"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!!

EEG in Houston

Tucker had an EEG (test to see if he has seizures) scheduled for Dec 27-28. The test takes 23 hours, and he had to be hooked up to many leads for the test.  His mito dr ordered it, so we went to Houston for the test.

On the day after Christmas, Mom, Gina, her best friend, Jene'e, and I left for LC.  Our plan was to spend the evening and night with the Poche's, then leave for Houston early on the 27th. Well, we didn't get on the road until about 630pm ;) so from about 2pm until 930 when we got to their house, all we heard was "Go to Aunt Kim's! Go to Unca David's! Go see Mogan and Gace!!!" over and over.... :/  Then by the time we got there Tucker definitely needed to go to sleep, so I felt awful.  We stopped for dinner on the way, and Tucker got his own kid-sized burger and fries. He still doesn't eat any of it, but his feelings get hurt if he doesn't have his own food. He took my ranch dressing and dipped his fries in it, then licked the ranch sauce off....yes, he is a Townsend! haha

We stopped once more to use the potty, even though Tucker just wanted to drive straight to LC. I told him I was going to be mad if he pee peed in his carseat!

Tucker had about 15 minutes with his cousins, then it was time for him to go to bed. Mom, Gina, and Jene'e stayed up with the girls watching Soul Surfer while we went to sleep....well, after about 30 minutes of Tucker trying to sneak out of the bed to go see Unca David! lol

The next morning we woke up, rushed out by 730, even though we needed to leave for 7. Our trip to Houston was quick and painless, as Tucker, Gina, and Jene'e slept most of the way. When the city skyline came into view, the girls were so excited! It is obvious that we live out in the country, they loved every building and park.  They had to take pictures of themselves next to every neat looking window, door, etc. Having them along made us more excited to be there, as they found everything to be so interesting. The hospital really is in a nice part of town, right next to a big park, so I totally understand why they like it.

We checked in at admissions, then within 10 minutes we were up at the EMU (Epilepsy Monitoring Unit). The admissions clerk asked if we needed a guide, I told her we could handle it. (haha) So when we got up to the EMU, there wasn't anyone waiting for us. We found the room he was in, and we just sat around for a while. There was a twin bed for Tucker, an arm chair that folded out to a small bed, and a couch that folded out into a bed. So there was plenty of room for all of us, luckily. I went to find a nurse, and I also found a big playroom. The nurse came in to take Tucker's vitals and I went to the playroom to pick out a few trucks for Tucker. Gina also picked out Guess Who and Life for them to play.

The tech came in to put the leads on Tucker's head. There were about 40 sticky leads that needed to be attached to Tucker's head and face to monitor his brain wave activity.  It took the tech more than 30 minutes to attach them all, and Tucker behaved perfectly while this was done.....I was in awe.  Mom and I had to sing "night night, Teddy Bear" about 100 times, but that was expected!  Tucker is extremely tender headed (he cries in the morning when I brush his hair, even with soft brush), and he likes to rub his hair when he is stressed out. Of course this was not an option as the leads were on his head, so I lay next to him and he rubbed my hair instead. After the leads were on, the tech wrapped Tucker's head with several gauze-like towels, then wrapped his chin as well. He looked like a Sock Monkey, Rapunzel (he had a long gauze ponytail), and a nun.  So we of course made fun of him for the next 23 hours ;)

The leads were long enough that Tucker could go to the bathroom, and move between the couch, bed, and rocking chair. But he couldn't leave the room.  The rest of us could leave, of course, and we took turn leaving when it was time to eat. Tucker caught on to this quickly, and he started going to the door saying "it's time to eat" trying to get his turn to leave!  We checked in around 1030am, and by 1pm it was time for Tucker's nap. Mom took the teenagers to go stretch their legs and get lunch (they ended up at Smashburger-yum!), while I settled in to rock Tucker and eat my complimentary hospital lunch.  I am so proud of mom! She drove around Houston without me, haha. It was only a few streets over, but still, she hadn't done that before.  Jene'e doesn't usually eat hamburgers, but she loved Smashburger (so does everyone).   Tucker took a good nap, after asking me about 2343098430 times "they comin' back?" "they go to Aunt Kim's?" Poor kid thought they had dropped us off and went back to LC! 

