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!!

New Feeding Therapist

It is 1130pm, but I wanted to post about a new development in Tucker's life before going to bed, just in case I forget the details. I am not sure when I'll be able to blog again, as our busy lives just will not slow down!

I could write a book all about the epic saga of Tucker's feeding history. I like to place most of it out of my mind, so that I am not thinking about the times we've all tried before and failed to get him to eat. There are a million reasons why Tucker won't eat, and up until a few weeks ago, I had really given up.....we have much bigger issues going on, such as getting him to talk and interact with kids, getting him to learn more, etc. So feeding was on the "back burner," but of course my definition of back burner is having him in OT twice a week all summer ;)

The ABA consultant that is working with Tucker on behavior and learning actually consults with kids all over the country. Her specialty is not feeding, but she works with someone from Philadelphia who is a feeding specialist. This therapist, Jennifer, was accepting new clients, so Amy referred us to her.  At this point, we had just started the evaluation for regular ABA therapy with Amy, we were trying to figure out Tucker's summer plans, etc. So I really didn't rush it. I sent her Tucker's medical history (which always is hard to read in black and white, especially to a new person), and she was not sure if she could help him.

She said that kids need to be at a certain point from a sensory and oral motor standpoint, and it didn't sound like Tucker was there.  She is a behavioral therapist, meaning she uses the principles of ABA to push through the fear and resistance related to the feeding issues. She uses reinforcers (things that Tucker really really wants, like Chris's power tools and his firetruck toys) to get kids motivated to eat. And yes, we have tried this a million times, with no success.  BUT we've tried it on a much smaller scale, and never with a trained behavioral feeding therapist.

After she emailed me saying that she wasn't sure Tucker was ready, I looked over the fees anyway. She said that sometimes insurance covers 60%, so that would go a long way in covering the costs.  I planned to start looking into that before contacting her again.  A few weeks ago, she emailed me to give me the updated "parent" fees, meaning a fee schedule with much lower fees for parents who would pay out of pocket. Coincidentally, Mrs. Terri, Tucker's feeding therapist, sent me an email on the same day about Tucker's eating progress and where she thought he was.  So I forwarded that email to Jennifer, and started an email chain between the two of them. They were very excited about working together.

Now in case you did not notice, I wrote that Jennifer is located in Philadelphia....not exactly a day trip from here to there.  The amazing thing is, she travels around the country, and will do an in-home program. There are several great feeding clinics around the country, we could put Tucker in one for 6-8 weeks in Baltimore, Omaha, Denver (maybe there are a few more), and he would be inpatient that whole time. Now where would I sleep, eat, or how on earth could we function without our family for that long? I don't know. Also, some kids get off of the feeding tube in that time and are totally fine without it. However, there are some kids who go home and regress back to not wanting to eat because they are back at home and don't associate the home environment with the oral eating. So I think that a home program is definitely the way for us to go, if we pursue this type of therapy at all.

In order for Jennifer to come to our home, we would need to cover her flight, rental car, mileage on the rental car, hotel room, and meals. So that adds a good bit to the total, of course, but we are looking into insurance covering it.  For this reason (the travel costs) Jennifer usually conducts the initital evaluation over the phone and also through Skype (webchat).

Two weeks ago she emailed me to tell me that she had a last visit scheduled in BR with another family. This little boy was off the feeding tube, and she was just flying in for two days to wrap up with him, and touch base with his school, the parents, etc., on his progress.  Since that family was covering all of her travel costs, she asked if we'd like her to do the evaluation in person? I couldn't believe our luck.....except I can, because honestly, these types of things happen to Tucker in his medical care all the time (thanks for the prayers everyone, you may not always know what they are for, but trust me they work).

So we scheduled a home visit for Monday evening, Mom, Chris, and I were there. Jennifer watched us feed Tucker, he self-fed mashed up cheetos and graham crackers, I spoon fed him mango sherbet, and he had water in a sippy cup. Less than 1% of the food made it into the back of his mouth, which is normal for him.  Still, Jennifer was very impressed.

