tag:blogger.com,1999:blog-47046797015220120232024-03-18T22:55:02.394-04:00teamgreene: Our life after transplantA continuation of our journey from pre-transplant to post-transplant and beyond.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.comBlogger67125tag:blogger.com,1999:blog-4704679701522012023.post-33438131122648372482012-03-22T13:43:00.002-04:002012-03-22T13:45:04.147-04:00March 2012 - Three Year Transplant Follow UpThis 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! <br /><br />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. <br /><br /> 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!<br /><br />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.<br /><br />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. <br /><br />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!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com1tag:blogger.com,1999:blog-4704679701522012023.post-46430667548016614522011-11-27T20:39:00.002-05:002011-11-27T21:05:44.864-05:00Thanksgiving 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.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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. <br /><br /> 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. <br /><br />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!<br /><br />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! <br /><object id="BLOG_video-FAILED" class="BLOG_video_class" contentid="FAILED" height="266" width="320"></object>mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-79659162789203980042011-08-14T17:42:00.003-04:002011-08-14T17:46:46.640-04:00Riley's Adventurous First Week of School
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<br />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.
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<br />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.
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<br />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.
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<br />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.
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<br />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!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4wY1UUOAv5QgYrN8exHqUF1nO-g5oB7lzxhSOYUyE63-DGXF1hRkYfiteJ7uqZHO5f3ySz5whHzMiPIND3cNQrM9QYweUZNoMCf5X8NDR5Btg8vvN_PwBrN7lFadmpYD3ctDuqijD93UM/s1600/8.14.11+2+days+after+1+hour+seizure.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4wY1UUOAv5QgYrN8exHqUF1nO-g5oB7lzxhSOYUyE63-DGXF1hRkYfiteJ7uqZHO5f3ySz5whHzMiPIND3cNQrM9QYweUZNoMCf5X8NDR5Btg8vvN_PwBrN7lFadmpYD3ctDuqijD93UM/s200/8.14.11+2+days+after+1+hour+seizure.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5640831052342033298" /></a>
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<br />mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-40114895857972007932011-05-27T16:04:00.008-04:002011-05-27T19:12:54.823-04:00Spring 2011 Update<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnGclhIG7UL6LP1dUTyNk9MXT2bmvw8paIUNlxS6PK-8QmpRmQp-3YGu98Y8WPM75dOis2Fs9RsJXZF0i-yQR6f1JJhI_N5LsFvunaKEg-5Q1kgrhwNcHZKdzsT0yWyYWCYi0SORRFJLl8/s1600/on+the+beach.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnGclhIG7UL6LP1dUTyNk9MXT2bmvw8paIUNlxS6PK-8QmpRmQp-3YGu98Y8WPM75dOis2Fs9RsJXZF0i-yQR6f1JJhI_N5LsFvunaKEg-5Q1kgrhwNcHZKdzsT0yWyYWCYi0SORRFJLl8/s200/on+the+beach.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5611537586438773970" /></a><br />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.<br /><br />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.<br /><br />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.<br /><br />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! <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com2tag:blogger.com,1999:blog-4704679701522012023.post-35416431004668615922011-04-24T23:29:00.001-04:002011-04-24T23:29:58.386-04:00Happy Easter (not so much) April 24, 2011Happy Easter (not so much)<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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. <br />Thank you to Debbie, Brandy and Shannon for your help today!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-55733033603903470002011-03-24T10:38:00.000-04:002011-03-24T10:39:29.298-04:003/24/11 Final day at DukeI 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. <br /><br />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! <br /><br />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!<br /><br />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.<br /><br />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! <br /><br />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.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-91355257284332178562011-03-22T22:33:00.001-04:002011-03-22T22:35:57.995-04:003/22/11 - Day 2 of 2 year studiesWe 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. <br /><br />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. <br /><br />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.<br /><br />Tomorrow should be a an interesting day with nerve conductions tests.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-6610175833994971202011-03-21T23:54:00.002-04:002011-03-21T23:56:57.670-04:00Two Year Post Transplant March 2011It is so hard to believe it is almost the second anniversary of Riley's transplant. We've already passed the 2 year anniversary of his diagnosis of the horrible disease ALD. So much has changed in all of our lives in the last two years, but here we are. Back at Duke for Riley's post transplant studies. <br /><br />Today was spent at the UNC Health Care Center for Riley's cognitive evaluation. We have been looking forward to this appointment for some time. Before getting here, we had already been working with the doctors at UNC to begin weaning some of Riley's meds in hopes of seeing some improvement with Riley's latest obsessive compulsive behavior, continually taking his clothes off. While sometimes it may seem cute or funny, just imagine never being able to leave the house to go to the mall, go to a restaurant, the park, anywhere you are expected to wear clothes! Basically, our homes and his school are the only places we go with Riley. One great side effect of weaning these meds we weren't expecting has been a tremendous improvement in Riley's mood. He is such a happy boy, practically all of the times. This has been such a pleasure. <br /><br />A couple of things came out of Riley's appointment today. One, the doctors were concerned that Riley may not be hearing. They have added a hearing test for this week that wasn't scheduled before. He will have this tomorrow and we are anxious to find out the results. If he isn't hearing or not very well, hearing aides could be an option and we could possible see a difference in Riley's communication. Second, the doctor is recommending Riley go to a school for the deaf and blind. They believe he could really benefit and learn more from someone who specifically knows how to teach the deaf and blind. Unfortunately, this may not be an option. I haven't been able to find a school any closer to home than Knoxville. We will have to look in to this further.<br /><br />Tomorrow, Riley will see his endocrinologist, have a hearing test, have vitals and blood work done, a pulmonary test and a chest Xray. Busy day! Thoughts and prayers for a smooth and successful trip are really appreciated.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-36465630143539519162010-12-21T17:02:00.004-05:002011-08-14T17:49:44.059-04:00December 21, 2010I wish I had a better title to this post than that, but to be honest, I really don't know exactly where this is going! I just know I have people telling me, at least on a weekly basis, they follow Riley on Carepages and since it has been so long since I posted, I thought I would give an end-of-the-year update.
