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.
Wednesday, August 31, 2011
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! :)
Thursday, August 11, 2011
Trip to Houston
It has been way too long since I updated, more than a month. My job has been crazy busy this summer, but things are finally starting to calm down.
Tucker started school on Wednesday, and he will continue with ABA therapy in the afternoons after school. Hopefully he adjusts to the change well. Last year he was pretty tired in the first few weeks of school, but by November he was fine in the evenings.
He was SO ready to go back to school! He asks me to sing the school song all the time, and I still have to name all of his classmates. Of course, he is repeating the 4 year old class, so he will have all new friends, but I'm sure he'll like them, too. So far his teacher is totally amazed by how he has been in class, he has two "excellent" days in a row!!
So just an update:
The 4th member of our family, Buck, got very sick a few weeks ago, and we thought we would have to put him to sleep. We were very sad and stressed out for a couple of days, and Chris is now getting used to Buck's medicine schedule. Buck has been feeling much much better, and the vet's strict orders of having him inside in the air conditioning all day has made him quite happy! He really is a very good dog, but he is a Catahoula hunting dog, not really meant for an inside dog. So far it is okay, but he is just too big and too wild to be out of his cage too much. Of course, when he is out of his cage, Tucker gets in! I think he wishes he was a dog.
I took two days off from work last week, and Mom and I took Tucker to Houston. Tucker saw Dr. K, the mito doctor, for a 6 month check up and to get annual labs drawn. He also saw Dr. P for the first time, she is also a doctor in the mitochondrial clinic, she is both a pulmonologist and an immunologist, so she covered lots of issues.
Tucker has been very well-behaved lately, as well as less anxious and happier. He was so very good during this trip, much better than we could have expected any 5 year old to be. First of all, the ride is about 6 hours long. Then there is the waiting for the doctor (one doctor ran over 2 hours late!), waiting for the nurse, waiting for lab paperwork, waiting for lab techs, getting blood drawn (ouch!), and navigating our way out of the doctors office, through the parking garage, and out on the streets to our hotel. So there are obviously many times during the two days where Tucker could have had a meltdown, and we were expecting one. But he watched his videos and listened to my IPhone for Jason Aldean songs, as well as looking in magazines for pictures of bears.
We slept in Lake Charles Monday night, and Tucker had an absolute blast playing with Morgan and Grace. He was VERY upset when we left Tuesday morning without them! He wanted them to come with him :(
On Tuesday morning we headed to see Dr. K. Dr. K was very pleased with how Tucker looks, and how he has been doing. She said this is exactly where she'd like him to stay, or improve of course. She also commented that he was doing better with speech and eye contact, although he did not really show off like he could have. His blood pressure was high at first when they took it in his leg, but when they re-checked in his arm, it was fine. Missy (Samuel and Lauren's mom) works for the clinic, so she came and talked to us for awhile. It was so great to see her, I had lost her cell phone number, so I hadn't talked to her in a long time.
There was a very exciting part to the appointment-all of the research into mitochondrial disease has yielded a new genetic test. Before this test, Tucker was tested for 8 known genetic causes of mitochondrial disease, and they all came back negative. The new blood test can check for over 400 nuclear DNA causes of mitochondrial disorder. This can provide much more information about mitochondrial disease and the cause of the disease and each type of disease. Once a gene is isolated, then it will be much easier for other family members to get tested to see if they are affected, carriers, etc. The test just became available 5 weeks ago, so Tucker is towards the beginning of the testing. There is a long waiting period for the results, so I am not sure when we will hear back. Dr. K also ordered all of the regular blood and urine tests, so we headed over to the lab.
First, we tried to get Tucker to pee pee in the cup. Tucker has been really into using the potty lately. He likes to stand up by the potty and pee pee near the potty, not in it! I have cleaned pee off the floor and wall many times in the last few weeks, and he is SO proud of himself! He says "pee pee on the toilet." Then he flushes, even though there is no reason to. So anyways, he does pee on demand sometimes, so I tried to get him to put some urine in the cup for about 10 minutes. It did not work, so we had to put the baggie on him to collect it. He was very uncomfortable with that, but it had to be done.
Then we went to sign in at the hospital lab, which took awhile, then we went to the lab, then Tucker started freaking out because he knew he had to get blood drawn. The last two times we went to Houston, Chris has come with us to hold Tucker down for the blood draws. Both times Tucker just held his arm out and acted like it was no big deal. So this time Chris did not come, and of course he freaked out! He actually picked Mom to hold him, so Mom had to hold one arm and hold down both legs while the tech took the blood and I sang! The weird part was that Tucker was freaking out and screaming "Go see Samuel! Go see Samuel!" Mom and I looked at eachother, and I asked him "you want to see Samuel?" He repeated "Go see Samuel," I told him that he can't, that Samuel is in heaven. (He is a little boy that we all love that had mitochondrial disease.) I told him we could go see Samuel's mommy back at the clinic after he gave his blood (we had to bring some of the blood back to be Fed Exed out of state). The very odd thing is that Tucker only met Samuel three times in his life, and all of them were at least a year ago. In October we stayed at their home while we were in Houston (Samuel passed away last September) and Tucker really enjoyed being there. Later when we saw Missy again, she said that Samuel visits people often; so maybe it wasn't so strange that Tucker was asking for him. We thought it was sweet.
