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!
Showing posts with label fun. Show all posts
Showing posts with label fun. Show all posts
Thursday, January 12, 2012
Monday, January 9, 2012
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!).
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!).
Monday, December 12, 2011
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.
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.
Here is the note that Addi and Aliyah wrote once they were done baking and had gone outside to play.
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 ;)
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.
Wednesday, December 7, 2011
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.
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.
Wednesday, November 9, 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 ;)
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 ;)
Thursday, September 15, 2011
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 :)
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 :)
Monday, July 11, 2011
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.
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.
Tuesday, June 21, 2011
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 ;)
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 ;)
Thursday, June 2, 2011
Summer Update
Tucker's birthday party went pretty well. He was super excited to go to Jump N Jive, and he was even more excited when he saw his friends there.
By about half an hour into the party, the Jive room was packed full of people. I meant to bring extra chairs, but we forgot. There are several benches along the wall, but he had a ton of adults, and not enough seating. Tucker jumped right into the inflatable Gladiator-type jumper, where one person is supposed to stand in the middle while other people knock you off of the pedestal with big foam mallets. Tucker loves craziness, so he had a blast with Gina, Dylan, and Tyler jumping all around. The kids all took turns going down the big inflatable slide, even Kinley! Chris has now introduced her to the pool and the inflatable slide, I think he is going to either be her very fun uncle, or the scary uncle, depending on her personality :)
For the price of the party, we got private use of the room for 1 hour and a half, then 30 minutes in the party room for cake and pizza. So after one hour, the party coaches blew up the inflatable party chair and tried to get Tucker to open his gifts. Tucker's party was firetruck themed, but I had told everyone not to get him any firetrucks.....he already has about 12! His friend Wes was mad at his mom Lauren when she got Tucker an aquadoodle instead of a firetruck, he said firetrucks are Tucker's favorite. Well, Tucker's friend Daniel really wanted to get Tucker a firetruck, so his mom let him ;) That was one of the first gifts Tucker opened, and that was it! He was ready to jump some more. I was fine with that, as we had 30 minutes left that we paid for to jump. So we let all the kids go back to jumping, and packed the gifts into the car.
When it was time to go to the party room, Tucker was pretty upset and it took us a while to convince him to sit with Chris in the big chair and lick the pizza. We had pizza and two sandwich trays, and after all of the jumping, all of the kids and adults were pretty hungry.
The party room was packed with all of our friends and family, and everyone was talking and eating. When it was time to sing Happy Birthday, the party coach turned the lights off. Tucker was in shock, I think, but when it was time to blow out his big "5" candle, he knew exactly what to do and blew it right out. I was so proud of him, as we worked all year on blowing whistles as part of OT.
My parents got Tucker a new tricycle (Chris rolled over the old one with his truck!), and it has a bar on the back that we can push and steer. Tucker rode out of the party on his bike, it was so cute.
Once we got home, Tucker was all about the presents! He got a lot of stuff, and he was so excited. He got a cowboy hat and Elmo Country song movie from Molli & Addi, and a Mickey and Yogi Bear movie and a bag of Cheetos from Sarah & Brad. He got a set of luggage from Justin & Jackie, which must sound crazy for a 5 year old, but he really needs it! We have several overnight trips planned for the summer, and he needs his own suitcases to put things in. He got a big water play table from the Christian family, which he will love once we put it together. Last night he was trying to pour water out of his cup into his bowl....not allowed inside....but perfectly acceptable at the water table. He of course still loves the firetruck, and Daniel & Julia also got him a bear shaped pillow with a sleeping bag attached. My parents actually got him another one, so he will have an extra. My mom also recorded herself reading a storybook to Tucker. It is a Hallmark book, I think, and it is of course about two bears. When Tucker opened it, I told him it was a Nana Bear and a Tucker Bear. So now he "reads" it by himself by turning the pages and pointing out Nana Bear and Tucker Bear on every page, it is so cute! My grandparents gave me money to pick out a gift for Tucker, and I chose a pair of training skates. Everyone told me that was crazy, that he was going to end up in the Emergency Room....well, he loves them! He called them trucks at first, now he asks for his skates. And yes, he falls a lot, but he falls a lot walking, too. We have found that he pays more attention to his balance when he is on the skates, so maybe they will help him with that.
I had to work on Saturday :( As I will have to several times this summer and fall, as this is the busy time for my job. On Sunday, we all went to eat Hibachi for Mrs. Mia's and Mr. Ricky's birthdays, which are right behind Tucker's. Since Tucker has been born, the other May and June birthdays have kind of fell on the back burner, so it was nice to celebrate. Anyways, it was a very nice lunch, Tucker behaved very well and licked all of his Fritos. I gave him the menu and asked him to look at the pictures to choose something, he looked at it and said "hamburger." Haha, not quite. He licked the Edamame, but was not impressed.
Tucker started a two-week session of swimming lessons this week. It is at the therapy pool, with a one-on-one special needs swimming instructor. He is doing very well, they mainly work on putting his whole face underwater. Chris is taking him today, so we'll see how that goes. Chris has been encouraging Tucker to put his face underwater in the bathtub, and he was SOOO proud when Tucker did it. Tucker also got a baseball tee and bat from my co-worker and her family at the party, so Chris is having fun trying to get Tucker to concentrate enough to hit the ball, not the tee!
So far the summer is way too hot. We have been in record highs this week, at 100 degrees before considering the heat index. So Tucker has been skating and playing baseball inside the house lately.
