This week, we made the trip back to Duke for Riley’s 3 year post transplant check –up. It is so hard to believe it has been three years! A lot has happened and a lot has changed. I know I don’t update very often, but just living life takes up so much time!
We left Sunday morning for the 7 hour drive to Durham, NC. Joel and I decided it would be easiest to ride together this year, and we took Katie, one of Riley’s nannies. The trip was uneventful and Riley was a very good boy. We made several stops to let him get out and walk, and the 7 hour trip ended up being about 8 ½ hours.
Riley was pretty much ready for bed by the time we checked in to the hotel. I went to bed with Riley, and as usual, he woke up sometime during the night, I believe around 12:30am. We both got up and were standing there and Riley leaned up against me. I turned a little, and as soon as I did, Riley fell over in the floor. When I helped him up, it was very obvious that he was not able to stand on his own. For about a year now, Riley has been losing the ability to move or control the right side of his body just before having a seizure, so I knew that was what was happening. I asked Katie to go wake Joel up and have him come in our room. We treated Riley with diastat and prevented the seizure from happening. So much for our first night there!
Monday, we had appointments beginning at 9am. He had his vitals taken, and now weighs 65.5 lbs. He was 48 lbs. last year! He has also grown three inches since his appointment last April. He had about 10 viles of blood taken and we are still waiting for the results of his blood work. He also saw Dr. Martin, his primary doctor since beginning this process on Monday. Everyone was very pleased with the progress Riley has made over the last year. I don’t know if it was because of being in a different place or what, but Riley was up from 1:30am – 6am. This made for a very long day for mom on Tuesday.
Tuesday, Riley was scheduled for an MRI and echocardiogram, both under general anesthesia. The happy juice he was given before being taken back that should relax him did nothing, or possibly made him more determined not to relax or sleep. Very much like his meds sometimes do at home! When he was brought back after the MRI, his body temperature had dropped to 93. He was covered with warm blankets, but that didn’t bring it up, so the nurse decided to use a “bear hug” apparatus. This is a “blanket” that looks like a pool float. It has a place to insert a tube that pumps warm air in under the blanket. This worked after a couple of hours, so we were just waiting for Riley to wake up from being sedated. When he did, he rolled over and immediately ripped the IV out of the top of his hand. Blood went everywhere! After we got that taken care of, we were able to leave for the hotel. Riley had a long day and was ready for bed pretty early. Katie was up with him a couple of times over night.
We don’t have any results yet from the tests done this week but don’t expect to find out any new information really. There are a couple of treatments we are going to try when we get more information from Dr. Martin that could be exciting. It is really good to be back home after such a long, quick trip!
Thursday, March 22, 2012
Sunday, November 27, 2011
Thanksgiving Trip to SC – What was I thinking??
It has been quite a while since I've taken a car trip with Riley, just me and him. In fact, I believe it was last summer. I remember arriving at my sister's, my family already there, and I was in tears. Wednesday night was close, but no tears.
Riley took a long nap Wednesday, which I usually say he never does, but lately, it happens a little more frequently, especially since we rarely get a decent night's sleep anymore. We started out on our trip, car fully loaded, with great expectations. I told everyone, “I'm just going to take my time, not get in a hurry, stop as much as Riley needs to, no problem. The one thing I can say, traffic had absolutely no impact on the trip, nor in making what should have been a 4 hour drive a 6 hour one. That was definitely one blessing we had going for us. Even through Atlanta, not even a hiccup. No congestion whatsoever. But I digress.
Let me back up and just say Tuesday night was my night to pack for our trip. I had all the laundry done, ready to come home from work, get Riley dinner, bath and to bed, then pack and load the car so we could leave straight from my office the next day. Riley had other plans.
It was getting close to bedtime and Riley was swinging. I recently purchased an indoor swing that mounts in any doorway, which, I might add, is the greatest invention ever! Riley loves his swing and it is great for me, too. He can be swinging while I am getting dinner ready or cleaning it up, and we are in the same room together and he is happy and I am able to do what I need to do. Riley's swing brings him much happiness, but it is also great at bedtime. It practically rocks him to sleep. He had been swinging as I was packing snacks for our road trip. He stopped swinging and was just sitting there, when I noticed his foot “jump” a couple of times. I stopped what I was doing and went over to him and as I did, I noticed his head kind of “twitch”. Usually if Riley has a seizure, his face will twitch, but this was not his face, but his whole head. Also, the leg that had jumped was his right one, which has always been the side of his body he loses control over when he has a seizure. I was pretty sure he was about to seize, and he did. Luckily, the medication we give him worked almost immediately, so there was no trip to the emergency room. He was very tired after the seizure and went right to sleep, so the packing began.
