Christmas fun with Cousins

Tucker has been having a blast with his cousins. If you don't know, the cousins that Tucker spends the most time with, both older and younger than him, are all girls. So Tucker spends most of his playdates with Barbie, Justin Bieber, make-up, Princesses, Dora, etc. The other day he actually cried when he asked Molli for a firetruck and she didn't have one!

 Tucker adores his cousins, and he loves spending time with them. Here is a picture of Tucker playing with baby Kinley.

 Here is a pic of them eating Cheetos together. This is from yesterday. Tucker had a rude awakening when Kinley started crawling and toddling around. He was used to her laying in her seat or having people hold her, now she is everywhere, lol.  He is pretty bossy (in case you haven't noticed) and a 10 month old is pretty hard to boss!  His reactions to Kinley are very "normal" but we are not used to normal, so they have taken all of us by big surprise. Kinley is quite the boss as well, and both Tucker and Kinley are so cute that neither one of them hears "no" too often :)

The next picture is proof that Tucker has been spending a lot of time with Molli! We went to her house two weekends ago, then this Saturday Molli spent the day with us. She goes straight for the one pair of high heels I own. I do not have a very good dress-up collection, haha. Tucker wants to do anything and everything that Molli does, including trying on my high heels, too :)

He only made it about two steps before falling over, just like me.  Which is of course the reason I own just the one pair of high heels.

About a month ago, I made the great suggestion to my sister and aunt: "let's get the kids together for a baking day." They all thought it was great...and it was great, but wow, we really underestimated the amount of work it took for us to bake cookies alone, not to mention trying to get the kids involved without ruining the kitchen, haha.  Thank goodness Meagan was there, I don't think Susan and I had any clue what was going on.....no offense to us!

We thought we picked two easy tasks, cutting out sugar cookie dough into stars, then stacking the baked cookies on top of eachother to make a Christmas tree. The second cookie was gingerbread men, simple enough, right? The kids had an absolute blast rolling out the dough, cutting the dough, then decorating the cookies once they were baked.

Here is Tucker decorating his gingerbread man. They have been having a Gingerbread unit at school. So when you say "Run run run as fast as you" he says "can!?" then you say, "you can't catch me, I'm the" he says "Gingabed man!" It is SO CUTE! He also knows all the words to Jingle Bells, including the "Dashing through the snow" beginning, which Molli didn't even know. It cracks me up when I teach Molli the words to a song, she is just so amazed that Leigh Leigh knows anything at all. My mom says that is because kids think only their teachers at school know stuff, not their moms or aunts. So anyways, Tucker and Molli both know all the words to Jingle Bells, and Tucker's face lights up when anyone sings it with him.

 Tucker's older cousins Addi and Aliyah also decorated cookies. They did the work of rolling and cutting while Molli and Tucker just decorated. Tucker also mashed up a pan of carefully cut-out stars, but his cuteness kept him out of trouble, as usual :)

Here is the note that Addi and Aliyah wrote once they were done baking and had gone outside to play.

 The note was very effective. Even I, a self-professed cookie monster, would not dare touch these.

And a fantastic part of the day-Uncle Joey taught Tucker how to ride Molli's big bike. Tucker worked so hard at it, and Uncle Joey stayed on him and wouldn't let him quit. His face just lit up when he got the bike going without help, and now he is a bike-riding machine. Perhaps Santa will deliver a new bike under our (now-dead) live Christmas tree. Maybe it will even be pink ;)

I also went to my parents' house this past Saturday to bake cookies with my sister Jessica. She is more of a watcher than a baker, but luckily Molli came over and was very eager to help. I don't have any pictures from that day, I forgot the camera at home. The cookies were delicious, as they are all gone and it's only Monday.

Tucker's language has blown us away this past week. His therapists are teaching me how to ask Tucker the right questions. One of my biggest issues is that I never know how Tucker's day has gone, or what emotion he is feeling, why he is frustrated or acting funny....really the inability for him to share anything with me. His language has exploded as far as labeling items and demanding things of us, which is a fantastic first step. The next stage is to learn how to extract the information that he has been storing in his brain for years, unable to get it all out. His therapists are showing me how, and I am blown away. One instance is when his therapist started with the gingerbread story, and Tucker finished it. She said that there are so many more things that Tucker knows and wants to talk about, but he doesn't know how. So we will be working on that for months and months I'm sure, but the gingerbread instance gives us all so much hope :)

Next weekend is the big Lavigne party (bring on the tacky sweaters!). Then Morgan and Grace are spending the week at our grandparents' house. The girls are coming with us to two dr. appointments and hopefully a Santa visit on the Tuesday, and I know that Tucker will love spending the whole day with them. We'll probably be over to visit each night, too, as long as Tucker's not too tired.

Thankful Mommy

NOTE:  I just found this post from Thanksgiving, I never hit "post."

Tucker has been hilarious lately, while also trying to drive me crazy ;)

I think he took his loony pills last Sunday before 930 mass, as he started laughing hysterically during Fr. Rubin's homily...I had to clap my hand over his mouth and drag him to the cry room...of course the name didn't really fit, as my child found everything to be hilarious for the rest of church.

We don't usually go to church so early, but I thought we could try to get to the mall for noon when it opened so that we could see Santa before a line formed. Tucker really doesn't understand about Santa, and I am trying to make a big deal about Santa bringing presents for Christmas. I am also trying to make a big deal about Baby Jesus being born on Christmas, I am sure Tucker is very confused about how the two concepts relate, lol. He gets elves and Santa Claus and old men confused.....so I thought seeing the "real" Santa at the mall would help the confusion. Of course we got home on Sunday at 1045 or so, and Tucker demanded that Chris rock him and "take a map." Chris asked if he wanted to take a map or go see Santa, thinking that he'd say go see Santa since he asked him that last....but no, he said "take a map." So we did, all three of us slept for over 2 hours.  It was nice, at least, but we didn't see Santa yet.

Tucker loves the Mickey Mouse clubhouse Adventure in Wonderland video. He watches the 45 minute video at least once each day, and he is FINALLY starting to sing along and/or answer Mickey's questions. At the beginning, you have to say "meeska, mooska, Mickey Mouse" to get the clubhouse to appear, and you say "oh toodles" to get the mousekatools. Anyways, it is hard to see if Tucker is paying any attention at all, but lately he is singing along to "tick tock, tick tock, we have to fix the cuckoo clock" and telling Donald Duck, "be patient!" when Donald gets all fussy about the clock.  It is one of the cutest things ever! He is so into it.

Thanksgiving was nice, but Tucker was pretty out of it for most of the weekend. Chris took him to get his flu shot on Wednesday afternoon, and I'm not sure if that just tired his little system out. He took two naps on Thursday, and two more on Friday after sleeping all night. On Thanksgiving Day, we went to Meagan's and Chris's house for tons of food...two turkeys, two hams, tons of sides, and about 8 desserts, lol. That evening we had planned to take Tucker and Molli to the movies to see the Muppets, but by the afternoon I could already tell that Tucker wasn't going to make it. He slept almost all morning, and then in the afternoon he was tired and cranky again.  Tucker and Chris stayed home, and Molli and I still went to the movies. She worked hard at school and had three happy faces, plus she was super excited about going. Of course she had no idea who the Muppets are...she thought they were Alvin and the Chipmunks!  She slept the whole way to the movies, and I was worried that the excitement was too much for her. When I parked the car, she woke right up and she was so happy. The movie theatre is in a new development with several nice clothing stores, restaurants, and furniture stores. They were all closed for Thanksgiving day, but Molli loved looking at all of the mannequins through the window.  She made me promise her that I'd buy her sparkly dresses, pretty earrings, and really high heels as soon as she was big enough to fit into them, haha. It will be a while, as she is only 4!

