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!
Thursday, August 11, 2011
Monday, July 11, 2011
Great new things
Tucker has had an amazing few weeks...I have joked that he does better when Mommy is busy working, haha (the summer time is the busiest season for my job). The last post was about our beach trip, well John Michael and Grace stayed at my grandparents' house the whole week after the beach trip. Tucker latched onto John Michael and never let go. Chris and I had to work each day, but each night we would hang out with the kids, either at mom's or at our house. On Thursday night we took the older kids to Dixie Landin', a local theme park, and we decided to leave Tucker at Chris's parents' house. We knew it would be hard to separate him from JM, but he LOVES his Sissy and Pops, so we thought it would be fine. He screamed and cried "Jon Micah! Jon Micah!" as we left the house. It was truly pathetic. Chris and John Michael had a blast riding the big rides, and even convinced Grace to ride a few, which Tucker was too small to ride on. So it really was the right choice, and Tucker of course ended up loving being with his grandparents. Mom and Gina joined us, and Mom and I embarrassed Grace by dancing to the 80s music blaring on the speakers :)
By Friday night, Grace had gone home, but JM had one more night in LA. We all went bowling, and we knew we couldn't let Tucker stay with anyone on JM's last night in town. So we took him galactic bowling, way past his bedtime, complete with fog, strobe lights, and rap music videos. He loved it!!!! It was so hilarious. That night JM asked to sleep at our house, so he and Chris stayed up late playing video games while I put Tucker to sleep. Tucker is way too smart for this, he knew he was getting the bad end of the deal. So I tried the only thing that might work-my singing. For some reason, he loves it. So that worked, I sang "Me and my best Teddy Bear," and "Twinkle Twinkle Little Star." Tucker started ABA a few weeks ago, and I read an ABA parenting book. One of the suggestions is to sing a familiar song, then to stop at a favorite part and see if the child will pick up where you leave off. The book warned that this is a very high-level skill for kids with language delays, so don't expect it to work right away. Well, just for the heck of it, I sang "ABCD" and paused.......and Tucker answered "eee-ep-gee", so I said "HIJK" and he said "elemenopee" I sang "QRS" and he sang "T-ooh-bee" I sang "WX" and he sang "Y in Zeeee"
So I was freaking out, I mean like hyperventilating, poor Tucker probably was so scared. So I tried again, and he sang it again. Then I tried Twinkle, Twinkle, Little Star, Me and My Best Teddy, and then to really be silly, I tested his "Our Father" and "Guardian Angel" prayers that I pray with him at night. He knew every other word. I just sat there in shock, then I called Chris in and made him listen to his ABCs again. Chris was freaking out, too, and so has anyone else who has seen it. It is amazing to see all of the knowledge that has been stored up, and he is just now deciding to share it with us.
Now keep in mind that it is very hard to understand him, so he still gets frustrated when we don't understand him. But he now spontaneously comes up to me to talk, which is a huge deal. So now JM has been gone for about two weeks, and Tucker was not upset during the first few days. I thought maybe he had forgot about him. But then last Friday, Tucker came up to me and said, "John Micah comin' back?" I told him, "sure in a long long time. One day we will get in the car and go see him in Kentucky." As a rule, that was way too long of a sentence for him to process. I should have just said "no." Later that night, I was re-telling the story to Chris, and Tucker brought me his dump truck and teddy bear, and said "get up!" I got off the couch, and he said "ride the car. go to ke-tucky." Poor baby, he misses his cousins! He keeps looking for him at mom's house, like he expects him to be hiding behind the couch or something.
The one kind of scary thing that happened is that Tucker had an outer ear infection last week after swimming in the lake all weekend. When we took him to the after hours doctor, they weighed him, and we realized he is only 34 pounds. :( He was 39 pounds at one point, and when we re-weighed him at home, the scale read 35 pounds. The last thing we need is for him to lose weight, so hopefully at his well-check at the pediatrician's or at his mito doctors' appointments next month, someone will have some advice. He is already getting a ton of calories, Chris's suggestion is to add more feedings at night. I think I may even ask if we can run feeds continuously overnight to boost his calorie intake. We'll see what the doctors think.
