Tucker had an EEG (test to see if he has seizures) scheduled for Dec 27-28. The test takes 23 hours, and he had to be hooked up to many leads for the test. His mito dr ordered it, so we went to Houston for the test.
On the day after Christmas, Mom, Gina, her best friend, Jene'e, and I left for LC. Our plan was to spend the evening and night with the Poche's, then leave for Houston early on the 27th. Well, we didn't get on the road until about 630pm ;) so from about 2pm until 930 when we got to their house, all we heard was "Go to Aunt Kim's! Go to Unca David's! Go see Mogan and Gace!!!" over and over.... :/ Then by the time we got there Tucker definitely needed to go to sleep, so I felt awful. We stopped for dinner on the way, and Tucker got his own kid-sized burger and fries. He still doesn't eat any of it, but his feelings get hurt if he doesn't have his own food. He took my ranch dressing and dipped his fries in it, then licked the ranch sauce off....yes, he is a Townsend! haha
We stopped once more to use the potty, even though Tucker just wanted to drive straight to LC. I told him I was going to be mad if he pee peed in his carseat!
Tucker had about 15 minutes with his cousins, then it was time for him to go to bed. Mom, Gina, and Jene'e stayed up with the girls watching Soul Surfer while we went to sleep....well, after about 30 minutes of Tucker trying to sneak out of the bed to go see Unca David! lol
The next morning we woke up, rushed out by 730, even though we needed to leave for 7. Our trip to Houston was quick and painless, as Tucker, Gina, and Jene'e slept most of the way. When the city skyline came into view, the girls were so excited! It is obvious that we live out in the country, they loved every building and park. They had to take pictures of themselves next to every neat looking window, door, etc. Having them along made us more excited to be there, as they found everything to be so interesting. The hospital really is in a nice part of town, right next to a big park, so I totally understand why they like it.
We checked in at admissions, then within 10 minutes we were up at the EMU (Epilepsy Monitoring Unit). The admissions clerk asked if we needed a guide, I told her we could handle it. (haha) So when we got up to the EMU, there wasn't anyone waiting for us. We found the room he was in, and we just sat around for a while. There was a twin bed for Tucker, an arm chair that folded out to a small bed, and a couch that folded out into a bed. So there was plenty of room for all of us, luckily. I went to find a nurse, and I also found a big playroom. The nurse came in to take Tucker's vitals and I went to the playroom to pick out a few trucks for Tucker. Gina also picked out Guess Who and Life for them to play.
The tech came in to put the leads on Tucker's head. There were about 40 sticky leads that needed to be attached to Tucker's head and face to monitor his brain wave activity. It took the tech more than 30 minutes to attach them all, and Tucker behaved perfectly while this was done.....I was in awe. Mom and I had to sing "night night, Teddy Bear" about 100 times, but that was expected! Tucker is extremely tender headed (he cries in the morning when I brush his hair, even with soft brush), and he likes to rub his hair when he is stressed out. Of course this was not an option as the leads were on his head, so I lay next to him and he rubbed my hair instead. After the leads were on, the tech wrapped Tucker's head with several gauze-like towels, then wrapped his chin as well. He looked like a Sock Monkey, Rapunzel (he had a long gauze ponytail), and a nun. So we of course made fun of him for the next 23 hours ;)
The leads were long enough that Tucker could go to the bathroom, and move between the couch, bed, and rocking chair. But he couldn't leave the room. The rest of us could leave, of course, and we took turn leaving when it was time to eat. Tucker caught on to this quickly, and he started going to the door saying "it's time to eat" trying to get his turn to leave! We checked in around 1030am, and by 1pm it was time for Tucker's nap. Mom took the teenagers to go stretch their legs and get lunch (they ended up at Smashburger-yum!), while I settled in to rock Tucker and eat my complimentary hospital lunch. I am so proud of mom! She drove around Houston without me, haha. It was only a few streets over, but still, she hadn't done that before. Jene'e doesn't usually eat hamburgers, but she loved Smashburger (so does everyone). Tucker took a good nap, after asking me about 2343098430 times "they comin' back?" "they go to Aunt Kim's?" Poor kid thought they had dropped us off and went back to LC!