We left Wednesday and I was hopeful it would be a good trip, even with Riley taking a nap. We had barely made it to Dalton, maybe 30 minutes from home, and Riley had already ripped his pull up off. Keep in mind, this is while in a 5 point harness car seat, while still wearing jeans. I was trying to get over to an exit as quick as possible to change him, but he was quicker than I was. After a quick stop to get Riley re-dressed and back in the car seat, we were on the road again. This time, we made it about 30 more minutes to Rome, GA. He was just extremely frustrated about having to stay in his car seat. I thought, “maybe if he eats dinner and has his meds, he will sleep the rest of the way.” We stopped at Cracker Barrel, which may be a first for just Riley and me since he's been sick. It went pretty well. Except, Riley has no patience. If you are not moving fast enough for him, he gives you a little push, literally. I have come to despise this new habit of Riley's, and now, even more. Right there, in the middle of Cracker Barrel, apparently I wasn't moving fast enough for Riley. Actually, I was gathering all of our things so we could leave, but Riley was ready to go, so, I got the “little” push, and down I go, flat on my butt, but catching myself with my elbow just enough to make it hurt really bad! For those of you who don't know, I fall, a lot. You could say I'm a faller. It happens so often, it usually doesn't bother me. I just get back up, no big deal. I've even been told by many, I do it very gracefully. Well I'm not so sure how graceful being pushed down compares to just falling, but regardless, several people came running over, and yes, this was embarrassing. Since Riley and I were holding hands, he could “feel” that I had went down. I'm not sure if he knew he was the cause, but either way, when I managed to get back up with the help of a very sweet customer, he took my hand and started kissing it. Probably just a coincidence, but still very sweet.
So, back on the road we went. We stopped a few more times, a few times, pulling over at a gas station to change Riley, once to get a Popsicle, hoping to get the same result of luring him to sleep like at home, and a couple of times, just pulling over in the noisy emergency lane to find Riley's gloves that he had taken off but HAD TO HAVE. Gloves are his new thing. He has them on practically 24 hours a day, only taking them off to eat, or feel something he can't feel well enough with them on. He usually even falls asleep with them on and I take them off when he gets to sleep.
So after about eight stops, we finally made it to Spartanburg in 6 hours, instead of 4. From then on, we had a great trip. We ate lots of wonderful food including a traditional Thanksgiving dinner, followed the next night with turkey and dressing egg rolls made from leftovers, deep fried outside by a camp fire. Riley really seemed to enjoy being out by the fire with friends and family and music, and of course the food. He had chicken wings by the fire too and devoured them! Last night, we had a wonderful birthday dinner for my sister with grilled steaks, twice baked potatoes and grilled brussel sprouts. Riley has walked off everything we ate over the weekend because that is about ALL he has done. He had a great wide open place to do it, and everyone took turns walking Riley around, both inside and out. All of the fresh air did him good and he was exhausted!
Our trip back to Chattanooga today was much better. Riley slept about the first hour so we were able to get a good start. We made it in 4 ½ hours ! It is nice to be home, even though we had a great time over the long holiday weekend. So, “what was I thinking?” That it was definitely worth it!
Riley took a long nap Wednesday, which I usually say he never does, but lately, it happens a little more frequently, especially since we rarely get a decent night's sleep anymore. We started out on our trip, car fully loaded, with great expectations. I told everyone, “I'm just going to take my time, not get in a hurry, stop as much as Riley needs to, no problem. The one thing I can say, traffic had absolutely no impact on the trip, nor in making what should have been a 4 hour drive a 6 hour one. That was definitely one blessing we had going for us. Even through Atlanta, not even a hiccup. No congestion whatsoever. But I digress.
Let me back up and just say Tuesday night was my night to pack for our trip. I had all the laundry done, ready to come home from work, get Riley dinner, bath and to bed, then pack and load the car so we could leave straight from my office the next day. Riley had other plans.
It was getting close to bedtime and Riley was swinging. I recently purchased an indoor swing that mounts in any doorway, which, I might add, is the greatest invention ever! Riley loves his swing and it is great for me, too. He can be swinging while I am getting dinner ready or cleaning it up, and we are in the same room together and he is happy and I am able to do what I need to do. Riley's swing brings him much happiness, but it is also great at bedtime. It practically rocks him to sleep. He had been swinging as I was packing snacks for our road trip. He stopped swinging and was just sitting there, when I noticed his foot “jump” a couple of times. I stopped what I was doing and went over to him and as I did, I noticed his head kind of “twitch”. Usually if Riley has a seizure, his face will twitch, but this was not his face, but his whole head. Also, the leg that had jumped was his right one, which has always been the side of his body he loses control over when he has a seizure. I was pretty sure he was about to seize, and he did. Luckily, the medication we give him worked almost immediately, so there was no trip to the emergency room. He was very tired after the seizure and went right to sleep, so the packing began.
