teamgreene: Our life after transplant

Thanksgiving Trip to SC – What was I thinking??

2011-11-27T20:39:00.002-05:00

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!

2011-08-14T17:42:00.003-04:00

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!

Spring 2011 Update

2011-05-27T16:04:00.008-04:00

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!

Happy Easter (not so much) April 24, 2011

2011-04-24T23:29:00.001-04:00

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!

3/24/11 Final day at Duke

2011-03-24T10:38:00.000-04:00

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.

3/22/11 - Day 2 of 2 year studies

2011-03-22T22:33:00.001-04:00

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.

Two Year Post Transplant March 2011

2011-03-21T23:54:00.002-04:00

It 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.

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.

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.

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.

December 21, 2010

2010-12-21T17:02:00.004-05:00

I 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.

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!

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!

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.

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!

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.

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!

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!

9/27 Unexpected trip to the ER

2010-09-28T22:27:00.003-04:00

Yesterday 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.

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.

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 day

Riley is 8!!! Happy Birthday to our baby boy!

2010-08-26T04:00:00.013-04:00

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.

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.

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.

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.

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).

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.

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!

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!

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.

Kevin Rides for Riley {teamgreene fundraiser}

2010-08-24T22:15:00.000-04:00

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.

Kevin is 'Riding for Riley' with proceeds donated directly to teamgreene. Thank you Kevin for your time and effort to support teamgreene.

Show your support of Kevin and teamgreene with a pledge per mile (ie.. $0.10 per mile = $10.00).
Donations can be sent to :

The Joseph Riley Greene Fund
751 Norfolk Green Circle
Chattanooga, TN 37421

If you work at CBL Center & would like to hand deliver your donation please drop off with Kevin Mathews.

Thanks Kevin.

Quick Trip

2010-08-24T19:48:00.000-04:00

I 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.

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!

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.

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.

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.

Those are just a few updates from the past couple of months. I will honestly try not to go so long again without updating.

Going home!

2010-06-10T10:33:00.002-04:00

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.

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.

Wednesday Update

2010-06-09T15:14:00.005-04:00

After 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.

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.

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.

2010-06-08T23:19:00.001-04:00

Riley's port was removed with no problems and he has been sleeping since getting out of surgery around 7:30pm.

Change of plans

2010-06-08T16:25:00.002-04:00

Riley'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.

Our first real set back since coming home from Duke

2010-06-08T11:41:00.003-04:00

There 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.

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.

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!

At the ER

2010-06-07T22:55:00.002-04:00

I 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.

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!

Wednesday Update w/Joel

2010-05-13T21:10:00.001-04:00

Morning 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.

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.

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.

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.

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.

Peace!

There's good news and there's bad news...

2010-05-10T22:46:00.007-04:00

Riley and his nanny, Lexi before school

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.

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.

Riley is resting peacefully beside me right now, which means I need to get off here and do the same.

On the Road Again

2010-05-07T12:39:00.002-04:00

I 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.

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.

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.

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!

Meeting with Dr. Martin Summary - Joel

2010-05-03T21:10:00.001-04:00

Since 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!!

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.

The first thing we did was to review the results of all the testing that had been done, which I will summarize below.
1 MRI:
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!!
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.
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!
2 EEG:
o No seizure activity noted
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.
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.
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.

3 Echocardiogram
o Everything looks normal, and unable to see the mass that was previously noted in his right atrium.
o Dr. Martin to confirm that “unable to see” means it’s gone; if that is the case, we can stop the daily aspirin.
4 EMG (nerve conduction):
o “This study does not demonstrate electrophysiological evidence for a demyelinating neuropath.”
o Translation: the peripheral nerves in his arms and legs have not been damaged.
5 Chest X-ray:
o Small volume, but clear lungs.
6 Blood work:
o All within range, with the exception of his Vitamin D. So, we have to restart one med, but only need once per week.

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.

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!!

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!

Peace and God bless!

No sleep

2010-04-29T11:48:00.001-04:00

I don't know any other way to say it - this night has been hell.

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.

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.

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.

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.

Quick Update: Wed, 4/28/10 - Joel

2010-04-28T14:01:00.001-04:00

Hey all, been a while since I've posted, so I thought I'd give a quick update.

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.

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)!

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.

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".

Take care!

Another day down (almost)

2010-04-27T20:54:00.002-04:00

I forgot to mention yesterday that we broke our trip to Duke up by going through Spartanburg and staying with my sister over the weekend. My mom and brother also came up from Charleston to Spartanburg for the weekend as well. We enjoyed seeing family and a couple of friends, as well as some really good food while we were there. This was our first trip anywhere besides Duke in over a year and it was definitely great to have some help with Riley.

After a long night and Riley getting up at 4am for the day, we are ready for this day to be over. We had our first appointment with the endocrinologist and got our first good news in awhile. Riley has grown 2 inches since January, and also gained the weight he needed to back. He had lost all the way down to 39 lbs. back in January and is now 47 lbs. We were glad to hear both, especially since Riley didn't grow at all from last March to this January.

Next, we went down for our next appointment, an echo cardiogram. This didn't go well at all, and when I told the technician he is going to be sedated tomorrow for his MRI and EEG, she immediately decided to wait and come do the echo while he is sedated for these other two tests. Next, we headed back upstairs to have blood drawn for Riley's lab work. Again, Riley was not very happy about this, but we got it over pretty quickly, and with no pain since Riley has a port. Once again, we headed back downstairs for a chest x-ray. Just recently, Riley has started something new when he is picked up. If he has been in his chair or wheelchair for a little while and wants to be held, it doesn't matter who picks him up, he immediately says, "I love you, give me a kiss." Only one person can go in for X-rays, so I waited outside and knew Joel had finally picked Riley up when I heard him say this.

Next, we headed to Duke South, a different area of the hospital for an EMG, or nerve conduction test. Riley had this test last March and it didn't bother him because I was able to explain the test to him because I've had it done several times. I told him it didn't hurt, it just feels weird, and he did fine. He had it done again back in October and didn't do well at all. Today, we were pleasantly surprised at how well he did, especially since we had to hold him down during the test. So we ended on a good note since that was the last test of the day.

We were all three very hungry and very tired by this point, so we headed back to the area we are staying for a late lunch. We were so happy that one of our favorite nurses, Connie, was able to come by and see us for a little while. We are still hoping to see a couple more of our favorites over the next couple of days.

Riley has started expressing himself in a new way that we can't help but think is cute even though I know it must be so frustrating for him. When he gets very angry or frustrated, whether it is just with us or at something he is having to have done, he just can't find the words to express himself, so, he just starts screaming very angrily whatever he can think of. Today, it was "Monsters vs. Aliens!" several times, as well as, "Ethan!", and "I'm sorry."

There was lots of anger and frustration today, but when we got back to our room late this afternoon, he was surprisingly happy. Joel and I napped with him in between us, but I don't think he ever slept. Every time I would wake up and look at him, he was smiling and whispering to himself. Hopefully he will wake up happy after a full night's sleep.

Our first day at Duke

2010-04-26T19:39:00.005-04:00

We made it through Riley's first day of testing for his one year post-transplant check up at Duke. This morning, we met with Dr. Escolar. Her offices have done all of the cognitive testing last March before transplant and back in November before we were discharged to come back to Chattanooga. From that meeting, we are receiving several recommendations on med changes. She believes we may actually see improvement in Riley's compulsive behaviors and sleep if we get him off some of the medications we've started recently to treat these same symptoms. The plan is to cut back slowly and get a new baseline and then begin treating one symptom at a time. She feels we have so many things going on now, we really need to get off as much as we can and start from there.

We were able to go out for lunch and do a little shoe shopping for Riley some sandals for the summer after the morning appointment. This afternoon, Riley had an eye exam. Dr. Escolar had also done a very brief exam this morning and told us his pupils did change with the change in light, but he didn't have a reaction when she made quick movements toward his eyes. It doesn't appear he is able to see much at all. The doctor this afternoon was able to tell us from his exam that Riley's eyes are healthy, that it is the connections to the brain that are the problem. At this point, there doesn't seem to be much we can do about his loss of sight.

That was it for today. It was probably our lightest day of the week. We came back to the hotel to rest around 5pm. Tomorrow, we have a very busy day. An 8:30am appointment with the endocrinologist, followed by a chest xray and echocardiogram, then pulmonary testing and nerve conduction tests. It will be along day with some not so fun stuff for Riley. Hopefully, he will have a good night tonight and it won't be so bad.

1 Year Anniversary of Riley's Transplant

2010-04-15T21:14:00.006-04:00

Tomorrow is the 1 year anniversary of Riley's transplant so I thought I would re-post last year's post, but first I will do a hopefully quick update of the last month or so.

Since Riley's traumatic night, we did hire a night nurse who comes 3 nights a week. This has been a tremendous help. We have just this past week have been able to put Riley down to bed without him immediately waking up and freaking out. Still, a lot of nights he just sleeps in his chair.

We have been a lot less fanatical about Riley being around people, and even kids. We even had our good friends Shannon, Rich, Olivia and Ben Gonzalez come for a visit last weekend. Today. we even took Riley back to Hickory Valley Christian School to visit his classmates and teachers. We were really hoping this would have a positive effect on Riley. If it did, unfortunately we were not able to tell.

Basically, Riley has been having mostly good days, but for about a week, he has been having serious meltdowns about his clothes. These can last for hours and are no fun for him or us. It involves Riley taking his clothes on and off and yelling "give me clothes", and this cycle continues over and over again.

I could go on and on, but since I am trying to keep it brief, I'll stop and leave you with last year's post.

*************************************************************************************************

Today is transplant day. The doctor called this Riley's second birth date. Joel was here for the night shift and said Riley did good through the night, but Joel didn't get much sleep because people were in and out all night. On my way in this morning, Joel said Riley was moaning and asking for me, but he had fallen asleep by the time I got here. That didn't last long. He has been complaining of his tummy hurting this morning and constantly moans when he is not sleeping. I'm sure his tummy really does hurt, but one time this morning, he told me it was hurting, so I buzzed the nurse to see if he could have anything for his tummy. Before she got here, he said, "My tummy really hurts. It feels like I can't do mouth care." So, when the nurse arrived, I told her I thought we were okay! At this point, Riley isn't even getting up to use the bathroom. Joel said he cleaned up 3 dirty pull ups before I got here, and I've done three since I've been here this morning. It is no fun - for us or for Riley. Riley kicks and screams the whole time I change him. I guess he wore himself out this last time because he is sleeping soundly now.

Riley will get a really big dose of Benedryl before the transplant begins, so he will probably sleep most of the afternoon. For those of you who don't know, the transplant (which should begin between 11:30am - 12:00pm today) is not surgery. I will post pictures later today, but everything will take place here in Riley's room. It is basically just a transfusion that will go through the IV into Riley's central line, and usually takes about 30 minutes. He may even sleep through it. Because we are participating in a clinical trial, Riley will receive a second dose of cells 4 hours after the first transfusion. This is a small sample that was taken from the original donor cells and manipulated in hopes of producing more cells faster. There usually isn't any nausea or vomiting with the transplant - that comes a little later. Riley will also begin needing blood and platelette transfusions. In fact, Joel said he received his first blood transfusion either during the night or this morning. The doctor said it will hopefully be a very uneventful day. We can expect there to be a certain smell in the room after the transfusion - we are told most people say it smells like cream corn, so I guess it could be worse! - that comes from something used in freezing the donor cells. Riley will not be able to smell it, just anyone else who enters the room. I'll update after the transplant later today.

