”

“I will lift my eyes to the maker of the mountains I can’t climb”

“Oh Father, give me the strength to be everything I’m called to be.”

Our little family has been handed some major blessings in the last few months, and as any good blessing will, they have brought along tons of work. I struggle with all of this as I am only human, after all, and sometimes it all seems like too much work. I know that God has given us all of this because we can push through and it will all be so worth it….but some days it is so tough, I admit it! For any KLOVE listeners, you’ll see from the above quotes that Christian music has helped me through many tough days and reminded me of our blessings.


Blessing One: More Amazing Feeding Progress
Tucker’s feeding therapist came for her second visit in late February. Tucker was amazing, and did great with the new foods: avocado, tropical fruit mix, mashed potatoes, and hummus. He also did great with learning to drink chocolate milk and coke out of a cup. We use Simply Thick to thicken the liquid up considerably, but we were still surprised at how well he did.

So, with Tucker doing so amazing, we now have a whole new list of foods to add to his list. Tucker also gained 2 pounds since we started oral foods, so Jennifer said we need to cut out more tube feeds! She said if he stays on that path, he will end up at fat camp, hahaha.

It is seriously a very delicate balance to manage Tucker’s diet. I organize most of our lives on spreadsheets…..but Jennifer takes the spreadsheet to a whole new level with the meal plan :) This is not a bad thing, by any means, because it’s really the only way to look at everything at once. It’s just very hard to piece together meals with the right sugar content, the right fluid content, and the right mix of preferred foods and not-so-preferred foods. (Picture Tucker seeing white beans coming at him and screaming “Mo! Abocado! Abocado!” because he wants the avocado instead of the beans, hahaha.) Also, funny story-most kids will hang around the kitchen when you’re mixing a cake, hoping to lick the bowl. Tucker hangs around when we blend up avocado, he puts his little fingers all over the bowls and licks it up, he loves avocado!

Because Tucker has mito, he needs some type of food or fluid in his body every few hours. With tube feedings, this was easy, because even when he is asleep we can feed him. Now he takes in so many calories by mouth that we have cut his tube feeding back to just two per day-one can of Diabetasource formula at school, and one 8 ounce cup of blended food before bedtime. While this is amazing, and such a blessing, I can not stress what a HUGE change this is, as I have spent the last almost 6 years feeding my kid through a tube. When he had sugar issues, it was scary, but we just cut the sugar out of his blend and put it through his tube. Now, his absolute favorite foods are pudding, yogurt, and any fruit…of course all of these foods are full of sugar, in particular the pudding which has the most and of course is his absolute favorite food. Thank goodness that avocado is low in sugar.

So right now, Tucker’s list of food includes: avocado, sweet potatoes, hummus, white beans, applesauce, tropical fruit mix, chocolate pudding, soy yogurt, mashed potatoes, and Boost Glucose Control shakes. He really loves the chocolate Lactaid milk, but I swapped that out for the Boost Glucose control because it has more nutrition and much less sugar. He didn’t even react to the change, so that’s great. We are hoping to get the Boost covered by insurance after we see the nutritionist.

Just a few months ago, I couldn’t have imagined that Tucker could eat so many foods. We are excited, but just so that everyone understands (and so that I can look back on this time and remember how far we have come), Tucker’s feeding sessions are not easy or like regular dinner time. They are very structured, and Tucker expects certain things to be done before and after he eats. All of the food that he eats is blended down to the point where there are no grains or pieces. For most foods, this means that we have added quite a bit of Lactaid milk to get it very smooth; then we add Safflower Oil to some of the food to add some good fat calories and to get it even smoother. Even something that you’d think is a good “baby” food, like applesauce, is WAY too gritty for Tucker to eat without getting blended first. This is not how it will always be, we will work to build his texture tolerance up over time; but for now, the blender stays out on the counter, and at least two foods are blended up each night. I’ve said this before, and it is even more true now…I feel like I spend more time blending Tucker’s food than actually being with Tucker. He is actually scared to death of the blender, so when I blend up his food he is at least one room away. My goal is to have at least two weeks of each food blended and frozen into ice cubes in the freezer, because we have got to get over the constant blending and move onto some sort of family night time routine. I think that we will actually buy a little freezer for the kitchen that will just hold Tucker’s foods. That way I can blend up a bigger batch, pour it into ice cube trays, then the next day pop out the ice cubes and seal them up into big Ziploc bags. That way we always know what we have and when to make more.

Even though the blended food is so smooth that you can’t see any texture to it at all, we still don’t just feed Tucker as it is. We set up one of his favorite videos (the current one is Mickey Mouse Goes to Wonderland), set out the two foods for that meal (one preferred, one not preferred), and the cup for the chocolate shake. We have a visual of two bowls, and one cup. Tucker has a book of Mickey stickers, and for each empty bowl or cup, he gets to put a Mickey sticker on the picture of the bowl or cup to signify that that part is over. He is very proud and happy when he gets to put the stickers on. Chris was pretty sick on the second day that Jennifer was here, so he missed the part of training about the visual aide. So on Tuesday morning, he started feeding him breakfast, and Tucker threw a fit….it was ugly :( I went in the room, and noticed there were no pictures of bowls laid out. Once I drew out the pictures for Tucker and told him he’d get his stickers, he was fine and started eating for Chris. Only a few people are actually trained to feed Tucker, there is just so much that goes into it.

We feed him only a certain amount per spoonful, and we have to use a particular spoon. He sits in his special chair with the buckle on it, and the tray in front, because when he feels more secure he does much better. He can also have a toy or two to hold or play with while he eats. He usually has one or more teddy bears watching the meal as well. We feed Tucker the non-preferred food first, so that he is still interested in eating the second bowl even if he is not very hungry. So really the first five minutes of each feeding are the worst, as I think Tucker is still testing us to see “wait, they expect me to do this again? They aren’t over this whole eating by mouth phase?” then he has to take a few bites to remind himself that no, it really isn’t going to kill him, and that the faster he eats the non-preferred food, the sooner he can get to the good stuff. Right now his meals are taking us about 30 minutes, and it’s pretty hard for him to sit for that long. We are hoping to get the time down soon. He has 3 big meals-breakfast, snack after school, and dinner time. He also gets two smaller meals at school during the day. I am trying to change the meal plan so that he’ll get more food at school, but so far we haven’t been able to figure out which foods to send with him other than his two favorites, yogurt and pudding.

Tucker’s regular ABA is going well, and his ABA therapists help feed him his afternoon snack. We have been short one ABA therapist for two months now….so Tucker has ABA two or three afternoons each week instead of the desired five afternoons per week. We have had several great therapists apply, but then fall through at the last minute. Thank goodness that my mom gets him off the bus on Tues and Thurs, otherwise I have no idea what he’d do after school. He is still making progress, but it would obviously be better if he had more therapy. So please pray that our family can get used to the new eating routine, and that we find a new ABA therapist that fits in with Tucker’s program and schedule.

Blessing Two: Check out Tucker's Picture :)

Yes, we are expecting a new little one at the end of September! SOOO exciting!!


So you may wonder (as I do every day), “well Leigh, you are hardly pregnant, how could a very small baby in your tummy be work?” This little one has zapped every ounce of energy in me, and has turned me into a nausea machine as well as re-igniting my childhood asthma….it is not pretty! So I am now on the 8th week of needing 10 + hours of sleep at night, plus 6 different meds just to get through the day. Thank God that I have had some energy return in the last week. I lost 4 pounds, but have now gained one back, so that’s good.

I have already been to the doctor more times than I can count, and had lots of labwork done. All is normal at this point, yay! I will be seen by the high risk doctor starting at 18 weeks, and we will do everything in our power to get to full term this time. Tucker deserves a healthy little sibling to hold and love on. For people in our area, pretty much every baby born from 1967 on was born at Woman’s Hospital….including Chris, Tucker, and me. That is where Tucker spent the first 8.5 months of his life, and it’s where I now volunteer for NICU parent to parent support. Well, a new hospital will open in June, right when I should be at 24 weeks. We are praying to get way far past that, and deliver in the new hospital. That will be exciting, though confusing for all of the visitors, I’m sure, as everyone is so used to the current hospital.

Tucker has been asking for a "sistah" since before I was even pregnant....what we all think he really wants is for his cousin Baby Kinley to move in, haha. I guess he wants a sister because then he can keep his daddy all to himself and the baby can hang out with me. My heart has broken as I haven't had the energy to care for Tucker the way that I like to lately. Chris, my mom, his therapists, and Chris's parents have done a great job, but when I hear Tucker at my bedroom door "Mama, come play wit me" my heart breaks! So please pray that my energy comes back and we have a long, boring, healthy pregnancy. Tucker has enough changes coming, he needs his mommy at her best for the next 6 months.
 