We left Wednesday and I was hopeful it would be a good trip, even with Riley taking a nap. We had barely made it to Dalton, maybe 30 minutes from home, and Riley had already ripped his pull up off. Keep in mind, this is while in a 5 point harness car seat, while still wearing jeans. I was trying to get over to an exit as quick as possible to change him, but he was quicker than I was. After a quick stop to get Riley re-dressed and back in the car seat, we were on the road again. This time, we made it about 30 more minutes to Rome, GA. He was just extremely frustrated about having to stay in his car seat. I thought, “maybe if he eats dinner and has his meds, he will sleep the rest of the way.” We stopped at Cracker Barrel, which may be a first for just Riley and me since he's been sick. It went pretty well. Except, Riley has no patience. If you are not moving fast enough for him, he gives you a little push, literally. I have come to despise this new habit of Riley's, and now, even more. Right there, in the middle of Cracker Barrel, apparently I wasn't moving fast enough for Riley. Actually, I was gathering all of our things so we could leave, but Riley was ready to go, so, I got the “little” push, and down I go, flat on my butt, but catching myself with my elbow just enough to make it hurt really bad! For those of you who don't know, I fall, a lot. You could say I'm a faller. It happens so often, it usually doesn't bother me. I just get back up, no big deal. I've even been told by many, I do it very gracefully. Well I'm not so sure how graceful being pushed down compares to just falling, but regardless, several people came running over, and yes, this was embarrassing. Since Riley and I were holding hands, he could “feel” that I had went down. I'm not sure if he knew he was the cause, but either way, when I managed to get back up with the help of a very sweet customer, he took my hand and started kissing it. Probably just a coincidence, but still very sweet.
So, back on the road we went. We stopped a few more times, a few times, pulling over at a gas station to change Riley, once to get a Popsicle, hoping to get the same result of luring him to sleep like at home, and a couple of times, just pulling over in the noisy emergency lane to find Riley's gloves that he had taken off but HAD TO HAVE. Gloves are his new thing. He has them on practically 24 hours a day, only taking them off to eat, or feel something he can't feel well enough with them on. He usually even falls asleep with them on and I take them off when he gets to sleep.
So after about eight stops, we finally made it to Spartanburg in 6 hours, instead of 4. From then on, we had a great trip. We ate lots of wonderful food including a traditional Thanksgiving dinner, followed the next night with turkey and dressing egg rolls made from leftovers, deep fried outside by a camp fire. Riley really seemed to enjoy being out by the fire with friends and family and music, and of course the food. He had chicken wings by the fire too and devoured them! Last night, we had a wonderful birthday dinner for my sister with grilled steaks, twice baked potatoes and grilled brussel sprouts. Riley has walked off everything we ate over the weekend because that is about ALL he has done. He had a great wide open place to do it, and everyone took turns walking Riley around, both inside and out. All of the fresh air did him good and he was exhausted!
Our trip back to Chattanooga today was much better. Riley slept about the first hour so we were able to get a good start. We made it in 4 ½ hours ! It is nice to be home, even though we had a great time over the long holiday weekend. So, “what was I thinking?” That it was definitely worth it!
Sunday, August 14, 2011
Riley's Adventurous First Week of School
It is hard to believe it is already “Back to School” time already! Thankfully, Riley started the school year off with his new Intervener, Erin. Erin has been hired by the school district especially for Riley. This was not an easy thing to get approved, but we are thrilled that it did. Erin is actually an interpreter, but she will be getting some training (we all did last Tuesday) from the deaf blind organization for Tennessee, TREDs. We have two great contacts that are based out of Vanderbilt in Nashville and they have been so great to work with. They will be an ongoing resource for us and for Erin, as we all learn better ways to teach and communicate with a deaf blind child.
The second day of school went well, but ended with an eventful afternoon. One of Riley's nannies, Katie, picked Riley up from school. She opened the car and put her keys on the seat. She walked Riley around to the other side of the car and put him in his car seat. He quickly proceed to lock the doors! The air was not on so the quickest way to get the car open was to call 911. The police were unable to unlock the car, but luckily, when the fire trucks arrived, they got it open. The whole time Riley was locked in the car, he was oblivious to the fact that anything was wrong. He quickly found Katie's purse and began rummaging through it. He found some RED lip gloss and had a great time rubbing it all over his face.
That night, this past Thursday, Riley began running a fever around 11pm. He woke up and and just laid around and I could tell he did not feel well. I gave Joel a call to give him a heads up, and we were both hoping we could treat the fever and not end up in the hospital. When Riley finally went back to sleep, I was relieved we had gotten through this first episode with no seizures.
The next morning when Riley and I woke up, I could feel the heat radiating from his body. It was time for some more Motrin, so I gave him some, and hoped for the same results as the night before. Unfortunately, that was not the case. Riley began seizing, so I administered the medication that we use to stop seizures and waited. This has always worked in the past, but not this time. Riley would seize for a few minutes, then it would seem to stop for about 30 seconds to a minute, then start back again. This whole time, Joel was in communication with Riley's doctor. We tried giving the medicine time to work, but we all decide it was time to take Riley to the ER, and since he was continuing to seize, Dr. Steph wanted us to take him by ambulance. I rode with Riley to the hospital. As soon as they were able to get an IV in, they gave a dose of Adavan via IV and the seizure stopped almost immediately.
Riley slept the entire day at the ER, other than getting very upset when his IV came out and it took three different tries in three different places to get one back in. After blood work, it was determined that Riley had infection somewhere in his body. We decided we were comfortable taking him home after his temp was able to be controlled all day with no more seizures. Riley is slowly getting back to his normal baseline. Joel took this photo just this morning at the park. It is hard to believe how sick Riley was just 48 hours before this was taken!