So anyways, once the tech took the first vial of blood (there were about 10 in all), Tucker just stared at her, and we started naming the colors of the tubes! Tucker really is hilarious. We checked the urine baggy, it was dry. We then headed back across the street to bring the blood vial to Missy. She called me when we were in the elevator, wondering what took us so long. I told her we went as fast as we could, and she said "it's the next office over." I looked at mom and said WHAT??? So all of this time, we have been navigating the maze that is the physician's tower and hospital, getting Tucker admitted to the actual hospital, then going through that maze to get to the hospital lab, when there was a lab literally next door to Dr. K.'s office??? Turning a 20 minute process into a 2 hour process?? Now that is dumb, for real! lol We felt like idiots!
We dropped the sample off, then we went downstairs for lunch. There is a sandwich shop, the food was delicious, and we were all starving after our hospital trip. Tucker ate his Cheetos, and he was content. So our last task was to turn in some urine for the sample. We went to the restroom near the hospital lab (they already had all of the paperwork so we went back there) to check Tucker's pee pee bag. Well it was full, so that was good. While I was trying to change Tucker, he walked over to the toilet and started peeing on the floor! He was way too short for the actual potty, but he was trying :)
I sort of held him up while also cheering him on, yelling "Nana, Tucker is peeing on the potty!!" when really his aim is horrible and he was peeing on the back of the toilet. Mom is saying "good job" and the lady in the next stall is cracking up laughing at me. So then I sent Tucker out with no bottoms on so that Mom could change him, and I had to clean the pee pee from all over. Tucker had the biggest grin, like he had just ran a marathon or something, he was so proud of himself for peeing on the potty.
We got him dressed, we turned in the urine cup, and we headed out. Tucker was so happy to be finally leaving and going to the hotel. Mom and I drove around for awhile, then we picked a hotel and checked in. We took a two hour nap, (which we all needed), but of course Tucker had to turn all of the lamps on and then off first. He also got to press the elevator buttons many times, as we were on the 4th floor. We had packed our swimsuits, but in the 108 degree heat index, it was even too hot to swim! We spent the evening at Target and ate dinner at Olive Garden. Tucker got his own kid-sized pizza, and he was so happy to lick every last bit.
I need to update about the next day, when Tucker had his first appointment with Dr. P. Hopefully I get to that sometime soon!
Tucker started school on Wednesday, and he will continue with ABA therapy in the afternoons after school. Hopefully he adjusts to the change well. Last year he was pretty tired in the first few weeks of school, but by November he was fine in the evenings.
He was SO ready to go back to school! He asks me to sing the school song all the time, and I still have to name all of his classmates. Of course, he is repeating the 4 year old class, so he will have all new friends, but I'm sure he'll like them, too. So far his teacher is totally amazed by how he has been in class, he has two "excellent" days in a row!!
So just an update:
The 4th member of our family, Buck, got very sick a few weeks ago, and we thought we would have to put him to sleep. We were very sad and stressed out for a couple of days, and Chris is now getting used to Buck's medicine schedule. Buck has been feeling much much better, and the vet's strict orders of having him inside in the air conditioning all day has made him quite happy! He really is a very good dog, but he is a Catahoula hunting dog, not really meant for an inside dog. So far it is okay, but he is just too big and too wild to be out of his cage too much. Of course, when he is out of his cage, Tucker gets in! I think he wishes he was a dog.
I took two days off from work last week, and Mom and I took Tucker to Houston. Tucker saw Dr. K, the mito doctor, for a 6 month check up and to get annual labs drawn. He also saw Dr. P for the first time, she is also a doctor in the mitochondrial clinic, she is both a pulmonologist and an immunologist, so she covered lots of issues.
Tucker has been very well-behaved lately, as well as less anxious and happier. He was so very good during this trip, much better than we could have expected any 5 year old to be. First of all, the ride is about 6 hours long. Then there is the waiting for the doctor (one doctor ran over 2 hours late!), waiting for the nurse, waiting for lab paperwork, waiting for lab techs, getting blood drawn (ouch!), and navigating our way out of the doctors office, through the parking garage, and out on the streets to our hotel. So there are obviously many times during the two days where Tucker could have had a meltdown, and we were expecting one. But he watched his videos and listened to my IPhone for Jason Aldean songs, as well as looking in magazines for pictures of bears.
We slept in Lake Charles Monday night, and Tucker had an absolute blast playing with Morgan and Grace. He was VERY upset when we left Tuesday morning without them! He wanted them to come with him :(
On Tuesday morning we headed to see Dr. K. Dr. K was very pleased with how Tucker looks, and how he has been doing. She said this is exactly where she'd like him to stay, or improve of course. She also commented that he was doing better with speech and eye contact, although he did not really show off like he could have. His blood pressure was high at first when they took it in his leg, but when they re-checked in his arm, it was fine. Missy (Samuel and Lauren's mom) works for the clinic, so she came and talked to us for awhile. It was so great to see her, I had lost her cell phone number, so I hadn't talked to her in a long time.