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<br />Riley is doing well. He still has some compulsive "spells" and currently does not want to keep clothes on. It makes it rather difficult to take him anywhere. We are hoping this phase will pass soon. It can be very frustrating! We did end up in the emergency room December 7/8 after what started out as fever, vomiting and finally, 2 seizures. Riley had a pretty bad ear infection in his "good ear" (this would be the one that didn't have a hole in the ear drum but now does), as well as a sinus infection. After doing a nasel swap, we found out just this week that Riley still tests positive for MRSA. Although the antibiotic he is on doesn't treat MRSA, it has done a good job of clearing everything else up. Now that he is feeling better, it also seems to be helping him sleep better through the night. We have had a rough couple of months with very little sleep for anyone. There have been days Riley would get up at 2 or 3am and be up for the day, not going to bed until 8pm that night. And naps, what are those??? No matter how long Riley is up, he refuses to stop long enough to nap. In fact, he won't even sit down for fear he may just fall asleep accidentally!
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<br />Riley has had a busy fall, attending the multiple disabilities class at Apison Elementary School. He seems to enjoy being there for the most part. Joel and I have a meeting with both the physical and occupational therapists after the first of the year to get an update on Riley's progress. Also, we have a new nanny! Her name is Alicia and Riley is very happy with her! Lexi finished her nursing test and is now an LPN and has gone back into home health care. She comes and stays with us just about every weekend. She is and will always be part of the family now!
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<br />Speaking of family, many of you are not aware of the changes that have happened in our family this year. Joel and I separated at the end of May. I don't really have an answer for everything that has happened other than to say the past two years have put a tremendous strain on our relationship. Our divorce was final in October. This has been a very hard time and I am glad Riley doesn't seem to know what is going on, and he gets pretty equal time with Joel and me.
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<br />Riley and I are living in a beautiful new home we began building back in June. It is much smaller and much more manageable for both me and Riley. We have met some wonderful new neighbors that have quickly become friends. We still have our other home on the market. It is a great home for a growing family so anyone looking in Chattanooga, we are ready to sell!
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<br />As I said, Riley spends about equal time between Joel and me. He requires full attention, so it would not be possible for one person to handle without being able to switch and give each other breaks from time to time. Joel is doing well and will be traveling to Sarasota after Chrismtas to visit with the Florida Greenes, and he will be remarrying while he is there. It has definitely been a year of change.
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<br />We have no big plans for Christmas this year. It really doesn't feel like Christmas anymore without Riley being aware of the time of year. He use to get so excited and love this time of year! Every now and then, he will say "Christmas Eve", or say something about Rudolph, so maybe he does have some sense of the holidays being upon us. I am looking forward to being at home with him over the next several days. He makes me smile like no one else can!
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<br />That about brings everyone up to speed with what is going on with teamgreene. I wish all of you a very happy holiday season and joy in the new year! I will try to be a little better about posting updates in 2011!
<br /> mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-64964234683522889592010-09-28T22:27:00.003-04:002010-09-28T22:46:32.143-04:009/27 Unexpected trip to the ERYesterday turned out to be very eventful for us, unfortunately. Lexi, Riley's nanny, let me know that Riley's school had called to have her come pick Riley up from school. He had gotten sick. When I got home from work, Riley got sick again. When Joel got here, again. After the last time, Riley began seizing. I called Dr. Steph to let her know. She told us if he had another seizure, we would need to go to the ER to have Riley's electro lights checked. The first seizure only lasted about 4 minutes. As soon as I got off the phone with the doctor, a second seizure had started. We decided to drive Riley to the ER ourselves, something we had never done during a seizure, but since the seizure was localized to his face, we thought we would be okay to drive him. <br /><br />On the car ride to the ER, a third seizure started. This seizure lasted longer than any Riley has ever had, somewhere between 25-30 minutes. It appeared to stop for a brief minute then started again and he was still seizing when Joel carried him in to the ER. After getting an IV and some meds in, the seizure finally stopped. This was probably our quickest trip ever to the ER. Riley recovered very quickly and was up walking around the ER in no time at all while we waited on blood tests to come back. Just like when we were at Duke, Riley quickly had all leads, wires, blood pressure cuff, etc. off his body in no time. We were able to leave and make it home before 11pm. Riley had a good night's sleep, but had a fever when he woke up this morning and got sick again after having his morning meds. Finally, he was able to keep down some dry cereal, water and some meds. <br /><br />He was very tired today, but other than that, he was good. That is, until we got home from work. He threw up again tonight, after trying to make up for all the food he missed yesterday and today. We are hoping this is just a 48 hour bug or something since everything else seems to be fine. Hopefully tomorrow will be a much better daymail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com1tag:blogger.com,1999:blog-4704679701522012023.post-49835037818656795242010-08-26T04:00:00.013-04:002010-08-26T06:25:10.572-04:00Riley is 8!!! Happy Birthday to our baby boy!First of all, I must thank Kevin Mathews for his generosity in choosing Riley as his charity for his 100 mile bike ride in a few days. I can barely stand driving 100 miles, much less riding a bike that far! Kevin, we so appreciate your generosity.