As far as therapy goes, Tucker had about a week off in between school and therapy, and he has been pretty bored. He starts three half-days preschool next week, and he will also starte OT feeding therapy twice a week. The ABA therapists we thought we had hired for the summer have fallen through, so we are now scraping by with the two or so hours of ABA at night that Chris and I try to implement after working all day :/ It is going much better that we thought, which gives us hope that once we find some therapists Tucker will make huge progress. The BCBA consultant who designs and runs Tucker's program will come over next Friday (while I will be getting ready for Jessica's wedding), and hopefully give us an update soon on finding therapists. The goal is to have 15-20 hours of ABA per week; right now we are at about zero!
Please pray that we get Tucker's ABA program up and running soon. We are working on waiting. Tucker went from waiting 3 seconds to now being able to wait for 30 seconds....we need to be up to 20 minutes before we can start potty training, so wish us luck.
By about half an hour into the party, the Jive room was packed full of people. I meant to bring extra chairs, but we forgot. There are several benches along the wall, but he had a ton of adults, and not enough seating. Tucker jumped right into the inflatable Gladiator-type jumper, where one person is supposed to stand in the middle while other people knock you off of the pedestal with big foam mallets. Tucker loves craziness, so he had a blast with Gina, Dylan, and Tyler jumping all around. The kids all took turns going down the big inflatable slide, even Kinley! Chris has now introduced her to the pool and the inflatable slide, I think he is going to either be her very fun uncle, or the scary uncle, depending on her personality :)
For the price of the party, we got private use of the room for 1 hour and a half, then 30 minutes in the party room for cake and pizza. So after one hour, the party coaches blew up the inflatable party chair and tried to get Tucker to open his gifts. Tucker's party was firetruck themed, but I had told everyone not to get him any firetrucks.....he already has about 12! His friend Wes was mad at his mom Lauren when she got Tucker an aquadoodle instead of a firetruck, he said firetrucks are Tucker's favorite. Well, Tucker's friend Daniel really wanted to get Tucker a firetruck, so his mom let him ;) That was one of the first gifts Tucker opened, and that was it! He was ready to jump some more. I was fine with that, as we had 30 minutes left that we paid for to jump. So we let all the kids go back to jumping, and packed the gifts into the car.
When it was time to go to the party room, Tucker was pretty upset and it took us a while to convince him to sit with Chris in the big chair and lick the pizza. We had pizza and two sandwich trays, and after all of the jumping, all of the kids and adults were pretty hungry.
The party room was packed with all of our friends and family, and everyone was talking and eating. When it was time to sing Happy Birthday, the party coach turned the lights off. Tucker was in shock, I think, but when it was time to blow out his big "5" candle, he knew exactly what to do and blew it right out. I was so proud of him, as we worked all year on blowing whistles as part of OT.
My parents got Tucker a new tricycle (Chris rolled over the old one with his truck!), and it has a bar on the back that we can push and steer. Tucker rode out of the party on his bike, it was so cute.
Once we got home, Tucker was all about the presents! He got a lot of stuff, and he was so excited. He got a cowboy hat and Elmo Country song movie from Molli & Addi, and a Mickey and Yogi Bear movie and a bag of Cheetos from Sarah & Brad. He got a set of luggage from Justin & Jackie, which must sound crazy for a 5 year old, but he really needs it! We have several overnight trips planned for the summer, and he needs his own suitcases to put things in. He got a big water play table from the Christian family, which he will love once we put it together. Last night he was trying to pour water out of his cup into his bowl....not allowed inside....but perfectly acceptable at the water table. He of course still loves the firetruck, and Daniel & Julia also got him a bear shaped pillow with a sleeping bag attached. My parents actually got him another one, so he will have an extra. My mom also recorded herself reading a storybook to Tucker. It is a Hallmark book, I think, and it is of course about two bears. When Tucker opened it, I told him it was a Nana Bear and a Tucker Bear. So now he "reads" it by himself by turning the pages and pointing out Nana Bear and Tucker Bear on every page, it is so cute! My grandparents gave me money to pick out a gift for Tucker, and I chose a pair of training skates. Everyone told me that was crazy, that he was going to end up in the Emergency Room....well, he loves them! He called them trucks at first, now he asks for his skates. And yes, he falls a lot, but he falls a lot walking, too. We have found that he pays more attention to his balance when he is on the skates, so maybe they will help him with that.
I had to work on Saturday :( As I will have to several times this summer and fall, as this is the busy time for my job. On Sunday, we all went to eat Hibachi for Mrs. Mia's and Mr. Ricky's birthdays, which are right behind Tucker's. Since Tucker has been born, the other May and June birthdays have kind of fell on the back burner, so it was nice to celebrate. Anyways, it was a very nice lunch, Tucker behaved very well and licked all of his Fritos. I gave him the menu and asked him to look at the pictures to choose something, he looked at it and said "hamburger." Haha, not quite. He licked the Edamame, but was not impressed.
Tucker started a two-week session of swimming lessons this week. It is at the therapy pool, with a one-on-one special needs swimming instructor. He is doing very well, they mainly work on putting his whole face underwater. Chris is taking him today, so we'll see how that goes. Chris has been encouraging Tucker to put his face underwater in the bathtub, and he was SOOO proud when Tucker did it. Tucker also got a baseball tee and bat from my co-worker and her family at the party, so Chris is having fun trying to get Tucker to concentrate enough to hit the ball, not the tee!
So far the summer is way too hot. We have been in record highs this week, at 100 degrees before considering the heat index. So Tucker has been skating and playing baseball inside the house lately.
As far as therapy goes, Tucker had about a week off in between school and therapy, and he has been pretty bored. He starts three half-days preschool next week, and he will also starte OT feeding therapy twice a week. The ABA therapists we thought we had hired for the summer have fallen through, so we are now scraping by with the two or so hours of ABA at night that Chris and I try to implement after working all day :/ It is going much better that we thought, which gives us hope that once we find some therapists Tucker will make huge progress. The BCBA consultant who designs and runs Tucker's program will come over next Friday (while I will be getting ready for Jessica's wedding), and hopefully give us an update soon on finding therapists. The goal is to have 15-20 hours of ABA per week; right now we are at about zero!
