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! ;)
Wednesday, September 7, 2011
Wednesday, August 31, 2011
New Feeding Therapist
It is 1130pm, but I wanted to post about a new development in Tucker's life before going to bed, just in case I forget the details. I am not sure when I'll be able to blog again, as our busy lives just will not slow down!
I could write a book all about the epic saga of Tucker's feeding history. I like to place most of it out of my mind, so that I am not thinking about the times we've all tried before and failed to get him to eat. There are a million reasons why Tucker won't eat, and up until a few weeks ago, I had really given up.....we have much bigger issues going on, such as getting him to talk and interact with kids, getting him to learn more, etc. So feeding was on the "back burner," but of course my definition of back burner is having him in OT twice a week all summer ;)
The ABA consultant that is working with Tucker on behavior and learning actually consults with kids all over the country. Her specialty is not feeding, but she works with someone from Philadelphia who is a feeding specialist. This therapist, Jennifer, was accepting new clients, so Amy referred us to her. At this point, we had just started the evaluation for regular ABA therapy with Amy, we were trying to figure out Tucker's summer plans, etc. So I really didn't rush it. I sent her Tucker's medical history (which always is hard to read in black and white, especially to a new person), and she was not sure if she could help him.
She said that kids need to be at a certain point from a sensory and oral motor standpoint, and it didn't sound like Tucker was there. She is a behavioral therapist, meaning she uses the principles of ABA to push through the fear and resistance related to the feeding issues. She uses reinforcers (things that Tucker really really wants, like Chris's power tools and his firetruck toys) to get kids motivated to eat. And yes, we have tried this a million times, with no success. BUT we've tried it on a much smaller scale, and never with a trained behavioral feeding therapist.
After she emailed me saying that she wasn't sure Tucker was ready, I looked over the fees anyway. She said that sometimes insurance covers 60%, so that would go a long way in covering the costs. I planned to start looking into that before contacting her again. A few weeks ago, she emailed me to give me the updated "parent" fees, meaning a fee schedule with much lower fees for parents who would pay out of pocket. Coincidentally, Mrs. Terri, Tucker's feeding therapist, sent me an email on the same day about Tucker's eating progress and where she thought he was. So I forwarded that email to Jennifer, and started an email chain between the two of them. They were very excited about working together.
Now in case you did not notice, I wrote that Jennifer is located in Philadelphia....not exactly a day trip from here to there. The amazing thing is, she travels around the country, and will do an in-home program. There are several great feeding clinics around the country, we could put Tucker in one for 6-8 weeks in Baltimore, Omaha, Denver (maybe there are a few more), and he would be inpatient that whole time. Now where would I sleep, eat, or how on earth could we function without our family for that long? I don't know. Also, some kids get off of the feeding tube in that time and are totally fine without it. However, there are some kids who go home and regress back to not wanting to eat because they are back at home and don't associate the home environment with the oral eating. So I think that a home program is definitely the way for us to go, if we pursue this type of therapy at all.
In order for Jennifer to come to our home, we would need to cover her flight, rental car, mileage on the rental car, hotel room, and meals. So that adds a good bit to the total, of course, but we are looking into insurance covering it. For this reason (the travel costs) Jennifer usually conducts the initital evaluation over the phone and also through Skype (webchat).
Two weeks ago she emailed me to tell me that she had a last visit scheduled in BR with another family. This little boy was off the feeding tube, and she was just flying in for two days to wrap up with him, and touch base with his school, the parents, etc., on his progress. Since that family was covering all of her travel costs, she asked if we'd like her to do the evaluation in person? I couldn't believe our luck.....except I can, because honestly, these types of things happen to Tucker in his medical care all the time (thanks for the prayers everyone, you may not always know what they are for, but trust me they work).
So we scheduled a home visit for Monday evening, Mom, Chris, and I were there. Jennifer watched us feed Tucker, he self-fed mashed up cheetos and graham crackers, I spoon fed him mango sherbet, and he had water in a sippy cup. Less than 1% of the food made it into the back of his mouth, which is normal for him. Still, Jennifer was very impressed.
After Tucker "ate" his dinner, he fell asleep. So Jennifer, Chris, Mom, and I talked for a while. She said that Tucker is much better off than she thought from reading his medical history. She thought she was going to have to push him to touch food and be around food, but he is way past that. She said he has so much oral motor skill, and wants the food so badly, that it must be very strong fear of foods that is stopping him from taking the food into his mouth and swallowing it. He won't even let the food get in, Jennifer calls it pecking. Jennifer was also impressed by all of the feeding tools we have (we could open our own therapy store, haha), and the fact that we had separate places for eating orally and tube feeds, and also that we blend his food.