One last thing: Tucker has an appointment with the surgeon to check his leaky g-button this week and a follow-up with the ENT as both of his ear tubes are trying to fall out but refuse to, and he is on his third ear infection in three months. I hope to update on both of those issues soon. Tucker also starts T Ball this Saturday, let's all hope he stays on the field this season :)

EEG Results and Sickness Update

There is so much to blog about, including the big Fishing for Tucker tournament. Despite the rain, it was a huge success!! 96 boats entered the tournament, there were bands playing all afternoon, jambalaya and cokes being sold, the raffle tickets, a bake sale, face painting, and tons of people and donations!!


My cousin and uncle came in from Kentucky, and Tucker was so excited that “Jon Micah” was there with him, he went right to bossing him around, as if no time had passed since he last saw him. Molli loves him, too, but she calls him “Michael Jackson”….still haven’t figured that one out, haha. This year they added a Kids Fishing Derby, and lots of kids came out to fish in the Cabela’s pond. The kids loved it, and some of the fish they caught were huge.

You can friend “Fishing for Tucker” on facebook or go to fishingfortucker.com to learn more about the event. It is amazing that our family and the local community put this on to help us pay for Tucker’s medical and therapy expenses.

The tournament was Saturday, and then we left for Houston on Monday. If anyone is thinking: that was a horrible idea, well you are right! I don’t know why I didn’t foresee the scheduling as an issue. We schedule the appointments so far in advance that I just take whatever date they give me, then by the time I knew when the tournament was, it would have been very hard to move the appointments for two drs. Anyways….Mom, Tucker, and I were exhausted before we even began the trip.

So we left Monday afternoon, and of course as soon as we’re on the road Tucker was asking to see Morgan and Grace. We met them at Taco Bell for dinner in LC, they were so impressed to watch him eat applesauce by mouth! That was the first time that he ate for us that wasn’t at home or at school. He did great, even with the distractions all around him. He ended up eating very well for the whole trip-pudding and yogurt when we were away from the hotel room, and then sweet potatoes and beans when we were in the hotel room because we needed the microwave. He is doing great with the eating!

I scheduled the appointments very early in the day to reduce wait time (we usually wait on the drs at least 2 hours!), so we didn’t spend the night in LC. We said good-bye and headed on to Houston. I hadn’t made hotel reservations, as I knew there was a chance we’d give up and not be able to make the whole drive. So while I drove, mom was trying to make reservations on my IPhone, which was almost dead and therefore stuck to the very short charging cord. Well, my cup full of ice and water was open, and the phone fell into it! So there went my phone, luckily mom made the reservations first, we just weren’t sure how to find the hotel after that…… but anyways, we’d been there so many times that we found it very easily.

Tucker was of course thrilled to be at the hotel, so we got ready for bed and were asleep by 1130. The next morning we were up by 6 and we headed to see Dr. K at 745. The wait was very short (yay!) as we had an 830am appointment. We found out last week that Dr. K is expecting a baby, so we had to tell her congrats, of course. She looked so excited when she came in to see us, I thought she was excited because we told her congrats…..it turned out she had some pretty great news for us.

Now, at first this doesn’t sound good. We (as in Tucker’s parents, grandparents, caregivers, teachers, etc.) have known for a long time that Tucker’s sleep and his brain activity are not quite right. We have never actually seen him have a seizure, I don’t know anything about seizure meds or dealing with seizures…but we knew that proving that he had seizures would make sense. In 2008, Tucker’s lung dr in BR ordered a sleep study, and the sleep study showed abnormal brain activity. Because he is not a neurologist, he referred us to the BR neurologist, who ordered a 15 minute EEG, and then a 23 hour EEG. Both of these came back normal. Tucker continued to have abnormal sleep studies, but the neurologist said the EEG was normal, so that was the final word, not the sleep study.

Fast forward to 2011. Dr. K saw the sleep study results, and she ordered a 23 hour EEG in Houston. We went for this test in December, I posted about it a while ago. It takes 4 weeks to get results. So we timed it perfectly to go back to see Dr. K, although that was not on purpose.

Dr. K said that Tucker’s EEG was abnormal. He did not have any seizures for the 23 hours; however, he has epileptic activity, or spikes, or charges. The way she explained it to think of Tucker’s brain as a campfire that has been put out. You shouldn’t really have any sparks. For a regular person, every once in a while there will be a spark, and it shoots out and dies off. For Tucker, the sparks are often, and at night they are continuous. And with that, there is a risk that one or more of the sparks will fly off and start a forest fire. Luckily, as far as we know, that hasn’t happened. So then why did she seem so happy to be telling me this?? Because this type of brain activity is associated with language delay and autistic characteristics, and it has been treatable in other kids with a seizure med Lamictal. When the Lamictal works to control the brain waves, it also improves the language and behavior issues….wow!! This could be huge for Tucker.

So then I asked about his sleep-of course this brain activity makes him get poor sleep, correct? She explained that yes, it affects his sleep, so if the Lamictal works, he will get more productive sleep. This would literally change our lives. Tucker sleeps a lot…and on the weekends sometimes takes two naps. We have an almost 6 year old kid, but we schedule our lives like parents of a baby, never wanting to interrupt Tucker’s nap time or possible naps, or really even his bedtime because of the fear of him losing sleep. If we have an afternoon event scheduled, like a birthday party, I make sure Tucker sleeps late and takes a morning nap that day. Not exactly normal, but we are used to it. For Tucker to actually get 8-10 hours of sleep at night, and have that be all he needs?? I’m not sure Chris and I would know what to do with him, hahaha.

We will start the Lamictal next weekend at a small dose, then increase the does little by little for 8 weeks. Then he will repeat the 23 hour EEG to see if the meds are working. We will follow up with Dr K in June, since she is due in August. So that’s good for us, as August is a bad time for both Chris and me to take time off of work. As we were leaving, once again I showed my lack of scheduling abilities, by agreeing to an EEG date and return appointment that was right in the middle of the week when Matthew and Jon Michael are coming from Kentucky to visit. Oh yes, I’m sure Tucker would love to be in Houston while the boys are in Gonzales….. So mom pointed that out, and I went back and changed the appointments.

We got to visit with Missy (Samuel and Lauren’s mom) for a bit, as she now works in the clinic. I can’t say how great it is to see her, we enjoyed chatting with her for a bit, even though Tucker was bossing us “go to da hotel!” “get out!” the whole time. Tucker learned a huge skill on the Monday before the appointments, he learned to say NO, or “mo!” as he says it. And he is NOT afraid to use it! He told me no about 50 times a day on that trip, and I have only heard him tell Chris “mo!” once so far. After the appointment, we grabbed lunch at the hospital cafeteria, then we went to the hotel and took a 3 hour nap….seriously needed that!

That night we went to Olive Garden and Tucker licked all of the salad and breadsticks, and his own pepperoni pizza. He also demanded to see “Baby Kin” all through dinner, as if I had her hidden somewhere. I told him “we are in Texas, Kinley is in Louisiana”; he just stared at me.

We went back to the hotel, all had baths, and still went to bed early. The next morning we packed up and headed to see Dr. P at 815. We barely waited to see her, the early appointments are definitely a good idea. She came in with okay news. Tucker’s Feratin level is pretty low, this is a level that leads to Restless Leg Syndrome which Tucker has while asleep. She is going to discuss this with the sleep dr and hopefully treat it. So Tucker’s sleep should be improving soon. Tucker’s IgG levels are low, these are levels that show immunity. Last time they were checked (6 months before), his levels were normal, now they are on the lower end of normal. Dr. P said that as long as he isn’t sick often, she isn’t too worried about the numbers right now. Well, he isn’t sick that often, so we aren’t worried either. Dr. P had also checked Tucker’s blood 6 months earlier to see if his vaccines were effective. One of the vaccines that babies get, Prevnar, helps to fight against bacterial infections. Well Tucker had no immunity to that, because his vaccine did not work. So her suggestion was to give him the vaccine again, and then re-test his blood in 6 weeks to see if his body had the immune response for it. She asked us how Tucker has been doing in the last 6 months, and we said great. He had a few minor ear infections since his tubes fell out, but nothing big. I think he only missed one half-day of school so far due to illness, and that was a sinus infection. She asked us “anything else?” I said “well he is potty trained now.” Dr. P said that made her day! So mom mentioned that he eats by mouth. Dr. P and the social worker were obviously very impressed, so they had to hear all about ABA and how Tucker has changed over the past 6 months. Then the nurse came in and gave Tucker the vaccine, he was such a big kid about it. He was just happy about the band aid, he loves Band Aids! Santa Claus brought him some band aids in his stocking, they were all used up on fake “bo bos” by New Years.