Please pray that we get Tucker's ABA program up and running soon. We are working on waiting. Tucker went from waiting 3 seconds to now being able to wait for 30 seconds....we need to be up to 20 minutes before we can start potty training, so wish us luck.
Friday, May 27, 2011
Five Years Old
Our Litle Fighting Tiger turned five years old yesterday.
I will post a picture blog soon with his birthdays, from day one to this year's, but I need to get all of the pics together first.
Tucker's actual birthday is such a blur to me, I was pretty much unconscious for most of it, due to the pre-eclampsia and the meds to fight the pre-eclampsia.
Two days later, I felt well enough to actually ask to see Tucker, and to roll over in my wheelchair to the NICU to see him. It was scary and very surreal. It felt like an out of body experience, like there was no emotion attached because it didn't seem possible to really be there.
That night I promised Tucker and God that if Tucker fought hard to stay with us, I would be the best mommy any little boy could ever want or need. I had no idea what was ahead for him or us....I just knew that any baby who had such a crappy first few days of life deserved the best he could get from now on.
And I think through everything, Chris and I have kept our end of that deal :)
So for the last few weeks, I have been pretty emotional. We have had a lot going on, with Chris's brother getting married, and my best friend Jessica getting married in a few weeks. The idea that Tucker is able to be there for all of this makes me so happy.
He finished his first year of preschool, and he was not even the kid that missed the most days!
We have started his ABA program, and just in the first few weeks have seen a huge difference. Everyone in Chris's and my immediate families has been on board, and the ABA therapist is very impressed that everyone is so supportive. It will all get harder to stick to our guns as we expect more and more out of Tucker, but as time goes on, we hope to be able to do more and more with him, so it will all be worth the work and the hard transitions Tucker has to go through.
We are (as usual!) celebrating Tucker's birthday in a BIG way. We rented out the local inflatable place for a party; Tucker has been there twice and loves it :) About 15 kids and 45 adults are coming to Jump for 1 hour and a half, and then to enjoy pizza, sandwiches, and an ice cream cake. We will have chips for Tucker, of course.
It is a firetruck theme, so we sent out firetruck invites, he has a firetruck shirt, and we have firetruck shaped sugar cookies for party favors (and no, I didn't make them, I am not quite that talented). He is also supposed to have a firetruck cake, but we aren't sure how that will work out! (the firetruck I sent to Baskin Robbins is too heavy to sit on the cake....) It is still hard to tell if he likes presents or not, his face lights up at the word "presents" but I don't know that he will want to quit jumping to sit still and open stuff. So we'll see.
For his actual birthday, Chris and I both had to work. So I had the idea (which Gina says I stole from her!) to take Tucker to Build a Bear at the mall. Chris and Tucker rode in the truck and met me at the mall after work, and Tucker was so excited. He kept saying "bear store", because Chris told him that is where he was going to pick out his present. I had never been to the BAB store, but it is amazing. There are tons of animals to pick from, and you stuff it yourself, and then buy whatever accessories it needs, from clothes and hats, to cars and strollers!
Tucker went straight to the Camouflage bear, and never looked back! I wanted him to make sure he picked the right one, so I took my time showing him every single one, but he clung to the empty Camo bear for dear life:) I think Chris had a tear in his eye, lol, he was so proud!
So then, since we knew Tucker wouldn't be asking for his bear to have any clothes or accessories, we didn't mind spending a little extra so that his bear could have a customized sound. There is a machine with about 20 sounds, you press the buttons to preview the sounds, then you pick which one you want. So Tucker hit the Star Wars button, you know that theme song? It's loud, and you would all recognize it if you heard it. Tucker really has no interest in Star Wars, but Chris loves all of the movies. Tucker happened to be wearing his Yoda shirt that says "Judge me by my Size, Do you?" which of course Chris picked out for him.
So when I told the BAB consultant that Tucker didn't even like Star Wars, I don't think she believed me as he had on a Yoda shirt! I showed Tucker all of the buttons, some roared, some played "Happy Birthday" and some said "I Love you," but again, Tucker stuck with his first choice. He pressed that button about 3 more times, then we were sold.
Tucker picked out a heart for his bear, so that it would have a heartbeat when you hug the bear. The next part was to stuff it and sew it up. Tucker was NOT happy when the lady took his bear and shoved it on the metal filler part. It really did look like the poor bear was being violated, as the metal rod was shoved in his back to fill him up with fluff. Tucker helped push the pedal down so that the bear would quickly be full, then he watched as she sewed it up. He was SO happy when she gave it back and he got to hold it :)
Tucker is now the proud owner of a Camouflage bear that plays the Star Wars theme song and has a heartbeat. He even has the birth certificate to prove it, which is a little odd if you ask me ;)
A trip to that mall is not complete without two rides on the carousel. We knew that the carousel closes early on weeknights, so Chris ran over to see if it was still on. He came back saying it was off, so we had to go home. I told him it was way too early, since it was summer time, and I took a turn going check. Sure enough, the carousel was going, so I called Chris to bring Tucker over. His face lit up when he saw it! He hasn't been to the mall lately as his behavior was rough the last time we had to take him off of the carousel a few months ago.
Here is a picture of Tucker, with his new bear, riding the carousel. Also, his Daddy was right next to him taking the picture, so this child was on cloud nine :-) And of course I was standing on the sidelines crying my eyes out.
He was very compliant when his second turn was over and it was time to go home. We think that his 5th birthday was fantastic, and we haven't even had the party yet. Thanks for checking in on us and for all the birthday wishes from everyone for Tucker.
I will post a picture blog soon with his birthdays, from day one to this year's, but I need to get all of the pics together first.