I was impressed by Jennifer for many reasons. One important reason is that she plans to keep feeding him healthy foods. This may sound obvious, but most feeding programs go for just high calorie foods so that the child can eat less volume. (Remember the all-cheesecake diet from when Tucker was two??)She said that we will work with high calorie veggies, fruits, avocado, peanut butter, etc. and that she wants him eating from all food groups. So that makes me happy, as Tucker pretty much has a perfect diet right now, and I don't want to trade that in for a kid who only wants McDonald's.
Jennifer also observed an OT session with Mrs. Terri today as part of the observation, I am not sure how that went, so I am waiting to hear from Jennifer with the final report.
I am not sure what our next step will be, or when we would start therapy. The way it works is that Jennifer would come into our home for 3-5 days. She would work with Tucker directly for a few hours, then she would start parent training, which he already warned her will be tough! She would get Chris and me (along with one of his school aides) trained on how to feed him. She would also not feel comfortable leaving until Tucker is taking at least one to two ounces of food orally at each feeding.
I asked her how long that would take, as I don't think she wants to move into our house! And she said "maybe a few hours." Haha, Chris and I looked at her like she had lost her mind. She said the quickest she got a child to go from 100% tube dependent to 0% tube dependent was one DAY, the longest was one year. We all know that Tucker takes his own time and never follows the rules, but I have to admit that she has given us new hope that Tucker could eat by mouth. Once she decides to work with a child, it is because the child is ready.....so I guess she doesn't have any failures... Tucker has done simply amazing with the ABA therapy, so it makes sense that applying those principles to feeding would work.
Pray for us, as we take several leaps of faith on this feeding journey.
Tucker also has an appointment with the geneticist in New Orleans on Thursday, and Chris, Tucker, and I are heading to Houston next week for an appointment with the sleep specialist and overnight sleep study.....and did I mention that we are doing intense potty training this weekend, ABA style???
Amy said it will be pure hell for a few days, then if Tucker is ready, it will be amazing and work....so please pray that he is ready!! I know that I will do anything I need to do in order to care for Tucker, but we are going on 5+ years of diapers here, I'd love for us to trade those in for the big kid "unda-way" as Tucker calls them.
I could write a book all about the epic saga of Tucker's feeding history. I like to place most of it out of my mind, so that I am not thinking about the times we've all tried before and failed to get him to eat. There are a million reasons why Tucker won't eat, and up until a few weeks ago, I had really given up.....we have much bigger issues going on, such as getting him to talk and interact with kids, getting him to learn more, etc. So feeding was on the "back burner," but of course my definition of back burner is having him in OT twice a week all summer ;)
The ABA consultant that is working with Tucker on behavior and learning actually consults with kids all over the country. Her specialty is not feeding, but she works with someone from Philadelphia who is a feeding specialist. This therapist, Jennifer, was accepting new clients, so Amy referred us to her. At this point, we had just started the evaluation for regular ABA therapy with Amy, we were trying to figure out Tucker's summer plans, etc. So I really didn't rush it. I sent her Tucker's medical history (which always is hard to read in black and white, especially to a new person), and she was not sure if she could help him.
She said that kids need to be at a certain point from a sensory and oral motor standpoint, and it didn't sound like Tucker was there. She is a behavioral therapist, meaning she uses the principles of ABA to push through the fear and resistance related to the feeding issues. She uses reinforcers (things that Tucker really really wants, like Chris's power tools and his firetruck toys) to get kids motivated to eat. And yes, we have tried this a million times, with no success. BUT we've tried it on a much smaller scale, and never with a trained behavioral feeding therapist.
After she emailed me saying that she wasn't sure Tucker was ready, I looked over the fees anyway. She said that sometimes insurance covers 60%, so that would go a long way in covering the costs. I planned to start looking into that before contacting her again. A few weeks ago, she emailed me to give me the updated "parent" fees, meaning a fee schedule with much lower fees for parents who would pay out of pocket. Coincidentally, Mrs. Terri, Tucker's feeding therapist, sent me an email on the same day about Tucker's eating progress and where she thought he was. So I forwarded that email to Jennifer, and started an email chain between the two of them. They were very excited about working together.
Now in case you did not notice, I wrote that Jennifer is located in Philadelphia....not exactly a day trip from here to there. The amazing thing is, she travels around the country, and will do an in-home program. There are several great feeding clinics around the country, we could put Tucker in one for 6-8 weeks in Baltimore, Omaha, Denver (maybe there are a few more), and he would be inpatient that whole time. Now where would I sleep, eat, or how on earth could we function without our family for that long? I don't know. Also, some kids get off of the feeding tube in that time and are totally fine without it. However, there are some kids who go home and regress back to not wanting to eat because they are back at home and don't associate the home environment with the oral eating. So I think that a home program is definitely the way for us to go, if we pursue this type of therapy at all.
In order for Jennifer to come to our home, we would need to cover her flight, rental car, mileage on the rental car, hotel room, and meals. So that adds a good bit to the total, of course, but we are looking into insurance covering it. For this reason (the travel costs) Jennifer usually conducts the initital evaluation over the phone and also through Skype (webchat).