We had fun at the movies, then we got hamburgers at McDonald's for dinner. How very un-Thanksgiving of us, I know, but I hadn't grabbed any leftovers from lunch.  I knew that Molli would fall asleep on the way home, so I wanted her to eat first. Of course she fell asleep pretty much as soon as we got back into the car. By this time, Tucker was awake and was waiting on Molli to come home and play, even though it was 9pm. Being off of school had totally thrown off his schedule. When we got home I carried Molli into the house and put her in the day bed, and Tucker just stared at her. He kept saying "wake her up" and "Mo-wee, play wit me!" so we had to close the door and tell him to leave her alone! Poor kid, but soon he was asleep, too, and so were we.

On Friday morning we woke up, and Chris cooked breakfast for us. Molli had to have her coffee (really one drop of coffee with the rest of the cup filled with milk), which Chris thought was the funniest thing.  We all got ready and went to Lowe's to pick out a real Christmas tree. Tucker had much more fun riding in the race car shopping cart, but Molli was excited about the tree. We put it in the truck and then headed home to decorate it. Chris put up the tree and the lights, and then I realized that I really didn't have any ornaments. Molli had helped me put all of my old ornaments into a big vase to make a Christmas centerpiece, so I really had none left. The tree just stayed up with the lights for the afternoon.

On Friday afternoon, we all gathered at my house to watch the big Arkansas game. It was great, and of course we won :) The Honey Badger made that great over-80 yard touchdown, and I swear the house shook from everyone's celebration. But Tucker slept through it all!

It was hard to adjust back to being at work and school after Thanksgiving, it was nice to spend a few days together.  Chris has a new job, where he works outside for 10 hours each day, which is bad when it is so cold lately.  The job is in St. Charles Parish, so he gets home later than me now, which Tucker does not care for, haha.  Once I'm home Tucker stands at the window waiting for Chris.

I meant to write up a "Why I am Thankful" blog, but I never sat down to do that. I will soon, maybe to wrap up the year, and how far our little Tucker has come since Jan 1, 2011.

Mito Camp

Well I wonder if anyone has been checking this blog, I haven't update in so long!

We have been busy, as usual. I spent a weekend in DC with many other March of Dimes moms, and that was amazing as it is every year. Then for Halloween weekend, Chris, Tucker, and I packed up and made the 7+ hour ride to Camp for All in Burton, TX for a weekend at Mito Camp.  Camp for All is an all accessible camping facility that is open all year; during the summer there are week long camps for organizations like MDA, juvenile diabetes, etc. Well, the waiting list for a whole week camp is long, but Mito Camp got a whole weekend last year. Tucker was too young last year, as the rule is you have to be 5. So this year he got to go, and it's a family camp, so Chris and I went, too.

It was an absolute blast.  Tucker was the youngest kid there, but it was okay because each camper had their own counselor. Chris slept in a cabin with the dads, I slept in a cabin with the moms, and Tucker slept in a cabin with 3 other boys and their counselors. We got there pretty late on Friday night, as we hit serious traffic in Houston, and could not find a way onto the HOV lane. We were pretty aggravated, and we thought we'd have to get a hotel room for the night, as the camp gate was only open until 8pm. We got there right at 8pm, and the camp director took Tucker right over to the karaoke night going on outside. Chris and I unpacked all of Tucker's meds and instructed the camp nurses on everything. Tucker went happily with the camp director, and he tried to be the star of the karaoke show several times. While Chris and I set up Tucker's bunk and unpacked our stuff, we heard a lot of Justin Bieber and Taylor Swift being sung over the loudspeaker, lol.

I am a bit of a control freak (I know, hard to believe, right? ;) ) so I was not happy to be letting the nurse do all of Tucker's meds and feeds. But it was ok, the parents were still in charge of that type of thing, the nurses were just there for support and for emergencies. Tucker's counselor was Mrs. Ruth, a mother and grandmother of many, and also the founder of a great nonprofit organization in Houston.  She thought she would have her hands full with Tucker, as he danced and ran around all Friday night. We assured her that Tucker had melatonin to help him sleep, and after we gave him his meds, he was so happy to go to bed with the other kids.

After the kids went to bed, Chris and I went to the adults meet and greet. Chris was nervous, of course, because he thought we'd all be sitting around talking about our feelings and singing kum ba yah, lol.  Well, we walked in and got a snack, and Chris started talking football with the other dads, while I started talking supplements and therapy with other moms.  Being in Texas, we were among many A&M fans, but there were several LSU families as well.  LSU had a bye week, but Chris has the college football app, so he kept everyone updated on all of the other games that weekend (we didn't have any TV or laptops as we were at camp, but you know we can't make it two whole days without our phones).

It was really nice meeting all of the other families and hearing about the weekend's activities, as most of the parents had been to camp last year.  We headed to bed around 10pm, and then we were up at 7. We all ate breakfast together (the food was delicious all weekend), and then the kids and adults split up for different activities.  There was 15 minutes of loud music and stretching for energizers, and of course Tucker loved that part! For the first activity, adults had free time and the little kids (I think 9 years old and under) headed to the Tower. The Tower is a big rock climbing wall, and when you get to the top, you take a zipline to get down.  So of course all of the adults spent their free time with their kids at the Tower.  This was at 9am, and by this point, Tucker was very sleepy. He was crying "take a map" which translates to nap. On the weekends, Tucker usually takes two naps a day....I assume it's a mito issue, that he is just so tired by the weekday's activities, so he needs to rest on the weekends. He wouldn't even walk two feet, so Chris carried him to the Tower, then he went back to our car to get the stroller. (I think a medical stroller/wheelchair is in our near future, as Tucker just can't handle walking too long, and he is getting way too big for his stroller and/or Chris carrying him.)

Tucker watched the first few kids climb the rocks and then zipline, and he said "want to ride da ride."  So we told him he would ride first, then take a map. Poor kid, he feel asleep in line! Since we were the last people to get to the Tower, he was last in line. Remember, the camp is completely accessible, so for people who don't really have the strength to climb the rocks, there is a lot of help for you. The easiest route is to simply be pulled straight up, bypassing the rocks altogether. We asked Tucker "do you want to climb the rocks or go straight up?" He said "straight up peez". So that's what he did. He slept for a good 30 minutes, but when I said "Tucker its your turn" he woke right up. He loved every second of being pulled up, and then ziplining down. He had the biggest grin, it was adorable. Then when he got down, he said "ride again peez." By this point, time was up for the kids, and it was time for them to go canoeing. We asked Tucker what he wanted to do, and he said "take a map", so Mrs. Ruth took him to the cabin, where he slept for two hours.

While Tucker slept, the adults went to the Giant Swing. It was like the swings at amusement parks, where you get pulled up very high, and then you get let go and swing very high.  But at this swing, you get to control how high you go. Almost everyone took a turn, including me. I did not realize how high I was going until they let me go! It was awful :( I screamed "I don't like this at all!" The other people told me I went very high, so why did I do that? It didn't look that high, it just made me nauseated when I went down, lol. After the swing, it was lunchtime, so we saw Tucker again. Mrs. Ruth said he slept for two hours, so she was worried that he wouldn't rest for the required one hour rest time. Well, that was no problem because after lunch Tucker took another two hour nap! Chris and I both went to our cabins for 45 minute naps, then we grabbed coffee in the kitchen before meeting the other adults at the Tower. By this time, all of the adults were tired, but we all enjoyed climbing the rock wall and ziplining. Riding the zipline was much more fun than the Giant Swing, and Chris rode it twice. 