After Tucker "ate" his dinner, he fell asleep. So Jennifer, Chris, Mom, and I talked for a while. She said that Tucker is much better off than she thought from reading his medical history. She thought she was going to have to push him to touch food and be around food, but he is way past that. She said he has so much oral motor skill, and wants the food so badly, that it must be very strong fear of foods that is stopping him from taking the food into his mouth and swallowing it. He won't even let the food get in, Jennifer calls it pecking.  Jennifer was also impressed by all of the feeding tools we have (we could open our own therapy store, haha), and the fact that we had separate places for eating orally and tube feeds, and also that we blend his food. 

I was impressed by Jennifer for many reasons. One important reason is that she plans to keep feeding him healthy foods. This may sound obvious, but most feeding programs go for just high calorie foods so that the child can eat less volume.  (Remember the all-cheesecake diet from when Tucker was two??)She said that we will work with high calorie veggies, fruits, avocado, peanut butter, etc. and that she wants him eating from all food groups. So that makes me happy, as Tucker pretty much has a perfect diet right now, and I don't want to trade that in for a kid who only wants McDonald's.

Jennifer also observed an OT session with Mrs. Terri today as part of the observation, I am not sure how that went, so I am waiting to hear from Jennifer with the final report.

I am not sure what our next step will be, or when we would start therapy. The way it works is that  Jennifer would come into our home for 3-5 days. She would work with Tucker directly for a few hours, then she would start parent training, which he already warned her will be tough! She would get Chris and me (along with one of his school aides) trained on how to feed him. She would also not feel comfortable leaving until Tucker is taking at least one to two ounces of food orally at each feeding.
I asked her how long that would take, as I don't think she wants to move into our house! And she said "maybe a few hours." Haha, Chris and I looked at her like she had lost her mind. She said the quickest she got a child to go from 100% tube dependent to 0% tube dependent was one DAY, the longest was one year.  We all know that Tucker takes his own time and never follows the rules, but I have to admit that she has given us new hope that Tucker could eat by mouth. Once she decides to work with a child, it is because the child is ready.....so I guess she doesn't have any failures... Tucker has done simply amazing with the ABA therapy, so it makes sense that applying those principles to feeding would work.

Pray for us, as we take several leaps of faith on this feeding journey.

Tucker also has an appointment with the geneticist in New Orleans on Thursday, and Chris, Tucker, and I are heading to Houston next week for an appointment with the sleep specialist and overnight sleep study.....and did I mention that we are doing intense potty training this weekend, ABA style???

Amy said it will be pure hell for a few days, then if Tucker is ready, it will be amazing and work....so please pray that he is ready!! I know that I will do anything I need to do in order to care for Tucker, but we are going on 5+ years of diapers here, I'd love for us to trade those in for the big kid "unda-way" as Tucker calls them.