Tucker's actual birthday is such a blur to me, I was pretty much unconscious for most of it, due to the pre-eclampsia and the meds to fight the pre-eclampsia.
Two days later, I felt well enough to actually ask to see Tucker, and to roll over in my wheelchair to the NICU to see him. It was scary and very surreal. It felt like an out of body experience, like there was no emotion attached because it didn't seem possible to really be there.
That night I promised Tucker and God that if Tucker fought hard to stay with us, I would be the best mommy any little boy could ever want or need. I had no idea what was ahead for him or us....I just knew that any baby who had such a crappy first few days of life deserved the best he could get from now on.
And I think through everything, Chris and I have kept our end of that deal :)
So for the last few weeks, I have been pretty emotional. We have had a lot going on, with Chris's brother getting married, and my best friend Jessica getting married in a few weeks. The idea that Tucker is able to be there for all of this makes me so happy.
He finished his first year of preschool, and he was not even the kid that missed the most days!
We have started his ABA program, and just in the first few weeks have seen a huge difference. Everyone in Chris's and my immediate families has been on board, and the ABA therapist is very impressed that everyone is so supportive. It will all get harder to stick to our guns as we expect more and more out of Tucker, but as time goes on, we hope to be able to do more and more with him, so it will all be worth the work and the hard transitions Tucker has to go through.
We are (as usual!) celebrating Tucker's birthday in a BIG way. We rented out the local inflatable place for a party; Tucker has been there twice and loves it :) About 15 kids and 45 adults are coming to Jump for 1 hour and a half, and then to enjoy pizza, sandwiches, and an ice cream cake. We will have chips for Tucker, of course.
It is a firetruck theme, so we sent out firetruck invites, he has a firetruck shirt, and we have firetruck shaped sugar cookies for party favors (and no, I didn't make them, I am not quite that talented). He is also supposed to have a firetruck cake, but we aren't sure how that will work out! (the firetruck I sent to Baskin Robbins is too heavy to sit on the cake....) It is still hard to tell if he likes presents or not, his face lights up at the word "presents" but I don't know that he will want to quit jumping to sit still and open stuff. So we'll see.
For his actual birthday, Chris and I both had to work. So I had the idea (which Gina says I stole from her!) to take Tucker to Build a Bear at the mall. Chris and Tucker rode in the truck and met me at the mall after work, and Tucker was so excited. He kept saying "bear store", because Chris told him that is where he was going to pick out his present. I had never been to the BAB store, but it is amazing. There are tons of animals to pick from, and you stuff it yourself, and then buy whatever accessories it needs, from clothes and hats, to cars and strollers!
Tucker went straight to the Camouflage bear, and never looked back! I wanted him to make sure he picked the right one, so I took my time showing him every single one, but he clung to the empty Camo bear for dear life:) I think Chris had a tear in his eye, lol, he was so proud!
So then, since we knew Tucker wouldn't be asking for his bear to have any clothes or accessories, we didn't mind spending a little extra so that his bear could have a customized sound. There is a machine with about 20 sounds, you press the buttons to preview the sounds, then you pick which one you want. So Tucker hit the Star Wars button, you know that theme song? It's loud, and you would all recognize it if you heard it. Tucker really has no interest in Star Wars, but Chris loves all of the movies. Tucker happened to be wearing his Yoda shirt that says "Judge me by my Size, Do you?" which of course Chris picked out for him.
So when I told the BAB consultant that Tucker didn't even like Star Wars, I don't think she believed me as he had on a Yoda shirt! I showed Tucker all of the buttons, some roared, some played "Happy Birthday" and some said "I Love you," but again, Tucker stuck with his first choice. He pressed that button about 3 more times, then we were sold.
Tucker picked out a heart for his bear, so that it would have a heartbeat when you hug the bear. The next part was to stuff it and sew it up. Tucker was NOT happy when the lady took his bear and shoved it on the metal filler part. It really did look like the poor bear was being violated, as the metal rod was shoved in his back to fill him up with fluff. Tucker helped push the pedal down so that the bear would quickly be full, then he watched as she sewed it up. He was SO happy when she gave it back and he got to hold it :)
Tucker is now the proud owner of a Camouflage bear that plays the Star Wars theme song and has a heartbeat. He even has the birth certificate to prove it, which is a little odd if you ask me ;)
A trip to that mall is not complete without two rides on the carousel. We knew that the carousel closes early on weeknights, so Chris ran over to see if it was still on. He came back saying it was off, so we had to go home. I told him it was way too early, since it was summer time, and I took a turn going check. Sure enough, the carousel was going, so I called Chris to bring Tucker over. His face lit up when he saw it! He hasn't been to the mall lately as his behavior was rough the last time we had to take him off of the carousel a few months ago.
Here is a picture of Tucker, with his new bear, riding the carousel. Also, his Daddy was right next to him taking the picture, so this child was on cloud nine :-) And of course I was standing on the sidelines crying my eyes out.
Monday, May 23, 2011
Wedding Weekend
Well after my last post, I wasn't sure if we'd make it to the beach. After 3 hours of sleep on Thursday night, we woke up at 430am. We packed into Brad's truck pretty quickly, then we were off to Florida. Luckily, we all slept a good bit on the ride and felt much better. Tucker slept most of the ride as well.
After a while, Tucker was shivering, so I made him get out. He was not happy, but a bag of Cheetos made him perk right back up. He ended up with sand all over him, and he cried "clean it up" poor baby. So he and I headed to the pool instead.
Baby Kinley joined us with her parents and Sissy and Pops.
We stayed out for a while, then Tucker requested the hotel. Tucker took a nap, and we got ready for the rehearsal dinner. Jackie's cousin cooked a big pot of spaghetti for all of us, and it was delicious. At the dinner, we saw family members that we hadn't seen in years, and it was so nice to talk to them. I love when Mr. Ricky's brothers get together and all talk about growing up, they have some funny stories!