Next was a cooking class, which was taught by an award winning BBQ cooking couple. The class was really very informative, and it was a nice break. We also got to sample BBQ brisket and fried oreos, which were delicious. After this, Chris and I met Tucker to give him his afternoon feed. Thankfully, he woke up in time to go horse back riding while we were in cooking class, and he LOVED it. Mrs. Ruth said he was so happy to be on the horse. They also went to the nature station, which has many caged pets. Tucker loved the big turtle, but hated the snake, lol.  We fed Tucker, then we dropped him off at Arts and Crafts to paint pumpkins. Then Chris and I went to the corral to ride horses. Chris had only rode a horse once in his life before this, while I am a semi-pro ;) after spending a week at horse camp when I was 10.  We both enjoyed the relaxing horse ride, although my horse stopped every few feet to eat grass, so I ended up at the very back of the line.

We rode the hayride back to the big gathering hall, and we met Tucker and everyone else for dinner.  It was BBQ brisket, and it was yummy (you know I love food, lol).  Then we all had an hour to get dressed for the Halloween carnival. After weeks of debating and online shopping, the three of us all bought cowboy costumes.  So we all went back to our rooms to get dressed, and for the first time ever, I was the first one ready.  The carnival was at the outdoor basketball court, and it was great. There were several games, where the kids would win tickets and redeem them for prizes. There was also cotton candy and drinks, along with great Halloween dance music. Tucker didn't care about the games or the food, all he wanted to do was dance! He was the absolute cutest cowboy I've ever seen, and he had the biggest grin on his face all night. The poor other little kids were exhausted by this point :( One of the other kids burst into tears at dinner because he was so tired, and he went to bed early.  But Tucker took two naps, so he danced all night (well, until 9pm, lol).

We all went to bed around 10 again that night, and the next morning we were up early and packed by 730. We made it to the flag raising ceremony, and Tucker got to help raise the flag. He was so excited, and it was so cute. We all ate breakfast, then we went back outside to take camp pictures. That took about 30 minutes, then we went inside so that all of the kids could sign eachother's memory books. After that, it was a surprise, which ended up being trick or treating around the camp. Tucker enjoyed that, but by this point he was pretty tired. We went back to the big hall for lunch, then it was time to pack up our car and leave.  We went around and said good bye to everyone then got in the car. The ride home was at least an hour shorter as there was no traffic. 

We were exhausted, but we had so much fun that weekend. We really enjoyed getting to spend time with other families, and with eachother....with no worries or responsibilities, no cooking or cleaning, or errands to run. It was so nice! We are so thankful to the donors to Camp for All and Mito Camp who made it possible.

Also, on a side note-Tucker is truly and 100% potty trained, even on a 7 hour car ride. He is such a great car traveler, we are so lucky about that.  On another note, you think mito camp would have more rest time, lol. I was not at all sure what to expect, but I thought there would be a longer nap time ;) 

All Grown Up

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

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

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

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

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

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

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

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

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

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

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

So Many Doctors....

Tucker has been seeing all of his doctors lately. About every 6 months or so, we have check-ups scheduled with each of them.

Having them all scheduled together is good because we have months of "free" time, but when the appointments are due, it makes us all so busy.  So far Tucker has had at least one appointment per week since the first week of August, and he has one a week scheduled until late October. Then, hopefully, we have another few months off.

I have a calendar at work for appointments, and the other day I realized there are way more Tucker appointments on there than any work appointments. We added the two OT evaluations this month, and then Tucker's g-button kept leaking, so he had two surprise appointments with the surgeon; they ordered a new size for him, and his button is much better.   Tucker had follow-ups with his mito dr, new pulm/immunology dr, surgeon, geneticist, and now an appointment with a new pulmonologist/sleep doctor in Houston. This week is the eye dr, then pulmonology in BR (hopefully he will discharge us as Tucker is now followed in Houston), and then the next week Chris and Tucker are back in Houston for a 24 inpatient EEG.  Add to this the daily ABA therapy, and the every other week OT visit. He is a busy busy guy!

I also need to schedule a follow up with the GI, and then I think we're done! Hopefully we keep him healthy this winter, all three of us are due to get our flu shots soon.

Good news-the geneticist thought Tucker looked fantastic. He attended the UMDF mito conference in Chicago in June, and he learned a lot more about mitochondrial medicine. He is actually giving a lecture in a few weeks in New Orleans, we are all attending.  I think he called us out of the blue to tell us about the new genetic testing available from Transgenomics. Well Dr K had already told us about it, and Tucker has bloodwork done for it already. He also checked the levels of vitamins in Tucker's blood to see if all of the supplements are being absorbed into his body. He said he does not want to overstep or duplicate anything Dr K does, but he wants to help us in the in-between times since he is so much closer, and we only see Dr K every 6 months.  He made several good suggestions, such as for Tucker's nap time and energy conservation. 

Tucker was very good for the two times he had labs drawn in Houston. Well, he was terrible in New Orleans! I don't know if it's because it was the end of the day, if he was tired, or if Chris was there and he was just being dramatic. He fought all four of us (Chris, me, two lab techs) to hold him down, then once he was stuck, he was fine! He just didn't want to sit still. He is hilarious.

So after this, we went to the nearby mall and let Tucker pick a prize at the Disney Store (it's the closest one because all of the ones in BR closed down). He was SO excited to look around, he ended up choosing a small Tow Mater truck, and a small Winnie the Pooh Bear. So as with all bears, he needed a name to distinguish him; this one is "Pooh Bear," of course. So he is added to "teddy bear", "black bear", "big bear", "little bear", and of course, just plain "bear."

We saw the geneticist that Thursday evening, then we relaxed that Friday night, then of course the potty training weekend was next. On the next Friday morning, we packed up the car and left for Houston at 5am. We drove straight to the doctor's office, but we stopped every hour so that Tucker could use the potty. And he did!! He did such a great job using only the potty, he never asked us to stop, but we scheduled potty breaks so I guess that worked.  I think the ride was way too much on him, though, because he was in an awful mood at the dr's office...I mean, like made us want to leave him in Houston kind of a mood!  He cried the whole time we were in the waiting room, nothing made him happy. Then he threw a fit when the nurse tech came with the pulse ox sticky reader (don't you love my terminology?). I told him to sit down and let the nurse read his sats, so then he cried real tears! The tech gave him two stickers, then he smiled so big. So we know he was just being overly dramatic, he is such a mess. She took his temperature, which was fine, and we didn't even attempt the blood pressure cuff; he totally freaked when he saw that.

The doctor came in soon after, and Tucker loved her. He was like a different child, playing with her hair and acting like he was reading his chart. The dr. is not really too concerned about Tucker's sleep; she said that the dr. in Baton Rouge is concerned by the last sleep study (from Aug 2010) because of two indicators-Tucker is not getting enough REM sleep, which is the type of sleep that helps the brain to rest. He also has a lot of limb movement; it is small and you can't usually see it, but he moves so often that he wakes himself up all night. The central apnea and obstructive apneas were in normal range, so she is not in a hurry to do another sleep study. We already had one scheduled for that night, but Tucker has a cold. Right when the weather got nice and cool, of course he got a cold. I didn't think it was a bad cold, and it's not, really. But the dr. said that any type of stuffiness can make the test come back abnormal, which means we'd have to repeat it to make sure it wasn't the cold that caused the odd results. So we said NO thank you! to the double sleep study. If you have never seen a picture of Tucker at a sleep study, ask me to show you one time. He is hooked up to what looks like spaghetti wires, they are hooked to his head, face, neck, chest, tummy, and legs, he has a cannula in his nose, a sensor in his mouth.....I don't know how anyone sleeps like that. So we would rather wait until he is 100% cold-free to give him that test.