By Friday night, Grace had gone home, but JM had one more night in LA. We all went bowling, and we knew we couldn't let Tucker stay with anyone on JM's last night in town. So we took him galactic bowling, way past his bedtime, complete with fog, strobe lights, and rap music videos. He loved it!!!! It was so hilarious. That night JM asked to sleep at our house, so he and Chris stayed up late playing video games while I put Tucker to sleep. Tucker is way too smart for this, he knew he was getting the bad end of the deal. So I tried the only thing that might work-my singing. For some reason, he loves it. So that worked, I sang "Me and my best Teddy Bear," and "Twinkle Twinkle Little Star." Tucker started ABA a few weeks ago, and I read an ABA parenting book. One of the suggestions is to sing a familiar song, then to stop at a favorite part and see if the child will pick up where you leave off. The book warned that this is a very high-level skill for kids with language delays, so don't expect it to work right away. Well, just for the heck of it, I sang "ABCD" and paused.......and Tucker answered "eee-ep-gee", so I said "HIJK" and he said "elemenopee" I sang "QRS" and he sang "T-ooh-bee" I sang "WX" and he sang "Y in Zeeee"
So I was freaking out, I mean like hyperventilating, poor Tucker probably was so scared. So I tried again, and he sang it again. Then I tried Twinkle, Twinkle, Little Star, Me and My Best Teddy, and then to really be silly, I tested his "Our Father" and "Guardian Angel" prayers that I pray with him at night. He knew every other word. I just sat there in shock, then I called Chris in and made him listen to his ABCs again. Chris was freaking out, too, and so has anyone else who has seen it. It is amazing to see all of the knowledge that has been stored up, and he is just now deciding to share it with us.
Now keep in mind that it is very hard to understand him, so he still gets frustrated when we don't understand him. But he now spontaneously comes up to me to talk, which is a huge deal. So now JM has been gone for about two weeks, and Tucker was not upset during the first few days. I thought maybe he had forgot about him. But then last Friday, Tucker came up to me and said, "John Micah comin' back?" I told him, "sure in a long long time. One day we will get in the car and go see him in Kentucky." As a rule, that was way too long of a sentence for him to process. I should have just said "no." Later that night, I was re-telling the story to Chris, and Tucker brought me his dump truck and teddy bear, and said "get up!" I got off the couch, and he said "ride the car. go to ke-tucky." Poor baby, he misses his cousins! He keeps looking for him at mom's house, like he expects him to be hiding behind the couch or something.
The one kind of scary thing that happened is that Tucker had an outer ear infection last week after swimming in the lake all weekend. When we took him to the after hours doctor, they weighed him, and we realized he is only 34 pounds. :( He was 39 pounds at one point, and when we re-weighed him at home, the scale read 35 pounds. The last thing we need is for him to lose weight, so hopefully at his well-check at the pediatrician's or at his mito doctors' appointments next month, someone will have some advice. He is already getting a ton of calories, Chris's suggestion is to add more feedings at night. I think I may even ask if we can run feeds continuously overnight to boost his calorie intake. We'll see what the doctors think.
Tuesday, June 21, 2011
Family Time
Last Monday night our family headed to the beach. And not just our family of three....our much larger Lavigne family. There were 8 men, 7 women, and 8 kids in 4 different condos. It was a 4 hour drive, and I had to work Monday, so the 3 of us didn't leave until 6pm. Within 5 minutes, we were in traffic.
Tucker said "mama," I said "what?" He said, "I like to go to da beach." I cracked up laughing, he is so cute. Especially because he really does not like the beach. He likes dry sand, and he likes the waves, but he does not like the part in between where the ocean meets the sand and all of the sand sticks to him. He gets very mad and tries to clean himself off, which of course results in more sand and more mess. I think he was at the beach for a total of ten minutes in 4 days....and I was there even less! (At least I avoided the awful sunburns that some people got...ouch!)
