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 :)

Wednesday, September 7, 2011

Yay, Tucker!! :)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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