We left the doctor’s office and headed home. We didn’t stop in LC as Aunt Kim was home sick and the girls were at school. We made pretty good time and got home before Chris came home from work. We did stop at Whole Foods on the way home, as Tucker was out of his Soy yogurt and pudding. I bought $50 worth…seriously…that way I don’t have to go back for a long time….and knowing that my son was going to eat every single bite made me not even care about the price. That evening was pretty low-key, as we were all very tired.

The next morning, I got up and got ready work. Chris started getting Tucker ready for school (Chris was off for two days), and he realized Tucker was very warm. Then Tucker really couldn’t put any weight on his leg that he got the shot in. His temperature was 101, and he never runs fever. Even when he has strep throat or an ear infection, his temperature doesn’t go up. So Tucker stayed home with Chris, and they both slept a lot. He still had ABA therapy with Amy in the afternoon, and he did great with that. On Friday morning, I got up and got ready for work, and Chris started getting Tucker’s medicine ready. I went in to wake Tucker up, and he yelled “light off! Blanket on!” I told him no, he had to go to school. He said “Mo! Stay home wit Daddy!” Well, excuse me! Luckily for him, that was an option, hahaha. We did take his temperature and make him try to walk a little, and he did not look good. Chris realized that we had been giving Tucker the Ibuprofen and Tylenol dosage for a 4 year old, and Tucker really needed an extra 2.5 ml to keep up with his weight. So once he figured that out, Tucker’s fever and pain were much better controlled. I did not realize that he had gotten big enough to increase the dose, good thing that Chris checks those kinds of things!

So I went to work again, leaving them home together. That day was a little better and more active, so by Saturday Tucker was bored.

By Sunday, Tucker had a cold and a scary sounding hacking cough. Chris went to the camp with his dad, and I pushed cold meds and pain meds all day. That afternoon Chris got home and took Tucker to the after hours doctor. They came home with meds for an ear infection and cough meds. I thought that maybe the ear infection and cough were related?? But unfortunately after 4 days of antibiotics, the cough is still very much there. It’s awful :( Tucker has coughing fits as long as he’s awake. He doesn’t have a fever or anything else, though, so he spent most of the week at school. He was especially excited on Tuesday when he got to bring his “vawentines” to school for his friends. On Thursday morning, the cough seemed to be much worse, and he asked to “stay home wit mama”. I called the pediatrician, and she suggested a different cough medicine. Because he had no other symptoms, she suggested I give him the new meds and watch him at home until Monday. So on Thursday Tucker watched about 8 straight hours of Mickey Mouse Clubhouse, and didn’t move around, but the only time he really had coughing relief was during his nap. We started the Delsym, along with Mucinex and the regular cold meds Thursday evening, and Tucker didn’t cough from 630pm up until 2am. Oh, and Chris lathered up Tucker’s chest with Vick’s vaporub about 5 times, and every time he woke up coughing, Chris woke up to put more on. At 2am I gave Tucker more night time cold meds, which put him back to sleep, so no more coughing until this morning.

I guess we’ll see how the weekend goes, I am hoping he has some relief soon. He is certainly a very good patient, no complaining or whining. If I was coughing like that, I would have had several meltdowns by now. Even with the hurt leg last week, he just hobbled around, no whining from him. He is such a sweet boy, thanks for checking in on us.

General Update

Tucker has been doing so well with eating lately that we are increasing his volume. Instead of eating just 2 ounces per meal, we moved up to 2.5 ounces per meal last week, then 3 ounces per meal this week, etc., until we get to 4 ounces per meal at Jennifer’s next visit. She will then introduce new foods, so he will start eating 2 ounces of 2 different foods at each meal. He is doing very well with the additional volume so far….except that I apparently don’t know the difference between 1 and 2! I like to prepare a big batch of food for Tucker at once, then measure it all out into his portions and freeze them. Well, I thought I had it all measured out into 2.5 ounce portions for the week, then this morning I realized he has 6 bowls of 1.5 ounces of sweet potatoes….This was easy to fix as I have a bunch of 1 ounce frozen sweet potato ice cubes, so I just added one ice cube to each bowl. I need to turn my brain on when I am packing up food next week!


As Tucker eats more, we obviously run out of food sooner. This means that I am blending and freezing at least one of his five foods every night. Plus I still blend his tube feeds once a week. I feel like my at home time has become a never-ending blending marathon, and in two weeks we add 5 more foods to the mix! One of Tucker’s 5 foods is Dad’s white beans. They are very flavorful, they are full of nutrition and calories, so they are a hit. We were out of beans, so I asked Dad for more. Well, he only knows how to cook one way-in a huge pot, making enough to feed a whole army of Tuckers. No kidding, he cooked on Monday, and I had a huge bowl of beans to blend up and put away. At just 2-4 ounces per serving, we now have at least a month’s worth in the freezer :)

I forgot to post about Tucker’s trip to the dentist, this was the day before Jennifer came. Tucker loves going anywhere, just as long as he gets out of the house ;) So the weekend before the dentist appointment, I had told him that he was going to the dentist that week, and the dentist would clean his teeth and count them. On that Saturday Tucker was so bored, despite all of the new Christmas toys and videos he has, so he was trying everything: “go to nana’s!” “ go to sissy and pops!” “go to Paw Paw Eds!” “go to da dentist!” I asked him, “really??? Now that is just pathetic!” hahaha

So on that next Thursday morning, he made it to the dentist. He was SO well behaved, and almost seemed happy to be there. I recently had my own dental check-up, and I admit that I hate it. I don’t like having someone else messing with my teeth. Well, Tucker was fine, he laid down and watched the hygienist’s every move; he even held her hand to “help” her. The dentist said his teeth look great, they took Xrays, and he had no cavities. The XRays kind of scared me, as his permanent teeth look huge…they are definitely going to be crowded in his little mouth and need some orthodontics to help that situation.

I am not usually sad about Tucker passing good milestones. I am not one of those moms who is sad that their child is growing up too quickly, as Tucker has always taken his own slow pace getting to each developmental level. Kids grow up, that is what they are supposed to do if we are lucky. Well, at the appointment the dentist mentioned how Tucker will be losing teeth soon and that is okay. I asked how that could possibly be ok?? He said that Tucker will be 6 in May, and that is the age kids start losing teeth. I just stared at him like he was crazy…surely, my baby is not old enough to lose his teeth?? He hasn’t even used them yet! Lol My mom came to pick Tucker up to bring him to school so that I could get to work. She laughed at me and told me that, yes, Tucker was old enough to lose his teeth when he turns 6. Well at least we have a few months until then!

Tucker loves Jason Aldean, who is a popular Country Music singer. Once of his favorite JA songs is “Johnny Cash.” This song sounds nothing like any Johnny Cash songs I have heard, it is just a fun song with a good beat. Well, Tucker also likes Adele, so mom plays the Adele CD in her car while they wait for the bus in the mornings. The other day, for the first time, Tucker said “take out Dell! Turn on Johnny Cash!” lol, Mom laughed so hard at him and of course obeyed. Now Johnny Cash is the only song playing in the mornings, Tucker even plays the drums on the dashboard like Uncle Chris….although I hope Uncle Chris has a little more rhythm!

We went last Saturday to visit my parents and to see Jessica. We couldn’t find Christmas bear at the moment, so Black Bear came along with us. Tucker had to put Black Bear for a “map” in Jessica’s bed, and every 5 minutes he had to check on him….as if he wasn’t going to listen to Tucker and he was going to sneak out of bed. At one point he said “Poppy, come with me!” Well, you don’t ignore that kind of request so dad went. Dad said they had to check on the bear, fix his blanket, then Tucker said “Beah is seepin’ he is so tiyad.” Absolute cuteness!! :)

Chris, Tucker, and I have been going through a bit of rough times lately, as Chris works 7 days a week, 10 hour days, with 1.5 hours of commuting each way. So Chris is gone for work before we wake up in the morning, and he gets home around 6 or 630 at night. We haven’t had much family time, and one thing about Tucker is that he likes his whole family together. The first weekend that Chris worked, Jennifer was with us for therapy, so we were busy. Then Chris was off (he works every other weekend), and that was nice. Last weekend, Tucker and I knocked many tasks off the to-do list, we were very productive. Tucker loves running errands and going to stores, as he gets prizes for behaving. Last Saturday he got Cheetos and Reese's, he was thrilled.