Tucker loves traveling, loves hotels, and loves the swimming pool, so we all still had a good time. It was very hard to keep him out of the hot tub, though, which he thought was a perfect Tucker-sized pool. It was super hot, though, and I didn't want to boil my child, so he just had to stay in the big pool or stay in time out. He spent a fair amount of his days in time out....
Our family from Kentucky came down to the beach with us, and we hadn't seen them since Meagan and Chris's wedding two years ago. Tucker got attached to John Michael right away! And I mean attached....he has a buzz hair cut, which Tucker loves to rub, so I had to pry Tucker off of his head after the first day.
We bought groceries and cooked most of our meals, Chris and Maw Maw cooked breakfast every morning; and we all took turns cooking lunch and dinner. It was so nice, and on the last night, when we waited for aobut 40 minutes to get in a local restaurant, I was happy that we made that choice. Tucker was very good that night at the seafood place, he licked about 95 crackers and then a bag full of fritos, but I don't think he would have done so well if we ate out every meal. That would have really tested his patience!
So we didn't spend much time at the beach, and just spent about an hour a day at the pool, so what did we do all week?? Sleep!! It was great:) The first night we got in around 11pm and didn't get to sleep until after midnight. After that, we slept about 10-11 hours a night and then also took 2 hour naps each afternoon. We also ate alot....really too much! My BIL Chris cooked a delicious pastalaya one night, and we all ate at least two full plates.
We also did a lot of visiting and just hanging out, especially with our Kentucky cousins.
We also fought Tucker to stay out of Uncle John's room....just like at home! Well, at least he is consistent.
My grandparents had one bedroom, my Uncle John had another room, Meagan, Chris, and Aliyah had the living room, and we got the big king bedroom. That was very very nice of everyone to give us that room considering we didn't pay anything for the condo. But when Tucker needed a time out or a quiet place to zone out, it definitely came in handy. Every morning, Tucker woke up before us, just like at home. He would cry to get out of the room, go around to each room to see if everyone was awake....then once they were awake, he would go back to sleep! He is terrible about that.
We all went on a dolphin tour one morning, where we filled up a boat and they took us out in the bay to see dolphins. It was neat, and Tucker got to "drive" the boat. He was happy until it was the other kids' turn to drive the boat, then we fought him the whole time to keep him sitting with us. By the end of it, the 6 of us (Townsends and Champagnes) were tired and ready to go to the condo. Everyone else stayed out for lunch, but we left. So we drove the 20 minutes to the condo only to realize we had locked ourselves out...so we took the drive back to get Paw Paw's key, with Tucker screaming "go to da hotel!" the whole time.
That night Chris and I took Tucker to a playground we saw near the dolphin cruises. It was huge and had tons of slides and swings. He had a lot of fun playing until it was dark and we all went back to the condo...the best part was that no one was there, so Tucker did not have to wait or take turns, just play with his Mommy and Daddy, which he loved. On Thursday morning we tried to go parasailing, but it was too windy. We spent most of that day back at the hotel cooking and watching TV.
We ate seafood our last night in town, and we all enjoyed talking and eating. We all packed up Thursday night, then had a big breakfast Friday morning and headed home. John Michael and Grace rode home with us, as they are spending the whole week with my grandparents. I guess they thought riding with us would be fun :) I hope we lived up to their expectations! When we got home, my grandparents came over and picked up the kids. Tucker went around our house asking "Zhon Mikah? Zhon Mikah?" wondering where John Michael was, poor baby! So after a few hours we brought him over there to see the kids, and he sat outside with them on the swing, he was so happy.
On Saturday we took the kids to Bass Pro shop, and they seemed to really like that, but other than that I think they have had a calm week. Chris and I went back to work yesterday, and that was no fun at all. Vacation had to end, though, I am already looking forward to the next one....maybe with just Chris and me, so that I can spend more than 5 minutes on the beach ;)
Tucker said "mama," I said "what?" He said, "I like to go to da beach." I cracked up laughing, he is so cute. Especially because he really does not like the beach. He likes dry sand, and he likes the waves, but he does not like the part in between where the ocean meets the sand and all of the sand sticks to him. He gets very mad and tries to clean himself off, which of course results in more sand and more mess. I think he was at the beach for a total of ten minutes in 4 days....and I was there even less! (At least I avoided the awful sunburns that some people got...ouch!)