<br /><br />I honestly can not believe it was 8 years ago today my little boy was born. It just doesn't seem real. I thought I would post Riley's birth story for those of you who haven't read it. Keep in mind, Riley's very premature birth has nothing to do with his disease and disabilities he has now, so I guess you could say he has always had it pretty rough. He is such a fighter! And to show the improvement since last year's birthday, I am posting a picture from Riley's 6th and 7th birthdays, as well as one of him now that he is 8. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTLtY5ZHyH2l1EPARS9QGqifcH2JLzsN7lHUvIlcQf7Ogf1FTMUh9PQlrmwOd0uap4PpiSl-3gCtPc7p7LLFl2AC0bEx4x91CBcxU3Gcft1K5_ROGPi0F9cfHozbP65b9vzLiZ15C219w0/s1600/riley+6+bday.jpeg"><img style="cursor:pointer; cursor:hand;width: 133px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTLtY5ZHyH2l1EPARS9QGqifcH2JLzsN7lHUvIlcQf7Ogf1FTMUh9PQlrmwOd0uap4PpiSl-3gCtPc7p7LLFl2AC0bEx4x91CBcxU3Gcft1K5_ROGPi0F9cfHozbP65b9vzLiZ15C219w0/s200/riley+6+bday.jpeg" border="0" alt=""id="BLOGGER_PHOTO_ID_5509503055403320882" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz8lJtFvFuaEe7eyNsaKLYdV2z5JZ6zitP7aSPlSG1BPYudimdGsPM69XeyfAJYO-hjWrJSeB7YDOn7n4h4j0gwKsC73xG0mnEwihqvy50svolmdC8FHYtmtBILJ4NVFUfK8yZB3dqku_g/s1600/riley+7th+bday.jpeg"><img style="cursor:pointer; cursor:hand;width: 134px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz8lJtFvFuaEe7eyNsaKLYdV2z5JZ6zitP7aSPlSG1BPYudimdGsPM69XeyfAJYO-hjWrJSeB7YDOn7n4h4j0gwKsC73xG0mnEwihqvy50svolmdC8FHYtmtBILJ4NVFUfK8yZB3dqku_g/s200/riley+7th+bday.jpeg" border="0" alt=""id="BLOGGER_PHOTO_ID_5509504178679301122" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMLuHTqqjyzgiwdW99w-2ET7_Bw9yzNuUWs1J8_bDo1EUHLjhnwXQBMPOHcAJk0Jy_7nKpzVZysib5gf1ozvun-2wpe9e3Mfi5T2heonS-_oby2wa8Lbh79TemFhjKpoBDVNIALcjrjjBZ/s1600/8+years+old.jpg"><img style="cursor:pointer; cursor:hand;width: 121px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMLuHTqqjyzgiwdW99w-2ET7_Bw9yzNuUWs1J8_bDo1EUHLjhnwXQBMPOHcAJk0Jy_7nKpzVZysib5gf1ozvun-2wpe9e3Mfi5T2heonS-_oby2wa8Lbh79TemFhjKpoBDVNIALcjrjjBZ/s200/8+years+old.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5509508016925682418" /></a><br /><br />I think on every birthday of your children, you think back and reflect on that first “birth day”, and relive the moment your child came in to the world, and the moments leading up to it. The moments leading up to Riley coming in to this world seven years ago were not all good, nevertheless, I always think back and remember Riley's birth story. And in Riley fashion, it couldn't be typical.<br /><br /><br />August 26 was not supposed to be Riley's birthday. He was due on November 9. Since we had just switched some shopping centers around into different regions, I had just acquired the shopping malls we own in Mississippi into my division. I had never been to any of the malls there, or to Mississippi for that matter. Since I knew I would not be able to visit these centers during the holiday season when I typically would have made the trip to Mississippi, I scheduled a trip to see these malls at the end of August. I even had one other trip scheduled in September to a conference in Minneapolis, all with my doctors approval. So on a hot Sunday afternoon, Joel took me to the airport in Chattanooga to pick up my rental car, and I hit the road. I had my audio book in, so I was set! I planned my first stop to be Bonita Lakes Mall in Meridian, Mississippi. Since Brandy, yes, the same Brandy you have all grown to know, had just recently accepted the position of Assistant General Manager/Assistant Marketing Director at this property, I decided to go down Sunday and have dinner with Brandy and Autumn, see the mall on Monday, then head to my next stop. We decided to have dinner at Outback, and then Brandy was going to take me to see where she and Autumn lived. I remember two things about dinner – one, I ate a plain baked potato because I was so afraid anything else would give me heart burn and acid reflux – and two, Autumn wanted to sit in my lap in the booth (she was much smaller then!), but once she got on my lap, or at least kind of got on my lap, she said my belly was too big. She was getting squished! So after dinner and a tour of their new place, Brandy and Autumn dropped me off at my hotel. This sounds weird to me now, because if this happened today, I would of course have just stayed with Brandy and Autumn! After a long drive, I was ready for bed. I put on my very favorite maternity gown and went to sleep.<br /><br /><br />The next morning, August 26, I picked my phone up off the night stand and called my mother before I turned on any lights. She had just answered when I flipped the light on and saw blood. I know I must have scared her to death. I remember saying, “Oh my God, I've got to go, I'm bleeding.” I called Brandy right away and told her I thought I needed to go to the hospital. I asked her a few questions trying to figure out if this could somehow be normal, or maybe the baby coming. I jumped in the shower, which Brandy will never let me forget, and threw on some clothes and waited. When Brandy picked me up at the hotel, she told me she was going to take me to the only hospital she knew of, Riley Hospital. The mall happened to be working on a sponsorship with Riley Hospital, or else I'm sure we would not have had a clue where to go since she had JUST moved there. We get to the hospital and spend way too much time being checked in and answering a ton of questions. All I wanted was for the lady to find my baby's heart beat. She seemed way less concerned than either of us. Finally she said I would go upstairs to have an ultra sound, after she did find a heart beat. We went upstairs and I was put on a flat table. Little did I know that when I laid down on that table, I would not be getting up again that day. Of course, I had already called Joel. I told him just to hold on and I would call him back when I knew something. At this point, after hearing a heart beat, I was pretty calm and I remember both Brandy and I joking around and laughing a lot. When the tech did the ultra sound, she said it appeared I had had a placenta abruption. Apparently, this is typically VERY painful, and since I had not had any pain what so ever, she wasn't real sure and wanted the doctor to see me. I believe at this point, Brandy was telling me I needed to go ahead and call Joel, and I was saying, let's wait and see what the doctor says. I remember the tech telling me, “You need to call your husband and tell him to go ahead and come down here.” I am so glad she did. After being examined by the doctor, I was moved into a very nice birthing room. It was great. Still, Brandy and I were having a good time at this point. They were going to hook me up to some machines and watch things. Joel had started his trip to Mississippi, and everyone