It is hard to believe it is already “Back to School” time already! Thankfully, Riley started the school year off with his new Intervener, Erin. Erin has been hired by the school district especially for Riley. This was not an easy thing to get approved, but we are thrilled that it did. Erin is actually an interpreter, but she will be getting some training (we all did last Tuesday) from the deaf blind organization for Tennessee, TREDs. We have two great contacts that are based out of Vanderbilt in Nashville and they have been so great to work with. They will be an ongoing resource for us and for Erin, as we all learn better ways to teach and communicate with a deaf blind child.
The second day of school went well, but ended with an eventful afternoon. One of Riley's nannies, Katie, picked Riley up from school. She opened the car and put her keys on the seat. She walked Riley around to the other side of the car and put him in his car seat. He quickly proceed to lock the doors! The air was not on so the quickest way to get the car open was to call 911. The police were unable to unlock the car, but luckily, when the fire trucks arrived, they got it open. The whole time Riley was locked in the car, he was oblivious to the fact that anything was wrong. He quickly found Katie's purse and began rummaging through it. He found some RED lip gloss and had a great time rubbing it all over his face.
That night, this past Thursday, Riley began running a fever around 11pm. He woke up and and just laid around and I could tell he did not feel well. I gave Joel a call to give him a heads up, and we were both hoping we could treat the fever and not end up in the hospital. When Riley finally went back to sleep, I was relieved we had gotten through this first episode with no seizures.
The next morning when Riley and I woke up, I could feel the heat radiating from his body. It was time for some more Motrin, so I gave him some, and hoped for the same results as the night before. Unfortunately, that was not the case. Riley began seizing, so I administered the medication that we use to stop seizures and waited. This has always worked in the past, but not this time. Riley would seize for a few minutes, then it would seem to stop for about 30 seconds to a minute, then start back again. This whole time, Joel was in communication with Riley's doctor. We tried giving the medicine time to work, but we all decide it was time to take Riley to the ER, and since he was continuing to seize, Dr. Steph wanted us to take him by ambulance. I rode with Riley to the hospital. As soon as they were able to get an IV in, they gave a dose of Adavan via IV and the seizure stopped almost immediately.
Riley slept the entire day at the ER, other than getting very upset when his IV came out and it took three different tries in three different places to get one back in. After blood work, it was determined that Riley had infection somewhere in his body. We decided we were comfortable taking him home after his temp was able to be controlled all day with no more seizures. Riley is slowly getting back to his normal baseline. Joel took this photo just this morning at the park. It is hard to believe how sick Riley was just 48 hours before this was taken!
Friday, May 27, 2011
Spring 2011 Update
I was talking to someone the other day and they asked me if Riley was feeling better. It occurred to me they were asking because the last they heard (or read), was that he had a seizure on Easter. I typically don’t write a post unless something has happened and I need to get an update out to all of our family and friends. Well, I decided I would write and let you all know about a few things that have happened since the last “medical” update.
Riley had a short visit with his dentist, Dr. Fred, at the end of April. This was in preparation for an upcoming cleaning that will be done under sedation sometime in June. This will be combined with an eye exam at the same time, so he will only need to be sedated once. The last time Riley saw Dr. Fred was the week before we left for Duke in 2009. He had to have his appliance removed prior to undergoing chemo and the transplant. His nanny at the time, Alicia, helped me get him there. After Dr. Fred checked him out, VERY quickly, I was telling the hygienist about the last time we had been there. It was a surprise to me when she said she knew, she remembered Riley. She said, “Do you know what Riley said to me the last time he was here?” “No”, I said, “what?” She said, “I asked if his name was Riley.’ He told me, “Yes, but my mom calls me Riley Greene Jeans.” That was all it took to start the waterworks! She said she continues to follow Riley on Carepages and gives Dr. Fred updates.
Also at the end of April, Riley and I went on vacation. This was the first vacation either of us had went anywhere since 2008, before Riley got sick. My family rented a house on Isle of Palms in Charleston, SC. Lexi, Riley’s former nanny was able to go with us as well. We had a surprisingly easy drive with Riley. The first day, we put Riley in his wet suit and out to the beach we went. Lexi took Riley out into the ocean while I videoed and took pictures and I could hear his excited squeals all the way back on the shore. He loved it! As I suspected and predicted, the first thing he tried was eating sand. After a few attempts, he decided it wasn’t very tasty and that was not a problem any more. Riley enjoyed taking long walks on the beach with his Grammy, with nothing to slow him down or run into. It was a great week being with everyone and Riley made a few connections while we were there. He said Grammy and Diane (my sister) while we were there.
After getting back from vacation, we were faced with having to hire a new nanny. Alicia has moved back to her hometown of Paris, TN, while her husband prepares to deploy to Afghanistan at the end of summer. Luckily, we found someone pretty quickly. Amanda, yes, another “A”, has been with Riley for about 2 weeks now. She is very sharp and on the ball, and we think she is going to work out just fine. She will be going on vacation to Florida with Riley, Joel and his family next week, so Riley gets more beach time! I will miss him terribly but look forward to some time to catch up on sleep!