Tucker loves traveling, loves hotels, and loves the swimming pool, so we all still had a good time. It was very hard to keep him out of the hot tub, though, which he thought was a perfect Tucker-sized pool. It was super hot, though, and I didn't want to boil my child, so he just had to stay in the big pool or stay in time out. He spent a fair amount of his days in time out....
Our family from Kentucky came down to the beach with us, and we hadn't seen them since Meagan and Chris's wedding two years ago. Tucker got attached to John Michael right away! And I mean attached....he has a buzz hair cut, which Tucker loves to rub, so I had to pry Tucker off of his head after the first day.
We bought groceries and cooked most of our meals, Chris and Maw Maw cooked breakfast every morning; and we all took turns cooking lunch and dinner. It was so nice, and on the last night, when we waited for aobut 40 minutes to get in a local restaurant, I was happy that we made that choice. Tucker was very good that night at the seafood place, he licked about 95 crackers and then a bag full of fritos, but I don't think he would have done so well if we ate out every meal. That would have really tested his patience!
So we didn't spend much time at the beach, and just spent about an hour a day at the pool, so what did we do all week?? Sleep!! It was great:) The first night we got in around 11pm and didn't get to sleep until after midnight. After that, we slept about 10-11 hours a night and then also took 2 hour naps each afternoon. We also ate alot....really too much! My BIL Chris cooked a delicious pastalaya one night, and we all ate at least two full plates.
We also did a lot of visiting and just hanging out, especially with our Kentucky cousins.
We also fought Tucker to stay out of Uncle John's room....just like at home! Well, at least he is consistent.
My grandparents had one bedroom, my Uncle John had another room, Meagan, Chris, and Aliyah had the living room, and we got the big king bedroom. That was very very nice of everyone to give us that room considering we didn't pay anything for the condo. But when Tucker needed a time out or a quiet place to zone out, it definitely came in handy. Every morning, Tucker woke up before us, just like at home. He would cry to get out of the room, go around to each room to see if everyone was awake....then once they were awake, he would go back to sleep! He is terrible about that.
We all went on a dolphin tour one morning, where we filled up a boat and they took us out in the bay to see dolphins. It was neat, and Tucker got to "drive" the boat. He was happy until it was the other kids' turn to drive the boat, then we fought him the whole time to keep him sitting with us. By the end of it, the 6 of us (Townsends and Champagnes) were tired and ready to go to the condo. Everyone else stayed out for lunch, but we left. So we drove the 20 minutes to the condo only to realize we had locked ourselves out...so we took the drive back to get Paw Paw's key, with Tucker screaming "go to da hotel!" the whole time.
That night Chris and I took Tucker to a playground we saw near the dolphin cruises. It was huge and had tons of slides and swings. He had a lot of fun playing until it was dark and we all went back to the condo...the best part was that no one was there, so Tucker did not have to wait or take turns, just play with his Mommy and Daddy, which he loved. On Thursday morning we tried to go parasailing, but it was too windy. We spent most of that day back at the hotel cooking and watching TV.
We ate seafood our last night in town, and we all enjoyed talking and eating. We all packed up Thursday night, then had a big breakfast Friday morning and headed home. John Michael and Grace rode home with us, as they are spending the whole week with my grandparents. I guess they thought riding with us would be fun :) I hope we lived up to their expectations! When we got home, my grandparents came over and picked up the kids. Tucker went around our house asking "Zhon Mikah? Zhon Mikah?" wondering where John Michael was, poor baby! So after a few hours we brought him over there to see the kids, and he sat outside with them on the swing, he was so happy.
On Saturday we took the kids to Bass Pro shop, and they seemed to really like that, but other than that I think they have had a calm week. Chris and I went back to work yesterday, and that was no fun at all. Vacation had to end, though, I am already looking forward to the next one....maybe with just Chris and me, so that I can spend more than 5 minutes on the beach ;)
Subscribe to:
Posts (Atom)