else was kind of on stand by. We really didn't know how this was going to play out. What I do remember is being extremely hungry since I had not had anything to eat yet, and I was craving McDonald's french fries. Not only was I craving them, I was begging for them. The nurses said no food in case they had to do surgery. I was in no pain (even though the machine said I was having small contractions - I didn't feel them at all), Brandy went and picked up some magazines and we were having a good old time watching TV and reading magazines all day. I was being given medication to stop contractions, and also an injection to help the baby's lungs develop faster. This could only be given every 12 hours, so the hope was to keep me there in the bed and give me another dose in 12 hours. That was just not in the cards. At some point, Joel got to the hospital, then we all three were having quite a nice time in our birthing suite. I had begged for food all day and Brandy finally snuck me and m&m. I don't know if it had anything to do with the 1 or 2 m&ms, but shortly after, I got sick. When they tell you not to eat, DON'T EAT. So by this time, it is late in the afternoon, I think Brandy must have had to pick Autumn up at daycare of something, so she left for the time being. Then things started happening. The baby's heart rate began dropping, and again, I got sick. This happened twice, and the second time, the doctor came in and said they felt they needed to go ahead and take the baby. I just remember being clammy and hot and sweaty, and trying to pull all my covers and clothes off as they wheeled me out of my luxury birthing suite into emergency surgery. At that point, I didn't care who was around. The last thing I remember was a guy trying to put a mask over my mouth and nose, and me thinking for some reason he was trying to kill me (this really worries me when I think about everything Riley has went through – I'm sure there have been times when he thought people were trying to hurt him).<br /><br /><br />The next thing I remember is waking up, back in my suite and it was dark outside. I was very groggy, and I don't think I even knew if I had had the baby or not. I remember Joel told me he was here, and I asked what his name was! In my drugged state, I guess I thought they came out with a name. Speaking of which, we had not decided on a name. Remember, we still had 11 weeks left to think about this. Shortly after this, the doctor came in and gave us a pretty bleak prognosis. In fact, they were transporting him down the street to another hospital into their NICU – Jeff Anderson Hospital. The doctor offered to give Joel a ride over to the hospital so he could spend some time with the baby. They brought him in the room in a transport unit for us to see him before taking him away. All I remember was seeing all of his dark hair.<br /><br /><br />Brandy and Autumn made it back to the hospital, and although I don't remember much, I do remember Autumn standing on a little stool feeding me ice chips! I was pretty out of it that night and can't really say that I knew the severity of Riley's condition at the time. The only other memory I have of that night is of waking up in the middle of the night and Joel and I discussing that we still didn't have a name. That's when Joel asked what I thought about Riley since he was born at Riley Hospital. I guess he could have been a Jeff, or Anderson, if Brandy had known where that hospital was instead. That would have been a little weird since Jeff is my bosses' name!<br /><br /><br />The next day, Joel's parents and sister, my mom and Shannon, all traveled to Meridian, Mississippi to meet Riley. To make an already long story not too much longer, we stayed in Meridian for 9 days in the NICU before being transported back to TC Thompson in Chattanooga for 5 weeks in the NICU. Riley was on a ventilator for a week, and we weren't able to hold him for a week as well. There is so much that happened in that first 5 weeks of Riley's life. He got off to a rough start, but he just got better and better every single day, and believe it or not, he never had any setbacks. It's hard to believe that 7 years ago, Riley and I were in the hospital, just as we are tonight. I hope this is the last birthday he ever has to spend in the hospital!<br /><br /><br />As far as his 7th birthday, I think it must have all been a bit overwhelming. We had a little party in his room today – I believe about 9 people, and he tried his best to go to sleep during it. After all of our guests left (thank you Brandy, Autumn, Shannon and Uncle Brian for making the trip here – it was great seeing you all), he was crabby the entire day, and night. I sure hope he wakes up in a better mood tomorrow, but who can blame him for being upset when he had to spend his 7th birthday in the hospital.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-26613741406066738112010-08-24T22:15:00.000-04:002010-08-24T22:16:54.803-04:00Kevin Rides for Riley {teamgreene fundraiser}Kevin Mathews who works in the IT Dept. @ CBL will be riding his bike 100 miles in the Clarksville Sunrise Century. The ride will be on Saturday, Sept. 4, 2010.<br /><br />Kevin is 'Riding for Riley' with proceeds donated directly to teamgreene. Thank you Kevin for your time and effort to support teamgreene.<br /><br />Show your support of Kevin and teamgreene with a pledge per mile (ie.. $0.10 per mile = $10.00). <br />Donations can be sent to :<br /><br />The Joseph Riley Greene Fund<br />751 Norfolk Green Circle<br />Chattanooga, TN 37421<br /><br />If you work at CBL Center & would like to hand deliver your donation please drop off with Kevin Mathews.<br /><br />Thanks Kevin.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-74439902278415170802010-08-24T19:48:00.000-04:002010-08-24T19:49:55.586-04:00Quick TripI can't believe it has been over 2 months since I've posted. What once was so therapeutic has become more painful for me, reliving each day through these posts. However, I did want to let everyone know we are at Duke for a quick clinic appointment with Dr. Martin. As I write, we are waiting for someone to come in and draw blood for labs, and since Riley's port was removed during his last hospital stay in June in Chattanooga, he will have to get stuck. No fun! Also, Riley is having his mickey button, or g-tube removed today. It will be the last foreign object in his tiny little body.