Feeding Appointment

Mom and I took Tucker to the feeding/motility appointment yesterday at Children's Hospital in New Orleans. Tucker slept the whole way there (he almost never sleeps in the car), and was a little "off" at the appointment. It was the first time I'd ever been to Children's; it seems like a nice enough place. Tucker weighed 15.8 kilograms and was 39 inches tall, this put him in the 22nd percentile for weight and 2nd percentile for height. This cracks me up because he seems so tall and skinny to me, I have to buy him long enough pants and then get them altered to be skinny enough. But according to the growth chart, he is a little chunky. I'd hate to see if he lost any weight, though. So the good thing about this is that he is growing, both height and weight wise. The feeding team includes a GI doctor, psychologist, and an OT. Two students also sat in on the meeting. The whole appointment took about an hour. I went over Tucker's entire medical history....at the end, the psychologist said, "well, it's no wonder that he doesn't eat." They watched him eat a little. He doesn't mind touching or playing with food (many kids get sick from the sight or smell of food), so he rubbed the cheetos crumbs and spaghettios around the plate, and ate a little of each. He also took a few sips of water. The team thought that Tucker actually had more potential than I had explained. They agree with his OT (Tucker had gone to OT Monday afternoon and we discussed his feeding) that Tucker wants to eat but several things are stopping him. His sensory issues are stopping the development of his oral motor skills. They agree with his OT that his food isn't even getting to his esophagus, so esophageal motility is not likely the problem. The doctor actually thinks Tucker doesn't have any motility issues, which was surprising to hear. Many kids with mito have motility issues, and lately Tucker has had constipation and diarrhea so much; the doctor said that didn't sound like motility issues, just sickness. He also looked at Tucker's belly and said that he isn't distended. Hopefully Tucker wasn't just having a skinny tummy day, and this doctor is right about his having no issues. The team all kind of looked at each other, then the OT suggested that Tucker start a medicine to help with his sensory issues. Tucker has been in sensory therapy for 2 years, and I had never heard of medicine to help those issues. The other members of the team nodded their heads in agreement, and the doctor wrote a prescription for Gabapentin, (neurontin), which is a medicine for seizure and pain management. It helps to stabilize membranes, which also helps with sensory issues. It will help to desensitize Tucker's mouth and tongue so that the food is not so hard for him to eat. As I took this information in, I asked if this drug would help all of Tucker's sensory issues. The doctor said it would, and that this medicine would likely help Tucker to improve in many areas. He said that Tucker might have pain every day, and he just can't tell us about it. Giving him this medicine could give him his first experience at a pain-free day, which would make his life better all around. I did not like that idea! To think that my son has been in any kind of chronic pain without us knowing is very discomforting. Tucker pulls his hair and grinds his teeth all the time. He looks like a pretty stressed out kid. Sometimes when he is just "off" with his behavior I will give