Riley went to a birthday party for Ben, one of my best friend Shannon’s son, at Pump It Up a few weeks ago. This was an adventure for Riley! My other best friend, Brandy, decided Riley needed to go down the slide. He did, several times, and absolutely LOVED IT! I think this is going to be a favorite activity for him this summer on days when it is rainy or too hot! While we were at Pump It Up, He actually said the words, “Pump It”. This was big. Riley knew where he was and was able to verbally express it. Since tapering some of Riley’s meds after we got back from Duke at the end of March, Joel and I have both noticed Riley seems to be much more clear and is starting to verbalize more, mostly saying some of the things he said when he first got sick. The last weekend I had Riley, he was on a roll. He said “pizza”, “walking home”, “swimming (while we were in the swimming pool)”, and “Regan Winnie”. Regan was a classmate of Riley’s at Hickory Valley Christian School before he got sick and he has always talked about her being a cheerleader! He also continues to talk about his very best friend in the whole world, Autumn. He still says some other small words such as “bath”, “eat”, and “pee” as well. Joel has been talking to Riley about their upcoming trip to Florida and actually heard Riley say, “Florida”. This is all exciting to us because up until now, most of his verbalizations have been sounds or words we could not make out.
That brings me to the biggest thing that has been going on over the past month or so. The behavioral doctor Riley sees at UNC each time we go back to Duke for check-ups, highly recommended Riley be provided with an Intervener. For those of you not familiar with this term, we were not either. Riley is now classified as “deafblind”. This term applies to someone who has duel sensory loss, significant loss of vision and hearing. While Riley’s eyes and ears are both “healthy”, he has no functional vision or hearing. Basically, his problems are not with the hardware, but rather how the information is or is not transmitted in the brain. After being told about deaf blindness, we were also told there is a program, The Deaf Blind Project, which is federally funded in every state. The Tennessee organization we were connected with is called TREDS – Tennessee Project for Individuals with Combined Hearing and Vision Loss. We have learned so much since being put in touch with this organization. We now believe Riley truly does have the capability to actually learn and become more independent. The key is the Intervener. An Intervener would be at school every day with Riley and would be trained on how to teach deafblind children. This is NOT the same as teaching someone who is deaf, or someone who is blind. Deaf blindness is a condition in which an individual has unique communication, learning and mobility challenges. Riley needs this focused, constant one on one interaction in order to bring his world to him. We have been working with the Hamilton County Department of Education to get approval for this for Riley. Unfortunately, it is beginning to feel like we are not “working with” but rather “fighting for”, this. I won’t go into detail on this, as it is still very much an unresolved issue, but we feel we are being forced to take this to a whole other level we were hoping we wouldn’t have to. I know those of you who have children know you will do ANYTHING to fulfill the wants and needs of your child.
Last but not least, a clothes update. Riley is doing a little better. Several months ago, I ordered a wet suit or scuba suit for Riley. He hated it at first, but after being forced to wear it while driving in the car so he couldn’t tear pull-ups and have accidents, he actually started wanting to wear it. Since it has gotten a little warm for the wet suit, Joel and Lena found someone to make Riley some summer suits. This basically consists of mesh type shorts and rash guard shirts being sewn together with a zipper up the back. After spending a small fortune for the right kind of clothing and seamstress charges, we now have several acceptable outfits for Riley to wear! Still no shoes, but at least he is able to go places now that he is dressed.
That pretty much brings everyone up to speed. Riley leaves for vacation (again) on Monday, so I’m sure that will bring with it more stories! I hope everyone has a safe and happy Memorial Day weekend!
Sunday, April 24, 2011
Happy Easter (not so much) April 24, 2011
Happy Easter (not so much)
This Easter started out with Riley waking at 7am. It was a good night. Riley went to bed around 9pm and didn't wake up once. He woke up at 7am very happy, bouncing on the bed as he often does. When I had laid around and kept him in the bed as long as I could, we finally got up. He had some oatmeal and then he was ready to walk. We started doing laps around the house like we typically do and Riley's right foot kept turning on its side. This happened several times and he kept stumbling. Riley had walked barefoot outside the night before and stumped his toes a couple of times, so I thought they might have been bothering him. Finally one of the times he stumbled, he just fell all the way to the ground. When he could not stand back up, I knew something was wrong. I called Joel and told him Riley could not stand up or walk and couldn't move his right leg. Joel asked me to give Riley Adavan, which is what we always pre-treat Riley with if we think he might have a seizure.
By the time Joel got to our house, Riley was no longer able to move his right arm. He was laying in the floor, trying to pull himself across the floor since he couldn't walk. I called his doctor and she said she would meet us at the hospital. While I was changing in to clothes to go to the hospital, Joel watched Riley and it was only a few minutes before I heard him say Riley was having a seizure. We gave Riley diastat to treat the seizure and it worked very quickly. Joel and I were both pretty sure we knew the cause of the seizure. Riley had began a new medication Friday night that we were hoping would help with some of Riley's compulsive behaviors, namely, not wanting to keep any clothes on. We knew a side effect of the medication was that it lowered the threshold for having seizures. Like with everything, if it can happen, it will with Riley.