<br /><br />We arrived in Durham last night, way behind schedule and we were all exhausted. After some room service, we put Riley to bed and tried to unwind a little. It was a good night and we all slept well. We woke up early so we could have breakfast with one of our favorite nurses who just came back to the bone marrow unit after spending nine months working in the unit in San Francisco. It was great to see nurse Connie, and Alisha, we will catch you next time! <br /><br />We arrived at Duke a little ahead of schedule, rare for us, and went to have vitals done. Riley has grown almost an inch since our last trip here in April. He still weighs around 46 lbs, which is probably more a function of his incredible metabolism than anything else. He eats well, but he is constantly moving and jumping and doesn't slow down until he crashes at bedtime. I had to take a little break from writing this because they just came in and removed the g tube. Joel had went to the bathroom. I really wish I would have made them wait until he was back – a little gross for me. It was a very simple procedure and the doctor did it while he was standing up! Now we just have blood to be drawn and to meet with Dr. Martin. We will leave as soon as we are done and drive to Asheville, NC for the night. We are hoping to have a little more free time in Asheville to do something fun to make up for the sticks and pricks today.<br /><br />Fast forward several hours. We are in our hotel room in Asheville. The weather is nice, we are in a great hotel and in a great area. Unfortunately, we are too tired to take advantage of being here. We ordered room service again tonight and just finished giving Riley his bath. The g tube site is a mess and more than I can handle, but I guess I will have to get use to it. It should be closed up completely in a couple of weeks or so. Maybe we will feel a little more adventurous and will do something before heading back to Chattanooga. <br /><br />When we get back to Chattanooga, my mom will be there. She is coming in to help with Riley while Lexi, the nanny is on vacation, and for Riley's 8th birthday! It is hard to believe it has already been a year since his sad little party in the hospital last year. Nonna and Papa (Joel's parents) came for a visit a couple of weeks ago. It was great to see them but it went by too quick. Also, Riley went back to school August 11th. We just love everyone in the multiple disabilities class at Apison Elementary. Riley seems to really like it there. Last, but not least, our good friends, Shannon & Rich and their children, Ben and Olivia moved/are moving to Chattanooga. Shannon has been staying with us for over a week and Rich brought the kids this past weekend. The kids and Shannon will be with us another week and a half or so, then Rich will come back in time to close on their house. It has been great having Shannon, who is like family, with us. <br /><br />Those are just a few updates from the past couple of months. I will honestly try not to go so long again without updating.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-48325690000907829662010-06-10T10:33:00.002-04:002010-06-10T10:45:16.565-04:00Going home!Riley's culture from 2am Wednesday morning still has not grown anything, so we get to go home! He will stay on the antibiotics for 2 weeks but other than that, it sounds like the worst is over. <br /><br />We both slept well last night and only had one crisis this morning that required an emergency bath. Thank God for the removal spray shower head. We should be home sometime around 1pm or 2pm. Thanks for all the prayers and encouraging words.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-69857209061724846172010-06-09T15:14:00.005-04:002010-06-09T22:07:26.753-04:00Wednesday UpdateAfter surgery last night, Riley was snug as a bug in a rug. Or, in warm heated blankets in this case. Since he still had not woken up around 10pm, I decided to go home and leave Uncle Brian on duty for the night. I just knew when I left and he was still swaddled in blankets in his bed that he was out for the night. I went home and got ready for bed and finally laid down around 11:30. Around 12:30am, the phone rang and it was Brian asking if I would come back to the hospital. Riley was up and not very happy. Of course I said yes and started stumbling out of the bed to throw on clothes on, when Brian called back and said he thought Riley was starting to calm down and not to come. I had THE best night of sleep I have had in months. At 7am, Brian called to ask me to come up to the hospital and I could tell it had not been a good night. I got there and Riley was happy to know I was there. Brian said he was going to smoke a cigarette and never came back! He did call back to say he had to go get some sleep. Apparently neither Brian or Riley got much sleep last night. <br /><br />On my way to the hospital this morning, Riley's doctor called me to say his cultures are still coming back positive. We can not go home until he has negative cultures for 24 hours. We are waiting to get the results of the 2am cultures now. She said it could be the weekend before we go home. Not what I wanted to hear this morning. Riley has still had a low fever off and on today and has still vomited several times today. This concerns me a little since he has been on antibiotics since Monday and still has the fever and vomiting. Also, Riley is now confined to his room. He is on isolation (from the other patients only) because of testing positive for MRSA. <br /><br />Other than that, Riley had a pretty good day. He is sleeping soundly beside me now and hopefully that will continue the rest of the night.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-56549701171117564462010-06-08T23:19:00.001-04:002010-06-08T23:19:49.741-04:00Riley's port was removed with no problems and he has been sleeping since getting out of surgery around 7:30pm.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-60335130913471974102010-06-08T16:25:00.002-04:002010-06-08T16:28:14.675-04:00Change of plansRiley's surgery to remove his port will be sometime this afternoon. Since he hasn't eaten or drank all day and there is an available doctor to do the surgery, it will be today. I'll keep everyone posted about how it goes.