They came back around 3, and we just spent a lazy afternoon together, reading and playing board games. Tucker loved being in the middle of Jene'e and Gina's games, taking all of the pieces from them! Around 5, I decided to take a break, so I took the girls out to get dinner and to unpack at the nearby hotel.  That way when mom and the girls left the hospital at 9pm they wouldn't have to bring in all their luggage in the dark. So anyways, G and J loved the room, they were just sad that Tucker couldn't stay too (staying over at hotels is one of his favorite things). We went and picked up dinner, then headed back to the hospital. That hospital is truly a maze, and it was pretty scary in the dark. So I thought I had a good solution when I parked in the hospital parking garage instead of the physician's tower garage. We parked there, and we brought the food in to Tucker's room. He and Nana had a good time rocking while we were gone, and Tucker was so excited to have his own little pizza to lick while we ate pasta and breadsticks.  The night nurse came in to check Tucker's vitals, and he was more than eager to help out. He held out his arm and held the thermometer for his temperature, then he held out his arm for the blood pressure monitor (he usually fights us on this), and he put the pulse ox monitor right on his toe, then stared at the screen, like he was going to interpret the numbers for the nurse. When she was done and ready to leave, he wouldn't let her! So she left the pulse ox with us for about 5 more minutes before she finally had to take it.

Mom, Gina, and Jene'e left at 9pm. Of course my great plan was not so great, so about 5 minutes later they called me because they were lost in the hospital.  They ended up finding a doctor that told them how to get out, then they made it to the hotel and were ok. They didn't come back until 11am the next morning, which was fine, because Tucker pretty much slept from 9pm that night until 10am the next day.  I packed everything up, and at 10am the tech came back to take all of the leads off. It was pretty painful. He had to use acetone to get the sticky stuff to come off, which Tucker did not like. Then even after the leads were off, most of the glue was still there, so I had to put him in the shower and scrub his head. Even after that, he looked like he had the worst case of dandruff ever! But I knew at that point I couldn't push it, so I just left him like that.

We had plans to meet another family, the Pohlas, at the Houston Children's Museum at 1 (a friend of mine Casey had sent me free passes, and the Houston museum is rated #1 in the US).  So we packed all of our luggage and went to find some lunch. Tucker was so happy to be out of the hospital, even though he was just there for less than a day. He wanted pizza again, and the only pizza place we could find was a carry-out only place. So we ordered a large pizza and walked across the street to a small park. It was so nice to eat outdoors and enjoy the scenery after being inside for 24 hours. The weather really was perfect.  We went to the museum for 1, and it looked like everyone else in Houston had the same ideas as us.  We met up with Pohlas, and it was nice to see them and their 3 boys. It was very crowded in the museum, so we all lost touch with eachother a lot, but Tucker loved it. There was this huge climbing apparatus, but Tucker was too scared to go in there with the bigger kids. We found an area that was set up like a kids' town, it had a grocery store, restaurant, news studio, and also a police department. Tucker spent the rest of his time going from the police car to the ambulance. He loved it, and even Christmas bear got to drive the ambulance.  G and J went around the whole museum and I hope learned a lot from the different exhibits. Jene'e actually told me at one point "Leigh, you are the coolest mom ever" since I took the time to bring them to the museum. That made me so happy, because most of the time I don't feel very cool! hahaha

After about an hour of being in the crowded museum, Tucker had enough and I was sensing a huge meltdown coming. So we said our good-byes and got in the car, headed back to LC for a longer stay.  We met Aunt Kim and the girls at their local McD's which was just remodeled to put in a huge playplace. Tucker loved it. He was very unsure of the steps at first, so Grace and Morgan went up with him once, and that was all that it took. He was going up and down, over and over, even when the bigger kids went up the steps and couldn't find their way back out.

When we got their house, we stayed up for a while before going to bed. Tucker got to see Uncle David for a little while before bed, so he was happy. I got to talk to Morgan for a while, the girls are getting too old! The next morning we slept in and took our time getting ready to leave.  Well, everyone except Tucker, of course. He woke up early and went to all of the girls saying "get up! get up! play wit me!" This started a fight between him and G:
Tucker: "get up!"
Gina: "no, you get out!"
Tucker: "no, you get up!"
and this went on.....hahaha

Of course, as soon as everyone gave in and woke up, Tucker was ready for a "map". He slept for about an hour while we all waited for him to wake up so we could finally play.

At some point I decided that Tucker's dandruff look was really too much. So I sat him down in the bathroom to brush the glue out of his hair. I knew it would be painful, but that stuff had to come out! Grace came in, gave Tucker his bear, and held his hand while I brushed his hair. It was so incrediblly sweet, and Tucker sat through the whole thing.  With Tucker looking much better, the kids played outside for about an hour before we left at lunchtime. We were sad to leave them, as always, but we will see them soon.