That night Chris, Sarah, Brad, and I went to Aunt Terri and Uncle Steve's room to catch up while Tucker and Dylan hung out in our condo.
The next morning, we were so tired! But of course Tucker woke up at 6am, so Chris and I tried to sneak him out of the condo before he could wake anyone else up. That didn't work, as Tucker was way too excited that his aunt and uncle were right there when he woke up. We ended up going to the grocery store and coming back with breakfast and lunch food, and Tucker helped Sarah and Brad cook a yummy breakfast....by help, I mean that he cracked the eggs and then stole the carton.
We had a very relaxing morning, as Tucker then fell asleep for several hours. Chris's parents, Alexis, and Kinley came over to visit, and we all watched Kinley smile and play. Once Tucker woke up, I had about an hour to play before I had to leave to get my hair done. So we attempted the pool, but it was even colder than the day before. So after about 5 minutes, we were back up at the hotel, where Tucker was content to spend the rest of the day.
At noon we all left to get our hair done for the wedding, it was fun just being with Jackie, her bridesmaids, and the moms. Mrs. Mia dropped me off at a nail salon on the way back so that I could get a mani/pedi....and at 27 years old, my first mani/pedi ever! I didn't have any time to get my nails done before the trip, and I loved every minute of the manicure and pedicure....I will be doing that more often.
Chris and Mrs. Mia came to pick me up, then it was time for all of us to get ready for the wedding. Chris and I were both in it, so I had my dress, jewelry, and make-up to put on, and Chris tried to remember how to tie his tie. I went over with the bridesmaids to help Jackie get ready, and Dylan stayed to get Tucker ready, and he was on Tucker Duty for the ceremony and reception.
I have to say, it was a beautiful wedding...I knew a beach wedding would be pretty, but my breath was taken away. I met Chris's brother Justin when he was 14 years old, and we have all known Jackie for 5 years now. To see them get married, so in love and happy, was truly a blessing.
The reception was really a blast, everyone definitely enjoyed themselves. The DJ was from England, and wore a kilt. He made us perform all kind of antics, like the chicken dance, hokey pokey, and he somehow got the Groomsmen to dress up as the Village People and do the YMCA.
I can't ever get the pictures to go up and down, but here is one of my favorite pictures of Jackie and Justin at the wedding.
I just can't over emphasize how good Tucker was this weekend. I don't know if his little body was just so happy to be off of the Focalin, or what it was. He listened so well, and he actually rested when he was asleep instead of tossing and turning.
On Sunday afternoon, we cleaned a lot and tried to get ready for summer time and the new workers. I talked to Tucker and told him that school was almost over. I told him that he used to see Mrs. Mary everyday (3 year old teacher), and then that was over. Well now he wasn't going to see Mrs. Amy everyday, but then in August he will go back and have new friends. He thought about that, then in a panicky voice said "See Mrs. Amy!" I told him he would see Mrs. Amy tomorrow, and he said "Owen!" I told him that Owen would be in his class the next day, but then next year Tucker will make all new friends. I don't think he is one bit happy about any of this.....
One of Chris's aunts is related to one of Tucker's classmates, so all year she has been hearing the little girl talk about Tucker and the preschool class. I saw his aunt at the wedding, and she said she feels like she knows all about Tucker from his classmate, I told her she probably knows more about what goes on at school than I do! So I know that Tucker's little friends will miss him, too, and it will be a hard transition for him to get used to not being at school everyday.
We stopped for breakfast in Mississippi, and Tucker got out of the truck saying "go to da beach!" Well, we were only at McDonald's, and he couldn't even get a hamburger since it was breakfast time :) Tucker was so well-behaved for the whole ride, we got to Florida and the beach looked beautiful.
We checked in, unpacked, and all got dressed for the water. It turned out that the ocean was Freezing!! Tucker hated the sand, but I knew he'd like the waves, so after several escape attempts, I told him he was going in the water and he was going to like it! :) Once Chris and Tucker got deeper into the water, and they could jump and float with the waves, Tucker was hooked.
The big pool also had freezing water, I guess it was too early in the year to be swimming. But the kiddie pool had a warmer temperature (my friend Lacy said it is because the kiddie pool is full of pee!), so we spent our time there.
Baby Kinley joined us with her parents and Sissy and Pops.
We stayed out for a while, then Tucker requested the hotel. Tucker took a nap, and we got ready for the rehearsal dinner. Jackie's cousin cooked a big pot of spaghetti for all of us, and it was delicious. At the dinner, we saw family members that we hadn't seen in years, and it was so nice to talk to them. I love when Mr. Ricky's brothers get together and all talk about growing up, they have some funny stories!
That night Chris, Sarah, Brad, and I went to Aunt Terri and Uncle Steve's room to catch up while Tucker and Dylan hung out in our condo.
The next morning, we were so tired! But of course Tucker woke up at 6am, so Chris and I tried to sneak him out of the condo before he could wake anyone else up. That didn't work, as Tucker was way too excited that his aunt and uncle were right there when he woke up. We ended up going to the grocery store and coming back with breakfast and lunch food, and Tucker helped Sarah and Brad cook a yummy breakfast....by help, I mean that he cracked the eggs and then stole the carton.
We had a very relaxing morning, as Tucker then fell asleep for several hours. Chris's parents, Alexis, and Kinley came over to visit, and we all watched Kinley smile and play. Once Tucker woke up, I had about an hour to play before I had to leave to get my hair done. So we attempted the pool, but it was even colder than the day before. So after about 5 minutes, we were back up at the hotel, where Tucker was content to spend the rest of the day.
