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 :)

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!

The Last Few Days

A lot has been going on over the last week or so; Tucker attended a full week of school last week, yay! I didn't want to post about his first day back, and brag that it was a success only to jinx us. So I waited until we were done, including a great field trip. Tucker started feeling better on a Wednesday, then that Thursday I kept him home to monitor him, and he was much better. That Friday, school was out for parent/teacher conferences, so Tucker didn't go back to school until Monday; he was out for a total of 8 school days, and 13 calendar days. We were quite nervous about how we would get back into the school routine, especially when his speech therapist came to our house and said she could tell he was out of his work routine. So that Monday morning I woke him up and told him he was going to school. He was SO excited, and rushed to get ready. He had a hard time letting go of Spiderman, but I promised that he would wait on the couch until Tucker came home. We ended up outside a full ten minutes before we usually are, and he kept looking down the road, waiting for the bus to appear. When the bus arrived, he ran on! The bus driver said they missed him, I replied that obviously Tucker missed them, too. That day was pretty hard for me, I missed Tucker:( I stayed home, just in case the teacher called me and needed me to pick him up. It was so odd to have "me" time again, even though most of the day was spent on neglected housework. At least I could control the TV and/or radio, I had watched Elmo Firetruck and listened to Chamillionare rap songs for a whole week! When Tucker got off the bus, he ran past me into the house. He said two words when he got home: "Peye-da-man", then he found him, then "Huck" meaning the Incredible Hulk. He held both of them and was so happy! No "Mommy", haha! He did not miss me so much as his stuff. He did pretty well at OT that day; he had missed the previous week from being sick. According to his notes, he had a good day at school, so by Monday night he was very tired. He made it through the rest of the week just fine, and he got a good behavior note on Thursday. Tucker missed school on Monday and Tuesday because he made a trip to Houston. Tucker had his echo/EKG on his heart on Monday, then an appointment with the mito dr, Dr K, Tuesday. The trip was not as easy as usual; Tucker almost never sleeps in the car, he really never has. So when we take a 5 hour car trip, you would think he would at least sleep a little, but he doesn't. He is very good in the car and usually enjoys trips, but after about an hour he started asking to "get out the car" and "home". So we stopped a few times for gasoline and breakfast, and he was not happy to get back in the car each time. I was worried that he would be even more upset when we got to the hospital, but he was fine. I think he was just happy to run around. We signed in, and Tucker got his orange patient bracelet. Chris took Tucker for escalator rides for about 10 minutes, (he really loves that!), then we went into the imaging center. Tucker looked around the waiting room, then looked down at his bracelet, and burst into tears! He said "home, home" and tried to escape out of the door. We had already told him that it wouldn't hurt, so he decided to believe us. He sat down and watched Mickey Mouse on the laptop. He was happy when the techs came to get us, and he was very compliant with the EKG. The tech told him the leads were stickers, so Tucker liked that. For the echo, Tucker had to lie down for at least 20 minutes while the tech moved the wand around and took pictures of his heart. We thought that was going to be hard; they had even offered to sedate him, which we declined. They had on cartoons for Tucker to watch; well, he put his hands behind his head, propped his leg up, and watched the monitor with the pictures of his heart. He was totally at ease, like he watches echos all day long. He even "helped" the tech move the wand around. It was dark, and Chris and I both almost nodded off. When the tech said she was done, we were surprised; we thought it was going to be much longer. We left and headed to the Knights. Lauren was sick, and her pedi wasn't sure if she was contagious, so she spent the night at her grandparents' house so Tucker wouldn't get sick. So that left the whole house of toys for Tucker, he loved running around getting into all kinds of trouble! Pictures and signs of Samuel were everywhere; Tucker didn't understand that Samuel wasn't there, but he appreciated playing with all of his toys and bossing his Mommy:) I got to talk to Missy a little bit while Tucker napped; I miss her so much, I wish we could have talked more. We ate dinner with Ben and Missy, then we got ready for bed. Tucker was running around like a crazy person, and by 10pm he was not even tired. Missy gave Tucker his first dose of Melatonin, which helped him sleep. Within 10 minutes he was out, and he really needed to sleep after his long day. We will be using Melatonin from now on. We are not trying to knock Tucker