For now, Riley is just very focused on his visit from Autumn later this evening and not interested in the transplant at all, which is fine. He has been kind of out of it today. When I got here this morning, he woke up and asked me if this was school. Then, he asked me if I would call that girl (sorry Gary) watching Indy and have her bring Indy to him. He over heard me telling Brian that I was going across the hall to see if there was any coffee, and he said, "Will you go see if there is any cream coffee to wake me up a little bit?" Every now and then, Riley gets flavored creamer mixed with sugar, milk and a "splash" of coffee, and this is what he calls "cream coffee". So, overall, just more of the same for now. I'll update after the transfusion is complete this afternoon.

Thanks

2010-03-17T21:34:00.000-04:00

First of all, I want to thank all of you who sent me messages telling me not to blame myself for not hearing Riley Friday night. I really appreciate the support, but unfortunately there has been some real damage done. We will never know what happened to Riley in his room that night, but whatever it was, it was a traumatizing event for him.

Sunday, Joel and I decided to give Riley a bath, when Joel undressed Riley we saw bruises all over one leg and one arm. He is pretty banged up and we have no idea how it happened. What we do know is that Riley is terrified to lay down. He has not slept in his bed since Saturday night. I slept in his room with him, with him laying on top of me for most of the night and neither of us getting much sleep. We had a nurse over night Sunday, Monday and Tuesday and she rocked him for most of the night and he slept in his chair the other part. Last night he got the most sleep yet, about 7 hours. Riley is okay as long as he is in his chair or being held, but if you try and sit him down or lay him down, he begins grasping everywhere trying to find someone or something to grab on to. It is very sad to see. For a couple of nights now, holding his hand has helped. He wants to know you are right beside him. His doctors have had us go way up on several of his meds yesterday and today, really just wanting to keep him sedated until he gets through this. Unlike the past few days, today he has been happy as long as you don't touch him.

Since he is getting several sedating medications, we have decided to hold off on the new medication Riley was suppose to start this week to help treat the obsessive behaviors, so he is still constantly wanting you to "dress" him, even though he is fully clothed. Another change this week, we have had to increase Riley's tube feeds. Late last week, his eating really slowed down. When we were in the emergency room on Saturday, Riley only weighed 39 lbs. He had gotten to over 50lbs while we were at Duke and was down to about 47lb when we came home.

Tonight will be our first night since Saturday without a nurse and I am going to attempt to get Riley to sleep in the bed with me. Hopefully, if we can get him through the weekend, maybe we can get past this latest phase and move on and try to get some of the other issues under control. We will be going back to Duke for a week the week of April 26 and hopefully we can make some progress then as well. On a different note, I was thrilled today when Riley's lab results came back and we were told we could discontinue his magnesium and potassium. Riley has been on very large amounts of both of these drugs over the past several months. He is now finally able to maintain these levels without medication. I did his meds tonight in record time! As we get closer and closer to that one year mark, we should be dropping more meds. I am going to have so much free time on my hands!

Update - step one of tonight's mission is complete. Joel has moved Riley into the bed and he is sleeping soundly beside me. Now the question is, how long will it last?

A Trip to the Emgergency Room

2010-03-13T19:15:00.000-05:00

We took our first trip to the emergency room today since March 4, 2009 when Riley had his seizure. It is a long story...

Last night, we put Riley to bed but he still had a couple of meds to get, so Joel left his G tube connected in his tummy so we could give the meds after Riley was asleep. We have done this many, many times. Joel went to bed pretty soon after and I stayed up watching some TV. Or at least I tried. I woke up still in the rocking chair at some point in the night and was ready for bed. We use a monitor with Riley, and I unplugged it and took it to the bedroom with me because it was my night to be on duty. The next thing I knew, I woke up at 7:30 this morning. I thought it was odd I hadn't heard Riley all night, so I picked up the monitor and that is when I realized it was dead! Since it had been plugged in in the living room, I assumed it had been plugged in all day, since it usually is. Apparently, it wasn't, and I have no idea how long it had been dead. I didn't hear Riley and thought he was probably still asleep, so I went in to the living room and plugged in the monitor. As soon as I did, I heard Riley. He was awake.

When I walked in to Riley's room, he was down at the foot of his bed on his knees. He was holding on to the bed rail, so I believe he had scooted down to the end holding on to it. He had taken off his pull up and pants as well. As soon as I went to him, he grabbed on to me, wanting me to pick him up. Riley has a bulletin board in the shape of a surf board hanging over his headboard. It is up pretty high and has all kinds of things hanging on it, like pictures, things Riley has made, pictures he drew, etc. As I looked around the room, I say two things that had been hanging on the board lying in the floor. Riley would have had to have stood up to pull down anything from the surf board. I was upset since it was obvious Riley had been up for awhile, maybe even hours, and had obviously gotten upset enough that no one came in when he called. I took Riley to the living room and rocked him and he went back to sleep. I didn't think much about it at first, but as the morning went on, it became more and more obvious that Riley was clinging to us and would not let us put him down. He was scared. We began to wonder more and more about how long Riley may have been up alone. I went back in to his room and noticed scratched marks going down the wall below the surf board. I'm not sure if he was trying to climb up, maybe on his headboard, or maybe fell and scratched the wall as he went down. Regardless, it just made me feel even worse about the dead monitor. Then it got even worse.

Since Riley had went back to sleep, he had not eaten, which means he had not gotten any of his meds. He has to have food on his stomach before we start giving him the many meds he has to get each day. We tried to get him to eat a couple of times but he didn't. Since it was the weekend and we were just kind of hanging around, we weren't really rushing around this morning. Finally, I decided to go make Riley's bed. When I pulled the covers back, I saw his G tube laying in the bed. Not only the tube that we attach to the button that is in his tummy, but the tube and the button still attached. The part that should have still been inside his stomach was lying there on the bed. Not good. The tube had been left in because I got up and went to bed, forgetting to give Riley his last three meds last night. We've left the tube in before with nothing happening, but I guess with with Riley moving all over the place, it either got pulled out, or Riley pulled it out himself. Joel has had to put the button back in Riley's tummy one other time, but it was when we knew it had come out and he did it right away. This time, he couldn't do it because the hole had closed up. We called Dr. Steph who called the hospital. We had to take Riley in to the emergency room. Since he was still clinging to us (we assume he was/is traumatized by whatever happened last night and/or this morning), we knew there was no way he was going to lay there and let the doctor try to do the procedure. They decided it would be best to sedate Riley and do the procedure in the O.R.

The procedure was very quick and we didn't have to stay in recovery very long either. However, when we got down to the car to leave, Joel noticed that, once again, the button was out! We turned around and went straight back to the O.R. This time, Riley's tummy was still numb and the doctor was able to get the second new button placed while Joel held Riley.

So not what we expected our Saturday to be. Riley is still very clingy and seems scared if he is not in his chair or not being held. We will just have to give him more hugs and love and make him feel secure and know that we will be there whenever he needs us. I don't think I will ever forgive myself for not taking the charger in with me last night, or for leaving the tube in overnight. Hopefully tomorrow will be less eventful.

2010-03-10T23:40:00.001-05:00

The hardest part about reading the post from March 11 of last year was remembering that Dr. Martin told us Riley was in the top three of kids whose ALD was caught the earliest that he had transplanted. This meant he was an excellent candidate for transplant, or at least he should have been. Also, to read that Riley should have been in the hospital for about 4-6 weeks and that we would be in the Duke area until the 100 day mark - boy were we wrong! Riley was in the hospital for 173 days, out for 10 days and back in for 10 more, and we were in NC for a total of 238 days.

Speaking of Duke,we have the dates for Riley's one year follow up appointments. It will be the week of April 26. He will undergo a whole battery of tests, basically the same ones he did this time last year, only I'm sure the results will be much different. We aren't sure if they will be able to do some, like vision. We believe that Riley has lost most of his vision, but not all.

Something else I am very happy is underway is an assessment by the Hamilton County school district. This is scheduled for March 22. I really don't think it would have happened if it were not for Riley's homebound teacher, Betty Hornsby. Betty has not been able to do much with Riley, but she still comes twice a week to see him and once a week to see us and does what she can. Unfortunately, when Betty was assigned to Riley, no one had told her anything at all about him, or even that he was special needs. This was very disheartening to me, especially since I had started calling the school district trying to start the ball rolling back in November before we ever left Duke. I did everything I was told, but it seemed we were still slipping through the cracks. One of the first things Betty told us when she first came to meet us and Riley was that she didn't know what the procedure was for special needs, but that she would be our advocate. And she has! We know Riley can not go to a regular classroom next year, but what we don't know is what IS available to him. That's what the assessment will help with. We will work with someone to create an IEP, an Individual Education Plan for Riley. I haven't been too concerned about the period he is homebound while isolated. It is the next school year that I want to figure out.

Also new, meds. We are about to start Riley on a new medication to see if it helps with his compulsive behaviors that is driving us, and probably him, crazy. Unfortunately, it sounds like we are actually waiting on the request to get denied, then appealed, then hopefully approved. Crazy. That's about it for now!

2010-03-10T21:34:00.000-05:00

Wow. Riley has had 900 visitors to his carepage site. That is pretty amazing.

We have had a nurse for the past 3 nights, so we are a little more rested. Unfortunately, Riley was up 3 times last night, so he probably is not as rested as we are. Now we are on our on until Sunday night, so that could mean I won't be posting for a few days! Just depends on our nights.

I don't know why I am doing it, but I have decided to read each days post from 1 year ago. I guess it is just something I feel I need to do. I read the post from this date a year ago. We had just gotten back from a week of tests at Duke and were home just waiting until time to be admitted. Apparently, I asked Riley how he felt and if he felt sick. He said, very sarcastically, "Do I look sick to you??!!" How I would love to hear that now!

Hoping for sleep...

2010-03-08T22:59:00.000-05:00

After two weeks of very little sleep, and several missed days of work, we have decided to hire someone to help with Riley overnight, despite coverage being denied by our insurance. We will have someone stay Sunday, Monday and Tuesday nights, and Joel and I will rotate the other 4 nights, 2 being on the weekend. Hopefully this will get us through until Riley gets on a better sleeping schedule. We can't figure out how he keeps going. He gets the same or less sleep than we do, doesn't nap, yet fights sleep every night. It just seems his little mind gets obsessed with something and he can't let it go and it keeps him up, sometimes for hours. I believe we need to look at changing the anti psychotic medication he was put on about a month ago because I don't see that it is helping AT ALL. Joel and I have been taking turns trying to get Riley to sleep all evening, and now the nursing assistant is in there rocking him. I have to teach a class for the next two days at work, so I have got to get some sleep. Unfortunately, after 2 good nights of sleep last night and Saturday night, I'm thinking this will be one of those nights he is up until 2am. Please pray that Riley has peace and can get some good, quality sleep. Also, that we can get the right medication to help treat the compulsive behavior that keeps him up at night and keeps him so agitated during the day. Good Night All!

One Year Ago Today

2010-03-04T20:31:00.000-05:00

For those of you that don't know, I began blogging on carepages March 7, 2009. This was the day after Riley was diagnosed with ALD, which was very devastating news to both Joel and me. I can still remember so clearly the emergency room doctor and the endocrinologist who had been treating Riley taking us into a private room off of the ICU while Riley slept and telling us. I thought instead of doing a new post, I would re-post that very first post from almost one year ago. It is unbelievable how our lives, and especially Riley's, have changed in one year.