Two weeks ago she emailed me to tell me that she had a last visit scheduled in BR with another family. This little boy was off the feeding tube, and she was just flying in for two days to wrap up with him, and touch base with his school, the parents, etc., on his progress. Since that family was covering all of her travel costs, she asked if we'd like her to do the evaluation in person? I couldn't believe our luck.....except I can, because honestly, these types of things happen to Tucker in his medical care all the time (thanks for the prayers everyone, you may not always know what they are for, but trust me they work).
So we scheduled a home visit for Monday evening, Mom, Chris, and I were there. Jennifer watched us feed Tucker, he self-fed mashed up cheetos and graham crackers, I spoon fed him mango sherbet, and he had water in a sippy cup. Less than 1% of the food made it into the back of his mouth, which is normal for him. Still, Jennifer was very impressed.
After Tucker "ate" his dinner, he fell asleep. So Jennifer, Chris, Mom, and I talked for a while. She said that Tucker is much better off than she thought from reading his medical history. She thought she was going to have to push him to touch food and be around food, but he is way past that. She said he has so much oral motor skill, and wants the food so badly, that it must be very strong fear of foods that is stopping him from taking the food into his mouth and swallowing it. He won't even let the food get in, Jennifer calls it pecking. Jennifer was also impressed by all of the feeding tools we have (we could open our own therapy store, haha), and the fact that we had separate places for eating orally and tube feeds, and also that we blend his food.
I was impressed by Jennifer for many reasons. One important reason is that she plans to keep feeding him healthy foods. This may sound obvious, but most feeding programs go for just high calorie foods so that the child can eat less volume. (Remember the all-cheesecake diet from when Tucker was two??)She said that we will work with high calorie veggies, fruits, avocado, peanut butter, etc. and that she wants him eating from all food groups. So that makes me happy, as Tucker pretty much has a perfect diet right now, and I don't want to trade that in for a kid who only wants McDonald's.
Jennifer also observed an OT session with Mrs. Terri today as part of the observation, I am not sure how that went, so I am waiting to hear from Jennifer with the final report.
I am not sure what our next step will be, or when we would start therapy. The way it works is that Jennifer would come into our home for 3-5 days. She would work with Tucker directly for a few hours, then she would start parent training, which he already warned her will be tough! She would get Chris and me (along with one of his school aides) trained on how to feed him. She would also not feel comfortable leaving until Tucker is taking at least one to two ounces of food orally at each feeding.
I asked her how long that would take, as I don't think she wants to move into our house! And she said "maybe a few hours." Haha, Chris and I looked at her like she had lost her mind. She said the quickest she got a child to go from 100% tube dependent to 0% tube dependent was one DAY, the longest was one year. We all know that Tucker takes his own time and never follows the rules, but I have to admit that she has given us new hope that Tucker could eat by mouth. Once she decides to work with a child, it is because the child is ready.....so I guess she doesn't have any failures... Tucker has done simply amazing with the ABA therapy, so it makes sense that applying those principles to feeding would work.
Pray for us, as we take several leaps of faith on this feeding journey.
Tucker also has an appointment with the geneticist in New Orleans on Thursday, and Chris, Tucker, and I are heading to Houston next week for an appointment with the sleep specialist and overnight sleep study.....and did I mention that we are doing intense potty training this weekend, ABA style???
Amy said it will be pure hell for a few days, then if Tucker is ready, it will be amazing and work....so please pray that he is ready!! I know that I will do anything I need to do in order to care for Tucker, but we are going on 5+ years of diapers here, I'd love for us to trade those in for the big kid "unda-way" as Tucker calls them.
Friday, August 19, 2011
Day Two of the Trip
On the second day of the Houston trip, we got up pretty early. We got dressed and packed up, then we went downstairs for the free hotel breakfast. It was pretty good, the best part is they had boiled eggs. Tucker got an egg in a bowl, and he was so excited!
Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid. He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.
Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before. Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?" Well.....that is up for interpretation! It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.
The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.
By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days. So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.
So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer.
So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest. Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic. There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling. I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.
We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them. He licked all of the peanuts and the girls fought over who got to sit next to him. Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in! He was so proud of himself again, so we made a very big deal out of it.
So now it has been two weeks since the Houston visits. Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low. She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.
I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that. So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.
I haven't heard anything back about any of the other lab work, so I think everything must be fine :)
Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.
I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)
Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid. He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.
Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before. Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?" Well.....that is up for interpretation! It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.
The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.
By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days. So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.
So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer.
So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest. Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic. There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling. I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.
We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them. He licked all of the peanuts and the girls fought over who got to sit next to him. Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in! He was so proud of himself again, so we made a very big deal out of it.
So now it has been two weeks since the Houston visits. Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low. She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.
I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that. So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.
I haven't heard anything back about any of the other lab work, so I think everything must be fine :)
Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.
I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)
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