him Advil or Tylenol and he becomes much happier. This only happens occasionally, but we always wonder if there is more going on with Tucker than what we can see. And of course he doesn't tell us anything. So, if he does have any chronic pain, this medicine should help. The doctor gave us a medical study that he co-authored. It was about using a pain management approach to getting nonverbal tube-fed kids transitioned onto oral feeding. It is a very interesting study. They began with 9 nonverbal toddlers, who had various medical complications that led them to be fed 100% by g-tube. These kids also had obvious stomach pain and issues, such as retching, which Tucker doesn't do. So the kids all got two things-one, they were put on the gabapentin, and two, they switched to a g/j tube so that for 8 weeks they got their formula straight into their intestines to give their tummies a break. Tucker is not getting that part. So at whatever point the kids each started eating better by mouth, the doctors added the megace in (medicine to increase appetite-Tucker was on this for many months with no real progress). After 8 weeks, 8 of the 9 kids were eating 100% by mouth. Months later, this was still working. The last kid was eating 50% by tube and 50% by mouth. The kids were weaned off of the megace at some point, not sure when. The GI doc said that the approach we tried two summers ago (giving Tucker megace to increase his appetite, then basically starving him out) is the second step in this protocol, not the first-that's why it didn't work. Tucker has to have weeks of positive eating experiences to unlearn all of the negative associations he has with food. They expect that once he has a more positive view of food, working with OT and speech once a week (plus the school lunch and snacks each day) will help his oral motor skill level improve. We have a follow up appointment in two months, and by then they just expect him to be trying food three times a day; they want him to take 5-6 real bites at each feeding. Their goal is not volume, just a change in his skill level and comfort. That's fine with us, just seeing a change like that would be great. As we left the office, Mom tried to gauge my reaction. I said the appointment could have been the best news we got in a very long time....IF it works. I am very skeptical of any good news, or any new medicine that is supposed to fix Tucker's issues. I am happy to try anything to help him, but I guess I just don't want to get my hopes up. After actually reading the study last night, I feel much more excited about the new medicine and how it could help Tucker. I will be filling his prescription tomorrow, and starting the med 3 times a day on Saturday. There should be no side effects, but I still want to wait for a non-school day to start the new medicine so I can watch Tucker carefully all day. I would love for him to be able to enjoy food. Having him eat even 50% of his food by mouth just seems unreal to me, but we will see:) It is so funny because Tucker's doctor in Houston is actually the doctor who suggested we see this feeding team. Tucker's therapists in Baton Rouge didn't even know that Children's had re-opened their feeding clinc after Katrina. (Apparently, they re-opened 2 years ago, but I had never heard of them...and believe me, I have asked around!) So we had to go to Houston to get referred back to New Orleans, and hopefully we are finally headed in a good direction.