3/7 The day after our worst day ever

We were moved out of ICU last night into a regular patient room. We were all exhausted after yesterday. They came and got Riley yesterday morning a little after 9am to take him for his MRI. The MRI was ordered after the CT scan was abnormal when he came in on Wednesday.

I'll back up. Riley has been complaining for a couple of weeks of being tired and not feeling good, but can't tell us what doesn't feel good. Like "normal" parents, or so we are told, we would say "we are tired too, but you still have to get up and go to school", etc. Well Wednesday, he did the same routine. He came in my room after getting up and laid in my bed, moaning and groaning about being tired and not feeling good. I told him if he was really sick, I would keep him out of school and take him to the doctor, and he said ok. So, since we couldn't call for an appointment until 9am, I asked if he wanted to ride by my work. This perked him up, basically because we usually have very good snacks at the office, and he thought he that was a great idea. By the time we got to the office, he was not as perky, although he did ask about the snacks! Ms. Teresa (the other Teresa in our dept.) brought Riley some breakfast casserole (thanks Sharon for the leftovers), and that kept him satisfied for a while. He feel asleep in my office floor, which I knew was unusual. Meanwhile, we couldn't get in to the doctor until 10:45, so I let Riley sleep and did a little work. Before I could leave to take Riley to the doctor, I was called in to a meeting, which was a blessing in disguise. I had to call Joel to see if he could leave work and come take Riley to his appt. He did and they did blood work and didn't find anything wrong, so basically, we thought he was faking. Joel decided to keep him out of school the rest of the day, so he took him for some lunch and then they went home.
I had told Joel I would leave work around 4pm and come home so he could go to an appt he already had scheduled. Shortly before time for me to leave, I got a frantic call from Joel that Riley was having a seizure - this is why it was a blessing in disguise - that Joel was home with Riley and not me. Riley has had seizures in the past and every time, Joel has been there. I don't think this is just by chance. I freeze when this happens and Joel jumps into gear. Joel was on a conference call after putting Riley down for a nap. Joel is a terrible pacer while on the phone, and was pacing around the house, and he peeked into Riley's room. At first, he didn't see Riley in his bed, so he opened the door wider, and Riley had fallen out of the bed face-first. He was face down on the floor with his feet and legs still in the bed, and he had vomited. We don't know how long he had been like that. When Joel got to him he was seizing. This is the scariest thing to go through, but it's happened before and we thought it was the same as in the past, although the seizure did last much longer. I left work with Heidi driving and we met the ambulance pulling out of the neighborhood as we were pulling in. Joel was already in the ambulance so they wouldn't stop for me, so we had to go separately to the hospital. The seizure continued in the ambulance until they gave Riley Valium. I'll pick up with the emergency room but have to take a break now...

In the emergency room, they started doing blood work. Riley's sodium came back dangerously low. Because of that, and his great winter suntan, the doctor suspected Addison's Disease. This is a rare disease that affects the adrenal glands. It is treatable through medication. Another diagnosis they were looking into was Water Intoxication. This could dilute the sodium, and Riley drinks and actually craves and begs for water. A CT Scan was ordered because of the seizure. Our first trip to radiology was a bust. Riley was hysterical. They decided to sedate him and do it later, so we were sent back to the emergency room. All this time, Riley was coming in and out, but still had not talked to us for a few hours.The first time he finally spoke, the nurse was messing with his IV and he turned to the nurse and said "I don't like you." We were all thrilled he had talked to us. He began to come out of it a little more, so we decided we would try to talk to him about the CT scan and try it again without sedating him. We tried it again and were able to get it without sedating him. When the results were read later that night, we were told there was some swelling in the white matter of his brain. The doctor working with Riley was in contact with the radiologist reading the results, and while there was some concern, Riley was not exhibiting any neurological symptoms. We were told they would do an MRI either Thursday or Friday and that he would be admitted into Intensive Care. We had always been sent home in the past when he had seizures related to fevers. Wednesday night, we all three stayed in ICU and they woke Riley up every hour to ask him questions, such as his name, age, etc. He responded appropriately. During this time, he was being given sodium at a very slow rate to raise his sodium very slowly. Doing it too fast can cause problems with the brain. By morning, they were pleased with the way the sodium level was coming up. The endocrinologist met with us on Thursday, and she agreed that everything was pointing to Addison's Disease, which was great because this was the best case scenario. At the same time, the radiologist was still concerned with the CT scan and was anxious to see the MRI results. Thursday in the ICU was rough. Riley was given some ice chips at about 5am, and that was it. He started begging for water, and was very angry that he couldn't have any. He never asked for food, but begged for water. For some reason, he blamed me for not giving him water, but not Joel. He was so frustrated and didn't know how to deal with it, so he started saying anything he could that he thought would hurt me. The best was, "I don't like the way your clothes look"! Also, he hated our dog, and wanted to kick me. He even asked Joel if he could pick him up in the bed and move him further away from me. That day, we decided to put in a PIC line in Riley's arm so they wouldn't have to stick him anymore to draw blood. They were taking blood very frequently to check his sodium. Riley was sedated to put this in and basically slept the rest of the day Thursday.

Friday, Riley was supposed to have his MRI at 8am, which ended up being around 9:30. He was sedated again for the MRI. Once again, he slept a lot of the day after being sedated. Friday afternoon, three doctors came to us at Riley's bedside and took us in to the doctor's lounge in the ICU, and told us Riley was being diagnosed with ALD, adrenoleukodystrophy. We were told this was a possibility on Thursday, but unlikely because Riley was not exhibiting neurological symptoms consistent with the disease. I really wasn't terribly worried about this until Friday. Joel and I were talking with Dr. Macky who had been with Riley for the past 48 hours. He was getting ready to get off from his shift and came over to tell us he was leaving. We were talking about how optimistic the endo was about this being Addison's, and he told us that although that was true, the radiologist was just as certain that what he saw in the CT was ALD. And then this was confirmed by what the doctors told us that afternoon. There is a blood test that is currently being done at John Hopkins that will give 100% confirmation, but the doctors felt strong enough about the MRI results to tell us that this IS what Riley has.

Needless to say, both Joel and I completely broke down. To hear that your child is so sick, with a potentially fatal disease is devastating. After a lot of crying, we both called our parents to tell them about the new diagnosis. That was yesterday, the worst day of our lives. We met with a geneticist yesterday afternoon, and she and Riley's endo immediately began contacting their counterparts all over the country. Although this is a terrible thing to deal with, we've been told by several of the doctors that, because it is so rare, this is already getting a lot of attention from all kinds of doctors and there are a lot of people working on Riley's case. We've even had a couple of doctors come by and ask to take pictures of Riley's bronze skin for teaching purposes.

We met with the endo, Dr. Rincon today. She has already put together a lot of information for us regarding the adrenal part of this disease. Riley is already taking the steroids necessary to control that orally. The two doctors are both gathering information over this weekend and are meeting on Monday to come back together and see what each one has come up with. Right now, Duke is looking like a likely place for Riley's treatment. They do a lot of work with bone marrow transplants in children in cases that are NOT cancer. We are not sure of the treatment plan, but we've been told that because Riley doesn't exhibit the neuro symptons someone with his MRI results should, he is probably going to be a perfect candidate for a transplant. In children who do exhibit these symptoms this is usually not the treatment plan.

We will probably go home tomorrow and continue the adrenal treatment orally, and come back in late next week to discuss the next step. I will keep everyone up to date. Joel and Riley are both sleeping peacefully right now, and I'm ready to join them! It's been a long day and a crabby cranky one for Riley. Hopefully getting home tomorrow will be a good change of scenery. Keep praying for our little man.

It was a LONG night

2010-03-03T20:24:00.002-05:00

Joel put Riley to bed last night sometime around 9:30pm. After a catnap, he woke up around 10:30pm and decided he was "starving" and needed to be changed, over, and over, and over, and over again. He finally fell asleep at 4am. Needless to say, I am not on the top of my game today. It was supposed to be Joel's night, but that is a whole other story. Around 2am, after being completely exhausted and fed up, I went in the bedroom and woke Joel up and told him he needed to get up and move Riley's rocker into his bedroom (lately it gets moved back and forth between the living room and bedroom), give him some Benedryl and I would be back to take care of him after I ate about half a sleeve of thin mint cookies. The rocker was a nice distraction, but it was still two more hours before Riley finally gave up and went to sleep. Surprisingly, he woke up around 9:30am in a great mood. I can't say the same for me...

Riley had a good day with Lexi. They took a trip to the mall today. She said he LOVED the elevator, so they proceeded to ride it up and down several times. The whole time, he kept saying, "a spaceship!" He was actually still in a really good mood when we got home from work this evening. I'll stop there - I don't want to jinx it! Good Night

March 3 - It's Snowing in Chattanooga (again)

2010-03-02T22:08:00.001-05:00

When we moved to Chattanooga, I just knew we were going to get more snow than I did growing up in SC, being closer to the mountains and such. I was wrong. Up until this year, I believe I remember getting snow one time. This year however, we have gotten several "decent" snow falls. And by decent, I mean only a inch or two. Today when I woke up, I noticed it was snowing, mixed with some rain. By the time I left for work, the biggest snow flakes I'VE ever seen were coming down. They were as big as cotton balls! I so wish Riley could see it and enjoy it, but I have a feeling getting wet would just make him mad!

Yesterday was his first full day with his new nanny without me there. They had a great day and he was in a good mood pretty much the whole day up until time for Joel and I to get home from work. That's ok with me. I would rather him be happy the whole day, even if we aren't there to enjoy it. Lexi sent me a text yesterday and told me they went through the car wash. As soon as Riley heard the water coming down he said, "I knew momma let daddy go to Heidi's pool party!" Riley has been "stuck" on Heidi's pool party for a long, long time now. He says it all the time. Heidi's pool party is a real pool party that we go to every year, but it has also become a code word for taking a bath, and apparently, Riley's "happy place". I can't wait until July when we can go to the "real" Heidi's pool party.

We have had a good night with Riley and hopefully it will continue through til morning. It's Joel's turn to get up with Riley tonight and he doesn't function very well without sleep!

March 1 - Can you believe it??

2010-03-01T18:07:00.000-05:00

I know it has been a while, once again, since we've posted. Aside from being just plain busy, I feel like I just don't have the strength nor the energy to do it. I know that sounds pretty dramatic, but I don't know how else to describe it. Some of the things that have been going on - we were approved for 10 overnight visits with a nursing aid. We got a sweet girl, Alexis, who just graduated from nursing school. She has been coming on Sunday, Tuesday and Thursday nights. Unfortunately, last Sunday was her last visit. We requested more visits but have been denied twice. Some nights Alexis was very busy with Riley when he doesn't sleep and others, she was asking me for things to do to keep her busy because he would sleep all night. She also became the chief folder of laundry at our house, and, one night she even took on the task of organizing Riley's playroom. This became the room where everything went when we got back from Duke. There were tons of new, unopened toys, along with all of Riley's "old" toys, along with decorations from his hospital room, things he made at Duke when he was able, etc. At least it is categorized now, and once again, waiting on me to do something with it. We will be sad to lose Alexis as Riley's night nurse..

Let's see. What else? Four of my oldest, or should I say longest friends came for a long weekend back in January. The 5 of us get together once, sometimes twice a year, usually some place a little more exciting than Chattanooga. Last year, Riley and I were suppose to head to Charleston, SC on a Thursday. I was going to drop him off with my mom for a long weekend, and head to the beach with the girls, but unfortunately, the day before we were to leave is when Riley had his seizure that lead to his diagnosis of ALD. It is so hard to believe that this Saturday will be one year since the devastating news. I wish I could say things are so much better than a year ago, but that wouldn't be true. I can say we are blessed to still have Riley with us, no matter what.