Sunday was a different story. He woke up at 6am asking to “go to chuch.” He loves mass, well, he loves the music at mass and getting to walk up the aisle when I go to Communion. He is fairly bored with the rest of it. When he was younger I just left him home so that I could go to mass, but he is almost 6, and we need to give him time to get used to the routine of mass. He knows that if he is good, he gets to go to Paw Paw Ed’s house after. Well this Sunday, he was good up until we all said the Our Father. Then he started demanding to go anywhere…..loudly…..”go to Paw Paw House!” “go ride in the truck!” (we had the truck bc Chris took my car to work) “its time to eat!” “go to the potty!” “go to the baby room!” He calls the “cry room” the baby room…it is a soundproof room with a big window. You can take your crying baby there and still see and hear the mass, then the hope is that they calm down and you can come back to the main church. I try to use it as a punish room, as in, if you are bad enough to go in the cry room, you are in big trouble. The problem is, Tucker loves babies and therefore the baby room. So it’s not really a punishment to be stuck in there :/

I couldn’t get him to stop yelling, so off we went to the baby room. When we got in there, I told him to calm down, and that his yelling meant he wasn’t riding home in the truck, but he had to ride home in Nana’s car. He was SO angry, he started kicking and screaming and threw himself on the ground….he was being much louder than any actual babies! The remaining 10 minutes of mass was horrible….all I wanted to do was pick him up and run out of there, but there are two problems with that: 1. He is now huge, and I am not actually able to pick him up and/or physically force him to do much… and 2. That would have given him EXACTLY what he wanted…to get out of church. I would have been reinforcing the bad behavior by giving him what he wanted in the first place. So I tried to do what we usually do, which is let the fit play out until he got over it….pretty embarrassing!!

Right when mass ended, I took him into the bathroom instead of fighting the crowd to get outside. I told him I was so angry, and that he was too big to act like that. When we got outside, Mom and Gina had already left….I forgot to tell them about Tucker’s punishment….so he thought he got to ride in the truck. I called Gina, and asked them to please come back and get Tucker. They drove up to us, and I put Tucker in his carseat in their car. His face fell, he was so sad. I told him that I’d ride in the truck, and I’d meet him at our house in a minute. Well, in the short ride from the church to our house Tucker kicked and screamed and broke the cupholder in the car :/

Once we were home he was in a better mood. I told him if he calmed down he could ride in the truck and go to Paw Paw Ed’s house. He straightened up and we enjoyed a visit at Paw Paw and Maw Maw’s. Tucker played while the adults visited, then Gina and I took him outside to swing and listen to her IPod. He was so very happy, complete opposite of that morning.

In two days, we will have the Second Annual Fishing for Tucker Bass Fishing Tournament. You can check out fishingfortucker.com for details. Last year was amazing, and this year our family and the local community are making it bigger and better. Raffle tickets for several great items ($500 Visa gift card, 42” TV, $1000 to Wall Décor and More, Kindle Ereader, and 2 custom made wooden ice chests-one LSU and one Saints) are available, and the tickets have been selling like crazy. There will be jambalaya, baked goods, t-shirts, coozies, cokes, and beer for sale. There will be bands playing from 10am-2pm, then the weigh-in and all of the door prizes start at 3. A local advertising company designed and donated 5 billboards, so Tucker’s face is all over town, just like last year. We are amazed at how far Tucker has come since last year’s tournament, and that is because of how much the fundraiser was able to help with Tucker’s care and services. We are so blessed!!

"It's Time to Eat!"

“Even though the journey's long, and I know the road is hard

Well, the One who's gone before me, He will help me carry on

After all that I've been through, now I realize the truth

That I must go through the valley, to stand upon the mountain of God”

Tucker's feeding journey has been just like the song...long and hard....for years I wanted to give it up, as Tucker had no interest in eating. Over the past few years, he loves to lick food, but that is as far as we got for so long. That is one of his most obvious differences from other kids. At birthday parties or school parties, weddings and family gatherings, he has no interest in the food, no interest in sitting with the other kids while they eat; he has no interest in sitting with the family for Sunday dinner or holiday dinners. Our hope has always been that he would at least like to eat socially, as so much of our daily lives revolve around food.
For those of you who don’t follow us on facebook, the past week has been huge for Tucker and his feeding journey….huge for us all. I have cried A LOT of happy tears, tears of shock…. We spent the last 5 years trying to get Tucker to eat by mouth; we have made progress, but not enough to get him to swallow even one bite of food. For the MLK weekend, we had an ABA feeding specialist fly in from Pennsylvania. She spent 5 days with Tucker (4 at home and one at school with him Tuesday after the break). He is now eating 2 ounces of food at a time, he eats very pureed versions of sweet potatoes, white beans, and applesauce. He also eats soy pudding and soy yogurt out of the cup.

It is called intense feeding therapy, and it certainly was intense! Tucker came to the table for meals 13-16 times per day. He got a lot of reinforcement in between meals (he usually had 30 minutes in between meals), so that helped to keep him excited about eating.

Tucker has 8-10 hours of ABA therapy per week, they work using a Verbal Behavior Approach, meaning that all of the tasks and work are focused on acquiring language. All of the skills they work on are real-life things that Tucker needs, such as being able to recognize and express emotions, being able to wait for things he wants, transition from one activity to another, etc. The ABA plan is what got him potty trained in 3 days, once we all knew he was ready. So over labor day he was potty trained in 3 days. Over MLK weekend it wasn’t quite as simple as getting him to eat in 4 days ;)

Jennifer flew in on Thursday night and stayed in a hotel. She arrived at our house for 8am on Friday. Tucker was off of school, and I took the day off from work. Chris is working 7 days a week for a turnaround, so Mom joined us at home. Jennifer and I had talked for over an hour earlier that week and had emailed back and forth. The trick is finding reinforcement that works for each kid. So she knew that he liked lamps, and he really likes visual reinforcement; for example, each time he does a task, he gets to put a Velcro token on the board. Then once there are so many tokens, he gets a bigger prize. On Friday morning Jennifer showed up with a token board, where the tokens were little lamps! She had printed out pics of a bunch of lamps, had them laminated, then cut them to make little tokens. She greeted Tucker then told him they would sit down and watch a video. If he’d work hard to eat, he’d get a lamp for every bite. He was pretty excited, except for the eating part! 

The problem that we have had with Tucker for years is that he is a professional at spitting out food. There are so many therapy tricks that work with other kids. You use special spoons, turn the spoon sideways, turn the spoon upside down, put the food at the back of his tongue so that he has no choice but to swallow, just feed cold food because that facilitates the swallow….etc, etc, etc, none of those tricks work for Tucker. He has shown us that he was going to eat when he was good and ready, if ever.
Jennifer tried the spoon on the first few bites, and then she took out the Nuk brush. This is just a regular little tool, it looks kind of like a tooth brush. She put food on it, then deposited it on his tongue. To start out, he had to get three bites, which would get him 3 lamps, then he got whatever he wanted, which 99% of the time was to go outside for 30 minutes. He also got to watch Mickey Mouse, Barney, or Kipper after each bite, so there was so much reinforcement going on. Jennifer had to hold Tucker’s chin and put her hand behind his head to prevent him from raring back to get away from her. After about 3 feedings, and some ugly bites, I think he just kind of gave in and realized that swallowing the food was going to make his life SO much easier, as Ms. Jennifer was not leaving! As Tucker went outside with Nana, Ms. Jennifer told me that she had Tucker figured out, it was going to be easy from now on. This was around 1030 am, I thought that surely she couldn’t have cracked Tucker already.

Well, she kind of had! Keep in mind that all day on Friday he only ate chocolate pudding. So you wouldn’t think it would be so hard to get a kid to eat chocolate pudding, but this is Tucker, after all. By Friday evening when Chris got home, Tucker had gone from eating 3 bites, to 5 bites, to 10 bites, to 20 bites, to one ounce of chocolate pudding!! We were all in shock. On Saturday, Jennifer came back (Tucker was confused, I’m sure!) and introduced mango yogurt. Tucker loves tart tasting food, and she got him from the 3 bites up to one ounce in 3 feedings. Then we moved onto applesauce, sweet potatoes, white beans, and pureed mac and cheese over the next two days. The mac and cheese still had little pieces no matter how much it was blended, so Jennifer ended up scrapping that food, as Tucker gagged after every bite. 

On Sunday she tried to go back to the spoon, as everyone’s lives would be much easier if Tucker ate off of a spoon instead of a Nuk brush. That was rough, as well. It was like Tucker had just gotten used to the Nuk brush, and he had to learn how to move his lips around the spoon. It was hard but Ms. Jennifer showed Tucker (again) that he could do it if he just wanted to, and by lunchtime that day he was eating off of a spoon!