When the appointment was over, we still had a very cranky 5 year old on our hands.  We were also exhausted from the drive, so we decided to stay in Texas and maybe enjoy ourselves instead of rushing home.  We drove the 20 miles south to Kemah, TX, got a hotel room, and took a rest.  Tucker did not actually fall asleep, he was too excited to be in a "hot-ayal", but after an hour of resting he was in a much better mood. We drove to the nearby Kemah boardwalk. I have wanted to bring Tucker here for a long time, I thought he'd love it. There were several kiddie rides, and some that were a little wilder. There was barely anyone there, so Tucker and Chris didn't have to wait in any lines. They rode the double decker carousel twice, the train, the aviator, which is a spinning ride, and the bouncer, which is one of those crazy up and down up and down rides. Of course Tucker loved all of it.

Then Chris needed a break! So Tucker rode two kiddie rides on his own. We put him in his stroller and took him to walk around the bay area, and to look for some place to eat. We passed a candy/toy store, and the windows were lined with bears. Tucker pointed and said "bear, bear, bear!" so we went in. I told him he could pick a small bear, well the walls were lined with bears of all shapes and sizes. There was even a bear that cost $500! After about 15 minutes, Tucker chose a small white bear, which is now named "white bear."  He held onto that bear for the rest of the night, he was so happy :)

We went to sleep early that night, Tucker was fascinated by the telephone with a cord in the hotel room. Chris posted a picture of Tucker ordering room service on facebook (just kidding! we unplugged the phone so he could play with it).  The next morning Tucker woke us up around 7am, but then after we were completely awake, he fell back asleep for two more hours.  Typical Tucker, we wouldn't expect anything different. So Chris and I ordered room service breakfast, and ate way too much yummy food :) We waited until about 10am to wake Tucker up, then we packed up and headed home. We had a pretty boring rest of the weekend, just cleaning up around the house and visiting family.

Tucker is still doing great with ABA, hopefully once the doctor visits are over he can get into more of a routine. Thanks for checking in on us.

Also, happy birthday to Tucker's Daddy, Chris :)

Yay, Tucker!! :)

I have such great news, Tucker is SO well on his way to being potty trained!!! :)

Warning---this post is all about the potty details of a 5-year-old, you may be grossed out!! (I know I was, haha)

Tucker went from being 100% in diapers last Friday, to now only wearing them at night.  I am honestly shocked by how well he did, and I am pretty surprised that Chris and I really stuck to the plan.  The ABA potty training program had 3 typed pages of instructions, and several detailed charts to fill in as we went along. I am all about instructions and rules, so I read over the lists several times. We planned to spend the long weekend stuck inside, teaching Tucker to use the potty (there was a tropical storm anyways, it's not like we could go anywhere!).  On Friday night Chris and I looked over the charts and discussed how ready we really were to get rid of the diapers....we were SO ready! But we weren't so ready to push Tucker into something he may not have wanted, and/or been ready for, only to punish him for messing up. We agreed that Tucker would just wear underwear for the 3 days, and we would stick exactly to the plan. If by Monday night it was obviously not working, then we'd put his diaper on and let Tucker relax for a few months until trying again.

Chris was on-call for work, meaning that at anytime the plant could call him to come in. He is on call about once every two months, and with the tropical storm and the cooler weather, we did not anticipate him having to go to work. Of course we were wrong. So on Saturday morning Chris left at 6am, and was gone until noon. I ended up with the ugliest part of the potty training, the beginning with all of the accidents.

When Tucker woke up, I put his underwear on him and took him to the potty. He had a new Superhero potty seat, which he was not too excited about.  He loves his new Cars underwear, so that was good! I had a goody bag of reinforcers ready, with Cheetos, chocolates, and gummy bears (he doesn't eat gummy bears, but he loves the bears of course). We also had Chris's power drill ready to go....Tucker loves playing with that, thinking he is fixing things. I put 8oz of water into Tucker's tummy every 30 minutes, then took him to the potty exactly 1 minute later.  He had to sit until he made pee pee; he usually went right away, so then he got "yay, Tucker!" and an edible prize to lick. He also got to push the drill for a few seconds to hear it make the noise.  The plan was to do this every 30 minutes until Tucker self-initiated the potty routine. This just means that at some point, he was supposed to realize that he had a need to go to the bathroom, and he wouldn't wait to be placed on the potty, but actually go there himself.

With all of the fluids, of course he had accidents. For the accidents, we had the Positive Practice Procedure. We make Tucker keep on the wet underwear, we scold him "NO, we do NOT pee pee in our underwear!" then take him to the potty and say "we pee pee on the potty! Let's practice." Then he has to take off his underwear, sit on the potty, then get immediately up. We return to the site of the accident, and say "NO, we do NOT...." again, then repeat the whole trip to the potty....5 times! The point is that you drill into their heads that you are not supposed to use their underwear, you are supposed to use the toilet.....and doesn't using the potty in the first place save you a lot of hassle?  lol

At the end of this, you are supposed to get them to help you clean up, this whole process is supposed to be very aversive, while pee peeing on the potty is extremely fun and rewarding.  The instructions said several times "the child will have many accidents, do not get discouraged, this is expected." Thank goodness the notes said that, because Tucker had so many accidents at first. And since I was giving him so much water, he was going often and a lot at once! After the first time he "helped" me clean up, he thought it was so much fun; so from then on I cleaned up and made him watch me, which made him mad.  Mrs. Amy (the ABA consultant) said that the PPP only works if the punishment is aversive; well, it turns out that Mommy yelling at Tucker isn't so scary. ;)

Once Chris was home at noon, and he saw my hair all pulled out and the house full of pee pee (slight exagerration), he was a little worried.  When Tucker had an accident while staring Chris right in the face, Chris tried the PPP. Well, that had quite a different effect. It didn't make Tucker magically potty trained, but he certainly was not happy that his daddy was upset with him.  By Saturday afternoon, Tucker was pee peeing every 10 minutes! I charted 43 successful potty trips on Saturday.  I think we went through 10 or 11 pairs of underwear on Saturday. We all had a heart-to-heart in the bathroom (which is pretty tough, if you've seen the size of our bathroom, you know the 3 of us barely fit in it at once), I explained to Tucker that he couldn't have sleep overs or go to the hunting camp if he kept peeing on the floor, I told him how he could be such a big boy and do so many more things if he would just pee pee on the potty. Later, after Tucker was asleep in bed (with a Good Nite Pull Up on), I was so upset. I felt like Tucker was working so hard, and trying so hard, and he just wasn't sure why we were so frustrated with him.  Throughout Tucker's life, he has always had to work SO much harder than anyone else, just to achieve things that most people take for granted. I was pretty worried that Sunday and Monday weren't going to get better, but we were going to try our best.

 On Sunday morning, Tucker was excited to put on his underwear. He was much more used to the potty routine, and he would make pee pee, then say "Cheeto!" or "drill!" because he knew he got to pick a prize.  He still had a few accidents, but he was going every 20 minutes instead of 10, so we caught him more often before he had an accident.  Sarah and Brad came over around 1230 to pick up the Pampered Chef orders for my family (I hosted a Pampered Chef Fundraiser for the UMDF last month, we raised $200!!), and Tucker was very excited to see them. They also brought their dog, Bullet, a bulldog that Tucker just loves.  Two times during their visit, we noticed that Tucker needed to potty, so we took him. Sarah and Brad screamed "yay, Tucker!" and he got to sit at the table and eat cheetos with Brad.  He was SO proud of himself.

After they left, Chris and I decided to be more dangerous....we weren't going to bring Tucker to the potty every 15-20 minutes, even though he needed to go that often. The instructions said to bring him every 30 minutes, and wait for him to initiate the potty routine in between. So......we filled him with fluid, and we waited....