Grammy (my mom) came to stay with us for a week around the middle of February. She started taking Riley on 1 1/2 hour rides in his wheelchair all over our neighborhood and the adjoining neighborhood. This seems to be one of his favorite things to do. We will definitely have to keep this up!

Since I last wrote, we were able to get an appointment at Siskin Children's Institute. Riley had his initial assessment and has been back for one more PT appointment, but unfortunately, we are having a little trouble a regular therapy schedule started. Both we and Dr. Stephanie want him in PT, OT and Speech therapy at least 2-3 times per week. Hopefully, we will get this worked out soon. One thing we were able to get from Siskin on loan was a gait trainer. This is basically like a baby walker, but it is big enough for Riley. His upper body can be strapped in so he has to stand up-right. Joel gets him out almost everyday and has him walking down to the neighborhood pool. This is 3 houses away from us, so it is a good little walk for him. Still not much luck getting him to walk without it, although he can - he just chooses not to.

Several weeks ago, Riley was put on an anti psychotic drug. This was to hopefully help with his compulsive spells, as well as help with his mood. We are to the point where we just want him to be happy. Have you ever been around a 7 year old that is only happy for very brief periods each day? It is very hard to see when he should be playing and having a great time with his friends at school and church, etc. Just this weekend, we think we are beginning to see some progress.

Speaking of school. I think we are finally on the right track of getting Riley an assessment meeting by the special needs people with the school district. His homebound teacher has been a bulldog about this and I don't know what we would have done without her. You would think all this stuff just takes a phone call and then people are there to help you, but it doesn't seem to work quite that way, and of course we have no idea what the protocol is. I think we have actually made progress in beginning to find out what kind of programs are out there for Riley when he is no longer required to be homebound. Hopefully, we will also be able to use the resources available in the school district to better understand what vision impairments Riley has. We know Riley can see a little, but really have no idea how much. We think by the way he clings to us, it isn't much at all, and he will basically have to be taught as a blind child would.

Since we are almost a year post transplant, we have started getting Riley out a little more. I really thought this was going to be a struggle between me and Joel (the germ-a-phob). I know, he is only that way because of Riley's safety, but we both can agree that at some point, his mental health comes in to play and the benefit of getting him out more is worth a very, very small risk. Riley has been to the mall at very, very slow times (which is not good to hear about when you are in the industry I am!), a Pictionary party with some close friends, out to eat at Big River and a trip to the grocery store in his wheelchair just yesterday. All successful outings, although he did sit with a blanket over his head pretty much the whole time at the Pictionary party. But he wasn't complaining!

That about brings everyone up to speed on what has been going on with us with one exception. We have lost our nanny, Tiffany. She has some things she needs to take care of, but we still expect to see her often. She was a tremendous help to me in my transition back to work, and with Riley. We love her and wish her only the best! Just as we were blessed to find Tiffany, we were also blessed to find our current Nanny. Finding someone to care for your child, especially with the needs Riley has, is a very daunting thought. I had already started thinking I may I have to go back home and stop working for awhile until we found someone, and that was not something I was necessarily prepared to do. I was mentioning this one night to Riley's night nurse, Alexis, when she said, "I would love to take care of Riley." I didn't even think this was an option since she just graduated nursing school, but for reasons I don't even care to understand at this point, working a normal, daytime schedule is what she wanted to do while she studies to take her test for her LPN, and she is considering going back for another year to year and a half, which would be great for us. Regardless, we have her for a minimum of 6 months and that is good enough for us right now. I truly believe God sent these two wonderful people into Riley's and our lives when we needed them most.

Our next big step is taking Riley back to Duke in April for his one year follow up. At this time, he should get off the majority of the meds he is on and I could not be more happy about that. Now that I've practically written a chapter, I will close by thanking all of you again for your thoughts and prayers for Riley. Don't let up! And, I will try to do more frequent and SHORTER updates going forward.

It's been awhile...

2010-02-03T21:58:00.002-05:00

I can honestly say we haven't posted lately because there just isn't enough time in the day. It seems we are busy all the time. When we do finally finish everything for the day, we are so exhausted we just want to fall in to bed. Functioning on no sleep takes its toll.

So, to bring things up to speed, first of all, I want to give a long overdue thanks to my good friend Andy Gribble. Andy and I met back in 1995 when he was the superintendent on the renovation of WestGate Mall and I was the property accounts manager at the time. Andy builds malls, among other things, but several weeks ago, he built a ramp. A ramp that both Riley and I can go down to get in and out of the house without having to use the stairs. It is going to come in really handy when Riley decides to start walking again! Thanks Andy. We can't tell you how much we appreciate it .

Speaking of WestGate Mall, I started working there back in 1990 when I was 19 years old. I met 4 wonderful women during my time there, and they are some of my dearest friends. Beginning about 10 years ago or so, we all started meeting once, sometimes twice a year, to get together since we are spread out over the country now. Last year, we had booked a trip to Charleston, SC for our spring trip. I planned to drive down and take Riley with me and drop him off at my mom's, also in Charleston, for a long weekend with his Grammy. We were to leave on Thursday, March 5. Riley had a grand mal seizure on Wednesday, March 6 and the rest is history. This year, my girlfriends were kind enough to forfeit a trip to the beach or the mountains and instead come to Chattanooga since I can't really go anywhere. We had a wonderful time doing mostly nothing. It wasn't near as relaxing as our usual trips, as they insisted on cooking, cleaning and taking care of me and my family all weekend. Alice and Karen even took our cat, Ling, to the vet Saturday morning. Unfortunately, it wasn't good, and I'm sure you will all be hearing more about that in the future. We are just trying to keep her comfortable at this point.

We did manage to get out to a movie on Friday, then spent 2 1/2 hours trying to get home in the snow. Riley enjoyed the company as well, especially Gail, who he calls Nonna. After two wonderful, happy days last Thursday & Friday, due basically to an increase in Riley's adavan, he began getting more agitated and unhappy as the weekend went on. Dr. Martin at Duke had spoken to Dr. Stephanie here in Chattanooga and they had prescribed a new medication, an anti psychotic, to help with Riley's mood and obsessive compulsive behaviors. Since we had such a good result from increasing the adavan, we decided to wait on the new medication. It was just a little scary putting him on a new drug, but we finally broke down last night and started the medication. He looked pretty stoned for a little while, then he became very sweet and happy. He woke up the same way this morning (after sleeping all night). That didn't last long. Poor Tiffany, his Nanny had to listen to his inconsolable cries and screams for practically a straight 7 hours today. We did feel a little better when we were told it would take a few days for the medicine to begin having an effect, so there is still hope.

Two other things we are very excited about - one, Riley has an appointment tomorrow morning at Sisken with an awesome doctor that specializes in brain injuries. We are meeting with the whole team - the doctor, OT, PT and speech therapy. The guy that set up the appointment said it is unheard of for the whole team to meet with a patient at one time. We are hoping this means they are taking a special interest in Riley's case. Second, we were approved for 10 overnight nursing assistant visits. Our nurse assistant, Alexis, stayed with us last Thursday and again last night. She will be coming on Tuesday, Thursday and Sunday for 3 weeks. If needed, we can try and get more visits approved, but hopefully we will have Riley's sleeping back on track by then. If not, we may go crazy by then!

I also want to say hello to Joel's Uncle Bill and Aunt Jan. They stopped here on Monday on their way back to Chicago and stayed with us. I wish Riley would have been in a better mood!

I guess that brings everyone up to speed. We are busy all the time and typically functioning on very little sleep. That's about the story of our lives right now. Say prayers for a great visit at Sisken. We really hope they are able to help Riley.

Insomnia, It's What's for Dinner

2010-01-24T10:44:00.000-05:00

Since the last update, Riley has been recovering well from his procedure. Toes look great and he can stand without any apparent pain. We're waiting to try and walk until after our follow up with the doc this week. Thanks Alan for hooking us up with your Podiatrist friend!!

Riley does have an ear infection and was complaining that his “tonsils hurt” last week. Fortunately, no fever, so we’re just using antibiotic ear drops…no need to throw another antibiotic into the mix (already takes two).

Aside from that, our newest issue is Riley’s sleeping pattern, or lack there of. We’ve been working with Dr. Stephanie trying to find the right med to knock him out (that sounds bad), but they almost seem to have the opposite effect. For those of you that have seen Happy Feet, that is Riley is his bed…literally! Aside from the sporadic full night of sleep, Riley is falling asleep around 11:30 or so, then usually is up every hour or two, sometimes to eat and others to take off his pull-up.

On top of that, he seems to have a touch of O.C.D. (Obsessive Compulsive Disorder) in that he will run through the same routine of, “lift me up in a bed” while he’s lying in it, “take off my pull-up and wipe off my bottom” after you lift him up and put him down, and the newest is “give me a Pooh blanket.” No exaggeration when I say we run through this trio dozens of times!

Needless to say, this is really starting to take a toll on Teresa and me. Thank goodness for caffeine and 5-Hour Energy drinks!!

Peace

Surgery Went Well

2010-01-20T18:37:00.003-05:00

Everything went fine with Riley's surgery yesterday. We were told he would sleep most of the day - NOT! On the way home, he kept rolling his head over towards me and saying, "I love you mommy." He was pretty out of it. We tried to lay him down when we got home. I was going to take a nap with him, but he just kept talking. He would say, "Mom, you're a lady and I am a boy." I believe he finally took a nap around 3pm yesterday.

Joel left for a meeting in Nashville after Riley's surgery yesterday, so Uncle Brian and Tiffany (our nanny) are here with me. We put Riley to bed and thankfully, he slept all night. He woke up in a pretty crabby mood this morning. I'm sure some of it is the morphine wearing off, and maybe some pain from his toes. They were bandaged until today. I came home at lunch and took the bandages off and soaked his feet and put medicine and bandaids back on. Riley did not enjoy this at all, but it has to be done twice a day. While I was home at lunch, he started saying his tonsils hurt, which I took to mean he had a sore throat. He also kept scratching his ear. When I got home from work this evening, I noticed the same ear had been draining. Dr. Stephanie came over tonight and confirmed that Riley has an ear infection. We have started him on ear drops since he is already on two antibiotics. I don't think I have mentioned how wonderful Riley's doctor is, but I must now. Since we have been home (November 24), we have made one visit to her office. She has come to our home once a week since then. She has come on Sundays, her days off, late at night, whatever it takes. Riley always enjoys her visits, although tonight, that did even help his mood. We have been so blessed to have such wonderful people surrounding us through this whole process. Hopefully Riley's toes and ear will feel better tomorrow and he will be more like himself. I miss his smiling face!

Surgery Today

2010-01-19T06:17:00.005-05:00

It has been a while since I posted, but things have been a little crazy. When we were at Duke last Monday, there were several things we discussed with Dr. Martin that we needed to follow up on in Chattanooga when we got back. The first, Riley's ingrown toenails. I am not sure I have even mentioned this in the past, but Riley has ingrown toenails on both his big toes. On his left toe, both sides of the toe are ingrown. This was most likely caused during the period when he insisted on wearing his tennis shoes all the time, even when he slept.