That day was hard, but also funny, because during his 30 minute breaks, Tucker demanded to “go to Paw Paw house!” so we went to Paw Paw Ed’s house 3 times in about 2 hours. As soon as he’d get comfortable, it was time to go home again. He would hurry up and eat his bites at home so that he could get back to Paw Paw’s. We also took a trip to the local store to get a large bag of the little chip bags, so he was so excited. Then on Monday we went to BK to get him a kids burger and to Wal Mart to get a Snicker’s bar (just to lick, of course).

Monday, which was Training Day, was even harder. Tucker compartmentalizes people and places. Meaning: mommy can rock me, daddy can drive me in the truck, Ms. Jennifer can feed me, The End. Well, on Monday, Ms. Jennifer transferred the feeding over to me first (I had to feed him 3 times to be considered trained), then Ms. Amy his BCBA therapist, then to mom. So he had his whole system going with Ms. Jennifer, and we all had to sit in and learn with him. This also meant that he ate more frequent meals with smaller portions so that we each had a chance to feed him. And it was Ms. Jennifer’s last day at our house, so we talked to her more often instead of taking him outside. You can imagine how Tucker reacted to that!

By Monday night, Tucker was eating better than I could have imagined, but the fear was starting to set in: How on earth were we going to pull this off once Jennifer wasn’t here for 8 hours a day???? My first test was Tuesday morning, when I had to get myself ready for work, get Tucker ready for school, and get 2 ounces of applesauce into Tucker’s tummy, via his mouth. Jennifer gave us a guideline of 20 minutes for meals. I got the food ready (I have to add 1 tsp of safflower oil to it to add 40 calories and make it smooth), got the Mickey Mouse video on, and called Tucker to the table. He hesitated for about one second, then he realized I was serious….and he ate the 2 ounces in 9 minutes!! Once he was done, he said “go to school!” the poor kid was so excited to get out of the house and go back to his regular life.

Jennifer went to school about 30 minutes after the day started; she said Tucker gave her the pop-eyed look. We know that look well, haha, it is his “what the heck are you doing here?” look. We told Tucker that Ms. Jennifer was going to school so that his teachers can feed him, but I guess he thought we were kidding. His teacher Mrs. Amy did a great job feeding him as well; everyone at school is SO excited that he is eating, and as usual, his teacher is going above and beyond to help Tucker with whatever we ask.

That afternoon Jennifer went to our house after Tucker got off the bus to finish training mom and also work with Amy the BCBA, because Amy will need to train the therapists who work with Tucker after school. (Once Jennifer trained us, we could then train other people. I have already started training Chris, he is doing a great job.)

She finalized Tucker’s feeding plan and protocol, and together we removed 13 ounces of Tucker’s tube feeds per day!! This is amazing, incredible, unbelievable….I can’t even explain what a big deal this is. Tucker now eats 5 small meals per day, and it has been going very well. It is challenging for me to keep up with blending his regular tube feeds and also keeping up with his blended oral food. (Chris is working 10 hour days plus 1.5 hour commutes both ways, so he can’t help right now. The short amount of time that he is home, he spends with Tucker, since Daddy time is Tucker’s reward for eating his dinner.) I am still getting the hang of everything. I think that having a free weekend will help me to catch up with everything over the next few days.

Jennifer will be back over the Mardi Gras break (poor Tucker never gets a vacation!) to add 5 more foods, and to work with drinking from a cup. She will also come back at the end of May, not sure what we will work on then. In another of many miracles in Tucker’s care, Jennifer will be cutting her travel time down in June, and then again in September (she travels a lot right now), so we found her just in time!

Once Chris has a free couple of days, we think we are going to take Tucker to a local hotel “hotayal” for a night as his reward for working so hard and being his amazing self. Jennifer said the hotel she was at had an indoor pool, so we need to schedule a night there.

This weekend is Kinley’s First Birthday party, we are very excited to be celebrating with her Tucker has been practicing singing “Happy Birthday” to her, he finally says “to Baby Kinley” instead of “to Tucker” for the name in the song, thank goodness. He loves his cousin so much, as long as his daddy isn’t holding her!!

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.

Summer Update

Tucker's birthday party went pretty well.  He was super excited to go to Jump N Jive, and he was even more excited when he saw his friends there.

By about half an hour into the party, the Jive room was packed full of people.  I meant to bring extra chairs, but we forgot.  There are several benches along the wall, but he had a ton of adults, and not enough seating.  Tucker jumped right into the inflatable Gladiator-type jumper, where one person is supposed to stand in the middle while other people knock you off of the pedestal with big foam mallets.  Tucker loves craziness, so he had a blast with Gina, Dylan, and Tyler jumping all around.  The kids all took turns going down the big inflatable slide, even Kinley!  Chris has now introduced her to the pool and the inflatable slide, I think he is going to either be her very fun uncle, or the scary uncle, depending on her personality :)

For the price of the party, we got private use of the room for 1 hour and a half, then 30 minutes in the party room for cake and pizza.  So after one hour, the party coaches blew up the inflatable party chair and tried to get Tucker to open his gifts.  Tucker's party was firetruck themed, but I had told everyone not to get him any firetrucks.....he already has about 12!  His friend Wes was mad at his mom Lauren when she got Tucker an aquadoodle instead of a firetruck, he said firetrucks are Tucker's favorite.  Well, Tucker's friend Daniel really wanted to get Tucker a firetruck, so his mom let him ;) That was one of the first gifts Tucker opened, and that was it!  He was ready to jump some more.  I was fine with that, as we had 30 minutes left that we paid for to jump.  So we let all the kids go back to jumping, and packed the gifts into the car.

When it was time to go to the party room, Tucker was pretty upset and it took us a while to convince him to sit with Chris in the big chair and lick the pizza.  We had pizza and two sandwich trays, and after all of the jumping, all of the kids and adults were pretty hungry. 

The party room was packed with all of our friends and family, and everyone was talking and eating. When it was time to sing Happy Birthday, the party coach turned the lights off. Tucker was in shock, I think, but when it was time to blow out his big "5" candle, he knew exactly what to do and blew it right out.  I was so proud of him, as we worked all year on blowing whistles as part of OT.

My parents got Tucker a new tricycle (Chris rolled over the old one with his truck!), and it has a bar on the back that we can push and steer.  Tucker rode out of the party on his bike, it was so cute. 

Once we got home, Tucker was all about the presents!  He got a lot of stuff, and he was so excited.  He got a cowboy hat and Elmo Country song movie from Molli & Addi, and a Mickey and Yogi Bear movie and a bag of Cheetos from Sarah & Brad.  He got a set of luggage from Justin & Jackie, which must sound crazy for a 5 year old, but he really needs it!  We have several overnight trips planned for the summer, and he needs his own suitcases to put things in.  He got a big water play table from the Christian family, which he will love once we put it together.  Last night he was trying to pour water out of his cup into his bowl....not allowed inside....but perfectly acceptable at the water table.  He of course still loves the firetruck, and Daniel & Julia also got him a bear shaped pillow with a sleeping bag attached. My parents actually got him another one, so he will have an extra.  My mom also recorded herself reading a storybook to Tucker.  It is a Hallmark book, I think, and it is of course about two bears.  When Tucker opened it, I told him it was a Nana Bear and a Tucker Bear.  So now he "reads" it by himself by turning the pages and pointing out Nana Bear and Tucker Bear on every page, it is so cute!  My grandparents gave me money to pick out a gift for Tucker, and I chose a pair of training skates. Everyone told me that was crazy, that he was going to end up in the Emergency Room....well, he loves them! He called them trucks at first, now he asks for his skates.  And yes, he falls a lot, but he falls a lot walking, too.  We have found that he pays more attention to his balance when he is on the skates, so maybe they will help him with that. 

I had to work on Saturday :( As I will have to several times this summer and fall, as this is the busy time for my job.  On Sunday, we all went to eat Hibachi for Mrs. Mia's and Mr. Ricky's birthdays, which are right behind Tucker's.  Since Tucker has been born, the other May and June birthdays have kind of fell on the back burner, so it was nice to celebrate.   Anyways, it was a very nice lunch, Tucker behaved very well and licked all of his Fritos.  I gave him the menu and asked him to look at the pictures to choose something, he looked at it and said "hamburger."  Haha, not quite.  He licked the Edamame, but was not impressed.
Tucker started a two-week session of swimming lessons this week. It is at the therapy pool, with a one-on-one special needs swimming instructor.  He is doing very well, they mainly work on putting his whole face underwater.  Chris is taking him today, so we'll see how that goes.  Chris has been encouraging Tucker to put his face underwater in the bathtub, and he was SOOO proud when Tucker did it.  Tucker also got a baseball tee and bat from my co-worker and her family at the party, so Chris is having fun trying to get Tucker to concentrate enough to hit the ball, not the tee!