About 5 minutes later, Tucker started crossing his legs, shifting his weight, doing the "potty dance," but he was way too into his tree house toy to get up.  Chris and I just stared at him and waited, ready to clean up the mess. Then at some point he looked up and said "pee pee on the potty." We were so excited, we raced him to the potty and he pee peed right away.  He clapped and said "yay, Tucker!" Over the next few hours, we continued to push fluids, but let him initiate the potty routine, and he did great! After a few more trips to the potty he had his fill of cheetos, so he asked "go to poppy's house." Chris and I were nervous about taking him in the carseat, but my parents live less than 5 minutes away.  We were also going stir crazy from being stuck in the house.  So we told Tucker if he got 5 stickers we could go to Poppy's house.  This means that he had to pee pee in the potty 5 more times without accidents. He was not at all happy with this plan, he likes to get what he wants immediately.

There was one time when he had 3 or 4 stickers on the chart, but he had an accident, so the chart had to start back from zero. At one point, I caught him trying to add stickers to the chart! But anyways, finally, he got to 4 stickers and was due for a potty time.  Chris put the carseat in the truck, we packed Tucker's bag, got him dressed (he had worn only underwear all day), and waited for him to pee pee on the potty one more time so that we could leave. Well, he wouldn't! He just didn't have to go.  He cried and cried to leave, and Chris and I were wondering where all of the water had gone, because Tucker had no need to use the potty.  We considered just leaving, and rushing to my parents then putting him on the potty there, but I knew that as soon as he was in the car, he'd pee pee all over his carseat. So we just waited.....finally, he had to go, and we all went to the potty. He pee peed, he got his sticker, and we ran out of the door. We took the potty chair with us, and over the hour that we visited, he pottied at my parents' house twice with no accidents :)

That night when we got home, Tucker made a BM on the potty, too, we were so excited! We called all of his grandparents and texted everyone, at this point we had no shame, it was hysterical.  Tucker got a big bowl of popcorn for his efforts, and he was just so pleased.

On Monday, we kept with the routine, and Tucker literally had zero accidents. He asked for Sissy and Pops on Monday morning, but we made him complete the sticker chart again to earn a trip there. By Monday, the house was looking terrible, as all we did for two days was follow Tucker around. So on Monday I cleaned a good bit and did the grocery shopping. Chris was called out to work again, but it wasn't nearly as big of a deal because Tucker did so well that day.  I decided to wash and change out all of the sheets on the beds. Tucker has a day bed, and as I was changing the trundle bed sheets, I noticed something under the bed---it was Black Bear, Tucker's favorite bear that had been missing for weeks. I had cleaned under that bed last week and even vacuumed, but I didn't see Black Bear....so I told Tucker that Black Bear came back to play with him because how he was a big boy. Tucker was SO excited, then he took all of his other bears out of the room (little bear, teddy bear, and Pooh bear), and just held Black Bear, he kicked those other poor bears to the curb.

So the day wore on, and as Tucker was going potty less frequently (more like every 45 minutes), it took a while to get enough stickers to visit Chris's parents. But he finally did, and I made sure he used the potty before we left. Chris's parents live about 10 minutes away, and I didn't want any accidents on the way. I brought his potty seat, and as soon as we drove up, we ran inside, and Tucker used the potty. Then he played for a long time, and almost an hour later told us he had to potty. So, we were ecstatic, because Tucker understood that he has to use the potty at both sets of grandparents' houses, there wasn't going to be any confusion about that. 

Yesterday Tucker went back to school, and I think his teacher was shocked when I told her that Tucker was doing so great. I sent extra pairs of underwear, but he didn't have a single accident at school. They took him to the potty more often, because he needs to realize that the teacher and paras expect him to use the potty there, too. Mrs. Amy was amazed. Honestly, so are we. 

Tucker does everything on his own time schedule. He had no interest in the potty until about a month or so ago, so we are just so surprised by his quick progress.  Chris and I are taking him to Houston on Friday for an appointment with the sleep specialist, and then an overnight sleep study. We are pretty nervous to travel the 5 1/2 hours with our newly potty training kiddo, so I guess we will be making lots of pit stops. Hopefully he won't need to go pee pee while we're on the long Atchafalaya bridge! ;)

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.

Day Two of the Trip

On the second day of the Houston trip, we got up pretty early. We got dressed and packed up, then we went downstairs for the free hotel breakfast. It was pretty good, the best part is they had boiled eggs. Tucker got an egg in a bowl, and he was so excited!

Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid.  He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.

Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before.  Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?"  Well.....that is up for interpretation!  It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.

The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.

By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days.  So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.

So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour  EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer. 

So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest.  Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic.  There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling.  I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.

We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them.  He licked all of the peanuts and the girls fought over who got to sit next to him.  Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in!  He was so proud of himself again, so we made a very big deal out of it.

So now it has been two weeks since the Houston visits.  Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low.  She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.

I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that.  So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.

I haven't heard anything back about any of the other lab work, so I think everything must be fine :)

Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.

I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)

Trip to Houston

It has been way too long since I updated, more than a month.  My job has been crazy busy this summer, but things are finally starting to calm down.

Tucker started school on Wednesday, and he will continue with ABA therapy in the afternoons after school. Hopefully he adjusts to the change well. Last year he was pretty tired in the first few weeks of school, but by November he was fine in the evenings.

He was SO ready to go back to school! He asks me to sing the school song all the time, and I still have to name all of his classmates. Of course, he is repeating the 4 year old class, so he will have all new friends, but I'm sure he'll like them, too. So far his teacher is totally amazed by how he has been in class, he has two "excellent" days in a row!!

So just an update:
The 4th member of our family, Buck, got very sick a few weeks ago, and we thought we would have to put him to sleep. We were very sad and stressed out for a couple of days, and Chris is now getting used to Buck's medicine schedule. Buck has been feeling much much better, and the vet's strict orders of having him inside in the air conditioning all day has made him quite happy! He really is a very good dog, but he is a Catahoula hunting dog, not really meant for an inside dog. So far it is okay, but he is just too big and too wild to be out of his cage too much. Of course, when he is out of his cage, Tucker gets in! I think he wishes he was a dog.

I took two days off from work last week, and Mom and I took Tucker to Houston. Tucker saw Dr. K, the mito doctor, for a 6 month check up and to get annual labs drawn. He also saw Dr. P for the first time, she is also a doctor in the mitochondrial clinic, she is both a pulmonologist and an immunologist, so she covered lots of issues.

Tucker has been very well-behaved lately, as well as less anxious and happier.  He was so very good during this trip, much better than we could have expected any 5 year old to be.  First of all, the ride is about 6 hours long. Then there is the waiting for the doctor (one doctor ran over 2 hours late!), waiting for the nurse, waiting for lab paperwork, waiting for lab techs, getting blood drawn (ouch!), and navigating our way out of the doctors office, through the parking garage, and out on the streets to our hotel.  So there are obviously many times during the two days where Tucker could have had a meltdown, and we were expecting one. But he watched his videos and listened to my IPhone for Jason Aldean songs, as well as looking in magazines for pictures of bears.

We slept in Lake Charles Monday night, and Tucker had an absolute blast playing with Morgan and Grace.  He was VERY upset when we left Tuesday morning without them! He wanted them to come with him :(

On Tuesday morning we headed to see Dr. K. Dr. K was very pleased with how Tucker looks, and how he has been doing. She said this is exactly where she'd like him to stay, or improve of course.  She also commented that he was doing better with speech and eye contact, although he did not really show off like he could have.  His blood pressure was high at first when they took it in his leg, but when they re-checked in his arm, it was fine.  Missy (Samuel and Lauren's mom) works for the clinic, so she came and talked to us for awhile. It was so great to see her, I had lost her cell phone number, so I hadn't talked to her in a long time.