We had dinner with our friends Alan and Alison Lebovitz Wednesday evening after getting back from Duke on Tuesday. We were telling them about needing to find a podiatrist for Riley and Alan said, "I know a podiatrist." After a few emails and phone calls, we had an appointment scheduled the next day. Dr. Kraus, was awesome and had the surgery scheduled for Friday. We spent a lot of that day getting everything ready. Duke sent over all of the paperwork on Riley's medical history. That evening at home, we received a phone call from the surgery center. They said after reviewing Riley's medical history, they did not feel comfortable doing the surgery there. By the next day, Dr. Kraus had the surgery scheduled for today at the hospital. We had to be here at 6am for his 7:30am scheduled surgery, but he still has not went back yet. Riley is very happy right now, talking about Happy Feet. Maybe he knows he is about to get his feet fixed! Say prayers for a successful and uneventful surgery. Unfortunately, they are going to start an IV after Riley is asleep since they will not be using his port for medication today. Hopefully we can get it working again.

We are home!

2010-01-12T23:35:00.002-05:00

I just wanted to give a very quick update that we are home from our quick trip to Duke. We actually made the 7 hour trip home in only 7.5 hours instead of the 9 hours it took us to get there. We had a much better trip home than our trip going to Duke.

One interesting thing happened today. Apparently, Riley lost one of his top front teeth! We don't know when it happened, but apparently, he swallowed it. Joel was changing him in the car and he was smiling and I noticed it was just gone. We never even knew when it happened, but I guess the tooth fairy will visit our house tonight, even without a tooth under the pillow!

Of all the tests that were back before we left Duke, everything came back in normal ranges. They drew a ton of blood and sent some off, so other results will be back later. We will have to go back again for a full week around April for his 1 year post transplant follow up. We have several things to follow up on with Riley's doctor here now that we are back, but I am too tired to list them out. Before I turn in, I just want to wish Deidra Bartel and Shannon Gonzalez both Happy Birthdays!

THE Worst Roadtrip Confirmed - Monday, January 11th

2010-01-12T23:30:00.000-05:00

To pick up where Teresa left off, yes, it is officially confirmed that this has been the roadtrip from Hell!! The “sleepy” medicine did absolutely nothing, except perhaps increase Riley’s appetite.

From about 12 am when T signed off until 3:30 am or so, Riley kept asking for various things…shoes, Crocs, cloths, pull-up change, etc. Then at that point, we started on the food kick…chicken nuggets, cheese pizza and the one that stuck, chips and salsa. Riley was not “asking” for this item, but instead screaming in a sort of high pick whine that I imagined the entire Southeast could hear. Finally, at around 4 am I just got dressed and headed out into the dark, cold streets of Durham to find me some crack…er…I mean chips and salsa. Luckily, there was a 24-hour Wal-Mart just across the street, so I picked up some staples to get us through till sunrise. By the way, I could hear Riley all the way down the hall!!

When I got back, Riley started munching on everything I got, then FINALLY got sleepy at 5:30 am. No point trying to sleep for 30 minutes, so I just got in the shower and I’m now sitting down stairs eating breakfast and drinking LOTS of coffee. I guess Teresa is up (she dosed with Riley), but I’m guessing I’ll probably have to wake her up as well. I must give her props, her patience today far surpassed mine!

Before I sign off, I just wanted to clarify something for everyone. I’ve been asked by many people how Riley is really doing. So, I’ll be as honest as I can. When Teresa and I say he’s doing “better”, keep in mind we are thinking back to the 2 months or so he was basically catatonic in his hospital bed. There really is no comparison as to how he was before our nightmare began. I don’t know how else to say it, other than he is mentally “challenged” now. Yes, he’ll interact when you touch him, very similar to how an infant responds, but there is no verbal interaction. He will not respond to any verbal commands, more of just physical stimuli. Additionally, our newest challenge is that he has completely given up on trying to walk. He physically can, as I had been able to put him on the treadmill and he walks perfectly. However, he will say he does not want to walk and just sit whenever, and wherever, he is.

Regardless, we still have him and will continue to pray for a miraculous healing. I better head upstairs and get sleeping beauty out of bed.

Peace!

Possibly the Worst Road Trip Ever

2010-01-11T00:20:00.000-05:00

This may be the longest “7 hour” trip we've ever taken – and we get to do it again on Tuesday. I think it is going to be closer to 9 hours. We have had a rough few days. Riley has some sort of virus that is causing diarrhea and vomiting. We knew when he was still sick Friday we would not be able to make the trip to Duke on Saturday for Riley's 9 month post transplant appointment. Luckily, he only threw up once yesterday, and so far, none today. The diarrhea is another story. Joel and I have developed quite a system for changing pull ups in the van. Unfortunately for Joel, he gets the bad end of the deal, but that was just how the logistics worked out! I spoke a little too soon – Riley just spit up a little. It's 10:31pm, so he almost made it through the whole day. I'm not sure why, but he asked for a gulp of beer when he was done. Number one, we don't have beer in our van on our trip, and number two, we would never give it to our seven year old son, but he says it just like it is the most normal thing in the world. He also informed us tonight that he quit and he does not have a job. Later, he said he wants to get a job!

The first clue that it was going to be a rough trip today was when Riley was up until 2:20am this morning. That was an improvement from 3:30am on Friday night. Both nights he was up eating, so I stayed up and accommodated his many changing cravings since it was the first solid food he had had in days. He was up again at 3:40am and 4:40am this morning. The second clue was when didn't leave until 2pm this afternoon. We knew we would have to take a longer route since 40 is still closed from the rock slide, but we have gotten to see some beautiful snowy landscapes in Virginia, but that is about the only good part of the trip (besides it being safe so far, knock on wood). When we first got in the van, the GPS showed our ETA as 9pm. With every stop we make, and they have been numerous, it gets later and later. I believe we are up to about 11:30pm. As I am typing this, Riley is asking me to “hand over a suitcase”, and telling me he wants visitors. Now, he asked me for a washcloth, so I handed him a baby wipe and he has washed his face and hair with it, I guess getting ready for those visitors!
Or, he is just so tired he is delirious and looking for a way to stay awake.

I think we are all a little delirious, and unfortunately, Riley has to be a Duke at 8am. I am praying it is not another late night. There won't be much in the hotel room to keep Riley entertained, or to feed him during those late night cravings. Riley has been doing some praying of his on. He has been saying, “Praise the Lord, Dr. Martin”. I can't wait to see what he says and does when he sees him tomorrow. We had to give him something to help him sleep so hopefully that will start kicking in soon, but who knows, he has also had it the past two nights and it did absolutely nothing. It could be a long few days. I want to wish Rich and Olivia Gonzalez both a very HAPPY BIRTHDAY, and Shannon and Rich Gonzalez a very HAPPY ANNIVERSARY. I have been so bad with the holidays and birthdays this year, but my thoughts have been with them all day today. Sorry guys, I'm still carrying your cards around with me.

Well, we are here. We are all three in bed and it is 12:12 now and Riley's sleepy medicine is still not working. Now I know tomorrow will be a long day! Night Night.

Vomit Watch - Joel Update

2010-01-08T08:43:00.002-05:00

I think the title of this post says it all! For the last few days, Riley has not been feeling good. He started with diarehha Tuesday, but has decided to kick it up a notch and interspurse with vommit. Normally, we'd just let this run it's course, but obviously NOTHING ever is "typical" or "normal" with our little Riley.

Fortunately, Riley's vitals and labs are still normal, so our battle is just keeping him hydrated. Orange Gatorade is organge going down and coming up, so that's out. The only thing working is pedialyte directly through his g-tube. More than likely, our home health nurnse, Rebecca, will be out later today to give Riley fluids through his port. We thought we'd have to go to the hospital to have this done but where very relived when we found out Rebecca could do this here. The hospital is the last place we want to go!!!

Let me say that our new nannie, Tiffany, is absolutely wonderful!!!!!! We couldn't of asked for anyone better, except perhpas for Mary Poppins, which would be cool to jump into a sidewalk chalk drawing and ride carousal horses...but I digress. This is not a normal nannie position, as Riley is very high demand, and we knew it woudl take a special person to handle it. Well, Tiffany is it. She is filled with such love and patience, it is amazing. Coincidence...I think not! He lead her to us; and us to her!!

Turning to Riley's pedicatrician, Dr. Stephanie Stegall, she too has been absolutely amazing! She has been coming to our house for the weekly checkups, calling us to make sure he's doing well, and also gave us her cell number...which I have definitely taken advantage of.

Well, I'm running on about 3 hours of sleep, so I think I'll try and let the soothing sounds of Riley's teeth grinding help me drift off to sleep (sounds like a loud, squeaky rocking chair).

Peace all!

New Year, New Routine

2010-01-03T22:30:00.003-05:00

New Year's Eve was bitter sweet for Joel and me. We were able to get away for a little while and spend time with some friends, but we definitely put a damper on things for everyone else at midnight. We couldn't help but reflect on the not-so-good 2009 we had. We were both in tears by the time the ball dropped! This was Riley's first time having his nanny, Tiffany, sit with him at night. I was so pleased when Tiffany sent me a text and said Riley was really happy and kept kissing her hand. He called her everyone's name BUT hers, but hopefully he will get there.

New Years Day was spent in the basement watching football on the big screen all day. The southern New Years meal of collards and black eyed peas definitely ended with my mother. I love cooking for Thanksgiving and Christmas but New Years just isn't my thing. Our friend Doug came over to watch football for awhile and Riley was so sweet. Whenever you lay him down in his bed, he immediately gets happy and very chatty. Doug went in to tell him good night and he just came alive. The sweetest thing he said was "Doug, I will always be with you." Precious.

Overall, it has been a good weekend. I am excited to see what tomorrow brings, for me and for Riley. He will be home with Tiffany all day for the first time without me. I am coming home at lunch because I just want to make sure he knows I am coming back. It will also be so strange being back at work after all these months, but I am very excited about it. Also a little nervous because I'm afraid if people ask me about Riley, I'll just breakdown. I always seem to at the oddest times.

I need to take a picture of Riley to post. Joel shaved his head today. He was beginning to lose his hair again. This is because he is no longer on cyclosporin, which causes hair to grow everywhere in the first place. It definitely made his hair come in quickly, but now that he is off of it, he will lose this very fine baby hair that came in and it will be more like his normal hair when it comes back. It is good and bad. Good because he lost all of the hair that was growing on his forehead, and his sideburns, mustache, etc. that Joel had shaved off have stopped growing back, but he is also losing his eyebrows and I'm not sure his new ones coming in is going to coincide with the old ones falling out.

Riley's newest thing this week is wanting Joel to "lift me up into the bed." He would stay in the bed 24/7 if we would let him. He still has his negotiating skills. A couple of days ago, every time Joel would pick him up he would say, "Look at those muscles Joel, your strong, look at those muscles." Now he tries to use this every time he wants Joel to put him to bed. He'll start saying, "Your strong dad, so just pick me up and lift me up in the bed." I've got to get that on video!

Last but not least, I want to thank EVERYONE at Hickory Valley Christian School. Every year, the kids do a fundraiser called Chunk your change. They bring in their own change to donate to a cause. This year, the cause was Riley and teamgreene! I had planned to go to a presentation at the school several weeks ago and wasn't able to, so we received a visit today from Ashley Nelson who is the mother of one of Riley's classmates, Evan Nelson. Ashley brought us a huge stand up card that the school made for Riley that has all of the students' thumb prints on it. Also, his classmates made him cards, and we were presented with a check for $885.00 - all from change that these kids chose to give to Riley! I hear that some of them cleaned out their whole piggy bank to give their change to Riley. This is amazing and we are very appreciative. Also, it couldn't have come at a better time. We found out today that the apartment we lived in while in Durham is not going to be available to us when we travel there for Riley's 9 month check up next week. We had been told if no other family was admitted with a leukodystrophy disease (this is what the three apartments Hunter's Hope has are used for), that we could stay there. Unfortunately, there is a family coming in this week and that will fill the last of the three apartments. I am very glad for those families that they will get the same comfort of having at least this aspect of their journey taken care of for them. We will be booking a hotel room for our stay, which will be fine. We are only going to be in NC from Saturday-Tuesday.