So far the summer is way too hot.  We have been in record highs this week, at 100 degrees before considering the heat index.  So Tucker has been skating and playing baseball inside the house lately. 

As far as therapy goes, Tucker had about a week off in between school and therapy, and he has been pretty bored. He starts three half-days preschool next week, and he will also starte OT feeding therapy twice a week.  The ABA therapists we thought we had hired for the summer have fallen through, so we are now scraping by with the two or so hours of ABA at night that Chris and I try to implement after working all day :/ It is going much better that we thought, which gives us hope that once we find some therapists Tucker will make huge progress.  The BCBA consultant who designs and runs Tucker's program will come over next Friday (while I will be getting ready for Jessica's wedding), and hopefully give us an update soon on finding therapists. The goal is to have 15-20 hours of ABA per week; right now we are at about zero!

Please pray that we get Tucker's ABA program up and running soon. We are working on waiting. Tucker went from waiting 3 seconds to now being able to wait for 30 seconds....we need to be up to 20 minutes before we can start potty training, so wish us luck.

Some Ugly Days

Tucker is, as usual, doing some very cute things lately.  Just when I am at the end of my rope, he does something to crack me up and remind me why I stick around;)  I figured I'd start with some of those stories before getting into the ugliness around here lately.

Tucker loves, loves, loves Black Bear. It is a little happy meal toy (donated, you know he doesn't eat Happy Meals, haha) with a hook on it.  So he can hook BB to his finger and go about his day, knowing BB is right with him.  For my facebook friends who see the pics, you know that BB has made the rounds lately.....Lake Charles, Global Wildlife, grandparents' houses, Easter egg hunts, etc.  And don't anyone DARE touch BB, or you may lose a hand, haha.  So, I was super shocked when on Saturday Tucker picked up a new teddy bear at the store and said "want da bear."  We had told him he could have a prize, we assumed he'd pick chips.  Well he clung to that bear and wouldn't let it go.  So we bought it. Once in the car, he literally threw BB aside and held "Bear Bear" for the rest of the ride. We went to a few more stores, getting ready for our beach trip and Jackie & Justin's beach wedding this weekend, and Bear Bear stayed with us.  He also came to Jackie's nursing school graduation party.

So it has just been hysterical watching him with Bear Bear, then he realized Bear Bear is too big to fit into anything.  Stuffing BB into firetrucks, mailboxes, egg cartons, etc. is a great pasttime of Tucker's, so when he realized new Bear couldn't fit into anything, he majorly freaked out!  Chris had brought him to his parents, and Mrs. Mia called asking where BB was.  I could hear him in the background "black bear, black bear" Mrs. Mia said he realized new Bear didn't fit into the mailbox, and it was over!  So Sarah and Brad happened to be over, so they drove BB right over to Mrs. Mia's, thank goodness.

Tucker has been watching Barney videos lately, and that reminded me of that song "Me and My Teddy."  It is a Barney classic, just in case you never heard of it, and my sister Sarah actually sang it on stage at our school talent show when she was 5 years old, and won first place!  So anyways, I knew that I had the song somewhere in my memory, and once I looked up the lyrics, I started singing it to Tucker.  He LOVES that song now.  Gina and Chris asked me to please stop singing, so I bought it on my IPhone, best 99cents I ever spent :)  His face just lights up when it comes on, it's so cute.

On Tuesday morning, I was in the shower, getting ready for the day.  Mom has been teaching Tucker how to dress himself, and he is really doing well with it.  Well anyways, I'm in the shower, and I hear the bathroom door slam open.  I thought Tucker was asleep, so I poke my head out of the shower, and I see Tucker. He was standing there with his pajama shirt, his diaper, and his knee-high socks with school shoes on!  He said "go to school."  I told him to close the door and get out!  But I was cracking up laughing, as I had no idea he could put on his own socks or shoes.

So with the funny stuff said, it has been awful here since Saturday. On Saturday, we started Tucker on 5 mg of Focalin for ADHD.  There are possible side effects of anxiety, insomnia, and loss of appetite.  Tucker is on 40mg of Celexa for anxiety. We recently moved from 30mg up to 40mg and have seen a big difference. Last week Tucker got "good" and "excellent" behavior at school all week. So we knew we would have an adjustment period with the meds, but we knew we had to start some time.  We wanted to start before his ABA therapy started so that we wouldn't be experimenting with meds and wasting valuable time.

Giving Tucker the Focalin made it seem like he had NO Celexa in him at all.  He pulled his air all day, grinded his teeth all day (which is a horrible sound, and up to that point I hadn't realized that he barely does it anymore), threw fits at the slightest provocation, and would not take NO for an answer at all. He hit people, dogs, and anything that was in his way. 

I of course knew that it was because of the medicine, but my goodness, we still had to make him follow the rules.  And that was so, so tough.  He really doesn't like being at home, he much prefers being in the car. We rode around a lot on Saturday, and he would say "Jason Adeen" for Jason Aldean, and we'd play the CD over and over.  One of the songs was scratched, and he was Mad!  Then he didn't take a nap at all, and on Saturday night, we picked him up from Chris's parents' house at around 11pm, and he was still wide awake.  He threw himself on the floor in a fit when he realized we drove the car, not Chris's truck. Then he was okay on the car ride home, but when we pulled into the driveway I said "we're going inside, it's time for bed. We are not riding the truck" that set off a one hour tantrum. We all fell asleep after midnight.

Sunday was a little better, as he slept the whole morning!  I went to church without him. He actually asked to go to church, I think he really knows the days of the week, and wanted to go as it is part of his routine. But I knew that sitting still for an hour would be too much on him.

Well sitting at home for an hour was too much on him, too, so Chris took him to my parents' house where my Dad was BBQing.  It was a very nice day, and the food was great, but Tucker definitely wasn't himself.  Chris and I agreed that he was better than Saturday, so maybe the meds were not so bad.  I played "Me and My Teddy" on the phone a lot, and then we went home and we all took a nap.  Chris and Tucker played outside for a long time that evening, and we thought things were much better.

On Monday, it was my birthday, and Tucker had a class presentation at 1030. I got up, got us both ready, gave him his meds, and put him on the bus. I did a little work from home, then went to school for 1030. I knew something was wrong when I saw one of the para-professionals walking the halls with Tucker. I know that his teacher Mrs. Amy wouldn't just put him in the hall for no reason, she is very good about making him understand things and changing his behavior.  When I walked up to him, he looked the opposite way, like he didn't even notice me.  When it was time for the kids to sing a few songs, he fought the paras, and did not want to go with the other kids. He screamed a lot, kicked a lot, and said "lights off" a lot. There was a projector set up, so Tucker must have been told earlier that they would at some point turn the lights off. While the other kids sang and shared what they learned, Tucker had to go back in the hallway because he literally could not take being in the class anymore. 

I went out with him, because I really didn't want to hear the other peoples' kids' sing (no offense!!), I wanted to try to soothe Tucker.  I went out in the hall and couldn't even get him to look at me, let alone sit with me to be comforted. I lost it right there and burst into tears, and once they started they would not stop. I thought "what on earth have I done to my child??" He kept saying "walk back, walk back" so I held his hand and walked around with him. About a minute later Mrs. Amy came to get us, she said the presentation was starting and she'd like us to come back in. I was still wiping away tears, feeling frustrated and embarassed that Tucker was so loud and that I had no idea how to make him feel better.

We went in and watched the video with pictures from the school year, but I was just so out of it.  I don't know, it was like something snapped inside of me.  Like I just couldn't sit there, like I wanted to grab Tucker and run home, and just let him be all alone if that was what made him feel okay. But I knew that he had to stay at school and learn that even on the hardest days, you have to listen to the teacher and not hit your friends.

So I left him after the presentation and continued to cry, feeling lost and helpless.  Tucker's teacher called me, emailed me, and texted me, telling me that Chris and I had made the right decision staring his meds. She said that we had to start some time, and Tucker was lucky to have us.  Well on Tuesday morning I only gave him half of a pill, and called the neurologist. She called me that evening and said to stop the med altogether. I hope that the meds get out of his system asap, as I want him to get back to his regular self.  He truly does need help for the ADHD, but Focalin just wasn't the right med for him.

