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 ;)
Wednesday, November 9, 2011
Tuesday, October 11, 2011
All Grown Up
I am so behind on updating this blog, and I apologize for that! I know I am not recording so many funny things that Tucker does and says.
Over the last few months, Tucker has really grown up. Well, over the last week or so, he has really just changed a lot. We went to his buddy Wes's 5th birthday party last Saturday and I heard at least 8 times, "Wow, Leigh, Tucker is almost as tall as you!" Well, that's not hard to achieve, lol, but I'm not sure how I'll feel when he actually does reach my height. Tucker is now saying 7-8 word sentences (with people he is comfortable with). Yesterday, he told his ABA therapist Liz "Miz, I need to go to the batroom now, peez." lol
He also told Dr. Thomas to "get up peez" because the Dr. dared to sit in the comfortable chair in his own office, the chair that also spins. Tucker was not pleased to be sitting on the patient table, but he did help Dr. T to place the stethoscope on his heart and he showed him his tummy when he asked.
Tucker spent the whole weekend with Chris, Pops, and Chris's brothers at the camp this weekend. I didn't realize how hard it was going to be to have them both gone! For years now Chris and I have worked out a hunting schedule so that Chris spends some weekends at home, some weekends at work, and some weekends hunting. So for the weekends when he was at work or hunting, I had the responsibility of taking care of Tucker, the house, and all of the other things that moms take care of .
So I was really looking forward to the "break" of being on my own while Chris had Tucker for the weekend. On Friday afternoon Tucker had therapy, so when therapy was over and I was home from work, Chris and I packed all of their stuff into the truck. Tucker was SO overjoyed to be going to the camp with his daddy, we couldn't pack fast enough for him. Chris made him give me a good-bye kiss, and I hugged him extra tight, and a little too long, I guess, because he pulled away and ran to the truck.
I waved to them, then went back inside and shut the door. I was totally out of my element! I still had tons of stuff to do with the house, running errands, and getting things taken care of for Tucker that I didn't get accomplished during the week, so it wasn't like I had the weekend off. I did get to see my mom and sisters a lot more than I usually would, so that was a nice treat. I also watched TV and just sat on the couch all Friday night, which I am not at all used to doing, lol. But I just missed Tucker so much, and by Saturday night I was counting the minutes until they came home.
On Friday night, it was dark by the time they got to the camp. Around 830 Chris called me, and Tucker was crying in the background, saying "mama, mama, Tucker come home with mama." I was shocked, as he has been working hard at potty training to go with Chris, the punishment is always "do you want to stay home with mommy?" and he says "Go to da camp peez!" But it was his bedtime and he all of a sudden realized that his mommy wasn't there! It broke my heart, but at the same time, I thought, thank goodness, he is not too big to ask for his mommy :) Chris lost cell phone service, so I was panicking. I called Sarah and told her that Tucker was crying. She said "come pick me up, and let's go get him!" I didn't even know where to go, especially in the dark, but she was serious about going, lol. About 20 minutes later Chris called me and said that as soon as they got to the camp and saw Pops, Tucker was so excited. So then I relaxed and told Sarah we were staying home. Over the next few days, Tucker had a blast riding four wheelers, bossing all the men around, and looking for deer in the woods. One thing he did not do is pee in the woods. Every time he had to go, Chris had to drive him back to the camp to use the potty! I cracked up at this, I told Chris that Tucker was potty trained, not tree-trained, lol. That is a different process.
Tucker pooped in the potty at the camp, which is a huge deal. We started potty training him over Labor Day weekend, and he got the #1 potty training very quickly. He has even learned that saying "pee pee on the potty!" gets him out of any unpleasant situation, such as therapy work, feeding time, or even church! We are starting to catch on to when he actually has to go, vs. when he is saying he has to go just to get up and out of the room. We don't want to make too many mistakes with that, lol
#2 has been a bit of a struggle, with his last accident happening last week with all 3 ABA therapists at the house. We have resorted to some crazy tactics, such as wiping his bottom with freezing wipes when he poops in his pants, and letting him have literally everything he asks for after pooping on the potty. We think he finally has it, thank goodness. Tucker also pooped on the potty at school for the first time yesterday, then again yesterday afternoon for Miss Liz for the first time. So we think he has got it!!!
Tucker's teacher at school and other aides and people who have seen him last year and this year are amazed by his recent progress. He works extremely hard at everything he does, and he is starting to have more language and social skills because of all of his hard work. As the planner in the family, I am looking to next school year and wondering where Tucker will be as far as his grade. We love Tucker's current PreK teacher, and Tucker is in her class for the second time this year. We have no idea what teacher he would have next year, or if he'd move into a self-contained class with all elementary ages, or how they'd try to include him in other kindergarten classes, or if we'd like to put him in a different school. So Chris and I have so many ideas right now and decisions to make.
Please pray that Tucker continues growing and thriving, and that Chris and I make wise decisions for Tucker's care and education. I will write a medical update soon, we have made several changes lately and saw quite a few specialists, and luckily it is all just good updates.