I hope everyone had a great New Years and I wish you all peace, love and health in the new year!

Out with the old, in with the new

2009-12-31T09:15:00.002-05:00

I'm not sure I am as excited about the new year as I am about the end of THIS one! I can honestly say it has been the hardest year of my life, although I have a lot to be thankful for. I am most thankful that Riley is alive and laying here beside me in the bed right now (it takes a little while for him to get awake). I am thankful for the rest of our family, who have all been so supportive throughout this year, spending countless hours and vacation days traveling to and from Duke to help us out and give Riley a new face to look at! He is certainly tired of ours! I am thankful for all of our friends, who are really more like our family. We have truly been blessed to be surrounded by some of the best people that love us and treat us like family. And I am thankful for all of the people we don't even know who have taken such an interest in our lives and our little boy. We couldn't have made it through 2009 without all of the prayers and financial support of so many people who gave so willingly. It is truly the only way I would have been able to stay by Riley's side day in and day out as I have for the last nine months.

Now, we enter a new era of this journey. A New Year, a new nanny and a new routine for mom and Riley. I go back to work on Monday, and I am VERY thankful to still have a job to go to. Both my company and Joel's have been so generous to allow us to do the things we needed to do for Riley. I don't know what to expect, but I hope this will be a good change for Riley. He has become very sedentary, content to sit or lay all the time, and this is not good. It is harder and harder to make him happy, and I wonder what goes through his mind. Is he wondering why this has happened to him. as I do? Is he wondering why he can't do all the things he use to, as I do? Is he angry about all that has happened in the past year, as I have finally been able to admit I am? Please continue to pray for our family in the New Year - pray for Riley's continued improvement both physically and mentally, pray for our peace in understanding all that has transpired this past year, or if not completely understanding, at least accepting and moving forward with God's guidance. And God bless everyone in the New Year.

Merry Christmas

2009-12-25T21:50:00.004-05:00

This has really turned out to be a great Christmas. It was pretty weird waking up this morning and Riley not knowing it was Christmas. He has always been so excited to get up and see what Santa has left under the tree. This year was very different. He usually doesn't wake up very happy and it takes a little while to see what kind of mood he is going to be in. He did take a few things out of his stocking, but wasn't really in to opening gifts. He opened one present and the rest are still under the tree.

A lot of the day was spent cooking and eating. I love this time of year! Several of our friends had said they were stopping by, which was great since Riley is always wanting visitors. First to arrive were our good friends Heidi and Patty. Riley cheered up a little, then really came alive when we decided to move to the basement for a change of scenery. Brandy and Autumn were also coming by, but we got a great surprise when they brought along Rachel, Nonna and Nana. It was great to see them all, and we could tell Riley was really excited. Unfortunately, it didn't take very long before the excitement was too much stimulation for Riley and he got pretty cranky. The last of our planned visitors, or so we thought, was Tiffany, our new nanny. She had asked if it would be okay to stop by and bring something for Riley. She got to meet all of Brandy's crew, so that was good. Everyone but Tiffany left after Riley (via Autumn) opened some really cool gifts. Thanks everyone! So Riley was having a little dinner while me, Nonna and Tiffany were talking when we heard a knock on the door. Nonna immediately thought Papa had went outside and locked himself out of the house, but then realized she heard singing. Someone answered the door, I'm not sure who, and there standing at our back door singing Christmas carols were several of our friends, Heidi, Patty, Jeff, Lori and the Sinclair family! It was wonderful and made my whole day! Riley was still busy eating and didn't pay too much attention, but it was just what I needed. Thanks guys! It was wonderful getting to see so many of our friends on Christmas, old and new. We are so blessed to have such good friends! I want to wish all of our family and friends who we weren't able to be with this year a Merry Christmas too. We miss you and hope to see you all in the new year!

Merry Christmas Eve - Eve

2009-12-23T17:02:00.003-05:00

I must hurry... I don't have long. It will only be a few minutes I'm sure before Riley will tire of his "hop in the van" with Joel and Nonna and Papa and want to come back home! But seriously, that is how it feels - how much time do I have to sit here, take a breath and post on our blog?? Obviously, it hasn't been much lately. So where should I start? How about with our new nanny?! She is great! Tiffany has spent several days with Riley and I over the past two weeks and will spend all of next week with us so she will be ready to go solo on January 4. She is a trooper. It doesn't matter if it is poop or puke, she is ready! The one thing Riley is doing that does bother her (and everyone else with ears) is grind his teeth. It is the most horrible sound, unless you can convince yourself that it is the sound of someone rocking in a rocking chair and keep this image in your mind for pretty much the whole day, then it is not so bad. And Tiffany came up with that one, and she is right. If you didn't know it was Riley grinding away on his teeth, you might think you are on the porch at Cracker Barrel.

Riley is getting use to Tiffany and has started calling her "hey girl". That's a start. At least he is aware there is someone here with him other than me. Yesterday, Tiffany got to see the incredibly happy Riley. She rode with me and Riley to the airport to pick up Nonna and Papa. Nonna sat in the back seat beside Riley and he immediately realized she was there. He kept kissing her hand and said, "I'm giving you kisses." He was so happy. Papa was in the front seat with me and Riley didn't seem to notice he was there. That is until we got home. Riley was sitting in his chair and Papa sat down close by. Riley's eyes lit up and he said, "Papa, you're here! Did you come to see me? You are right here!" It was absolutely precious. Overall, yesterday was a good day. We were looking forward to the night somewhat as well. Riley began a new medication to help him sleep. We were all looking forward to a good night's sleep, but that was not to happen, at least not for me and Riley. We gave him the medicine and were amazed at how fast he was asleep. We put him to bed, but he still had 9pm meds to get through his tube. Unfortunately, when Joel went in to give him the meds, he woke up and wanted to eat. Since Joel had to get up for work today, I was officially on duty. He ate various things until about 12:30am and finally went to sleep. I followed shortly after, but he was up again around 3am. We were up until around 6am or so, or at least that was the last time I remember it being before I asked Joel if he could go in and check on him. He finally went to sleep again and unfortunately, I woke him up when I went in to give him 8am/9am meds at almost 10am. He got a nap today, but unfortunately, I was not so lucky. Although a nap would have been nice, I enjoyed baking banana bread and making other holiday goodies. I think I am finally in the spirit!

We hope everyone has a blessed Holiday. We couldn't be more happy to be home and together.

Catching Up

2009-12-16T21:41:00.004-05:00

I feel like I am so behind on posting, but things just seem to be so much busier now that we are home. It's probably a good thing I didn't post last night. As I said, Riley woke up at 3am yesterday and didn't go back to bed. When Joel got home last night, he said, "Isn't that what you were wearing when I left this morning?" My response to him was, "it's not only what I was wearing this morning, it is what I was wearing YESTERDAY, and if you look close enough, you will see I have both poop and puke on my shirt." Yesterday was just rough. Riley was not a happy boy.

We had interviewed a potential nanny Sunday night. I was waiting on references to call me back on Monday. Yesterday was off to a bad start, so I called and asked if there was any way she could come help me. Thankfully, she could, and thankfully, I got two glowing references! We officially have a nanny. Her name is Tiffany and she is a 24 year old single, Christian girl. I'm sure you will all get to know her through this blog. After yesterday, Joel and I were a little afraid she was going to call and tell us it wasn't going to work, but fortunately, we were wrong! Today, she got to see a much happier Riley. Tuesday, there was just nothing I could do to make Riley happy. At 10pm last night, Joel, me and Riley were sitting in the van in the garage. That's it - just sitting. Riley was hysterically asking to "hop in the van". We finally gave in and he was happy as he could be, we didn't even leave the driveway. After coming back in the house, he was happy for about 45 minutes before it started again. It was just that kind of day all day.

After getting a much better night's sleep last night, Riley woke up in a much better mood. I stayed at home with Tiffany and Riley for a couple of hours to make sure he was okay with me leaving, and then I left them alone for the first time while I went grocery shopping. When I called to check on Riley, Tiffany said he was smiling and was bobbing his head while she sang to him. This just made my day! I don't know why, but until yesterday, it had never even occurred to me that Riley has been with me every day for the past 8 1/2 months and that he may have some anxiety about me being away from him. That is exactly what we think happened yesterday afternoon. Tiffany, Riley and I went to the store and they stayed in the car while I went in. It took a little longer than I expected, and when I got back to the car, he was very upset. He kept saying, "Mommy, take my hand." Today when I left, I made a point to tell Riley where I was going and that I would be back. We had a completely different experience today. I think it will be good that Tiffany and I will both get to be here for a couple of weeks to help Riley with the transition.

I took Riley for a walk around the neighborhood this afternoon in his wheelchair. Big mistake. It was freezing today. Riley kept saying, "Mommy, I don't want to be freezing." When we finally got back to the house, Riley was ready to hop in the van. I put him in, turned on the heat and a movie, opened the garage door so we didn't kill ourselves, and we sat in the van, probably for a good 30 or 45 minutes. That was all it took to keep him happy, and I actually dozed off a couple of times, so it wasn't so bad.

Tonight, we were invited to a dinner as the guests of honor. This was at The Fertility Clinic here in Chattanooga where our dear friend, Shirley Sinclair works. Everyone there has been following Riley's progress over the past several months. Not only did they let us be a part of their staff Christmas dinner, they presented us with a gift. I can honestly say, I have never before opened a box full of money. Their generosity and support was overwhelming. While we were there, I got a text from Brandy, who was at our house with Riley. I wasn't sure how the night was going to go. When we left, Riley was telling Brandy he wanted Coca Cola, which we typically do not keep at the house. She fixed him some 7 Up. After one sip, Riley said, "I do not want Sprite, I want Coca Cola." I apologized to Brandy as we walked out the door! I was happy to get the text a little later that said, Riley is cracking us up. He is saying, "Jesus died on the Blue Cross Blue Shield." Just another example of how the information is all there, it just sometimes gets jumbled up! Riley is always saying, "Daddy works at Blue Cross Blue Shield, and Mommy works at CBL." Lately, he has been saying Daddy works at CVS!

So that is about it for the past few days. I will try not to get so behind again so I don't have to write these long, longs posts. I know how busy everyone is this time of year!

We have a nanny!

2009-12-15T22:33:00.001-05:00

And unfortunately, I am too tired to give all the details tonight. Riley has been up since 3am this morning and is still going. Hopefully I will have a chance to give all the details tomorrow!

Back to work

2009-12-10T13:13:00.009-05:00

Yesterday I went in to my office for the first time in over 8 months! I walked in to find rice krispy treats, a big bag of peanut m & m's, a Christmas plant and balloon - it was awesome. The girls all know food is the way to my heart! As expected, I didn't get much work done, but it was nice to be back, even if it was just for the day. Joel took a day off to stay home with Riley so I could go in and get organized. The boys had an okay day, but Joel said Riley didn't seem as happy as he usually is. I'm sure he knows now how hard it is trying to find things to keep Riley happy and occupied each day. This is such a terrible time of the year for Riley to be on isolation. If it were summer, I think we would be having a ball!