At noon we all left to get our hair done for the wedding, it was fun just being with Jackie, her bridesmaids, and the moms. Mrs. Mia dropped me off at a nail salon on the way back so that I could get a mani/pedi....and at 27 years old, my first mani/pedi ever! I didn't have any time to get my nails done before the trip, and I loved every minute of the manicure and pedicure....I will be doing that more often.
Chris and Mrs. Mia came to pick me up, then it was time for all of us to get ready for the wedding. Chris and I were both in it, so I had my dress, jewelry, and make-up to put on, and Chris tried to remember how to tie his tie. I went over with the bridesmaids to help Jackie get ready, and Dylan stayed to get Tucker ready, and he was on Tucker Duty for the ceremony and reception.
I have to say, it was a beautiful wedding...I knew a beach wedding would be pretty, but my breath was taken away. I met Chris's brother Justin when he was 14 years old, and we have all known Jackie for 5 years now. To see them get married, so in love and happy, was truly a blessing.
The reception was really a blast, everyone definitely enjoyed themselves. The DJ was from England, and wore a kilt. He made us perform all kind of antics, like the chicken dance, hokey pokey, and he somehow got the Groomsmen to dress up as the Village People and do the YMCA.
I can't ever get the pictures to go up and down, but here is one of my favorite pictures of Jackie and Justin at the wedding.
And here is a picture of the three of us.
I just can't over emphasize how good Tucker was this weekend. I don't know if his little body was just so happy to be off of the Focalin, or what it was. He listened so well, and he actually rested when he was asleep instead of tossing and turning.
On Sunday afternoon, we cleaned a lot and tried to get ready for summer time and the new workers. I talked to Tucker and told him that school was almost over. I told him that he used to see Mrs. Mary everyday (3 year old teacher), and then that was over. Well now he wasn't going to see Mrs. Amy everyday, but then in August he will go back and have new friends. He thought about that, then in a panicky voice said "See Mrs. Amy!" I told him he would see Mrs. Amy tomorrow, and he said "Owen!" I told him that Owen would be in his class the next day, but then next year Tucker will make all new friends. I don't think he is one bit happy about any of this.....
One of Chris's aunts is related to one of Tucker's classmates, so all year she has been hearing the little girl talk about Tucker and the preschool class. I saw his aunt at the wedding, and she said she feels like she knows all about Tucker from his classmate, I told her she probably knows more about what goes on at school than I do! So I know that Tucker's little friends will miss him, too, and it will be a hard transition for him to get used to not being at school everyday.
Saturday, March 26, 2011
Another Week
We have had another busy week. Tucker has been doing a lot, so I need to post some new pictures.
Last Friday Chris got a "new to us" four wheeler. He has been wanting/needing one for years, so now that I work full-time, he was able to buy a great used one from our friends. He has already taken Tucker for many rides on it, and Tucker already know how to put the key in, start it, and turn it off....we are in trouble!
Last Sunday our cousins Morgan and Grace came into town, so we took the four wheeler to mom's so they could all ride. Each kid got turns with Chris, and Morgan and Grace got a turn to drive as well. Tucker had a real fit when it wasn't his turn! But he got over it, and then he was very happy when it was his turn again.
Lately Tucker is scared to death of barking. He has really never been afraid of much, and he really always liked big dogs. He never cared for little dogs, like poodles or yorkies. Sarah has a poodle, Eli, who has been around longer than Tucker. He used to guard Tucker, and lay by him when he was little. Well now Tucker is deathly afraid of his high-pitched barks, he cries when he sees him:( Eli lives at mom's, so this is not good. The other night, Eli barked because a car was coming down the driveway, and Tucker ran into Sarah's closet and refused to come out! So the new rule is that when Tucker's inside, Eli goes outside, and vice versa. Now when we walk in the house, Tucker points at Eli and says "outside!" Poor dog, he gets kicked out of his own house.
Tucker has always loved our big dog, Buck. Well now he is scared of him, too. At night, every once in a while Buck will bark (he is an outside dog). Chris and I hope that Tucker's asleep and can't hear him, but usually, we'll hear the bark, then a few seconds later, hear stomp-stomp-stomp, as Tucker runs from his room to ours! He is so scared, poor kid, even when the dog has stopped barking.
Last Saturday was Jackie's bridal shower. She and Justin are getting married in May; the shower turned out really nice, and many guests showed up. Chris really helped me, he helped me to mix the punch, and he drove with me to the shower to put up the metal bridal arch. Then he left before too many women showed up, haha. On Tuesday mom, Chris, and Mrs. Terri (Tucker's feeding therapist) drove to New Orleans to see the feeding GI doctor. He really didn't have any new advice, and all the tricks he offered to Mrs. Terri were things she had been using for years. Tucker is just a very, very, very hard case.......even with the best therapists and doctors in our area, he just can't/won't eat. :( I think I've blogged enough about how I feel about that......not sure that I was really surprised that the doctor couldn't help too much. Tucker is still on the neurontin for the GI pain with eating, the doctor said it may take a very long time for Tucker to realize that eating no longer hurts.
On Wednesday Tucker's class went to the strawberry patch. Chris and Andrew went with them, and they rode with Lauren. The kids had a blast. But as Chris said, "wow, what a day" lol! Any parent who has been on a field trip knows that they WEAR you out! I have been on 4 or 5 field trips with Tucker so far, and last year the strawberry patch was a little too much for me, so Chris went instead. Tucker really enjoyed the petting zoo, the playground, the new big red trampoline, and of course the long bus ride.....the berry picking?? Not so much! Chris had to have a "heart to heart" with him, telling him that he was going to pick berries and he better like it.