On Tuesday evening, a social worker and Personal Care worker came out from a local agency.  As I work full-time, we are hiring a Personal Care worker for two full days per week to help with Tucker.  We have left Tucker with strangers his whole life, we never really had a choice before.  But I did not realize at all how comfortable I am with his school routine and having my mom with Tucker in the mornings and evenings. I trust them all so much, and I have no problem at all going to work, even four hours away on work trips, because I know how well he is being taken care of. (My mom will still have him some days, and so will Mrs. Mia, but we really do need the part-time help.)

So seeing a PCA worker and social worker, and having to tell them the ins and outs of Tucker, not just his feedings and therapies, but the way he likes to be rocked, and how you can't let him see the eggs in the fridge, because then he is sad and wants them.....well that was too much for me, too! I once again felt lost and helpless, like if I had thought harder or could figure out a better option, we wouldn't have to do this, we wouldn't have to hire anyone.  We have another Personal Care worker coming to meet us tomorrow evening, and I am also going to call a few college students who said they'd like to work with him this summer. 

I have a big blue folder that I created when I went back to work. It has everything about Tucker's meds, doctors, how to feed him, etc. I have so much more to add to it for the summer so that the new workers know everything they need.

Tucker can not talk.  He can't communicate his needs and wants, so any caregiver will have a very hard time without the folder.  The PCAs will need as much as instruction as possible, because they can't ask Tucker for any information.  He also can't supply me with any information on how his day was, or if the PCA spent time with him or was mean to him, so I will have to trust these people implicitly.  I know I am being very overdramatic about this, as I used to be a PCA myself in college, and I was good at it.  But these are just all things that I did not worry about before, and it seems like it all hit me at once.

Also, Tucker rubbed the PCA's legs and wouldn't let go, and then hit the social worker in the face....so then I was worried that no PCA would want to keep Tucker for 10 hours a day, I mean I can barely handle it and I'm his mom!

So these are the things that we have been dealing with this week. Right now Tucker is asleep on the couch, so I am hoping that he still sleeps tonight.  Tucker was definitely still off this evening, hitting Chris any time he wasn't looking at him.  Of course Mom said he was excellent for her this afternoon, imagine that! :)

Please pray that we find the right meds for Tucker so that he can reach his full potential, be less frustrated, and be able to communicate with us as much as he wants to.  Also, please pray for our buddy Kyle who is in the hospital right now recovering from yet another major surgery. His mommy is watching him go through pain I can only imagine, and I hope she feels the love coming to her and her son from all over the country.

ABA Meeting

Last week was busy for us, and we got a lot of new information from two meetings.  Every year Tucker has an Individual Education Plan (IEP) meeting with his teacher, principal, and all therapists.  Chris and I also met the ABA therapist Wednesday night, and talked to her for over 2 hours about Tucker, our frustrations, and our goals for the summer.  He slept through most of it, but Amy got a little bit of time to show us the way we need to start interacting with him.

So first about the ABA meeting:  we have TONS of work ahead of us!  And when I say "us", I don't just mean Tucker, Chris, and myself, I mean everyone of our family members.  The therapist explained that Tucker views all of us as a slot machine.....he pulls on our levers a bunch of times, and while most of the time he gets a "no" from us, all it takes is one more pull to get a "yes" to whatever it is he wants.  For example, he asks me to play in the trucks outside 95 times, and 95 times I say "no" (which is an actual problem we have), but then on the 96th time I might say "yes." Well I just taught Tucker that if he bothers us enough, a no becomes a yes.  Another scenario is if he asks nicely and we say "no", then he throws a fit, and someone else can't stand it and gives in.  Well, then, he just learned that asking nicely gets him nowhere, but throwing a fit in front of that person gets him whatever he wants.  This is just like any other kid; however, Tucker has absolutely NO skills to deal with hearing "no" or "wait" or other negative things that everyone has to deal with in life.

So viewing Tucker's behavior from this analogy of the slot machine helped both Chris and me make a lot more sense out of things.  And with the amount of money, time, energy, and effort we are putting into ABA this summer, there will be hell to pay for whoever messes with our new behavior plan! Just saying, you have all been warned :-) And that includes Chris and me, by the way. 

Amy (which is going to get confusing as Tucker's teacher is also named Amy) listened to all of our concerns and issues (rubbing legs, running for escalators, playing in trucks, turning on all lamps in the house, not being able to transition, not being able to take turns or share), and said that they all come down to two problems:  Tucker does not have the skills to accept the word "wait" and Tucker does not have the skills to accept the word "no".  Which apparently are two different sets of skills.  I told Amy my goal of having Tucker be able to wait 15 minutes in the therapy waiting room, while other kids are around and ladies with shorts on are nearby.   Amy said we are very very far from that goal, as from what she observed, Tucker can barely wait a few seconds for something he really wants.  So that will be a hard skill for him to learn, and we have to get waiting under control before we can move on to hearing "no."  It is all a little overwhelming, but Amy promises us that Tucker shows great potential for this kind of therapy.

Our first thing to work on is "manding" or requesting. A mand is when Tucker would spontaneously come up to me or Chris, and request something.  Not when I say "do you want ____" or "point to what you want."  The goal is for Tucker to spontaneously mand 100 times per hour.  We estimate that right now he mands about 15 times per hour, we can not count repetitive manding, like if he asks for chips 10 times in a row.  I bought pitch counters from the baseball section of Academy, and Chris and I will keep the counters in our pockets so that we aren't carrying around a clipboard with us at all times.  So we will count the mands for one hour a day, for seven days, then we will meet back with Amy to talk about Tucker's baseline data.

We (or I, really) are also completing ABC behavior charts, meaning we write down the problem behavior:  Throwing tantrums, hitting when told "no", etc.  We write down the Antecedent (what happened to trigger the bad behavior), the Behavior (what actually happened) and the Consequence (did we give in to the bad behavior, did he get ignored?), and finally the result....so far one of the results was a 2 hour tantrum :-/ But, we did NOT give in, so as exhausting as it was, hopefully we made some progress.

So anyways, there is a lot to work on, and once the therapists gain instructional control of Tucker (hopefully in the first few weeks) we will start working on potty training. I can not stress to you all how TIRED I am of diapers!  And Tucker is finally starting to show me that he is tired of them, too, yay! :) He pulls on them a lot, and he much prefers running around free of anything, haha. So we keep telling him that we potty like big kids, and we let him watch us (Chris has a real privacy issue with this, haha), and tell him how all the big kids and all of his friends and cousins use the potty.  We need his manding rate to be super-high for pottying, as right now he would never tell us if he has to go, and of course a kid has to be able to tell when he has to use the potty, be able to communicate that feeling, and be able to get his pants off and make it to the potty on time in order for it to all work.  So we are a very long way away, but hopefully we will be working on it soon.

The way that ABA works is that there is a Master's level, certified BCBA consultant (Amy in our case) that runs the program.  She comes in a lot at first, then as the program takes off, she comes in on a weekly or less basis.  Trained therapists come in for 2-3 hours at a time, 5 days a week, for a total of about 15 hours per week, to do the one-on-one sessions that Amy has planned for Tucker. At first, it will be a lot of playing and getting Tucker used to the therapists. ABA is really a lot of fun for the kid, as the child is learning skills that help him or her to understand and interact with the world better.  Tucker craves structure and order, which is why he does well with a set schedule. As we progress, we will be able to be more flexible with his schedule, and mix things up, which right now has about a 70% chance of a tantrum.  Tucker also tries so hard to play with other kids, but he just doesn't have the skills for so much in his daily life.  He still hits kids when he's excited to see them, which of course doesn't make him many friends. 

So he will hopefully be excited and wait by the door for his therapists each day, the way he does right now for Mrs. Joy, his speech therapist.   Once the therapists get the program going, they will take him outside and do more real-life things to work on Tucker's skills in different environments.

Amy was very impressed by Tucker's current therapists and teacher at school, and we all think that this is the perfect time to be starting ABA with Tucker. Please pray that we all do well with the change, as it is just so easy to give in and spoil Tucker, and this change will be hard for us.  Chris and I are moving Tucker towards more and more independence, as much as possible, so this is the necessary next step for him.  Hopefully by the end of the summer we will all look back and see a huge change, and a less frustrated Tucker.