I'm continuing to chip away at the "to do" list I've created since we've been home. One of the big things on it is to register Riley for school. I tried to do that at lunch yesterday, but the Hamilton County Schools were closed because of rain and flooding. I have never lived anywhere that closes school as much as Chattanooga! Although Riley attended a wonderful private school last year for Kindergarten, Hickory Valley Christian School, we have found that he needs to be registered in the public school system to take advantage of any programs offered for special needs children. Also, they will be required to provide Riley with a teacher while he is homebound,at least through April 2010. After that, we are really not sure what the plan will be. We have started looking into different options for Riley's care. Right now, we feel it is best for me to be home with Riley, but if he does continue to improve and is able, at some point, to attend some type of school or special program, we may consider a nanny. Actually, we are already considering this as one option. It literally would take us finding THE perfect person and fit with our family to go this route. Unfortunately, time is what we need now to see where Riley will be both physically and mentally at one year post transplant. Until then, things are just up in the air.

Today it has been too cold to get Riley out, and thankfully, he isn't asking to "hop in the van." Even inside, Riley is ALWAYS cold and wants to be covered up from head to toe. Right now, he is napping in his bean bag, which is allowing me to post. Getting to do it before 11pm is a real treat! Especially since we have other plans for this evening - decorating the Christmas tree. It has been "up" since Sunday, and by up, I mean standing in the middle of the floor with one strand of lights on it. Christmas is going to be very low-key at our house this year, basically just the tree and what Joel has already done outside. Next year will be better!

Thursday - Sunday

2009-12-07T12:16:00.006-05:00

Thursday - It was pretty hard to keep Riley occupied until 4pm. This is what time we had arranged to meet Riley's teachers at Hickory Valley Christian School. I wasn't expecting it to affect me the way it did. As soon we pulled in the parking lot, I was a wreck. I just broke down because all I could think was, this just seems so unfair. All Riley wants is to be able to go to school with his friends and for things to be like they were, and this will probably never happen. Anyway, Mrs. Shepard, Riley's teacher in kindergarten last year met us at the van as I was getting Riley out and as soon as she walked up, Riley called her by name. We spent some time in the classroom and during that time, Riley called all of his teachers by name, Mrs. Aytes, Ms. Slaten and Kelly Nichols. He also talked about several of his classmates and some of the things he remembered doing at school. And I finally learned what a toodie tah means (which Riley sings a lot)! When we got home that night, Riley was already saying he wanted to go back to class.

Friday - We took a ride down to Dalton, GA to have lunch with Brandy in the mall Community Room. I thought getting out for a little while would help, but he constantly said, "I want to go to class" the whole time we were there. Pulling in the mall parking lot, Riley decided he would take off his seat belt and stand up. This is definitely a downfall of not having another person to ride with us when we go anywhere. After leaving Dalton, I had decided I would ride him by the school again to see if it would satisfy him. I was going to take Riley in the chapel but it was locked, so we walked down to the gym instead. When the office manager, Sharon, saw us, of course she exclaimed, "Riley!" Some of the students on the second floor of the gym heard her and I heard people start saying, "It is Riley!" I started to panic since Riley can't be around other kids, so we went in to the school office. Sharon asked if it would be okay to call the 1st grade teachers to bring their classes down so they could see Riley from the office. We stayed in the office and raised the blinds so the kids could come down and see Riley through the window. It was so sweet. I think he could hear the kids, even if we wasn't able to see each and every one. Then, Kelly Nichols was kind enough to let us go in one of the K3 classrooms that only meets 2 days a week and was empty. Riley knew this was NOT his classroom and did not have the same reaction as the day before. He was not happy and we were never able to make him happy that day. He just kept saying he wanted to go back to class. Things were a little stressful that day, so you can imagine my excitement and surprise when I found out Brandy and I were going for massages that night! I thought we were going to the new grocery store, Earthfare, but it turns out, it wasn't even open yet and I had no idea! We had great massages while Joel stayed home with Riley and Brandy's sister, Rachel, who is an occupational therapist, and her friend and co-worker, Jessica, came over to work with Riley. It was a much better night than day!

Saturday - This is what we woke up to!

Unfortunately, it did not last long. Saturday was a great day. Riley had visitors, which he is always asking for! My sister, Diane, (named Raggedy Diane Coggins by Riley), and her husband got to Chattanooga around 2pm. This allowed Joel and I to run a few errands. Saturday afternoon, Ryan and Sidney Sinclair and their dad, Jimmy, came by to see Riley as well. Riley kept saying, "Sid, you're a teenager." Shannon was also coming in town Saturday night. Riley recognized all of his visitors and called them by name. He definitely is aware of who is around him.

We were scheduled to go to a holiday get together at my boss's (and friend) house Saturday night. Unfortunately, Riley was not feeling very well on Saturday and got sick several times. I mentioned to Joel that I didn't think I should go to the holiday party (Diane & Shannon were both planning to stay at the house with Riley), but Joel said for me and Shannon to go and he would stay. After Riley was getting ready for bed, we decided to go. It was so great to see all of my friends from work! Most I had not seen in 8 months. It was great to get out of the house for a little while.

Sunday - Riley had a good day yesterday. He was able to see that we started putting up the Christmas tree and began singing Oh Christmas Tree! He also played with Indy and enjoyed it for the first time. Riley and I had a great time watching Shannon work on the tree! He was in a great mood. He took a nap yesterday, which was bad for me last night. He was up eating different things until around midnight. Riley hardly eats breakfast or lunch anymore. Instead, we have to feed him through his G tube. However, by late afternoon, he has a big appetite. Unfortunately, he only wants a few bites of anything and then he has thought of something else he wants to try. Of course I am just happy he is eating, so I try and accommodate whatever it is he is wanting to eat. Probably not a good thing to start... Overall, it was a great weekend and we are still just thrilled to all be home and together!

2009-12-02T22:09:00.002-05:00

I am sitting in bed listening to Riley over the monitor. He keeps saying, "I have a dream." He did this one day while we were walking in the halls at Duke and the nurses really got a kick out of it. I wish he would have a dream - one while he is sleeping.... that was last night - unfortunately, I had to interrupt my post and fix Riley a variety of foods up until 11:30pm last night and didn't get to finish. Now it is Thursday around 10am and he is STILL asleep. He started saying he was hungry last night and for at least an hour, I tried to accommodate his various cravings. I tried to start simple with some crackers, anything that didn't have to be cooked, but Riley wasn't going to have any of that. He started asking for chicken nuggets, which we didn't have, so I tried warming up some grilled chicken strips and passing them off for chicken nuggets. I took a few bites and thought it was potatoes and said, "This is not what I want." From there, I tried chips, pizza and a few other things and finally, he said, "I need to take a nap." I was able to get him to sleep without wearing his tennis shoes for the first night awhile.

Today Riley has a visit with his home health nurse, then I am taking him to Hickory Valley Christian School to see his teachers from last year, Mrs. Shepard and Mrs. Aytes. He is constantly asking to go to school, so I thought maybe it would help just to go to his old classroom, even if he can't be around his classmates. I guess we will see. Late yesterday afternoon. Riley began asking, "Where is my visitor? When will I get a visitor." It broke my heart! So today we are going to visiting!

Looking Good!

2009-11-30T18:18:00.005-05:00

Riley is looking more like himself today. Probably because Joel couldn't take it any longer and decided to shave Riley's sideburns, mustache and goatee last night. He also shaved between his eyebrows, so no more unibrow. It did make Riley look more like his old self. I was really surprised that he let Joel do it. We may end up regretting it when it starts growing back in, but for now, he looks great.

We had a busy but good day today on our first "normal" day back in town. Riley had an appointment with his pediatrician this morning, then we went to TC Thompson Children's Hospital to have his port accessed and have blood drawn. Everything went smoothly, but some how, our few errands and appointments ended up taking the whole day like it always seems to do. I just got a call from his doctor and his labs looked good, so if nothing comes up, we are good to go until next Monday! My problem now will be trying to find things to keep Riley busy and entertained throughout the day. He will still have physical therapy and occupational therapy here at home, but none of that has been scheduled yet. Also, he will eventually be evaluated and home schooled, but that will require me getting him registered, hopefully sometime this week.

Riley is sitting in his recliner trying his best to go to sleep for the night (at 6:30pm), and I am waiting on coffee to finish brewing so that I won't be asleep before 7pm myself. We are both pooped. I haven't seen Uncle Brian since we got back home this evening and I have a feeling he is in the basement taking a nap too. Long but productive day.

PS - if anyone has any suggestions of places I can take Riley where there aren't crowds, please let me know!!

So glad to be home

2009-11-28T19:47:00.002-05:00

Today has been another busy day of unpacking and it is still not done. I finally gave up late this afternoon because I knew I needed to get Riley's meds ready for the next few days. Hopefully tomorrow will be the end of all the unpacking - except for Riley's play room. It is so full of toys and stuffed animals, I don't know where to start!

Another thing I think I will be done with tomorrow - leftovers. I am a huge fan of Thanksgiving leftovers. I haven't had anything but Thanksgiving food since Thursday at lunch. I'm still not really tired of it, I just think I will be as big as a house if I don't stop with the leftovers. My mother brought everything with her from Charleston, SC and prepared a wonderful Thanksgiving dinner. I really appreciate this because if it weren't for her, we definitely wouldn't have had a Thanksgiving dinner this year. We will miss "Grammy" so much and we are so glad she was able to join us for Thanksgiving.

Riley is still asking to hop in the van everyday, usually as soon as he wakes up. He spent the day watching football with Joel and Uncle Brian while I unpacked. He also went for a walk,swung on his swing set and then, finally went for a ride in the van. He is exhausted tonight, so hopefully he will sleep well. I usually try to wait until after his 9pm meds before putting him to bed but Joel is turning the bed down now. I don't think I will be far behind him.

Happy Thanksgiving!

2009-11-26T12:41:00.007-05:00

I have never been so thankful to be home with my family as I am this Thanksgiving Day. We made it to Chattanooga Tuesday evening around 7pm. Riley seemed to be very happy and excited to be home. He did say something about "our house" but I couldn't catch exactly what he said. When he woke up Wednesday, he wanted to "hop in the van" again. I don't think he would have minded if we turned around and drove the whole day Wednesday too. He is very happy riding for some reason. He couldn't have been any better on our trip home. The only problem we had was about the last hour of the drive. He was hungry and began asking for chips, cheeze-its, pizza, etc. Of course when we got home, Joel went to the store and by the time he got back, Riley had forgotten all about being hungry.

Yesterday was spent recuperating and unpacking, as will the next several days. It is unbelievable how much stuff we had with us in NC. Making room for all of the new things we will need to care for Riley will take some time, but I'm giving myself through Sunday to get unpacked. Monday we will be back to our doctor's appointments, but fortunately here in Chattanooga!

Riley was happy to see his animals, although he doesn't like Indy getting too close. He is already doing an awesome impression of Indy licking. He has pet both the cat and the dog, but it has to be when he wants to, not when they approach him. Riley is also saying he wants to go back to class. Another reason I think he fully understands we are back home.

I don't think anything could make this Thanksgiving any better, other than the whole past 8 months to be wiped away. We hope everyone is having as happy a Thanksgiving as we are. We are so thankful and blessed to be where we are, all together.

On Our Way!

2009-11-24T14:07:00.002-05:00

We are on our way home! Riley seems to understand where we are going because he has not complained one time since we left this morning at 10am. He has talked the whole way!

