Big Blessings=Lots of Work

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

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

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

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


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

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

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

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

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

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

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

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

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

Blessing Two: Check out Tucker's Picture :)

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


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

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

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

General Update

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


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

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

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

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

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

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

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

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

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

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

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

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

"It's Time to Eat!"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EEG in Houston

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Christmas 2011

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

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

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

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

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

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

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

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

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 ;) 

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 :)

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.