We left for the hospital and by this time, Riley was already getting some movement back in the right side of his body, although he was leaning to one side. By the time we got to the hospital, Riley was very unhappy. He was crying real tears, which very, very rarely happens and he was moaning in a high pitched voice. Once in a room in emergency, the doctor brought Riley a popsicle and this helped his mood instantly. When Riley's doctor got to the hospital, she was amazed at how well Riley was doing. We all decided there was no need to do any kind of treatment, blood work or tests since we were already sure of the reason for the seizure. After observing him in the emergency room a little while, we were able to take him home. Other than many, many popsicles in the emergency room, the other thing Riley desperately wanted was a bath. He asked over and over and was very upset. Once we got back to the house, Riley finally got his bath and was much happier. Once again, he was ready to walk, but he was very unstable and wobbly. Riley and I did okay for a little while, then Joel gave me a break and took Riley for about an hour and a half this afternoon. He got a little stronger throughout the day, but is still continuing to lean a good bit and is unsteady.
Along with everything else, we are in the process of switching nannies. Alicia, Riley's current nanny, will be moving back to her home town of Paris, TN to go back to school. We have a new nanny, Amanda, who will work a few hours with us this week and will begin full time after she finishes final exams. I will be home with Riley tomorrow and hope it will be a very uneventful day! He has a dentist appointment at noon which should be interesting. He will be having his teeth cleaned under sedation soon, but his dentist needs to see him beforehand. He has no idea what he is in for! It will be a long, rough week getting through this transition, not to mention the possibilities we face with this new medication (not only did it cause a seizure, he has been a little monster for the past few days). We can use all the prayers we can get.
Thank you to Debbie, Brandy and Shannon for your help today!
This Easter started out with Riley waking at 7am. It was a good night. Riley went to bed around 9pm and didn't wake up once. He woke up at 7am very happy, bouncing on the bed as he often does. When I had laid around and kept him in the bed as long as I could, we finally got up. He had some oatmeal and then he was ready to walk. We started doing laps around the house like we typically do and Riley's right foot kept turning on its side. This happened several times and he kept stumbling. Riley had walked barefoot outside the night before and stumped his toes a couple of times, so I thought they might have been bothering him. Finally one of the times he stumbled, he just fell all the way to the ground. When he could not stand back up, I knew something was wrong. I called Joel and told him Riley could not stand up or walk and couldn't move his right leg. Joel asked me to give Riley Adavan, which is what we always pre-treat Riley with if we think he might have a seizure.
By the time Joel got to our house, Riley was no longer able to move his right arm. He was laying in the floor, trying to pull himself across the floor since he couldn't walk. I called his doctor and she said she would meet us at the hospital. While I was changing in to clothes to go to the hospital, Joel watched Riley and it was only a few minutes before I heard him say Riley was having a seizure. We gave Riley diastat to treat the seizure and it worked very quickly. Joel and I were both pretty sure we knew the cause of the seizure. Riley had began a new medication Friday night that we were hoping would help with some of Riley's compulsive behaviors, namely, not wanting to keep any clothes on. We knew a side effect of the medication was that it lowered the threshold for having seizures. Like with everything, if it can happen, it will with Riley.
We left for the hospital and by this time, Riley was already getting some movement back in the right side of his body, although he was leaning to one side. By the time we got to the hospital, Riley was very unhappy. He was crying real tears, which very, very rarely happens and he was moaning in a high pitched voice. Once in a room in emergency, the doctor brought Riley a popsicle and this helped his mood instantly. When Riley's doctor got to the hospital, she was amazed at how well Riley was doing. We all decided there was no need to do any kind of treatment, blood work or tests since we were already sure of the reason for the seizure. After observing him in the emergency room a little while, we were able to take him home. Other than many, many popsicles in the emergency room, the other thing Riley desperately wanted was a bath. He asked over and over and was very upset. Once we got back to the house, Riley finally got his bath and was much happier. Once again, he was ready to walk, but he was very unstable and wobbly. Riley and I did okay for a little while, then Joel gave me a break and took Riley for about an hour and a half this afternoon. He got a little stronger throughout the day, but is still continuing to lean a good bit and is unsteady.
Along with everything else, we are in the process of switching nannies. Alicia, Riley's current nanny, will be moving back to her home town of Paris, TN to go back to school. We have a new nanny, Amanda, who will work a few hours with us this week and will begin full time after she finishes final exams. I will be home with Riley tomorrow and hope it will be a very uneventful day! He has a dentist appointment at noon which should be interesting. He will be having his teeth cleaned under sedation soon, but his dentist needs to see him beforehand. He has no idea what he is in for! It will be a long, rough week getting through this transition, not to mention the possibilities we face with this new medication (not only did it cause a seizure, he has been a little monster for the past few days). We can use all the prayers we can get.
Thank you to Debbie, Brandy and Shannon for your help today!
Thursday, March 24, 2011
3/24/11 Final day at Duke
I didn't update yesterday because Riley woke up at 2am yesterday morning and never went back to sleep, so needless to say, I was a little tired last night! He has been sleeping so well and hasn't had a night up like this in a very long time. Fortunately, he woke up in a great mood. Riley loves to walk now, and all the time, so we made circles around the hotel room for quite awhile. I would put him back in the bed to try and get him back to sleep, but he would just get on his knees and bounce all over the bed. A couple of times I dozed for a minute and would wake up when Riley got out of the bed to find him standing on the side of the bed ready for another walk.