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com2tag:blogger.com,1999:blog-4704679701522012023.post-6676287704927685772010-06-08T11:41:00.003-04:002010-06-08T12:51:30.637-04:00Our first real set back since coming home from DukeThere is still a lot to tell about yesterday and leading up to today, but I'm going to forgo that right now and just start from being admitted. Riley had 3 seizures at home last night and one at the hospital, along with lots of vomiting. We had already been to the emergency room during the day yesterday because of fever, and we were told one of the cultures came back positive. Riley was going to be admitted until they knew more as about the cultures. <br /><br />We finally got to a room around 3:30am this morning. Riley was sleeping, but did rouse a few times when they were messing with him, at which point he threw up some more. This morning, Riley was alternating between being deliriously happy and pouncing on me, to being very agitated wanting his clothes off. Riley got his morning meds and received a dose of a medication he usually only gets at night. This was to help calm him down a little, as he was literally all over the room. Riley began to relax and get sleepy. The doctors came in to tell me that the culture had come back and Riley's port was infected with a bad kind of staff infection and they want to do surgery to remove the port. While they were in the room, the nurse took Riley's blood pressure, which was a dangerous 50/20. It made me a little nervous when everyone started scurrying around, and even more so when the doctor told me if it didn't come back up after getting a saline IV, Riley would be moved to ICU. After checking it repeatedly for about an hour, it is finally back in an acceptable range. <br /><br />Most likely, Riley's surgery will be scheduled for tomorrow morning and we've been told to plan for a 3 - 7 day stay in the hospital. Have I mentioned that Joel is on a cruise in Bermuda during this latest fiasco?? I don't know what I would be doing right now if it weren't for my brother, Brian, Doug and Brandy who were there through the seizures and who stayed last night at my house for awhile to make sure I don't come home to a disaster today, and Lexi, who will be taking over mommy duty right now while I go get a couple hours sleep. Not to mention all of the other friends, family and strangers who pray for Riley everyday. I can't thank you enough!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-27445984680687663182010-06-07T22:55:00.002-04:002010-06-07T22:59:43.305-04:00At the ERI only have a minute because my battery is about dead. I thought enough to grap my laptop as the ambulance was on the way, but didn't get the charger.<br /><br />Riley woke up with a slight fever this morning. On my way to work, I called Dr. Steph to let her know and she told me to take him to the ER to have cultures done and get an antibiotic dose through his port. This took about the whole day. Once we got home, the vomiting started. After having his meds, Uncle Brian and I got him in the bed and I got in the bed with him, ready to post some great videos of Riley. Unfortunately, he had other plans. He started seizing. I'll give more details when I have time, but to make a long story very short, we are in the ER and he is being admitted. Say lots of prayers!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-62678758938675940642010-05-13T21:10:00.001-04:002010-05-13T21:15:38.463-04:00Wednesday Update w/JoelMorning Teamgreene Nation! No additional seizure activity to report...thank God! On an aside, this is the FIRST seizure he's had that I have not been there for; not sure if that's good or bad, but Lexi did a fantastic job! For you new Lexi fans, she's as sweet as she is cute.<br /><br />Now, as for Riley, we've started him back on Kepra to prevent seizures. He was taken off this after the results of the EEG showed no abnormal brainwave activity...guess he was just playing possum. <br /><br />Yesterday was an off day for us all, so Riley didn't get to school until late afternoon. Lexi called on their way in and said Riley was completely naked in the back seat (I think I need to work with him on playing a little harder to get!) For whatever reason, this seems to be his new thing. Back to school, he did pretty well again, but they did leave early when he started getting a little fussy. <br /><br />I did find out yesterday that on his first day of school, during lunch, he started saying "A sip of beer". All 7 year olds do this, right?!?! I'll have to remind him liquid lunch has to wait till Friday.<br /><br />Riley is continuing to show improvement in his mood and walking. Lexi has him walking without the gait trainer and holding only 1 hand! He is so entertaining when he walks; sort of looks like a combination of a preacher at the pulpit and me walking home from a bar back in the day. The preacher aspect is when he uses his free hand to gesture, the me part is walking "erratically"...hey, I was in college! One thing we're not too crazy about is when he using his fussy sounding tone when he is actually happy. Regardless, as long as he's happy and talking, we're good.<br /><br />Peace!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-52182846157148741122010-05-10T22:46:00.007-04:002010-05-11T22:00:57.355-04:00There's good news and there's bad news...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD8gNWIxxzZSse6AJAwt2csfGlB2ZQDrtCEcKUm1vkkU9djbgtHldFhyphenhyphen8HUTYBVmXL6MJpKjmO6nA_bgiwzLhh0gc3GDdDDFUx9Ka4F9oKmFh2lJqhSvFdrB9nwIVvwtGKCq_Nc1hyz1KJ/s1600/img_0695.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD8gNWIxxzZSse6AJAwt2csfGlB2ZQDrtCEcKUm1vkkU9djbgtHldFhyphenhyphen8HUTYBVmXL6MJpKjmO6nA_bgiwzLhh0gc3GDdDDFUx9Ka4F9oKmFh2lJqhSvFdrB9nwIVvwtGKCq_Nc1hyz1KJ/s400/img_0695.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5469847902263679698" /></a> Riley and his nanny, Lexi before school<br /><br />The good news is, Riley started school today and did so good! The class had circle time and listened to songs and sang about the days of the week and months of the year. We could tell it made Riley happy because he talked and smiled through the whole circle time. After that, he sat in a bean bag and played with some toys. He had some chocolate milk with his lunch (their lunch is about the time is usually having breakfast)and called it ice cream. I stayed for a little while but had to leave Riley and Lexi and go to work. Even after school, Lexi called to tell me what a great day Riley had.<br /><br />Around 5:20pm, I was getting ready to leave work and got another call from Lexi. As soon as she said my name, I knew something was wrong. She said Riley was having a seizure. They were at Baskin Robbins about to get ice cream when it happened. I told her to hang up and call 911, turn Riley on his side and I would be right there. I called Joel and told him to call Riley's doctor, then I also called 911 so I could give them more details about Riley's condition. The seizure lasted several minutes but was localized to his face. he had another one once we were in the ER. After doing blood work, everything came back okay, and everyone agreed that this was probably a result of weaning Riley off of his anti seizure medication too aggressively. Needless to say, we've added back this med. We were discharged a little after 8pm and all is well. Riley has been very happy and very affectionate since he came out of his seizure. He actually seems to be more clear and focused than before. <br /><br />Riley is resting peacefully beside me right now, which means I need to get off here and do the same.