Journal History
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Sunday, January 30, 2005 4:30 PM CST
Day + 2years, 7months, 22days....
I can't believe in just a little over four months it will be 3 (THREE) Years post transplant! Is that not amazing to think of?! We are starting to think about our yearly return trip to Minneapolis. We can't wait for them to see all that Riley has accomplished in his speech! Our family in Texas and even here can't beleive how much more they understand him every time they see him. Lots of thanks go out to Greta and Cheryl for working so hard with him....we love you guys and appreciate you more than you will ever know. As far as his PT and OT...well Riley continues to be a challenge...sometimes for him being Riley, but mostly becasue of the Chronic GVHD of the skin that we are dealing with. I know, you are probably asking "if it is of the skin then why the problem with the PT and OT?" Weeelllll, the chronic GVHD of the skin affects the tendons of the ankles, knees, elbows, wrists and fingers....as far as we know. Riley still has the discoloration on his stomack, neck, back and in the bend of his thigh where the diaper is. He does have a little on the corners of his eys. Dr. Selby said that after the chronic GVHD goes away, the discoloration will remain, but will get lighter and shrink in size over time. If you feel of his skin, it is a little tought like but seems to be softening up. You can rub on the areas where he is discolored and feel little knots under the skin....this is just part of the chronic GVHD of the skin and will go away as well. As for how long, we still don't know. Somewhere between a year to five, at least that is what is documented from the doctors.
We have added another med this week on top of the prednesone once a week and the CSA 0.5 once a day every other day. We have added Thalidamid 50mg once a day. Some of you older readers are wondering if I have put in the correct med, well, yes I did. Thalidamid was used in the 60's and 70's for women to take to prevent miscarrages (spelling). Well, they found that it caused birth defects and discontinued the use of it. You may reconized the phrase "Thalidamid Babies". Over the years they have done research and know that it helps children with the chronic GVHD---of the skin only, not of the gut or intestines. And with a certain type of bone marrow cancer. So we are giving it a try but may take two-three months to see the results. It should start softening the skin and releasing the contractors in the tendons. We give this med to him at night since the side effects for Riley are sleeping and some mild constipation. I wear gloves when I handle this since their is such a high risk to women of childbearing age...no we are not having any more, but we are just being cautous. To get this med, Dr. Selby had to do a survey each month and I will as well then the drup company will give Selby an authorization code to put on the script for me to have filled. He said it is one of the most highes security leveled meds that you can get with a prescirption. It isn't that bad other than Riley not know or wanting to swallow a small capsule, but he gets better and better at it each day.
Well, there really isn't much more right now....well just the usual that I like to give you guys, but Sydney is really wanting to play on the computer....she is getting so big! I will update after our visit with Dr. Selby in a week or so. Thank you for checking in and don't forget to sign the guest book. Keep Riley in your prayers along with the other Hurler and MPS families....We love you guys so much and would not have made it this far without you! Have a wonderful week!
xoxoxoox........Jeanne
P.S. I am not the best speller and didn't do spell check on this, please forgive!! Nor did I proof it.
Wednesday, November 10, 2004 4:23 PM CST
Day+ 2 years, 5 months & 2 days
Riley has a cough that we saw Dr. S about last week. He said his sounded clear but went ahead and did a chest x-ray, which to my suprise, Riley did very well. We did amoxicillian for 10 days.
Riley had his "12 week" check up on Monday. Dr. Selby and Dr. Rooms decided to continue with the steroid pills one day a week for the next 8 weeks. Also we have added CSA. He will get 0.5mL once a day every other day. I asked Dr. S. if Riley needed to stay home from school....he responded "For mother's sanity, he can stay in school" ha ha! So, off to the pharmacy we went with our prescriptions. As most of you know, CSA is rather expensive and was $335.00. With lots of prayers and hope, this will be the only bottle we will need. Riley returns in four more weeks for another check up. Oh, the scalp fungus we thought he had, well they have deteremined that is the chronic GVH of the skin. They are not sure the hair will grow back or not, we will see. GVH of the skin affects the skins sweat glands and hair shafts and sometimes there is damage done to them and sometimes not.