As far as tests yesterday, it was Riley's lightest day. He had nerve conduction tests which involves sticking electrodes in different places on his legs and arms and delivering electrical shocks and recording the reaction. I have had the same test several times and it is not enjoyable, but Riley was a trooper. He got very quite and seemed to be curious about what was being done, but didn't really seem to mind it. We were free to leave after this, but Joel and I decided to ride by the clinic and have them take a look at Ri. He felt a little warm and had developed a little cough. Since he was being sedated today, we just wanted to make sure he was still going to be good to go. Also, the only blood pressure reading they have been able to get this weak was low, so we also wanted to make sure it was in the normal range as well. They decided to take a sample from Riley's nose to check for some viruses as well. We assume everything checked out because they didn't tell us any results and they went ahead with today's procedures. We are probably just a wee bit paranoid anyway!
After clinic, Riley, my mom and I headed back to the hotel for the rest of the day. It would be so nice to be able to spend some of Riley's spring break, which is this week, doing something fun while we are here, but since there aren't any nudist stores or attractions around the area, we are stuck at the hotel. Riley and I did swim the past two days. He enjoys it but thinks he is in the bath, so he can't figure out why he is being forced to wear a pull up in the water. Besides the pool, Riley loves taking long walks down the hotel corridors. We have definitely gotten our exercise this week! Last night, we had a visit from one of Riley's nurses from the bone marrow unit, Alicia, and that was great. The night before, Connie, another of his favorites, came to visit with us and have dinner with me as well. It has been nice seeing our old friends. Riley's head nurse, Amanda, will be at clinic today so we hope to spend some time with her as well. We saw her quickly during our unexpected trip to clinic yesterday. After a long day, Riley was ready for bed and did great. He didn't wake up all night, which usually doesn't happen unless he is sick. Being up since 2am will do that to you as wel1!
Today will be a much busier day. We were told to be at the hospital to check in at 7:30am although were we were suppose to check in did not open until 8am. Didn't make much since to us either! After getting checked in, we were taken back to the MRI area. I am in our own waiting room right now since I can't go near the MRI machine because of my implant for delivering meds to my spine. I guess Joel and Riley have been back for about 30 minutes. Getting them back there was not so easy. Riley was given a liquid med that has suppose to help relax him before getting his IV. It may have made him giggle a little more than usual, but other than that, wasn't much help. Putting the IV in itself wasn't too bad. Riley has gotten where he really doesn't mind “sticks” anymore. What he did mind was 4 of us holding him down while we waiting the 10 minutes for the sedative to go in and put him to sleep. He is sooooo strong. Joel had the legs, one nurse had the arm with the IV in it, I had the other arm while also trying to talk to Riley to calm him down, and one nurse did as much as she could while trying to write at the same time. Prior to going in for the procedures, (he will have MRI, EEG and echo cardiogram while sedated), Riley's blood pressure was pretty high. We also were reminded his heart rate got pretty low during his last sedation, so we were told how they would be delivering the sedating meds to try and keep this under control. Just now, I heard the anesthesiologist say they had given Riley something for his blood pressure because it has continued to stay high. He also said his heart rate is hanging out in the high 40s, which is low, but typical with the sedative they are using. He had told us before Riley went under he wouldn't be too concerned unless it dropped to the low 40s. Joel had the choice of going back with Riley or not, but I really wanted him back there and he wanted to go as well. Even if Riley doesn't know he's there, it still gives me some peace of mind.
After these three procedures, which combined will take several hours, we have our clinic appointment with Dr. Martin. He will check Riley over, and hopefully be able to summarize this week's tests for us. After that, we are out of here, hopefully until next year. Mom and I will be going back through Spartanburg to my sister's. I'm sure everyone there will miss Riley. We stopped there overnight on our trip here and Riley had a ball there, as he always does. But this leg of the trip, Riley will be going back home with Joel and I'm sure he will be happy to be in those familiar surroundings as well. I hope the drive straight through to Chattanooga is easy, safe and stress-free! I will stay in Spartanburg until Saturday morning and although I will miss having my little side kick with me, I will enjoy some relaxation, good food and a good audio book on my quite ride back to Chattanooga!
Hope everyone has a safe and happy weekend. I probably won't update again unless there is something new to tell, which we aren't really expecting from these last few tests.
As far as tests yesterday, it was Riley's lightest day. He had nerve conduction tests which involves sticking electrodes in different places on his legs and arms and delivering electrical shocks and recording the reaction. I have had the same test several times and it is not enjoyable, but Riley was a trooper. He got very quite and seemed to be curious about what was being done, but didn't really seem to mind it. We were free to leave after this, but Joel and I decided to ride by the clinic and have them take a look at Ri. He felt a little warm and had developed a little cough. Since he was being sedated today, we just wanted to make sure he was still going to be good to go. Also, the only blood pressure reading they have been able to get this weak was low, so we also wanted to make sure it was in the normal range as well. They decided to take a sample from Riley's nose to check for some viruses as well. We assume everything checked out because they didn't tell us any results and they went ahead with today's procedures. We are probably just a wee bit paranoid anyway!