We should get the results from the EEG in the next few weeks. Tucker's last EEG was run over 3 years ago, and that one came back normal. Tucker sometimes has staring spells, and the dr. wants to make sure he is ok.

When I got home and told Chris all about the trip, he said "Wow, that sounds like pure hell." Hahahaha, and I thought it was the most fun I'd had in a while! I guess I don't get out much ;)  No housework, cooking, running errands, or going to work for a few days? Sounds great, right?
Having the teenagers and mom along with us for this trip made it really feel like more of a vacation than a medical trip, even though poor Tucker didn't to "go to da hotayal!" Maybe next time!

Christmas 2011

Christmas 2011 has come and gone, and it was a very Merry Christmas for our family!

Tucker got so many gifts from family and friends that he got tired of opening them, haha! Santa stuck to the 3 present rule (my mom had that for us, we got the same number of gifts as Jesus got, though not the same ones, haha). Those presents were well-received, as they were a big kid Spiderman bike, a talking moving firetruck, and a new IPod Touch for all of Tucker's music, games, and pictures. Chris and I have finally learned how to text on it so that hopefully we will soon transfer all of our photos and videos to his IPod for his amusement. As of now, when I walk in the door he demands "phone!" then he takes my phone, and scrolls through the photos until he finds whichever one he wants that day. Lately it is the picture I took of him with Grace, Morgan, Gina and Jene'e at the Poche's last week. He loves it!

He got all kinds of other great toys and gifts, but more importantly, we were all well and together on Christmas day instead of stuck in the After Hours clinic with strep throat like last year. Last Christmas we actually got take-out Chinese food for lunch, it was pathetic! This year Chris got a stomach bug two days before Christmas, just in time to leave all of the last minute wrapping and errands to me ;) So Tucker and I made ourselves scarce so that Chris could rest. We had fun visiting with Lacy and Josh and Gina; we also took Gina to breakfast one day, and Tucker was very upset when the eggs we ordered showed up on his plate already cracked and cooked! 

A few weeks before Christmas, Tucker decided that a little bear with a Santa hat was his new best friend. He calls him "Chri-mas bear" or "santa bear" depending on his mood. Well, Christmas bear is Tucker's imaginary friend, or imaginary baby, we can't decide. He puts Christmas bear into all of Kinley's seats, like her high chair and walker. He also makes Christmas bear have his own couch cushion, so if you think you can move Christmas bear out of the way so that you can sit down, you are wrong! One time I put Christmas bear into his own seatbelt next to Tucker's carseat, and he was so excited. So now Christmas bear always has to be buckled up, that was a mistake starting that. Christmas bear goes everywhere that Tucker goes, so for example, when I say "let's go to Sissy and Pops", he says "Chri-mas bear come wit us!" haha

We spent a lot of time with family over the break; I was off of work for 11 days, and it was so nice. Of course we spent a good bit of that time in doctor's offices, we wouldn't be us otherwise. On December 20, Grace and Morgan came with us to New Orleans for two appointments. Tucker was ecstatic to have his cousins riding with him all the way to Nola and back, although he was upset that Christmas bear didn't get his own seat.  The girls each wanted to push Tucker in his stroller, take turns feeding him his tube feeds, really anything they could do to play with Tucker and/or help him. The ENT said that Tucker's ear tubes both fell out, so now we are watching him closely to see if he will need replacement tubes or if he has maybe outgrown the need for them. Tucker put Christmas Bear in the patient seat, and asked the doctor "check Bea's ears" she said no she had to check Tucker's ears! He is such a mess ;)

On the same day as the dr. appointments, it was Grace's 9th birthday, so after the first appointment (ENT) we took the girls to the mall and had pizza for lunch. I took Morgan and Tucker to the Pottery Barn Kids store, where Morgan fell in love with the Star Wars bedding, and Tucker fell in love with the beds and lamps. He is like Goldilocks, trying every bed to see which one was just right, even though there were tons of toys. Our second appointment was a bust, as we got there 5 minutes late, got checked in, then were left in a hallway and the waiting area for 30 minutes, then told that we were 40 minutes late and the dr. couldn't see us! Seriously, we were so angry.

The girls were so good, though, and they were happy to be heading home a little early. We stopped at McD's on the way home for ice cream, then we bee-bopped the whole way home to Bruno Mars, Justin Bieber, and Maroon 5. Christmas Bear also got into the spirit, Tucker made him dance, it was adorable.

The day after Christmas we left for Lake Charles, then onto Houston for Tucker's EEG. I'll post about that in the next few days (hopefully!).