There was a very exciting part to the appointment-all of the research into mitochondrial disease has yielded a new genetic test.  Before this test, Tucker was tested for 8 known genetic causes of mitochondrial disease, and they all came back negative. The new blood test can check for over 400 nuclear DNA causes of mitochondrial disorder.  This can provide much more information about mitochondrial disease and the cause of the disease and each type of disease.  Once a gene is isolated, then it will be much easier for other family members to get tested to see if they are affected, carriers, etc.  The test just became available 5 weeks ago, so Tucker is towards the beginning of the testing. There is a long waiting period for the results, so I am not sure when we will hear back.  Dr. K also ordered all of the regular blood and urine tests, so we headed over to the lab.

First, we tried to get Tucker to pee pee in the cup.  Tucker has been really into using the potty lately. He likes to stand up by the potty and pee pee near the potty, not in it! I have cleaned pee off the floor and wall many times in the last few weeks, and he is SO proud of himself! He says "pee pee on the toilet."  Then he flushes, even though there is no reason to.  So anyways, he does pee on demand sometimes, so I tried to get him to put some urine in the cup for about 10 minutes. It did not work, so we had to put the baggie on him to collect it. He was very uncomfortable with that, but it had to be done.

Then we went to sign in at the hospital lab, which took awhile, then we went to the lab, then Tucker started freaking out because he knew he had to get blood drawn. The last two times we went to Houston, Chris has come with us to hold Tucker down for the blood draws. Both times Tucker just held his arm out and acted like it was no big deal. So this time Chris did not come, and of course he freaked out! He actually picked Mom to hold him, so Mom had to hold one arm and hold down both legs while the tech took the blood and I sang!  The weird part was that Tucker was freaking out and screaming "Go see Samuel! Go see Samuel!" Mom and I looked at eachother, and I asked him "you want to see Samuel?" He repeated "Go see Samuel," I told him that he can't, that Samuel is in heaven. (He is a little boy that we all love that had mitochondrial disease.) I told him we could go see Samuel's mommy back at the clinic after he gave his blood (we had to bring some of the blood back to be Fed Exed out of state). The very odd thing is that Tucker only met Samuel three times in his life, and all of them were at least a year ago.  In October we stayed at their home while we were in Houston (Samuel passed away last September) and Tucker really enjoyed being there. Later when we saw Missy again, she said that Samuel visits people often; so maybe it wasn't so strange that Tucker was asking for him. We thought it was sweet.

So anyways, once the tech took the first vial of blood (there were about 10 in all), Tucker just stared at her, and we started naming the colors of the tubes! Tucker really is hilarious. We checked the urine baggy, it was dry. We then headed back across the street to bring the blood vial to Missy. She called me when we were in the elevator, wondering what took us so long. I told her we went as fast as we could, and she said "it's the next office over." I looked at mom and said WHAT??? So all of this time, we have been navigating the maze that is the physician's tower and hospital, getting Tucker admitted to the actual hospital, then going through that maze to get to the hospital lab, when there was a lab literally next door to Dr. K.'s office??? Turning a 20 minute process into a 2 hour process??  Now that is dumb, for real! lol We felt like idiots!

We dropped the sample off, then we went downstairs for lunch. There is a sandwich shop, the food was delicious, and we were all starving after our hospital trip.  Tucker ate his Cheetos, and he was content. So our last task was to turn in some urine for the sample.  We went to the restroom near the hospital lab (they already had all of the paperwork so we went back there) to check Tucker's pee pee bag.  Well it was full, so that was good. While I was trying to change Tucker, he walked over to the toilet and started peeing on the floor! He was way too short for the actual potty, but he was trying :)
I sort of held him up while also cheering him on, yelling "Nana, Tucker is peeing on the potty!!" when really his aim is horrible and he was peeing on the back of the toilet.  Mom is saying "good job" and the lady in the next stall is cracking up laughing at me. So then I sent Tucker out with no bottoms on so that Mom could change him, and I had to clean the pee pee from all over. Tucker had the biggest grin, like he had just ran a marathon or something, he was so proud of himself for peeing on the potty.

We got him dressed, we turned in the urine cup, and we headed out.  Tucker was so happy to be finally leaving and going to the hotel. Mom and I drove around for awhile, then we picked a hotel and checked in. We took a two hour nap, (which we all needed), but of course Tucker had to turn all of the lamps on and then off first.  He also got to press the elevator buttons many times, as we were on the 4th floor.  We had packed our swimsuits, but in the 108 degree heat index, it was even too hot to swim! We spent the evening at Target and ate dinner at Olive Garden. Tucker got his own kid-sized pizza, and he was so happy to lick every last bit.

I need to update about the next day, when Tucker had his first appointment with Dr. P. Hopefully I get to that sometime soon!

Great new things

Tucker has had an amazing few weeks...I have joked that he does better when Mommy is busy working, haha (the summer time is the busiest season for my job).  The last post was about our beach trip, well John Michael and Grace stayed at my grandparents' house the whole week after the beach trip. Tucker latched onto John Michael and never let go.  Chris and I had to work each day, but each night we would hang out with the kids, either at mom's or at our house. On Thursday night we took the older kids to Dixie Landin', a local theme park, and we decided to leave Tucker at Chris's parents' house. We knew it would be hard to separate him from JM, but he LOVES his Sissy and Pops, so we thought it would be fine. He screamed and cried "Jon Micah! Jon Micah!" as we left the house. It was truly pathetic. Chris and John Michael had a blast riding the big rides, and even convinced Grace to ride a few, which Tucker was too small to ride on. So it really was the right choice, and Tucker of course ended up loving being with his grandparents. Mom and Gina joined us, and Mom and I embarrassed Grace by dancing to the 80s music blaring on the speakers :)
By Friday night, Grace had gone home, but JM had one more night in LA.  We all went bowling, and we knew we couldn't let Tucker stay with anyone on JM's last night in town. So we took him galactic bowling, way past his bedtime, complete with fog, strobe lights, and rap music videos.  He loved it!!!! It was so hilarious. That night JM asked to sleep at our house, so he and Chris stayed up late playing video games while I put Tucker to sleep.  Tucker is way too smart for this, he knew he was getting the bad end of the deal. So I tried the only thing that might work-my singing.  For some reason, he loves it. So that worked, I sang "Me and my best Teddy Bear," and "Twinkle Twinkle Little Star."  Tucker started ABA a few weeks ago, and I read an ABA parenting book. One of the suggestions is to sing a familiar song, then to stop at a favorite part and see if the child will pick up where you leave off. The book warned that this is a very high-level skill for kids with language delays, so don't expect it to work right away.  Well, just for the heck of it, I sang "ABCD" and paused.......and Tucker answered "eee-ep-gee", so I said "HIJK" and he said "elemenopee" I sang "QRS" and he sang "T-ooh-bee" I sang "WX" and he sang "Y in Zeeee"

So I was freaking out, I mean like hyperventilating, poor Tucker probably was so scared. So I tried again, and he sang it again. Then I tried Twinkle, Twinkle, Little Star, Me and My Best Teddy, and then to really be silly, I tested his "Our Father" and "Guardian Angel" prayers that I pray with him at night. He knew every other word. I just sat there in shock, then I called Chris in and made him listen to his ABCs again.  Chris was freaking out, too, and so has anyone else who has seen it.  It is amazing to see all of the knowledge that has been stored up, and he is just now deciding to share it with us.