Feeding/Motility Clinic Tomorrow

Tucker has his first appointment at the Motility and Feeding Clinic tomorrow in New Orleans. Motility is the movement of food from the mouth, on down to the colon and out. Tucker has dysmotility, meaning that his digestive tract doesn't move food the way that it should. We don't really know the extent of this or how it affects him, so we will see if the doctors order tests tomorrow. One big issue we think he may have is esophageal dysmotility, meaning that his esophagus doesn't really push the food down. His OT thinks his problems starts before that maybe, she even mentioned it being some type of nerve problem that affects his tongue and other oral muscles. For those who don't know our history, Tucker has been in lots of feeding therapy pretty much since birth. I think I fed him a total of 2 bottles in his life?? Not really sure of the number...one experience was very positive, during the time he got off the ventilator when he was about 2 months old. Preemies have big problems learning how to eat at first, but Tucker was an amazing eater for about a week. The nurses and therapists were so pleased with him, until about a week later when his little lungs couldn't breathe for him, and he was too tired to bottle feed (bottle feeding takes a lot of energy, and preemies have very little extra energy). He ended up back on the ventilator for years, and for about 5 months he was not allowed to eat orally due to fear of aspiration. So the second time that the doctors let Tucker try the bottle, it was pretty much a disaster. He had no interest in it, and no strength in his mouth or chin to drink. So that was a bust, but we have tried over and over through the years to feed him. We usually have a few weeks of success, only to be moved back by any health issue or due to behavior issues. We have tried starving him out (seriously), giving him appetite stimulant, numerous reinforcements, and the social interaction (i.e. "peer pressure"). Tucker has had amazing therapists working with him for years, and lately we are taking a break from feeding as we are at some type of physical roadblock. His therapists really believe that Tucker wants to eat, but that there are two problems: 1. he has had so much failure in the past that he has just given up. 2. Something is physically preventing him from swallowing his food. None of us like to be forced to do things we aren't good at....in Tucker's case, eating is not a positive experience. Tucker has a g-button, and he gets formula and blended food through this. He is 100% tube-fed. Medically speaking, having a g-button is not a big deal. There isn't an increased risk of infection; Tucker can take baths and swim, and if he pulls it out or it falls out, we can put a new one in very easily. Giving him the feedings is really a piece of cake! Many moms have pointed out to me how "easy" we have it, since we just pour his food and medicines right in, regardless of how they taste or whether or not Tucker is even awake. Socially, though, not eating is a HUGE deal! I never realized just how much of our lives revolve around food. Planning meals, grocery shopping, going out to lunch or dinner with friends or colleagues, birthday parties, weddings, holidays (especially Turkey Day coming up next week), we pretty much plan our lives around when and what we are going to eat next. Tucker could care less what his next meal is; he just knows that he has to sit still while he gets it. He is really hilarious, he even hooks the extenstion tubing up to his button and helps me put his meds in. When you ask him where his belly button is, he points to his g-button. We make jokes about Tucker's feeding issues. Chris says that food is Tucker's cryptonite. Everyone in our family knows when they open a bag of snacks for Tucker, they have to give him a napkin to discard the well-licked snacks....because they aren't going down his throat. They also know to check any opened food, because there is a chance that Tucker has licked food and put it back in! One of Tucker's favorite activities is to lick all of the flavor off of something, then force feed it to someone else. It's disgusting, but also really funny. Missy once joked that Tucker and Samuel would be able to drink their friends under the table by pouring the beer directly into their feeding tubes! :) We joke about everything, but at every meal (especially meals with other people) we realize what an odd situation we are in. Tucker usually doesn't sit down at mealtimes because he would much rather play or watch tv. He behaves well at restaurants and in the cafeteria at school, but it takes a lot of redirection and reminders. When our families get together (which is at least twice a week) we all take turns entertaining Tucker since he does not enjoy sitting with us. Our families (especially the Galatas side!) love to eat, and when we get together, about 80% of the time is spent at the table. Chris and I have talked about Tucker's feeding, and we have changed our goals in this area. We would like Tucker to sit with the family at mealtimes, sit with kids to eat cake and ice cream at birthday parties, and participate in food-centered activities even if he doesn't really eat the food. He doesn't need to actually eat anything, just want to be a part of the experience. We just don't see a point in Tucker's life when he wouldn't have his g-button. That is just not realistic. This is a definite change in our thinking; as recently as July of this year we were looking forward to the day when Tucker would just eat with his mouth. It's partly because it's a battle we are all tired of fighting. It also has a lot to do with Tucker's mito diagnosis. Mito kids need adequate nutrition to get to their cells, and the g-button is a great way to guarantee that Tucker gets an adequate amount and type of foods. Tucker also has to take a good bit of medicine and supplements, and it is just easier to put them in his button than to make any kid take all of that by mouth. We made the choice a few months ago to put Tucker's oral feedings to the back of the priority list. Tomorrow we move it right back up to top where it has been for year. Hopefully we will get some new information to help us form our new plan for Tucker.