After clinic, Riley, my mom and I headed back to the hotel for the rest of the day. It would be so nice to be able to spend some of Riley's spring break, which is this week, doing something fun while we are here, but since there aren't any nudist stores or attractions around the area, we are stuck at the hotel. Riley and I did swim the past two days. He enjoys it but thinks he is in the bath, so he can't figure out why he is being forced to wear a pull up in the water. Besides the pool, Riley loves taking long walks down the hotel corridors. We have definitely gotten our exercise this week! Last night, we had a visit from one of Riley's nurses from the bone marrow unit, Alicia, and that was great. The night before, Connie, another of his favorites, came to visit with us and have dinner with me as well. It has been nice seeing our old friends. Riley's head nurse, Amanda, will be at clinic today so we hope to spend some time with her as well. We saw her quickly during our unexpected trip to clinic yesterday. After a long day, Riley was ready for bed and did great. He didn't wake up all night, which usually doesn't happen unless he is sick. Being up since 2am will do that to you as wel1!
Today will be a much busier day. We were told to be at the hospital to check in at 7:30am although were we were suppose to check in did not open until 8am. Didn't make much since to us either! After getting checked in, we were taken back to the MRI area. I am in our own waiting room right now since I can't go near the MRI machine because of my implant for delivering meds to my spine. I guess Joel and Riley have been back for about 30 minutes. Getting them back there was not so easy. Riley was given a liquid med that has suppose to help relax him before getting his IV. It may have made him giggle a little more than usual, but other than that, wasn't much help. Putting the IV in itself wasn't too bad. Riley has gotten where he really doesn't mind “sticks” anymore. What he did mind was 4 of us holding him down while we waiting the 10 minutes for the sedative to go in and put him to sleep. He is sooooo strong. Joel had the legs, one nurse had the arm with the IV in it, I had the other arm while also trying to talk to Riley to calm him down, and one nurse did as much as she could while trying to write at the same time. Prior to going in for the procedures, (he will have MRI, EEG and echo cardiogram while sedated), Riley's blood pressure was pretty high. We also were reminded his heart rate got pretty low during his last sedation, so we were told how they would be delivering the sedating meds to try and keep this under control. Just now, I heard the anesthesiologist say they had given Riley something for his blood pressure because it has continued to stay high. He also said his heart rate is hanging out in the high 40s, which is low, but typical with the sedative they are using. He had told us before Riley went under he wouldn't be too concerned unless it dropped to the low 40s. Joel had the choice of going back with Riley or not, but I really wanted him back there and he wanted to go as well. Even if Riley doesn't know he's there, it still gives me some peace of mind.
After these three procedures, which combined will take several hours, we have our clinic appointment with Dr. Martin. He will check Riley over, and hopefully be able to summarize this week's tests for us. After that, we are out of here, hopefully until next year. Mom and I will be going back through Spartanburg to my sister's. I'm sure everyone there will miss Riley. We stopped there overnight on our trip here and Riley had a ball there, as he always does. But this leg of the trip, Riley will be going back home with Joel and I'm sure he will be happy to be in those familiar surroundings as well. I hope the drive straight through to Chattanooga is easy, safe and stress-free! I will stay in Spartanburg until Saturday morning and although I will miss having my little side kick with me, I will enjoy some relaxation, good food and a good audio book on my quite ride back to Chattanooga!
Hope everyone has a safe and happy weekend. I probably won't update again unless there is something new to tell, which we aren't really expecting from these last few tests.
Tuesday, March 22, 2011
3/22/11 - Day 2 of 2 year studies
We started the day out meeting with the endocrinologist. Apparently Riley has only grown 1 inch since November 2009. It seems hard to believe because sometimes he looks so much taller to us. His growth has really slowed and we discussed the option of putting Riley on growth hormones, but I believe me, Joel and the doctor all came to the conclusion, that because of the constant care Riley requires, him staying a little smaller may not be a bad thing, and not having the growth hormone is not going to have any adverse effects.
This appointment was followed with pulmonary testing. Riley actually did better at participating than we thought he would. He had to wear a mask and breath deeply to try and register the results. After pulmonary, Riley had a hearing test that he didn't participate with quite as well. We are going to have to schedule this test in Chattanooga with sedation. He will be sedated Thursday for several tests, but they don't want to keep him out any longer to have the additional hearing tests.
After having labs drawn and vitals, we finished the day with a chest xray. After getting back to the hotel this afternoon, we had a great afternoon, including swimming, and LOTS of walking down the hotel hallways.
Tomorrow should be a an interesting day with nerve conductions tests.
This appointment was followed with pulmonary testing. Riley actually did better at participating than we thought he would. He had to wear a mask and breath deeply to try and register the results. After pulmonary, Riley had a hearing test that he didn't participate with quite as well. We are going to have to schedule this test in Chattanooga with sedation. He will be sedated Thursday for several tests, but they don't want to keep him out any longer to have the additional hearing tests.
After having labs drawn and vitals, we finished the day with a chest xray. After getting back to the hotel this afternoon, we had a great afternoon, including swimming, and LOTS of walking down the hotel hallways.
Tomorrow should be a an interesting day with nerve conductions tests.
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