out, it's just that sometimes he literally can not slow his body down to go to sleep, and his sleep is necessary for his health. Dr. K said it was fine to use Melatonin. The next morning we headed out early for our appointment with Dr. K. We had to wait for about 20 minutes in the waiting room, which is very short for this doctor. The room got crowded, though, so we had to buckle Tucker into his stroller; he does not know how to keep his hands to himself! We took out the laptop and put on his Mickey movie with his headphones. I have said this before: thank goodness for technology! I don't know how else we would occupy Tucker for such long waiting times. Tucker was so compliant for the weight and height check, and even the blood pressure check, which he usually HATES and fights against. The resident came into the room and examined Tucker and talked to us. Going to a teaching hospital is such a different experience for us. We have been in doctors' offices where one or maybe two residents observe a doctor's appointment, but at this office the doctor comes in with a whole team of students. Tucker was pretty rude to them, he wouldn't even look at Dr. K until she touched his purse! Then he was pretty mad at her. Dr K thinks Tucker looks great, she said that he looks much different than when she first met him. It was funny because Missy said the same thing to me that morning. They both said he looks much more proportional, something that I had noticed also. He used to be all belly with little stick arms and legs, and he is much more solid now and more proportional. Missy asked what we had changed, and the only real answer is that we added his mito supplements. So they are doing something positive! Dr K even suggested that we increase his dose of CoQ10, but if he seems to have too much energy, we could drop it back down. It's funny, because we give Tucker the supplements to increase his energy chain at the cellular level; while at the same time, he seems to have a ridiculous amount of energy! He bounces off the walls sometimes, and has attention problems because he can't slow down. One of our main concerns was Tucker's high blood sugar. Tucker has random high blood sugar readings, and lately they are almost to 300. This is very alarming, but for the most part his blood sugar is normal. So the endocrinologist in BR decided to just monitor him, and Dr. K agrees. She said it would be hard to decide how much insulin to give Tucker because we might give him too much and his sugar could get too low. She wants us to see the Endo in Houston, along with the Pulmonologist/Immunologist (one doctor who takes care of both specialties) that specialize in Mito the next time we come in. We are slowly moving Tucker's specialties over to Houston, while also keeping the ones in BR for regular monitoring. Dr K ordered the second round of genetic tests for Depletion Syndromes. The first round was taken in July, and they all came back negative. The hope is that we find the exact gene that caused Tucker's mito, that way the family and our future kids could get tested for that gene to see if we are carriers and/or affected. It would also help mito research to know what genes cause which types of mito. We know that we may never find that gene, but we will still take all the tests to see. Dr. K also ordered another A1C to test Tucker's blood sugar over the long-term, and an IgG level to check his immunity level. The last few times that Tucker had blood drawn, it was easy for the techs to find a vein and get the blood; the problem was that Tucker flipped out and had to be physically held down by at least two people to get the blood drawn. This is the main reason that I made Chris come with me to Houston; Mom and I had a hard time forcing him to lie down last time. This time, we told him that we had to get blood drawn so that we could go home. Tucker went into the basement lab and sat on Chris's lap, held out his arm, and watched as the tech set up. Once she stuck him, he held her hand and sat very patiently! Chris and I exchanged glances, and wondered where our feisty Tucker was! The tech said she was reading her Bible, waiting for next patient, so she must have gotten blessed by having a good little boy to take labs for. I looked at her desk, and sure enough, an open Bible was sitting there. I told her we should always ask our techs to read the Bible, because that was the best experience we'd ever had, lol. Tucker went back to school today, and we hope to have an uneventful few days. Then on Saturday we have our annual Halloween party (it's only the second one) for the kids. We started this last year, and it was a big hit! We have games, trick-or-treat, crafts, and Halloween-themed snacks. The theme is usually "fun, not scary", and the kids love that. Chris tries to sneak scary elements in, but so far I haven't let him! I like to give the kids a chance to get together in their costumes, and it's a fun reason to get together. Most of us go our own ways for the actual Halloween night, so it's nice to see all of the kids together in their costumes. I hope this party is as fun as last year's, but I have quite a bit to do before then.