Nuts and Bolts Update

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

Hoppy Bithday

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

Blood Sugar Issues

Tucker's first day of school went well. Yesterday I picked him up early for an appointment with the Diabetes Educator; the teacher came up to me and told me how well Tucker was doing that day:) He was already used to the routine and he is getting used to the rules. That is great, he is such a big boy! Sometimes I think he changes personalities on the school bus, haha, he turns into Tucker Ray, Model Student, on the way there. Kind of like the transformation that occurs when he stays at his grandparents, he is always "good as gold" and "such a sweetheart" with them! Tucker had high blood sugar three weeks ago in Houston, then last week in BR he had a regular reading. So we were all hoping the one in Houston was a fluke. Yesterday the nurse gave us a meter (we picked a purple one-that's Tucker favorite color....meaning the only one he knows!) with some strips and the whole get-up and taught me how to use it. It is not a hard concept, and she gave us a new model with a very small needle so the stick doesn't even hurt Tucker. The problem is that the needle is so small and delicate that barely any blood comes out:/ We have to "pump" his finger for the blood, and Chris is much better than me at this. Maybe because I am too scared to squeeze his finger as hard as it needs to be squeezed?? Yesterday afternoon his blood sugar was 205, (way too high), then last night before his last feeding it was 83 (perfectly fine), but an hour after his last feeding it was 348 and then 298 (we took it twice because we thought we messed up with that high of a number!). This morning it was 88 before breakfast and then 247 right before he got on the bus (which was also an hour after his first feed). The original plan was to monitor his blood sugar 3 times a day for 4 weeks and then report back. Well the Diabetes nurse called me last night; she said because his sugar was 205 yesterday, the dr wanted us to just monitor it for one day and then they would take immediate action. Thank goodness, because that 348 last night really freaked me out. I called the pedi nurse at 8am, I listed off all of the numbers, and she is supposed to call me today. They will likely change his formula to a diabetic formula. I actually blend up his food once a week and feed it to him in his g-button at home (he gets fruits, veggies, soy milk, grains, fats, and meats), and he has really put on weight since we started this (in a good way!). He gets Pediasure twice a day at school, the blended food has to be refrigerated and it's thick, so we thought Pediasure would just be easier at school. But I guess now he will have to just do the diabetes formula?? We will see. Ugh, this is so overwhelming right now. I know in the grand scheme of things pricking your kid's finger is NOT a big deal, we've been through much worse! But today I had to prick him about 8 times, and use 8 meter strips (which are supposedly ridiculously expensive) to get a reading. Tucker is going to start hating that little purple meter! And of course with sugar readings that high, this is definitely an issue we should be monitoring and acting on. Unregulated sugars can cause horrible damage to the body's cells, and obviously Tucker needs his cells as healthy as possible. ----------------------------------------------------------------------------------------------- In other news, Tucker has been hilarious lately! He uses his words so appropriately, and really surprises us! He is starting to use 4-word and sometimes even 5-word sentences, which if you know him, means that he can boss all of us around even better than before! For example, he used to just scream "tent! tent!", well now he says "get in the tent." He loves opening and closing things, for the longest time "open" was the only sign he knew. Well now he says "open box peez" (please) or "put it in poos" (meaning put something in my purse). Sometime last week I had a particularly hard day and I laid down with him that night to cuddle before bed. I hugged him and he looked at me, pushed me and said "get out my bed." I was surprised and kind of proud of him, and of course I obeyed. The other day he called my brother "Unca Dylan" instead of just Dylan, it was so cute. I made a Naked Neck Video for Tucker's Naked Neck party a few weeks ago, it is about 7 minutes long, and it's pretty good if I do say so myself! So I ordered DVDs of it for us, my parents, and Chris's parents. Well this video has replaced Mickey and Barney as Must See TV in our house, at least once a day Tucker climbs on my lap and demands "baby moobie." I ask him who is the baby? He tells me "tucker" even though I don't think he really understands that's him. Tucker also still LOVES my blue purse. He sleeps with it most nights instead of a stuffed animal. On our last trip to Houston, we stayed in a hotel (according to Chris, a seedy hotel, I am NOT allowed to book our trips anymore) and Tucker had a hard time falling asleep. We were exhausted, so after about 30 minutes of fighting I said "you've got your pillow, you've got your purse, now GO TO SLEEP!" Chris asked me "are you serious? did you really just say that?" And the worst right now....well for me at least....Tucker just loves when Chris plays his PS3 video games:/ Chris walks in from work, and Tucker brings him the controller and says "game". Of course Chris has to take a shower and eat first, but Tucker does not like that arrangement! Chris keeps the games out of Tucker's reach, but Tucker points up to them and says "open game." As I often say about hunting, and now with the PS3, I am so outnumbered in this house!! I don't think Tucker's vote should actually "count" yet, he is just a little kid, but Chris insists that it does. The bad side to this (for Chris) is that Tucker has now realized that when he presses the eject button, the PS3 game comes out and Daddy has to stop playing. So he now controls when Chris starts playing, and when his gaming time is up! Oh, what are we creating here?? A spoiled little monster! No wonder why he behaves so much better at school:)

Feeding Time

I told Tucker it was almost time to eat. He looked up at me, then ran into the kitchen.

I found him in there like this....

I wasn't sure whether to cry, laugh, or tell him "good job!"

He got pretty frustrated when he couldn't figure out how to hook the extension to his g-button. Then the syringe came out of the extension, and he got even more upset!

His OT put "self feeding" as one of his therapy goals, I don't think this is what she had in mind....