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0tag:blogger.com,1999:blog-4704679701522012023.post-46725408947937862072010-05-07T12:39:00.002-04:002010-05-07T13:18:49.451-04:00On the Road AgainI haven't posted since Riley's terrible night last week, but I'm happy to say it isn't because it's been a bad week. After we left Duke Thursday afternoon, we went through Mooresville, NC to stay at our friends Shannon and Rich's house to break up the trip home. Joel was already convinced we shouldn't stay and just go straight home because Riley was going to keep everyone up all night. I convinced him to at least stay over night so we didn't have the full 7 hours to drive. Riley had a great night. Probably since he hadn't slept the night before, but I was willing to take it any way I could get it. When we got up Friday, we decided to stay another night so we could take Riley out on the boat Friday afternoon. We had no idea how he would do, but were thrilled when he loved it! We still weren't able to get his coat off of him, even under his life jacket in the hot sun, but nevertheless, he enjoyed the boat ride.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9BB__f0HmMCIapKcLHVhzP0qOL5VF51cqlm6WpcrQMs5Y6KHv5ZTgXE_czVnQdHu7hPaf2KwX20SD7wRFcruEOjaNQ6oNrB8n-VRIPCWro_ClX9DmY2t0OeoOCHG6w4gvx9XjTCVWjYT/s1600/me+and+riley+cropped.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 202px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9BB__f0HmMCIapKcLHVhzP0qOL5VF51cqlm6WpcrQMs5Y6KHv5ZTgXE_czVnQdHu7hPaf2KwX20SD7wRFcruEOjaNQ6oNrB8n-VRIPCWro_ClX9DmY2t0OeoOCHG6w4gvx9XjTCVWjYT/s400/me+and+riley+cropped.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5468578622778697490" /></a><br /><br /><br />We had another good night's sleep and a quite drive home the next day. We have continued to ween Riley's meds, as well as adding prozac, and we have been thrilled with the changes we are seeing in Riley. He is sleeping well, he is a much happier little boy, he is walking more and better, and his eyes are actually open all the time now. We thought he was keeping them closed since he can't see, but apparently, he was just very medicated. <br /><br />We met with Riley's team of people who have been putting together his IEP (Individual Education Plan) at Apison Elementary School on Wednesday, and they are awesome. Riley will begin school next Monday in a multiple disabilities class. I am very excited about it, but it break my heart to visit his classroom in the students in it. I think when your child is not born with a disability but rather develops one, it is hard to adjust your thoughts and plans of everything you expected and wished for for your child. I always knew Riley was very intelligent, very good athletically, and very charming! I just knew he would go very far in life and be very successful. I am not saying that I don't still have hopes and dreams for him now, but it is just different. I really have high hopes that starting school will be another positive step in Riley's life.<br /><br />And that brings me to now. We are at a cabin in the mountains of Pigeon Forge for the weekend. We arrived yesterday evening and are here with my mom, brother, sister and brother-in-law. We just saw them all 2 weeks ago when we stopped for a couple of nights in Spartanburg on our way to Duke. No one could believe the change in Riley over the past 2 weeks when we got here last night. He is doing so good! We just hope and pray that it continues and he continues to get better and better everyday!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com2tag:blogger.com,1999:blog-4704679701522012023.post-15629126242769473502010-05-03T21:10:00.001-04:002010-05-03T21:13:45.373-04:00Meeting with Dr. Martin Summary - JoelSince Teresa had been up the entire night with Riley, she decided it was best to stay at the hotel and get some sleep. So, I got Riley and myself ready, and off we went. Let me add, I stopped by the front desk to get a late check out, but they were totally booked. So poor Teresa had to get up a little earlier and get everything packed up, then call the front desk to send someone help load up their luggage cart. No rest for the weary!!<br /><br />So, when we got to the clinic, Riley was in a great mood. Our appointment was at 9:45 am, but we didn’t get back to a room until 10:15. Finally, around 11:30 am, Riley’s good mood was used up; just in time for Dr. Martin to come in and see. I’m actually very happy he did see this outburst; he even said its one thing to hear about it but a much different story to see in person.<br /><br />The first thing we did was to review the results of all the testing that had been done, which I will summarize below.<br />1 MRI: <br />o The damaged white matter in the frontal lobes showed “internal Improvement”. This was new back on the MRI done in Oct 09, and they never could figure out what had caused it. Regardless, it appears to be healing, so thank you God!!<br />o The damaged white matter in the back of his brain, which is caused by ALD, has shown “interval progression”. Dr. Martin did not seem too concerned with this, as he feels his functionality has stabilized. As always, we’ll just have to keep an eye on it.<br />o Executive Summary: Good news overall, as the front lobes seem to be healing. However, on the flip side, this doesn’t help explain why Riley’s behavior has changed so much. The behavior he exhibits is not normal for ALD patients. They tend to be very calm and lose motor skills; Riley’s motor skills are great, and he certainly is not calm!<br />2 EEG:<br />o No seizure activity noted<br />o The “visual evoked response” portion of the test shows “no definite connection between the retina and the visual cortices of the brain”. So, as we all expected, Riley’s eyes function just fine, but unfortunately the connection to the back of his brain is gone. He may see shadows, but that’s about all.<br />o The “auditory evoked response” portion of the test was abnormal due to mild prolongation of “I-Vc IPL” following stimulation of the right ear. Dumbed down; the nerves in his left ear are working great, but the right not as well. <br />o Executive Summary: Good news on the lack of seizures, so we can start weaning his Kepra. However, the confirmation on his lack of vision is bitter sweet (we knew it, but now it’s final). Now we also know he can hear, but it doesn’t necessarily mean he understands what we’re saying.<br /><br />3 Echocardiogram<br />o Everything looks normal, and unable to see the mass that was previously noted in his right atrium. <br />o Dr. Martin to confirm that “unable to see” means it’s gone; if that is the case, we can stop the daily aspirin.