Last night we got to baby-sit our niece Kinley for the first time. It was really great:) She has such a personality! She loves to talk and be sat exactly upright so that she doesn't miss anything. She is only two months old, so she really doesn't have the muscle control to do that, and she gets very angry if she's not upright. She didn't want to eat last night, because she'd rather talk. It was really adorable, luckily Alexis said it was normal and okay. Now, Tucker on the other hand......his Only Child Syndrome came out in full force. He wanted Kinley's seat, her bottle, and he wanted her OUT of his mommy's arms. I didn't think it would be a big deal, as Tucker pretty much ignores me when Chris is around....well, I learned the fix for that-hold Kinley! While I held her, he couldn't get close enough to me. He was really very good, he "helped" me to give her a bottle, he was very interested in changing her diaper, and he let me sing her the school bus song (which she likes as much as Tucker does, haha). But when she cried, he pointed at her and said "don't cry baby", and when she squealed (which she did because she wasn't sitting up high enough) he ran out of the room and hid in his closet! So we have a lot of progress to make, but all in all it was a very nice evening.
Today we went to the March of Dimes Easter egg hunt, it's a new event they will have each year for the Family Teams to get a chance to meet, and a way to say thank you to the family teams. It was at a park in Baton Rouge, so of course Tucker loved swinging and the slides. When it was time to hunt eggs, it was a bit of a struggle to get him off of the swings. We told him "first hunt eggs, then swing." So he is the world's slowest egg hunter, just like last year! The other kids all took off running, and he acted like he was in no rush. He got about 6 plastic eggs, then he was done. Well 2 of those eggs ended up being prize eggs, so Tucker got two HUGE chocolate bunnies! Tucker was about ready to scream and go back to the swings when the MOD chairperson brought out 3 dozen dyed egss.....still in the cartons......eggs have been one of Tucker's big obsessions for about a year now.....and the real eggs are his favorite, not the plastic ones. They used the eggs for spoon races, where the kids had to cross the finish line with their egg still on the spoon. Well Tucker was very helpful at guarding the eggs, making sure everyone took ONLY one, because he wanted the rest for himself. He actually tried to do the race, but his egg kept falling off. After this, Tucker was very happy and well-behaved sitting with us and the other kids, as long as the eggs were in his viewpoint....honestly, Easter is Tucker's holiday! :)
We headed over to the party store to get Molli a princess balloon, then we went over to Molli's birthday party. The men were putting together her gift, a new swingset, and the kids jumped on the trampoline while they waited. Tucker loves going to Molli's and he especially loves the trampoline. He is getting much better with talking, today he said "Mommy, get on the trampoline" I'm not sure that anyone else could understand him, but I could. He was also very good with taking turns and transitioning. When we told him it was time to get off of the swing, or time to get off of the trampoline, he listened very well. After that long morning, Chris and Tucker are asleep.
Tucker is still in love with Black Bear. I don't even know where this toy came from, but it looks like a 50 cent Happy Meal Toy. Tucker loved it for awhile, then it disappeared. Well the other night my mom found it somewhere at her house, and it hasn't left Tucker's side since. It is small, and it has a little plastic hook on it, so Tucker keeps it hooked on his thumb and takes it EVERYWHERE! When it's out of his sight, he panics "black bear! black bear!" which sounds like "ba bayah". He took it all over the egg hunt, all over the playground, and all over Molli's house. Then today he let it stay on the slide because he needed both hands to swing. I was so impressed that he let it down for a minute. As for brown bear, Tucker's old comfort object, he has pretty much been kicked to the curb. I really feel kind of sorry for him:( But black bear is really more portable and less obvious....however, I have no way to replace black bear should something happen to him, while I know that Cabela's has a big stock of brown bears.....so that's a problem.
We are in the process of setting up Tucker's summer plans, which is harder than you might think. We are always trying to balance between pushing him, letting him rest, and letting him just "be a kid" for the summer. Last year we overloaded him on the therapy, which wore him out, but he also made amazing progress last summer. He will likely go to the same preschool he attended last year, but next year he'll be too old, which is always in the back of my mind. We are also getting ready to start intense ABA therapy (probably 9 hours a week or so), but that will likely be pretty fun for him at home.
We have always been told there's a "window" of time with kids with autism, like you have to shove as much therapy and make as much progress as you can before you lose that time. Well I think we've done that, but he's almost 5, so and we're not sure how that affects the proverbial window. The ABA therapist that I just interviewed was pretty amazed by Tucker's progress since he got the trach out, and she thinks with him being challenged at school all year, he will do great with the ABA this summer. Tucker thrives on routine and a strict schedule, and we are worried he will be very stressed and bored without the school routine this summer. So hopefully we will come up with a great plan for him that involves work and challenges, as well as some fun, relaxing, and of course naptime!
Tuesday, March 1, 2011
It's Been awhile
Things have been moving steadily along over here. This will be a quick summary of the last few weeks, probably a very long post.
On Valentine's Day, I left for my first overnight work trip. I went to DC for a conference for federal grants. It did not relate directly to my job, but it was close enough, and someone else couldn't go at the last minute, so I boarded a plane on Feb 14th.
I didn't expect how hard it was going to be to leave my family for 3 days. :( But it was!
And I felt like I was cheating on Tucker by riding the Metro (DC subway which is full of escalators at every station), riding the moving walkways in the airports, and then riding a trolley around DC at night for the tour (I could picture his face riding in a trolley). I also visited a few malls (one was attached to my hotel, one was in a huge train station), which of course have escalators and one had a carousel. And everytime I said "hotel room" I could hear Tucker's voice "hotale". That kid LOVES hotel rooms! My hotel was right on the orange Metro line, and each time I heard the speaker say "Orange Line" I thought "Ojz" which is how Tucker says orange, his current favorite color! (It has now since changed back to purple, by the way).
Tucker didn't seem to miss me until the third night, when he cried "mama" all evening. Of course on Thursday morning I woke up with him, and he did not seem at all happy to see me!
The conference itself was pretty boring, but also informative. I am glad I went, but I don't see myself taking any of those trips for awhile. I will be in Ruston, LA next week, but that's for a shorter time.