Another Mystery Solved

Tucker has been a mess lately. His behavior has been terrible, he has been grunting and whining instead of talking. Gentle reminders of "use your words" have been throwing him into tantrums and crying real tears. The only solution Chris and I have had to this behavior is to put him to bed early. His teacher's best solution has been correct him, try to distract him, and to wait until the end of the day and send him home. He has been obviously "off", but he had no fever, his ears were fine (he usually gets ear infections), and so I was very scared that this was just some bad behavior phase. Chris and I have been strict with Tucker, putting him in time out in his room, taking away priveleges.....raising our voices very loud to be heard over his screams. So last week Tucker had a hard time at school, but he was very well-behaved at home. His teacher and I talked, and we figured that something was off with Tucker, but he was comfortable enough at home, so he must just be tired or not feel good at school. Well on Sunday Tucker threw a two-hour fit, that ended when he finally gave up and fell asleep. After a one hour nap, our sweet boy came back. Then on Monday his school behavior was good, and he was good at home. On Tuesday, it went back to poor, and he was awful at home. On Wednesday, the same thing happened. My mom has Tucker after school everyday, and she said he was very well-behaved for her (of course! he is very good for his grandparents, haha). But on Wednesday evening it was another long, bad evening. Tucker cried and cried, and when we tried to comfort him he screamed.....when we ignored him he screamed louder. Tucker's teacher called me yesterday around 3pm, she said that Tucker's throat looked fine, but she had a feeling that he had strep throat. She had it on Monday, and her throat didn't hurt, so she came to school. Then she felt bad, and left to find out she had strep. No one else in the class has it, but it was possible that could explain all of Tucker's issues, as he has made so much progress and has been so good at school until lately. So once Tucker got off the bus, mom gave him pain meds, and he was so good and happy. Then Chris got home and took Tucker to after hours. I met them there, but by the time I got there, they were already out with a prescription for antibiotics, as Tucker had strep throat. Well I felt like the worst mom ever, I have to say. Looking back, Tucker has been poking at his neck, rubbing his neck, and has been hesitant to talk for days now. Instead of thinking logically "maybe his throat hurts, let's get this checked out" my thoughts automatically go to "oh no, his trachea is collapsing" or "he is regressing, maybe this is his autism and mito getting worse and he will never talk again." Seriously.....I need someone around to suggest "Mrs. Townsend, calm down, I think it's strep throat." Usually when Tucker is off like this for longer than a few days, we take him to the pediatrician. I think this time I felt like he would tell me if he was sick. Also, no one in our families is sick, so it didn't occur to me. His pediatrician told me years ago "Tucker doesn't tell you he's sick like other kids tell you, but he makes it obvious in his own way." Well, he certainly did make it obvious. So today Tucker stayed home from school. Mom spent the morning with him, and he was very good and played quietly. He also slept a little. Chris came home from working around lunchtime, and Tucker was tired of being inside. They played outside for a while, but I guess it was too much for him. He was very tired, but Tucker has this policy of NEVER napping when Chris is home. It's like Chris is just too amazing, he can't miss a minute with him. So Chris and Tucker played nap tug-of-war, aka Tucker screaming for hours while Chris tries to rock him. He finally got him to sleep at 3pm, and is likely enjoying a few well-earned beers right now..... We had a busy weekend planned, but I think we will take it easy tonight and tomorrow. We were going to watch our niece Kinley tonight. I borrowed a Bumbo chair and walker for her to play in when she comes over to our house. But of course we don't want her to get sick, so we are moving our playdate back, hopefully just by a few days. We have a birthday party tomorrow, but we may not make it. We have an early morning trek to the Global Wildlife center planned for Sunday. Tucker gets up at the crack of dawn usually, so if he feels better by then, he will love it. It's a local safari place, where we all ride in covered wagons, and animals come up to the wagon and you feed them buckets of corn. Molli has been working very hard at being good at school, so her parents planned an outing for all of us. Tucker loves Molli so much, he cried the other day when we didn't take her home with us! So he will really enjoy the trip, hopefully he feels good by then.

Behavior Issues

Tucker started his Neurontin on Saturday. I haven't really seen any changes in him at home, but he did actually swallow some sorbet today at eating therapy....after repeatedly hitting the substitute OT (Mrs. Terri is on vacation) and throwing a few fits. Today was one of those days that I wonder why we even make the 45 minute ride out to therapy. Tucker usually throws a fit in the waiting room if we have to wait longer than 30 seconds. I actually threatened to take him home today without having therapy...that stopped the fit for about 1 minute while he thought about that. He was bossy to the OT, and while she was very patient, it was tough to watch. He was very out of control today; I know he really can't help most of it, but I still wanted to punish him by taking him home! Tucker is in a new "testing" phase, where he is trying to push us as far as he can until he gets in trouble. He's been doing things like cracking an egg into the rug, smashing chips all over the floor, splashing in the toilet, and pouring juice in his toybox. The other day I told him he could pick one bag of chips in the store as a prize for being SO good at the cranialfacial appointment. I assumed he would pick one of the 99 cent bags at his eye level....of course not;) He chose one of the $4 big bags, and all I had was $1. (I didn't want to put the $4 bag on my debit card, plus he doesn't need a big bag every single time.) I told him he had to pick a small one, and that was a nice enough prize. He threw a fit in the aisle, then I finally calmed him down enough to get him to the counter and pay for the small bag. He climbed into the car nicely, but then threw the bag at me as I drove out of the parking lot! We are not quite sure what to make of this new behavior; we all think he is actually developing cognitively, and therefore pushing his limits and testing his environment. It is very frustrating, though! We are working on different discipline tactics, so far time out, taking toys away, and distracting him aren't working. I think that another part of the problem is that Tucker is SO good about 85% of the time. He really is a doll usually, so cute and sweet....but then the 15% of the time that he's more kid-like (haha), it's like he goes from sweet Tucker to crazy Tucker out of nowhere. I always wonder if it's just his way of showing us that he is way too tired, or just that he wants attention. Tucker has a very hard time communicating with us; even though he talks much more than ever, it is very hard for him to get his immediate needs across, especially when he's excited. He is much more likely to hit someone instead of saying "Hi, I want you to play with me" or "I'd like a chip, please." He just hits or pulls on them, even though he knows the words. This starts the whole process of "no hitting," and then him saying "I do-ee" meaning I'm sorry! Then we have to get to the root of the problem, meaning what he was trying to say in the first place. I know that every parent of a toddler faces these issues, but with Tucker, every issue is so much more complicated. First of all, pretty much every new skill he masters makes us happy, whether it's climbing stairs or cracking eggs....he really does amaze us everyday. So once we make a big deal out of something, he wants to do it all the time. He just doesn't understand the appropriate way to do things. For example, he really likes to crack eggs for baking and when I make his blended food each week. So I encourage this so that Tucker can be involved and learn something. But he doesn't understand that going into my grandma's fridge and cracking her eggs is NOT allowed! Another example is that Chris and Tucker love to wrestle. Tucker pretty much attacks Chris every time he is laying down to watch TV on the rug. Well that's cute and no one gets hurt, but Tucker doesn't understand that only his Daddy really wants to play like that. At a birthday party last week, a bunch of kids were sitting around watching one girl play a new video game. Well one of the girls was laying on the carpet, and Tucker repeatedly tried to pounce on her to wrestle. They had to take him out of the room because no matter how they told him that it was not okay, he just couldn't stop himself. So we have to be very careful what we encourage with him...once we say it's okay once, he won't stop! One of the first words Tucker ever said was "truck." He actually carried around a Cabela's magazine for a few weeks with an ad for a Chevy truck. He said "duck" for a few days until we figured out that he was saying truck and actually meant it! We were so, so proud of him, and so after that, anytime he said truck, we would take him outside to play in trucks. Again, Tucker generalized this, and he thought it was okay to play in any truck at any time. This includes strangers or people who would really prefer a 4 year old stay out of their truck! Tucker has run into parking lots before, focused on a truck, totally unaware of the dangers that are in a parking lot. So this led to our "no truck" rule. Tucker can only sit in a truck when he is going somewhere. This rule has been particularly hard to enforce, and it often seems like a mean rule when Tucker is crying real tears to get into a truck....but it is so nice lately that we can be out in public and spend our time at the actual event, not in the parking lot! I think if Tucker "just" had autism (like that's not enough), the behavior therapy might be easier to enforce. But because Tucker has so many medical issues, and he has been through so much, (and will continue to go through more his whole life), Chris and I are way too lenient on him. Even when we decide on certain rules, it's very hard to convince others to back us up, as everyone feels that Tucker has been through enough. I hear quite often, "he's a miracle" and "he's such a blessing," and "but he's so cute!" Well, yes he is! But he still needs limits and rules. Because at the end of the day, Chris and I have to live with him, and we'd rather raise a child, not a little monster. Luckily we have a whole team of professionals helping us to navigate Tucker's behavior issues. Normally, they are as stumped as we are, but at least we are not alone! Please pray for us as Tucker stays home with me this week for the Thanksgiving Holidays...so far, he has cried every day for his grandparents, and they all come running;) I am trying to set some limits and keep them this week, hopefully it works.

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.