There was a very exciting part to the appointment-all of the research into mitochondrial disease has yielded a new genetic test. Before this test, Tucker was tested for 8 known genetic causes of mitochondrial disease, and they all came back negative. The new blood test can check for over 400 nuclear DNA causes of mitochondrial disorder. This can provide much more information about mitochondrial disease and the cause of the disease and each type of disease. Once a gene is isolated, then it will be much easier for other family members to get tested to see if they are affected, carriers, etc. The test just became available 5 weeks ago, so Tucker is towards the beginning of the testing. There is a long waiting period for the results, so I am not sure when we will hear back. Dr. K also ordered all of the regular blood and urine tests, so we headed over to the lab.
First, we tried to get Tucker to pee pee in the cup. Tucker has been really into using the potty lately. He likes to stand up by the potty and pee pee near the potty, not in it! I have cleaned pee off the floor and wall many times in the last few weeks, and he is SO proud of himself! He says "pee pee on the toilet." Then he flushes, even though there is no reason to. So anyways, he does pee on demand sometimes, so I tried to get him to put some urine in the cup for about 10 minutes. It did not work, so we had to put the baggie on him to collect it. He was very uncomfortable with that, but it had to be done.
Then we went to sign in at the hospital lab, which took awhile, then we went to the lab, then Tucker started freaking out because he knew he had to get blood drawn. The last two times we went to Houston, Chris has come with us to hold Tucker down for the blood draws. Both times Tucker just held his arm out and acted like it was no big deal. So this time Chris did not come, and of course he freaked out! He actually picked Mom to hold him, so Mom had to hold one arm and hold down both legs while the tech took the blood and I sang! The weird part was that Tucker was freaking out and screaming "Go see Samuel! Go see Samuel!" Mom and I looked at eachother, and I asked him "you want to see Samuel?" He repeated "Go see Samuel," I told him that he can't, that Samuel is in heaven. (He is a little boy that we all love that had mitochondrial disease.) I told him we could go see Samuel's mommy back at the clinic after he gave his blood (we had to bring some of the blood back to be Fed Exed out of state). The very odd thing is that Tucker only met Samuel three times in his life, and all of them were at least a year ago. In October we stayed at their home while we were in Houston (Samuel passed away last September) and Tucker really enjoyed being there. Later when we saw Missy again, she said that Samuel visits people often; so maybe it wasn't so strange that Tucker was asking for him. We thought it was sweet.
So anyways, once the tech took the first vial of blood (there were about 10 in all), Tucker just stared at her, and we started naming the colors of the tubes! Tucker really is hilarious. We checked the urine baggy, it was dry. We then headed back across the street to bring the blood vial to Missy. She called me when we were in the elevator, wondering what took us so long. I told her we went as fast as we could, and she said "it's the next office over." I looked at mom and said WHAT??? So all of this time, we have been navigating the maze that is the physician's tower and hospital, getting Tucker admitted to the actual hospital, then going through that maze to get to the hospital lab, when there was a lab literally next door to Dr. K.'s office??? Turning a 20 minute process into a 2 hour process?? Now that is dumb, for real! lol We felt like idiots!
We dropped the sample off, then we went downstairs for lunch. There is a sandwich shop, the food was delicious, and we were all starving after our hospital trip. Tucker ate his Cheetos, and he was content. So our last task was to turn in some urine for the sample. We went to the restroom near the hospital lab (they already had all of the paperwork so we went back there) to check Tucker's pee pee bag. Well it was full, so that was good. While I was trying to change Tucker, he walked over to the toilet and started peeing on the floor! He was way too short for the actual potty, but he was trying :)
I sort of held him up while also cheering him on, yelling "Nana, Tucker is peeing on the potty!!" when really his aim is horrible and he was peeing on the back of the toilet. Mom is saying "good job" and the lady in the next stall is cracking up laughing at me. So then I sent Tucker out with no bottoms on so that Mom could change him, and I had to clean the pee pee from all over. Tucker had the biggest grin, like he had just ran a marathon or something, he was so proud of himself for peeing on the potty.
We got him dressed, we turned in the urine cup, and we headed out. Tucker was so happy to be finally leaving and going to the hotel. Mom and I drove around for awhile, then we picked a hotel and checked in. We took a two hour nap, (which we all needed), but of course Tucker had to turn all of the lamps on and then off first. He also got to press the elevator buttons many times, as we were on the 4th floor. We had packed our swimsuits, but in the 108 degree heat index, it was even too hot to swim! We spent the evening at Target and ate dinner at Olive Garden. Tucker got his own kid-sized pizza, and he was so happy to lick every last bit.
I need to update about the next day, when Tucker had his first appointment with Dr. P. Hopefully I get to that sometime soon!
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