Now keep in mind that it is very hard to understand him, so he still gets frustrated when we don't understand him. But he now spontaneously comes up to me to talk, which is a huge deal.  So now JM has been gone for about two weeks, and Tucker was not upset during the first few days. I thought maybe he had forgot about him. But then last Friday, Tucker came up to me and said, "John Micah comin' back?" I told him, "sure in a long long time. One day we will get in the car and go see him in Kentucky." As a rule, that was way too long of a sentence for him to process. I should have just said "no." Later that night, I was re-telling the story to Chris, and Tucker brought me his dump truck and teddy bear, and said "get up!" I got off the couch, and he said "ride the car. go to ke-tucky." Poor baby, he misses his cousins! He keeps looking for him at mom's house, like he expects him to be hiding behind the couch or something.

The one kind of scary thing that happened is that Tucker had an outer ear infection last week after swimming in the lake all weekend. When we took him to the after hours doctor, they weighed him, and we realized he is only 34 pounds.   :( He was 39 pounds at one point, and when we re-weighed him at home, the scale read 35 pounds. The last thing we need is for him to lose weight, so hopefully at his well-check at the pediatrician's or at his mito doctors' appointments next month, someone will have some advice. He is already getting a ton of calories, Chris's suggestion is to add more feedings at night. I think I may even ask if we can run feeds continuously overnight to boost his calorie intake. We'll see what the doctors think.

Family Time

Last Monday night our family headed to the beach. And not just our family of three....our much larger Lavigne family.  There were 8 men, 7 women, and 8 kids in 4 different condos.  It was a 4 hour drive, and I had to work Monday, so the 3 of us didn't leave until 6pm. Within 5 minutes, we were in traffic.

Tucker said "mama," I said "what?" He said, "I like to go to da beach."  I cracked up laughing, he is so cute.  Especially because he really does not like the beach.  He likes dry sand, and he likes the waves, but he does not like the part in between where the ocean meets the sand and all of the sand sticks to him. He gets very mad and tries to clean himself off, which of course results in more sand and more mess.  I think he was at the beach for a total of ten minutes in 4 days....and I was there even less! (At least I avoided the awful sunburns that some people got...ouch!)

Tucker loves traveling, loves hotels, and loves the swimming pool, so we all still had a good time.  It was very hard to keep him out of the hot tub, though, which he thought was a perfect Tucker-sized pool.  It was super hot, though, and I didn't want to boil my child, so he just had to stay in the big pool or stay in time out.  He spent a fair amount of his days in time out....

Our family from Kentucky came down to the beach with us, and we hadn't seen them since Meagan and Chris's wedding two years ago.  Tucker got attached to John Michael right away! And I mean attached....he has a buzz hair cut, which Tucker loves to rub, so I had to pry Tucker off of his head after the first day. 

We bought groceries and cooked most of our meals, Chris and Maw Maw cooked breakfast every morning; and we all took turns cooking lunch and dinner.  It was so nice, and on the last night, when we waited for aobut 40 minutes to get in a local restaurant, I was happy that we made that choice.  Tucker was very good that night at the seafood place, he licked about 95 crackers and then a bag full of fritos, but I don't think he would have done so well if we ate out every meal. That would have really tested his patience!

So we didn't spend much time at the beach, and just spent about an hour a day at the pool, so what did we do all week?? Sleep!! It was great:) The first night we got in around 11pm and didn't get to sleep until after midnight. After that, we slept about 10-11 hours a night and then also took 2 hour naps each afternoon.  We also ate alot....really too much! My BIL Chris cooked a delicious pastalaya one night, and we all ate at least two full plates. 

We also did a lot of visiting and just hanging out, especially with our Kentucky cousins.

We also fought Tucker to stay out of Uncle John's room....just like at home! Well, at least he is consistent.

My grandparents had one bedroom, my Uncle John had another room, Meagan, Chris, and Aliyah had the living room, and we got the big king bedroom. That was very very nice of everyone to give us that room considering we didn't pay anything for the condo.  But when Tucker needed a time out or a quiet place to zone out, it definitely came in handy.  Every morning, Tucker woke up before us, just like at home. He would cry to get out of the room, go around to each room to see if everyone was awake....then once they were awake, he would go back to sleep!  He is terrible about that.

We all went on a dolphin tour one morning, where we filled up a boat and they took us out in the bay to see dolphins. It was neat, and Tucker got to "drive" the boat. He was happy until it was the other kids' turn to drive the boat, then we fought him the whole time to keep him sitting with us. By the end of it, the 6 of us (Townsends and Champagnes) were tired and ready to go to the condo.  Everyone else stayed out for lunch, but we left.  So we drove the 20 minutes to the condo only to realize we had locked ourselves out...so we took the drive back to get Paw Paw's key, with Tucker screaming "go to da hotel!" the whole time. 

That night Chris and I took Tucker to a playground we saw near the dolphin cruises. It was huge and had tons of slides and swings. He had a lot of fun playing until it was dark and we all went back to the condo...the best part was that no one was there, so Tucker did not have to wait or take turns, just play with his Mommy and Daddy, which he loved.  On Thursday morning we tried to go parasailing, but it was too windy.  We spent most of that day back at the hotel cooking and watching TV.

We ate seafood our last night in town, and we all enjoyed talking and eating.  We all packed up Thursday night, then had a big breakfast Friday morning and headed home.  John Michael and Grace rode home with us, as they are spending the whole week with my grandparents. I guess they thought riding with us would be fun :) I hope we lived up to their expectations!  When we got home, my grandparents came over and picked up the kids. Tucker went around our house asking "Zhon Mikah? Zhon Mikah?" wondering where John Michael was, poor baby! So after a few hours we brought him over there to see the kids, and he sat outside with them on the swing, he was so happy.

On Saturday we took the kids to Bass Pro shop, and they seemed to really like that, but other than that I think they have had a calm week. Chris and I went back to work yesterday, and that was no fun at all.  Vacation had to end, though, I am already looking forward to the next one....maybe with just Chris and me, so that I can spend more than 5 minutes on the beach ;)

Very Good News

Since my last post, it seems that things are really turning around concering Tucker's ABA prospects.

When we are thrown a curveball, we always deal with it; however, it is still hard. So that curveball of not being able to start ABA right on schedule, and the fear of not being able to start at all was tough.  I want to share this story because it is just one example of the many instances like this since Tucker was born.

By Wednesday morning, I was very concerned about the therapy situation. The ABA consultant had advertised via her usual places to find therapists, and no one had responded.  She was surprised by it, and assured me it would be okay; I was not so sure. 

I spoke with my mom on Wednesday morning, and I just felt overwhelmed by the idea of advertising for therapists, interviewing them, hiring them, training them, and then wondering if they would work out. I want results now! Haha, typical Leigh fashion.

She basically told me that I should feel overwhelmed, that anyone would, that no one person could handle everything I had just described to her.  She then said that I was never meant to handle any of this alone, that God was right there waiting for me to hand it over to Him. She asked if I had prayed about this particular problem, the problem of finding therapists. I said "well of course not, it's just finding therapists, why would God care about that?......" then I stopped and realized I was doing what I always do.  Agonizing over a problem, wondering why I couldn't solve it immediately on my own, when really I needed to pray about it. 

No matter how well I advertised, how great of an ad I put out, how much I "talked up" Tucker or how badly we all feel that he needs this therapy, I am not in control of this at all.  I needed to ask for God's guidance; maybe the ABA therapy just wasn't going to work out this summer, maybe it was....but I had to give it up and let it be out of my hands.

Well that was on Wednesday....on Tuesday, I had accompanied by summer students to two seminars about publishing scientific papers.  The content really had nothing to do with my job, but I attended to make sure that my students showed up and paid attention ;)  The speakers were very engaging, and one speaker talked about how social media has changed our lives in so many ways, and she talked about how using that can help scientists communicate to the public and also help them keep up with the latest research.  She showed a timeline of social media, and it was crazy to see how recently facebook, twitter, etc. became widespread and how quickly it has transformed everything we do. She explained how we all trust people in our "social network" and that reading things on facebook means much more to us than reading something in the newspaper because we trust the source.