<br />4 EMG (nerve conduction):<br />o “This study does not demonstrate electrophysiological evidence for a demyelinating neuropath.” <br />o Translation: the peripheral nerves in his arms and legs have not been damaged.<br />5 Chest X-ray:<br />o Small volume, but clear lungs.<br />6 Blood work:<br />o All within range, with the exception of his Vitamin D. So, we have to restart one med, but only need once per week.<br /><br />Dr. Martin and I discussed Riley’s behavior, and he expressed the need to be more consultative with Dr. Escolar, the head of the UNC Childhood Center for Learning and Development. She is the most qualified to address his disease as well as the behavioral issues. The doctors at Siskin are good, but they are not very knowledge with ALD, more traumatic brain injuries; Riley’s deal is not an “injury”. So, Dr. Escolar’s first recommendation was to take Riley off a lot of the meds he’s currently on, and to start giving him Prozac. <br /><br />There are some more meds we’ve changed, but I’m not going to go into all that detail. What I will say is I’m getting hopeful again; lost hope there for a while. Riley is a very unique case that requires the “best of the best” to figure out our course of treatment. With Dr. Martin, Dr. Escolar, the pediatric Neurologist at Duke (name?) and Dr. Stegall, I feel we have that team!!<br /><br />That’s all for now; I’ll let Teresa tell the events of today at Shannon and Rich’s house. I will say we all had a great day and too much sun!<br /><br />Peace and God bless!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com1tag:blogger.com,1999:blog-4704679701522012023.post-67514563735950477932010-04-29T11:48:00.001-04:002010-04-29T11:50:48.106-04:00No sleepI don't know any other way to say it - this night has been hell. <br /><br />Yesterday, Riley was on a constant sedation for his MRI. Constant meaning he was getting it continuously. He was brought back to recovery to wait for his EEG, and pretty much as soon as they rolled him in, he sat straight up and began fussing. She the drug they were using didn't keep him knocked out, they switched to another drug called ketamin. This worked immediately and got him through the EEG, but he still had the echo cardiogram to go. Just as soon as the EEG was over, he sat up again and began taking all the probes off his head. It took two more doses of ketamin to get him through the echo and the doctor said he had had enough to keep an elephant down. We were told he may sleep most of the day, but we know Riley better than they do.<br /><br />We got back to the hotel at 5pm and Riley quickly polished off 10 chicken McNuggets. We had a nice visit with one of our favorite nurses, Alisha, and Riley was a doll - cute and entertaining the whole time. Then, like clock work, Riley started his compulsion of taking of his shirt and having it put back on over and over and over again, while screaming in his high pitched Dr. Jekyll voice. We finally got him settled down around 11pm, but he was at it again by 1am. After trying everything possible to keep the clothes on and the screaming down, I decided I should leave with Riley before we got kicked out of the hotel. With neither of us dressed appropriately, we headed to the van, me crying and Riley screaming the whole way.<br /><br />I had no idea where I would go, other than a trip to the gas station first. But before I could make it there, I saw flashing blue lights coming up behind me. I don't know who was more hysterical, me or Riley, but the officer was very understanding and could tell I hadn't been drinking, even though he pulled me over for swerving. We made it to the gas station and rode around a little while until Riley dozed off, and silly me thought I could head back to the hotel and get in the back seat with Riley and we could both sleep. That didn't happen, so I started driving again. At 3:30am, we visited Triangle Town Center, one of the malls my company owns that I didn't get to see the whole 8 months we lived here. We ended up at the hotel again and I got about a 20 minute nap while Riley stayed awake QUIETLY in the back seat. We hit McDonald's at 5am but Riley didn't touch his breakfast. I'm sitting here now trying to decide if I should have a second egg mcmuffin. Riley has sat here quietly while I type this on my blackberry, but now he is starting up again. He has said he is tired several times and I have no doubt he is. A few times tonight during Riley's "ranting", I've heard him say I'm sorry. I can't help but think back to when Riley was having chemo before he got so bad off. He would through up and say, "mommy, I'm sorry I am like this.". It would break my heart and I would tell him he never needed to apologize for being sick. There is a part of me that wonders if Riley has brief moments where he is telling us he is sorry. I honestly hope not because that would just kill me.<br /><br />I am just waiting now for the hotel guests to start stirring so Riley and I can go back in. Poor Riley won't get any sleep before heading out again, but I don't think I will be seeing Dr. Martin today.mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com1tag:blogger.com,1999:blog-4704679701522012023.post-462094076246696222010-04-28T14:01:00.001-04:002010-04-28T14:03:12.137-04:00Quick Update: Wed, 4/28/10 - JoelHey all, been a while since I've posted, so I thought I'd give a quick update. <br /><br />Well, Riley just finished up with his MRI, now he's having an EEG (brain wave activity) then an Echocardiogram. He's having all said procedures done under sedation, so he's FINALLY getting some rest. I kept asking for a little something something for dad, but I guess they have rules against that.<br /><br />I'd say overall, each day has gotten a bit worse than the day before, as for Riley's behavior and sleeping. Last night he was up at 3 am (for the rest of the night), and the night before he was up by 4 am. Pappa Bear does NOT do good without sleep, so not only is Riley moody, but I've been a bit of an A$$ myself (sorry Teresa)! <br /><br />Even with the lack of sleep, Riley was in a great mood yesterday evening around 6 pm. He was smiling and laughing, at what we're not sure, but he was making this little squeeking sound like babies do when they laugh. It was great to see, but pretty sure he was delirious from lack of sleep and excessive chocolate intake (he wouldnt' eat, so I kept him fueled on candy yesterday). I'm sure that has nothing to do with his not sleeping.<br /><br />We meet with Dr. Martin tomorrow to review the results from all the testing, so that should be enlighening. We're very anxious to see what's been going on in Riley's brain, which will help us all understand how to address his "issues". <br /><br />Take care!mail to:teamgreene08@gmail.comhttp://www.blogger.com/profile/18424956701869602188noreply@blogger.com0