Over the last few months, Tucker has really grown up. Well, over the last week or so, he has really just changed a lot. We went to his buddy Wes's 5th birthday party last Saturday and I heard at least 8 times, "Wow, Leigh, Tucker is almost as tall as you!" Well, that's not hard to achieve, lol, but I'm not sure how I'll feel when he actually does reach my height. Tucker is now saying 7-8 word sentences (with people he is comfortable with). Yesterday, he told his ABA therapist Liz "Miz, I need to go to the batroom now, peez." lol
He also told Dr. Thomas to "get up peez" because the Dr. dared to sit in the comfortable chair in his own office, the chair that also spins. Tucker was not pleased to be sitting on the patient table, but he did help Dr. T to place the stethoscope on his heart and he showed him his tummy when he asked.
Tucker spent the whole weekend with Chris, Pops, and Chris's brothers at the camp this weekend. I didn't realize how hard it was going to be to have them both gone! For years now Chris and I have worked out a hunting schedule so that Chris spends some weekends at home, some weekends at work, and some weekends hunting. So for the weekends when he was at work or hunting, I had the responsibility of taking care of Tucker, the house, and all of the other things that moms take care of .
So I was really looking forward to the "break" of being on my own while Chris had Tucker for the weekend. On Friday afternoon Tucker had therapy, so when therapy was over and I was home from work, Chris and I packed all of their stuff into the truck. Tucker was SO overjoyed to be going to the camp with his daddy, we couldn't pack fast enough for him. Chris made him give me a good-bye kiss, and I hugged him extra tight, and a little too long, I guess, because he pulled away and ran to the truck.
I waved to them, then went back inside and shut the door. I was totally out of my element! I still had tons of stuff to do with the house, running errands, and getting things taken care of for Tucker that I didn't get accomplished during the week, so it wasn't like I had the weekend off. I did get to see my mom and sisters a lot more than I usually would, so that was a nice treat. I also watched TV and just sat on the couch all Friday night, which I am not at all used to doing, lol. But I just missed Tucker so much, and by Saturday night I was counting the minutes until they came home.
On Friday night, it was dark by the time they got to the camp. Around 830 Chris called me, and Tucker was crying in the background, saying "mama, mama, Tucker come home with mama." I was shocked, as he has been working hard at potty training to go with Chris, the punishment is always "do you want to stay home with mommy?" and he says "Go to da camp peez!" But it was his bedtime and he all of a sudden realized that his mommy wasn't there! It broke my heart, but at the same time, I thought, thank goodness, he is not too big to ask for his mommy :) Chris lost cell phone service, so I was panicking. I called Sarah and told her that Tucker was crying. She said "come pick me up, and let's go get him!" I didn't even know where to go, especially in the dark, but she was serious about going, lol. About 20 minutes later Chris called me and said that as soon as they got to the camp and saw Pops, Tucker was so excited. So then I relaxed and told Sarah we were staying home. Over the next few days, Tucker had a blast riding four wheelers, bossing all the men around, and looking for deer in the woods. One thing he did not do is pee in the woods. Every time he had to go, Chris had to drive him back to the camp to use the potty! I cracked up at this, I told Chris that Tucker was potty trained, not tree-trained, lol. That is a different process.
Tucker pooped in the potty at the camp, which is a huge deal. We started potty training him over Labor Day weekend, and he got the #1 potty training very quickly. He has even learned that saying "pee pee on the potty!" gets him out of any unpleasant situation, such as therapy work, feeding time, or even church! We are starting to catch on to when he actually has to go, vs. when he is saying he has to go just to get up and out of the room. We don't want to make too many mistakes with that, lol
#2 has been a bit of a struggle, with his last accident happening last week with all 3 ABA therapists at the house. We have resorted to some crazy tactics, such as wiping his bottom with freezing wipes when he poops in his pants, and letting him have literally everything he asks for after pooping on the potty. We think he finally has it, thank goodness. Tucker also pooped on the potty at school for the first time yesterday, then again yesterday afternoon for Miss Liz for the first time. So we think he has got it!!!
Tucker's teacher at school and other aides and people who have seen him last year and this year are amazed by his recent progress. He works extremely hard at everything he does, and he is starting to have more language and social skills because of all of his hard work. As the planner in the family, I am looking to next school year and wondering where Tucker will be as far as his grade. We love Tucker's current PreK teacher, and Tucker is in her class for the second time this year. We have no idea what teacher he would have next year, or if he'd move into a self-contained class with all elementary ages, or how they'd try to include him in other kindergarten classes, or if we'd like to put him in a different school. So Chris and I have so many ideas right now and decisions to make.
Please pray that Tucker continues growing and thriving, and that Chris and I make wise decisions for Tucker's care and education. I will write a medical update soon, we have made several changes lately and saw quite a few specialists, and luckily it is all just good updates.
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 :)
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