While I was away, Tucker missed a lot of school. I think on Tuesday he came home because of diarrhea. He was his active self all day with mom, then she kept him home the next day just in case. He seemed fine that day as well. So then Thursday, the school called, and mom went get him again. Tucker kept shoving his hand down his throat, and he was "off" so they sent him home. Mom took him grocery shopping to "buy some eggs" so I think by then he was just fine with missing school!
Chris took him to the pediatrician that Friday, where he got a clean bill of health-no sore throat, ear infections, or tummy issues.
That weekend, Chris went squirrel hunting and Tucker and I went over to visit Chris's family. Tucker has been really good with baby Kinley (at least I think, I'm not sure how kids usually act with babies), not hitting her or sitting on her....which is honestly what I expected him to do. Instead, he has reacted in a very typical way, by acting like a baby! It is really funny, yet frustrating, to watch, as he tries to climb into any seat or toy she has, and cover up with her blankets. He even put her bottle in his mouth, which is hilarious because he might have drank out of two bottles in his whole life......
So we have been coming up with ways that being 4 is way better than being a baby, like Tucker gets to ride 4 wheelers and go to school.
I have just been really taken by surprise with this development, Tucker sees Kinley just once a week, but he has really noticed the change. I almost feel bad to visit with Kinley, like I should play with Tucker when we're visiting so he isn't jealous. But of course I want as much baby time as I can get, as my Tucker is getting bigger every day. I forgot how little newborns are.
Last week Tucker had "poor" behavior a few times, which is the worst he can have. We have really been thrown with his Celexa medication. It is for anxiety, and he gets it everyday, starting when he was 2. Every month, like clockwork, we get to the last few doses of the bottle, and it's like Tucker is getting NO medication. He grinds his teeth, pulls his hair, hits, and has no interest in schoolwork. Then we start the new prescription, and it's amazing, he gets "excellent" behavior and is SO good. Both the pharmacist and neurologist say that's crazy and makes no sense....but all of us who see Tucker on a daily or weekly basis can track his mood based on what part of the med he is on.....so our new plan is to refill the med every 3 weeks, so we can avoid that last bad week altogether, even though we will be throwing out supposedly good medication.
This week, Tucker hasn't missed any school. But his teacher called on Tuesday because Tucker laid on the ground for center time. He went to the book center and laid on the ground, then when the time came to change centers, he went to the kitchen center and laid on the ground. So Chris was home that day (long story) and he drove over to check him out. It was outside time at that point, and Tucker had of course perked up. He also had a BM right after Chris left, and the teacher said Tucker was visibly better after that. Last night the same thing happened....Tucker was "off", walking funny and just really sad. Then he had a big BM and once he was cleaned up, he ran around in the best mood.
Over the weekend we enjoyed some good family time together. On Friday night Gina and Jene'e baby-sat Tucker so Chris and I could go out. We "go out" to a bar about once a year. My BIL Chris's band usually plays in Mississippi and Alabama along the Gulf coast, but his band was in town, so we all wanted to check it out. It was a lot of fun:) The best part was that Gina got up with Tucker at 7am:) But I got up at 8, so it wasn't really a sleep-in day. I went shopping for Jackie's shower (my future sister-in-law, she's marrying Justin on May 21st at the beach-we booked our condo last week). After that, I had some "me" time at the mall, again I felt like I was cheating on Tucker by going to the mall without taking him.
On Saturday night, Chris, Tucker, and I attended a Young Adult Ministry bonfire at another couple's house. Our church has a Young Adult Ministry for people age 18-35, and it's mainly young parents. We have meetings, service events, and social events. I usually attend alone, but for this fun event, I knew it would be very kid-friendly (or as kid-friendly as fire can be, haha). The home had a big swingset with four swings, a big slide, a sandbox, and tons of ride-on toys. Tucker spent the majority of time on the swings, but he let the actual babies ride in the baby swing (which is a big deal) and he was amazing at waiting for his turn on toys, and then getting off of a toy when his turn was over. He was way too scared of the bonfire to roast a hotdog or a marshmallow, he pointed at it "fire, hot dog" and I told him "you are so smart! we use the fire to cook the hotdog." He was excited to see the other kids' hot dogs and watch them eat, but he wouldn't touch his. He was very upset when we left at 830, then after his bath he went right to bed.
He was also very good at mass on Sunday (he calls it "beeg chuch"). I started taking Tucker to mass with me in October, and we always go straight to the cry room (there is no nursery or baby-sitting, but Tucker would really be too old for that anyway). We recently realized that if we keep this up, Tucker will never know that he is supposed to leave the cry room. He loves his routines, and if we keep that routine, it will just stay ingrained. So a few times, I took him into big church, and within minutes we were back in the cry room. He would scream out "Paw Paw House" which is his prize for being good during church. He also used to try to climb "up da stairs" (the altar) when we went up for Communion, luckily he has gotten better with that.
So anyways, the last few times at church, there have been screaming babies in the cry room, and Tucker has been very upset by this. I told him that big kids sit in big church, and he could listen to the priest, not the babies, if he was a big kid and sat quietly at church. So this Sunday, we sat right up front with Sarah, Dylan, and Gina. There was a lot of wiggling, climbing, and whispered threats of no Paw Paw's House, but all in all, he did great! Plus I could actually hear the mass this time since there wasn't any crying. I am very glad that there is so much music during the mass. That is Tucker's favorite part, and what keeps him happy and quiet.
Of course after mass we went to Maw Maw's and Paw Paw's. It was a very nice day, so he got to swing outside with Paw Paw, which made his day. Tucker has had good behavior this week, though not really any progress with the potty training. His teacher does not think he is quite ready, so maybe in a few months.
Thanks for checking in on us.
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