Just to address some of the questions I know people have... while we are very excited to get home and see all of our friends, Riley is still on isolation. He is not allowed to be around school age children or children in preschool. His immune system is still not strong enough to fight off all the potential germs and infections that are common in schools and other settings where there are small children. Even when we received visitors, Dr. Martin said it should be in small groups, and obviously, Riley can't be around anyone who is sick or has been exposed to any sickness.

Food. First of all, I LOVE IT! I would love to come home to a kitchen full of goodies, but this is another very cautious area when it comes to Riley. He can only have food that has been cooked fresh for him - no leftovers or food that has been sitting around. Although we appreciate all of the offers, it would be better to spread things out so we don't end up with a ton of food that is sitting around that Riley can't have. Again, we appreciate all the prayers and enthusiasm from everyone on our arrival to Chattanooga!

A special note to Riley's teachers at HVCS and church: I know we will eventually begin running in to Riley's old friends. He dearly loves them all and talks about them constantly! I think it may be a good idea to begin explaining to the other kids about Riley's sickness and how the disease and transplant process has affected him. It may be easier for them to understand Riley being "different" than when he left Chattanooga back in March if they are aware ahead of time. Although I had never thought about it, Autumn, who is 10 and has seen Riley through this whole process even asked me if she drank after Riley if she could catch it. Things like that that we may take for granted may be scary to them.

Well, we are eating in the Burger King parking lot and getting ready to give Riley his 2pm meds, so I need to go! We love and miss you all and can't wait to be home!

Ready to go!

2009-11-23T17:41:00.003-05:00

That about sums it up. We are free to go to Chattanooga! Up until about an hour ago, we were still planning to head out tonight. Everything is packed, we just need to load up and go. We made a last minute decision to wait and head out in the morning. It has been another long day at clinic and we just aren't up for the drive. It is 7 hours, and that is without extra stops we think we will need to make for Riley (and Joel).

Riley had another echo today and the mass has gotten slightly smaller. He is to continue taking 1/2 an aspirin everyday and they will check it again on our next trip back to Duke on January 11. At least we will be home for Thanksgiving and that is the best thing we could hope for!

Happy Birthday to Uncle Brian!

Day 231 - Our last night at the apartment??

2009-11-22T21:32:00.002-05:00

Tomorrow could be the big day! Riley has his regular clinic appointment tomorrow at 9:15am, then he will have another echo cardiogram to see if the mass in his heart is the same, gone or bigger. If it is the same or gone, we should be good to go home to Chattanooga!

Just to be prepared, I have been packing as much as I could all day. We sent Brandy & Autumn on their way this morning with a load in Joel's car (thank you, thank you), and we are ready to load my van and Brian's car if we get the go ahead. It is hard not to be excited, but I am trying to keep in mind that there is a chance we may not get to leave. I don't want to even think of that possibility, so I won't, at least not tonight.

We have had a busy weekend with lots of visitors. Shannon came to see us Friday night and was able to go with Riley and I to pick Autumn & Brandy up at the airport Saturday morning. As soon as Autumn and Brandy got in the car, Riley started jabbering away. He was very excited! The girls and Riley stayed in Saturday night while Joel took Uncle Brian to the hockey game for his birthday. Riley was so funny Saturday night. He had a good time flirting with Brandy. He would say, "Come here Brandy. I know what you're thinking." When Brandy put her check up to him, he gave her smooches - very different than the kind he gives me! It was pretty cute, but unfortunately, I wasn't able to get it on video. Today, we had a visit from my cousin, Letitia and her family. We hadn't seen each other in years, but fortunately, we've been able to reconnect during our time here in Durham. I got to meet her two boys and hopefully, we will all be able to get together when Riley is better and it is safe to be around other kids. This evening, Riley's best buddy, Lisa (the volunteer from Duke), came by to see us at the apartment. She brought Riley some goodies back from her recent trip to Australia. We haven't seen her in awhile and enjoyed our visit.

That's about it for our weekend. I will update tomorrow when we find out what our plans are. Hope everyone has a great and short holiday week and safe travels to everyone on the road (or in the sky) over the holidays.

Bump In the Road

2009-11-20T15:10:00.003-05:00

Happy Friday. We got up this morning thinking we were going to run to the hospital and have a quick echocardiogram and chest Xray and be home by lunch time. We are still here...

Riley did not enjoy the echo even though it is not painful. It is basically like having a sonogram when you are pregnant. He just doesn't want to be messed with. The technician went to check with cardio after getting a ton of pictures and told us to hang tight incase they wanted more. Of course, they wanted more. While they were still getting more, the cardiologist came in and showed Joel and I what appears to be a clot or mass in one of the chambers of his heart. He had already called and let Dr. Martin know, who told the cardiologist to send us up when we were done to see him. It appears to be connected to the catheter connected to his new port. Both the cardiologist and Dr. Martin feel it is too soon after having the port put in for it to be from Wednesday's procedure. More likely, Dr. Martin feels it has probably been there awhile and is more like scar tissue. He said we may not have been able to see it before, but after having the port put in Wednesday and things being moved around, it may have made it able to be seen at a different angle.

The plan is to put TPA in the port (which they just finished doing), and have another echo done Monday to see if it is gone or smaller. Dr. Martin doesn't expect that anything will change, but as long as it is not any bigger, we should be okay to just have it checked again at our next appointment in 4-6 weeks. The worse part was having to access the port so soon after the surgery. I couldn't stay in the room while they did it. I sat outside with my fingers in my ears while Joel and the nurse handled Riley. Apparently the needle going in wasn't bad at all, feeling around to find the placement of the port was the worst of it.

As soon as I got back in the room, Riley was already back to smiling again. Now we just have to wait an hour to make sure nothing happens while the TPA is in, then we will be free to go until Monday. I asked Dr. Martin if this would keep us from leaving Monday and he said only if the mass is bigger on Monday, which he does not expect.

Our plan is to go ahead and start packing things up and getting ready for our trip home next week. Hopefully that is God's plan for us as well! Hope everyone has a great weekend. We are looking forward to visits from Shannon this evening and Brandy & Autumn tomorrow. Uncle Brian and Joel are going to a hockey game for Uncle Brian's birthday, which is Monday, so things should be busy here for us.

Long Day but surgery went well

2009-11-18T22:01:00.003-05:00

Riley is sleeping very soundly beside me on the couch right now. We finally left the hospital around 8:30pm tonight. He was a little upset when we finally got to go back to recovery. When we walked in, the nurse told us he had been saying he wanted to hop in the van and "when can I have clothes?" The clothes thing was bothering him before he went in to surgery. I changed him in to a hospital gown and ended up having to put his t-shirt back on over the gown because he kept saying he wanted different kind of clothes on.

He did well during surgery and hopefully won't be too sore tomorrow. He does need to stay flat for awhile because the doctor said they took quite a bit of spinal fluid to run tests and he could get a headache from that. I've had 3 and gotten the headaches 2 out of 3 times and it is pretty unbearable. Hopefully it will be a restful night for everyone. We are glad to have Joel back with us safely. Since the surgery didn't start until after 4:30pm, Joel even made it back in time to see Riley before surgery. Thanks for all of the prayers today and everyday!

Finally!

2009-11-18T16:35:00.000-05:00

Riley JUST got taken back for surgery - 4:30 for his 10:30am surgery.

Day 227 - Out Patient Surgery for port and G tube

2009-11-18T12:25:00.002-05:00

I just wanted to give a quick update, but there isn't much to say. We had to be here at the hospital at 10:30am for surgery and we are still waiting! There was an emergency surgery this morning that backed everything up and we still have at least a 2 hour wait. Since it is going to be awhile, they came in and let Riley drink some apple juice, which is a bad sign that it will be at least that long before his surgery. He is laying here playing happily for now. We asked to go ahead back instead of waiting 2 hours in the waiting room, so we are in one of the small rooms they bring you to before surgery. He kept asking for a bed, but now that he is in one, he is chatting away. I'm happy that he was playing so much that he didn't notice Uncle Brian and I scarf down a hot dog quickly. I will update again when there is more to report.

Day 226

2009-11-17T13:50:00.003-05:00

Today has been a rest day for Riley, me and Brian. Yesterday was our regular clinic day and Riley had to have an IV medication that he gets once a month. We also had to go to pre-op to get everything ready for surgery tomorrow. We don't know what time surgery is yet and won't be able to find out until we call after 4pm today. I hope it is early since Riley won't be able to eat or drink - and he has been eating today, just in time to be told he can't! We still aren't really sure exactly why he stopped eating, but he is slowly wanting to eat a little more and still getting tube feeds to supplement.

Tomorrow, Riley will have his central line removed and replaced by a port in his chest. We will no longer be drawing blood ourselves, we will have to go in and have it done, but that is okay because we only have 1 more day of this (at least in NC), next Monday. Other than surgery tomorrow, we will have another echocardiogram and chest Xray on Friday, spend the weekend getting everything ready to go, and hopefully be ready to hit the road after our Monday clinic appointment. I can hardly wait to get Riley back to our home and see how he reacts. He is doing better and better everyday and I hope being home will help even more.

We had a nice visit last night with our good friends and co-workers, Heidi and BJ. Riley spoke to Heidi as soon as she came in. He continued to talk about "Heidi's bingo party" the rest of the night. He was very excited to have visitors, and it was a good thing they came when they did, because Riley started saying he wanted visitors yesterday morning. He is napping now before physical therapy, which he will not be too happy about when he wakes up.

I will update after surgery tomorrow. Pray for an uneventful and successful day of procedures tomorrow!

Day 224

2009-11-15T13:19:00.004-05:00

First of all, I wanted to let everyone know, I am in the process of beginning to transition from carepages (which has been wonderful), to a blog. I hope you will all continue to follow Riley and his progress, and for at least a little while, I will post the same information in both places. The address to the new blog is teamgreene09.blogspot.com. I believe this will give us a little more freedom in posting photos, videos, etc. If you have any trouble with the new site, please leave me a comment here on carepages, as I will still be checking them.

Joel left for Chattanooga this morning for what I hope will be the last time without us! I have to say, I am getting a little concerned about Riley and I being able to leave a week from tomorrow. Riley has all but stopped eating completely. He says he is not hungry, even when we try and give him his favorites. He has vomited several times this week, the last being just a little while ago after drinking pediasure. Which defeats the purpose of giving it to him as a supplement when he can't or doesn't eat. He is also having anywhere from 4-7 bowel movements a day. We checked his weight at the doctor's office Friday and he is maintaining it for now. The only change in medication over the last week was the switch from IV to liquid for one medication. I don't know whether to hope this is what is causing the vomiting or not at this point. Riley is still pretty happy for the most part, although he has his moments. He also wants to rest a lot these days as well. I am actually looking forward to Riley's appointment at clinic tomorrow to see if we can get some answers. We haven't had any lab work done since Thursday, so I am also anxious to make sure all of his levels are where they should be. We also have a pre-op appointment tomorrow in preparation for the removal of Riley's central line and placement of his port, the replacement of his G tube with a lower profile one and his spinal tap, all scheduled for Wednesday.

Again, let me know if you have any problems with the new website and have a great remainder of the weekend.

Testing, Testing

2009-11-14T21:13:00.004-05:00

I thought it might be time to begin a blog for our family in lieu of continuing to use carepages. Of course this is all in anticipation of our journey back to Chattanooga, away from hospitals and clinics! Bear with me because I don't know what I am doing. This post literally is a test!