They came back around 3, and we just spent a lazy afternoon together, reading and playing board games. Tucker loved being in the middle of Jene'e and Gina's games, taking all of the pieces from them! Around 5, I decided to take a break, so I took the girls out to get dinner and to unpack at the nearby hotel. That way when mom and the girls left the hospital at 9pm they wouldn't have to bring in all their luggage in the dark. So anyways, G and J loved the room, they were just sad that Tucker couldn't stay too (staying over at hotels is one of his favorite things). We went and picked up dinner, then headed back to the hospital. That hospital is truly a maze, and it was pretty scary in the dark. So I thought I had a good solution when I parked in the hospital parking garage instead of the physician's tower garage. We parked there, and we brought the food in to Tucker's room. He and Nana had a good time rocking while we were gone, and Tucker was so excited to have his own little pizza to lick while we ate pasta and breadsticks. The night nurse came in to check Tucker's vitals, and he was more than eager to help out. He held out his arm and held the thermometer for his temperature, then he held out his arm for the blood pressure monitor (he usually fights us on this), and he put the pulse ox monitor right on his toe, then stared at the screen, like he was going to interpret the numbers for the nurse. When she was done and ready to leave, he wouldn't let her! So she left the pulse ox with us for about 5 more minutes before she finally had to take it.
Mom, Gina, and Jene'e left at 9pm. Of course my great plan was not so great, so about 5 minutes later they called me because they were lost in the hospital. They ended up finding a doctor that told them how to get out, then they made it to the hotel and were ok. They didn't come back until 11am the next morning, which was fine, because Tucker pretty much slept from 9pm that night until 10am the next day. I packed everything up, and at 10am the tech came back to take all of the leads off. It was pretty painful. He had to use acetone to get the sticky stuff to come off, which Tucker did not like. Then even after the leads were off, most of the glue was still there, so I had to put him in the shower and scrub his head. Even after that, he looked like he had the worst case of dandruff ever! But I knew at that point I couldn't push it, so I just left him like that.
We had plans to meet another family, the Pohlas, at the Houston Children's Museum at 1 (a friend of mine Casey had sent me free passes, and the Houston museum is rated #1 in the US). So we packed all of our luggage and went to find some lunch. Tucker was so happy to be out of the hospital, even though he was just there for less than a day. He wanted pizza again, and the only pizza place we could find was a carry-out only place. So we ordered a large pizza and walked across the street to a small park. It was so nice to eat outdoors and enjoy the scenery after being inside for 24 hours. The weather really was perfect. We went to the museum for 1, and it looked like everyone else in Houston had the same ideas as us. We met up with Pohlas, and it was nice to see them and their 3 boys. It was very crowded in the museum, so we all lost touch with eachother a lot, but Tucker loved it. There was this huge climbing apparatus, but Tucker was too scared to go in there with the bigger kids. We found an area that was set up like a kids' town, it had a grocery store, restaurant, news studio, and also a police department. Tucker spent the rest of his time going from the police car to the ambulance. He loved it, and even Christmas bear got to drive the ambulance. G and J went around the whole museum and I hope learned a lot from the different exhibits. Jene'e actually told me at one point "Leigh, you are the coolest mom ever" since I took the time to bring them to the museum. That made me so happy, because most of the time I don't feel very cool! hahaha
After about an hour of being in the crowded museum, Tucker had enough and I was sensing a huge meltdown coming. So we said our good-byes and got in the car, headed back to LC for a longer stay. We met Aunt Kim and the girls at their local McD's which was just remodeled to put in a huge playplace. Tucker loved it. He was very unsure of the steps at first, so Grace and Morgan went up with him once, and that was all that it took. He was going up and down, over and over, even when the bigger kids went up the steps and couldn't find their way back out.
When we got their house, we stayed up for a while before going to bed. Tucker got to see Uncle David for a little while before bed, so he was happy. I got to talk to Morgan for a while, the girls are getting too old! The next morning we slept in and took our time getting ready to leave. Well, everyone except Tucker, of course. He woke up early and went to all of the girls saying "get up! get up! play wit me!" This started a fight between him and G:
Tucker: "get up!"
Gina: "no, you get out!"
Tucker: "no, you get up!"
and this went on.....hahaha
Of course, as soon as everyone gave in and woke up, Tucker was ready for a "map". He slept for about an hour while we all waited for him to wake up so we could finally play.