So on Wednesday, the seminars were over and I was back in my office wondering about ABA therapy amidst my busy day.  I took a moment and really prayed about the situation, asking that God would reveal his will to me....whether that matched up with my will or not. 

A short while later, I decided to post about our search for ABA therapists on facebook.....if social media transformed science, it could help me find a therapist, right?? ;)  I got 4 messages in my inbox within two hours, and by Wednesday evening, I had 6 resume's emailed to me.  And they were good resume's....way better than what I was expecting to apply.  That same day, Amy (the consultant) emailed me a resume' she had received, which looked fantastic, and then another student contacted Amy about wanting to work with a child in the Ascension area.  Amy is going to look through the resume's, get people to come over and meet Tucker, and then get started the week after next (we are going to the beach this week).  So I am just floored by that response.

We have been crazy busy (when are we not??) and so Chris and I have really been slacking on our home ABA with him during the evenings.  Amy came in for two hours Friday afternoon to work with Tucker, and I was pretty scared about what she would find with his behavior.  I was getting my hair and nails done for my best friend's wedding (I got to be the Matron of Honor, how cool is that??!!) so mom and Mrs. Mia had Tucker all day. Mom was there for the ABA therapy, and Amy was super impressed.  We have been counting 10-15 "mands" or requests from him per hour, which is horrible.  Amy counted 92 mands in a 90 minute period, which averages about 60 per hour....the goal is 100 per hour, and we are at the very beginning.  I said "well there is proof that the problem is us!" haha, because he certainly doesn't mand 60 times per hour with us.

So I am very happy about that, and once again, we were shown that ABA is really what he needs to be working on right now; so we feel so blessed that we will be able to make that happen sooner rather than later.

As I mentioned, my best friend Jessica got married Friday. I forgot my camera at work :( So I don't have a single picture. We have known eachother since we were both 1 year old, and we have the cutest picture of us hugging at that age.  (on a side note: Our families are pretty interwoven; her younger brother Michael is 12, and at the reception his friend asked him if he's ready to be an uncle. He said "well I am, I'm Tucker's uncle." His friend looked at him like he was crazy! He explained that we are all like sisters to him, so he is kind of an uncle already.)  Jessica met a great guy a few years ago, and they fell in love and got married last night.  We had a sleepover Thursday night, then hair and nails on Friday, then of course the wedding and reception. It was all beautiful, and seeing Jessica and Mitch become husband and wife was truly a sign to all who know them, that God has great plans for those who follow Him. I could go on and on about them, but I'll spare you all that;)

We leave for the beach this evening, my grandparents and uncle reserved a 3 bedroom condo and the 3 of us are tagging along. Tucker really loves my Uncle John ("Unca Zhon") so I am hoping Tucker does not bother him the whole time! I am also hoping that we spend more time at the beach and/or pool than the hotel, as we got the suitcases out yesterday and Tucker was SO excited to be going to a hotel again......the beach, not so much!  We already bought a few supplies, one of them being a huge box of chips to go with sandwiches for the week. Tucker has been carrying it around like a suitcase, he doesn't want to forget to pack it!  I have told him over and over that he is sharing those chips, because everyone will want some, so we'll see how that goes.

Amidst all of the wedding celebration and good news this week, I read that another family is going through a very difficult time.  After watching their little girl fight corageously for almost 5 years, Eithene's parents have made the very difficult decision to enter Eithene into hospice. I don't know all of the specifics of this, but I have followed her mom's blog for a long time, and she has offered me hope and strength many times.  Eithene has several complex conditions, and her parents have made tough decisions for her all of her life, while continuing to make her life as good and normal as possible while she spent most of it inside the hospital. You can read about her here. Eithene  Please pray for this family as they so lovingly give their little girl a rest from her lifelong battles.   

So Frustrated

I am pretty aggravated right now....we have been planning to have Tucker in ABA 10-20 hours per week this summer, to work on lots of things, like waiting, listening, and talking.

It took us a few months to find a consultant that we like, and then it took about 5 weeks for her to do the evaulation. She did that in three phases, one at school, one with Mrs. Joy at therapy, and one at home with Chris, Tucker, and me.  She is the consultant, but the people coming in for the day to day work at home are therapists that follow Amy's directions and take lots of data. Amy had two therapists lined up to work with Tucker, they were already well-trained, so they could start as soon as Tucker was out of school for the summer.  We were so excited, and thought it was too good to be true....well it turns out that it was.

About two weeks ago, we found out that one of the therapists didn't want to work here. She never met us, Amy thinks she just didn't have the availability. These therapists are in high demand, and they make good money, so they can really choose when they want to work and with whom.  So we thought about it, and decided that having one therapist would be good enough, and we would just work with Tucker at night and on weekends.  Well, last week, we got an email, out of the blue, that the other therapist had no availability.... (we have already discussed training family members and hiring them, the data shows that it doesn't work nearly as well...the therapists really need to be all-business and it doesn't work out well when the child already knows them as aunts or friends)

So here we are, two weeks into summer, with no one to work with Tucker.  It may not seem like a big deal, but Tucker has been in many therapies and we are all on board that ABA is our best hope for him to reach his full potential.  It was always out of reach because of the cost, but now we are able to afford some services, and Tucker is about to be on my new LSU health insurance which will cover ABA. I always thought that once we had the funds for ABA, it would be so easy to start a program.  Now I am realizing that we will have to hire brand-new therapists, put them through 6-8 weeks of training with Amy, and then hope that they are good at their jobs and stay on for at least a year....and by then school will be starting, and after school Tucker is really too tired for any ABA therapy....

Facing such hurdles to starting an ABA program due to availability issues just stinks! We had the same issue with finding reliable childcare for the summer. There is one local camp that accepts special needs kids, but we'd have to provide an all-day aide for Tucker as well as paying for the camp.  Plus he needs to be 6 years old for that camp, so maybe next year.  We just want somewhere that is structured, that has therapy, activities, and other kids, but is also safe for Tucker.  Well that literally does not exist in the BR area.  Not that it exists anywhere else, as I have never lived anywhere else.

Right now we are at an "okay" place with Tucker's summer, as he started 3 half-days per week of preschool today, and he was SO excited to go in today. His childcare aide comes in all day on Tuesdays and Thursdays, and drives him to feeding therapy and private swim lessons.  He is doing GREAT with the swim lessons, he goes three days a week-Tues, Thurs, and Fri. Chris took him on Friday and took lots of videos, Tucker is really and truly swimming. Chris and I find that so amazing, as we thought the first two-week session would be a power struggle between him and the swim teacher! There was no telling what odd obsession Tucker could have developed at the pool, but he gets in and really swims. He can swim about 3 feet underwater, which is about 4 strokes maybe.  My goal is for him to be able to keep afloat if he would accidentally fall into some water somewhere. Last summer he had no ability to sense danger, so he would try to walk into a pool at the deep end with no fear.  Now he looks for the steps and likes to be able to touch the bottom of the pool, but we want to be safe and know that he can swim no matter what would happen. We are going back to the beach next week for a four-day vacation, and I hope this time we spend all of our days in the water :) Not in the hotel! ;)

All in all, we are finding that Tucker really needs all-day stimulation to keep him from getting bored, and we were hoping ABA would be that stimulation.  Please pray that our situation all works out, because now that Tucker is 5 years old, we are even more insistent that we help him to be independent and give him the skills to deal with daily life. While it is so tempting to "take a break" from pushing Tucker, I want to look back years from now and know that we did everything we could to help Tucker.  And we all believe that ABA is a big part of that.