Swallow Study

Tucker went for an outpatient Swallow Study yesterday. A swallow study can be performed for other reasons (I suppose) but Tucker has always gotten swallow studies to make sure that it is safe for him to swallow food and liquids without them aspirating into his lungs. As many of you know, Tucker's lung development was the Number One priority for most of his life, so aspirating was a Big Fear! He did not eat by mouth at all for months in the NICU, due to the fear that he was somehow aspirating food, which would get him sick and keep him from coming home. He had his first swallow study right before being discharged from the NICU at 8 1/2 months old, then he had another one at 15 months old. Both of these studies showed that he could swallow just fine, with no worry of aspiration. Of course, this does not mean that he actually DID swallow for us! We have been in a feeding battle with this child from day one, he has so many issues going on with the oral feeds. Since he got his trach out in November, his oral feeds have pretty much come to a halt. We heard from so many people that getting his trach out would make Tucker want to eat more, but in fact he has done the opposite. He can taste and smell the food better, and as much as he wants the food, he is just naturally very scared to let it in the back of his mouth and actually swallow it. Lately, his airway is irritated, so he is even more hesitant to swallow. He often gags and is very dramatic about not swallowing, even when Chris and I brush his teeth. So his Occupational and Speech therapists have really been wanting another swallow study, just to make sure he physically could swallow. When we went to the Mito Doc a few weeks ago, Tucker choked on some Cheetos crumbs, and Mom and I said "swallow Tucker, swallow," then he finally did. The doctor said that should NOT be happening, so we had to have a swallow study ASAP to make sure he was Okay. So I called the pediatrician, and they got us in at Our Lady of the Lake the next week. Gina and I took Tucker yesterday. He was holding his Fritos, which we told him he could have only AFTER he did his feeding work. He doesn't really eat them, he just licks each one of them until there is no salt left! Then he puts them in a neat little pile. People who know Tucker also know to NEVER take any food he offers you! He often licks all of the taste off, then tells you "open!" so that you will open your mouth and shove the nasty food in...pretty gross! So Tucker's OT Mrs. Terri met us at OLOL. He was so happy to see her. We went in and they explained what would happen. The procedure took place in an XRay room. They fed Tucker food with Barium in it, then they watch on the XRay to make sure the food goes down his esophagus and does not come back in his lungs. Tucker was very obedient, when Mrs. Terri told him to swallow, he really tried. The XRay tech kept saying "he is not swallowing, there is no food going down." If you looked closely, you could see that all the Barium was around his mouth, because he literally does not swallow. For months I had been feeding him applesauce and yogurt...he seems to eat, but 10-15 minutes into a feeding, the bowl is still full! It is very frustrating, and Tucker really does try hard. So anyways, the XRay tech was getting frustrated, so finally Mrs. Terri got Tucker to swallow some of the food. The Speech therapist in charge of the study said that Tucker is physically fine with swallowing, so we can resume regular feeding therapy. She was really concerned with Tucker's lack of oral motor coordination, especially because she knows we have had fantastic therapists working with him since his discharge over 3 years ago. She said that Tucker is just one of those kids you only meet once or twice during your career, who just makes you feel like you are racking your brain, using every technique you can throw at them, and nothing works.....then one day they will just click and start eating. I think that made the OT feel a very small bit better, but not much! So after Tucker's tonsil and adenoid removal this Thursday, along with his recovery, we will go back to serious feeding therapy. The speech therapist said that Tucker's entire world changed when his trach came out, and it makes perfect sense that his feeding would have stopped. He is also very aware of his irritated airway, she said he is a very smart kid who knows that something is going on that is affecting his breathing, and therefore his feeding. Tucker was very obedient during the whole procedure, and did what we all asked of him. Gina watched from behind a glass window so she wouldn't be exposed to the XRays (Mrs. Terri and I wore protective gowns), and she thought it was very odd to be looking at Tucker's skeleton:) She said he has a huge head, which is hilarious since he has been diagnosed with closed sutures and microcephaly (small head, even below the 3rd percentile for heads of other 3 year olds). As soon as we got in the car, I opened his Fritos as his prize, he was so happy!