At some point I decided that Tucker's dandruff look was really too much. So I sat him down in the bathroom to brush the glue out of his hair. I knew it would be painful, but that stuff had to come out! Grace came in, gave Tucker his bear, and held his hand while I brushed his hair. It was so incrediblly sweet, and Tucker sat through the whole thing. With Tucker looking much better, the kids played outside for about an hour before we left at lunchtime. We were sad to leave them, as always, but we will see them soon.
We should get the results from the EEG in the next few weeks. Tucker's last EEG was run over 3 years ago, and that one came back normal. Tucker sometimes has staring spells, and the dr. wants to make sure he is ok.
When I got home and told Chris all about the trip, he said "Wow, that sounds like pure hell." Hahahaha, and I thought it was the most fun I'd had in a while! I guess I don't get out much ;) No housework, cooking, running errands, or going to work for a few days? Sounds great, right?
Having the teenagers and mom along with us for this trip made it really feel like more of a vacation than a medical trip, even though poor Tucker didn't to "go to da hotayal!" Maybe next time!
Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts
Thursday, January 12, 2012
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!
Monday, April 26, 2010
More Tests! And a Busy Week
This morning Mrs. Mia and I took Tucker to Oschner in New Orleans for an endoscopy, which is a scope of his esophagus, tummy, and small intestine. The GI dr. said everything looks normal, but she will call me later this week with results from the biopsies of each part of his digestive tract. If she had seen inflammation or anything, that would have helped to explain his feeding issues, at least a little! So we will wait for the results, I almost fell out of the chair when she said she will call me this week. I said, "are you sure? that soon?? And we don't have to drive back out here to get the results?" That is nice, since it is quite a drive. We have done a lot of waiting this past year, and a lot of driving!
This is a pic of him, after he came out of anesthesia. He has been having problems with anesthesia lately, where he almost can not breathe without the ET tube. It is very scary for the docs (and us!), so I was very pleased that everything went well this time. The anesthesiologist woke him up very slowly, and made sure he was making breathing efforts before he extibated him. So that seemed to have worked. Then we waited for almost an hour for him to wake up, he is so peaceful when he sleeps! It's once he's up that is the problem, because they give him Versed, aka "goofy juice" so he is like a drunk kid once he wakes up! He tries to run and climb, but he literally can not coordinate any movement. He refuses to just sit still, though, because he thinks he can do whatever he wants! This makes for a few interesting, but frustrating, hours. Today was not so bad, though.
Chris was on-call last weekend, which meant we could make no plans, just in case he got called out to work. On Saturday we had some very special plans, though, so Gina and I took Tucker without Chris. Our cousin Claire had a "No Mo' Chemo" party Saturday evening, to celebrate her end of chemo treatment. Tucker can be crazy at parties, but we took him anyways to congratulate Claire. She looked great, and it was nice to see that side of the family. There was a pool and an inflatable water slide. Tucker was a little hesitant about the pool, but he loved the big water slide! After one ride, that was enough for me, though! I think all the moms watched us go down the slide, wondering how crazy was I? Tucker loves all of the sensory input from crazy rides like that, he is so small, but he is a dare-devil. So we came off the slide, with me about to cry, and Tucker clawing his way out of my arms to go back. I said "no!" and that was pretty much the end of our party time! We went inside and changed Tuck back into his dry clothes, then headed back home.
Tucker has always loved water, but it has been a "no no" for most of his life due to the trach. For those who don't remember, back in April of 2008 he took a nose dive in the bath tub (dare devil!!), and aspirated bath water into his trach, earning us one night in the ER and one night in the PICU. With the heat here in the summer, having a water ban is pretty cruel, so last year I let him play in sprinklers if the spray did not go above his tummy, and I let him sit in pools and the bathtub as long as the water was not above his g-button. He got his trach out in November, but his stoma (hole) did not actually close until February when the ENT closed it surgically. So this will be our first spring and summer where I can let Tucker really enjoy the water. So far, it has been great. Dad sprayed him and Sophie with the water hose last weekend,
and then Tucker tried the pool and water slide on Saturday. We want to have a "naked neck" party sometime this summer, and Chris has insisted that we rent a water slide. I thought Tucker was too little for that (wrong again!), but it looks like we will be having a party and a slide at some point.
The next few weeks will be crazy busy! Tucker sees several specialists every 6 months, and some of those appointments are due. We are also having an IEP meeting to plan for Tucker's 2010-2011 school year, as well as having meetings with his new teacher. Tucker takes all of this like a pro, though, it is me I am worried about!
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