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!