Other than that, there really isn't much else to update about. I think I forgot to tell you all that we did have a wonderful visit from Angel Alexis Wiggins family from Elkhart, Kansas. They were passing though Oklahoma on their way back from Georgia and they stayed the night with us. We had a wonderful visit. I know it is hard for them to see Riley, but at the same time, I feel that it eases their hearts a little. They are such a wonderful family. Riley and Sydney were fighting over Marissa's attention the who time. She was wonderful with them. May God Bless The Wiggins Family. We love you and miss you.
Must go for now.....
xoxoxoxoxox.........Jeanne
Tuesday, October 19, 2004 1:56 PM CDT
Day+ 2 years, 4 months, 11 days.....
Hip Hip Horrah! Hip Hip Horrah! Riley is in school today! Okay, actually he went back last week but it seemed to rhime (and don't check my spelling!) We saw Dr. Selby last Monday and he wants Riley to continue with another four weeks of the steroid, but since it took them four times to start his IV on the eighth dose, we have changed it to an oral medicine. Since the liquied tastes nasty we are doing pills. I have four pills to give him once a day, one day a week. I crush them up and mix them in apple juice and draw it up in a syring. He takes it okay as long as he has something else to drink with it. I tasted it and the apple juice does not cover up the tast much, but at least it isn't a two-three hour trip to clinic each week with an IV. Tomorrow will be dose #10 (#2 for oral). Riley will go back after does #12. I don't know how long we will do this. Riley's tendons and joints are really loosening in his hamstrings, hips and knees. His ankles and feet along with hands, wrists, and elbows are still tight, but seem to be loosening. Riley sure does seem to feel better. He is in a better mood. When I asked Selby if we could go back to school, he asked how Riley was doing with Home bound. I told him he did fine the first few weeks, but the last couple he has just been mean to them....as they are invading HIS space, their place is at school not his home. Selby said he could go back with the conditions that if two or more have colds, anyone is sick in his room, Riley has a cold...then he needs to stay home. And of course, if Riley gets a fever over 100, bring him in. We can do that. Riley went back on Tuesday and he really missed. He actually didn't want me to go in to class with him. Yesterday, Sydney went in to his class with me and he was pushing her out the door....this is MY class attitude. He is so cute. I can't wait til tomorrow, they have school pictures.
OH....wait! I almost forgot. The most exciting thing that has happened. Most of you know that we are Oklahoma State University fans. Riley and Rick got to go to Special Spectators game a couple of weeks ago. It was Iowa State at OSU....of course OSU won. They had so much fun meeting the coaches, players, the mascot horse Bullet and Pistol Pete. Rick took some good pictures but something is wrong with the disc and I need to have them redone. I will try scanning in the picture and putting on the website.
Other than that, everything is the same. I will update more in a couple weeks after our next appointment. Thanks for checking in.
xoxoxox........Jeanne
Sunday, September 26, 2004 6:36 PM CDT
+2 Years, 3 Months 18 days (I think?!)
Riley has received six doses of methalpredinsolone (IV steroid) and is at the end of the fifth week. We saw Dr. Selby on his fifth does and the end of four weeks. He thought that Riley was doing well with the treatement and his GVH was is showing improvement. His back is still discolored and Dr. Selby said it will always be discolored where it was, but over time, it will be a little lighter and the area may even shink in size. To me the front side of him is still darker, but we will see in time. I have noticed that Riley's body now swets on his back, I had not noticed that before. Dr. Selby said he would check him at the end of the eight weeks and he thought that there was the possibility that he would be able to return to school, but also the possibility that he may need another four weeks of the IV steroid. We will just wait and see. He is more active and stays busy and talks more and more each day. You should hear him and Sydney talk, it is really cute. He likes to come up to me and say "Momma, I wanna talk", and we just talk and he tells me about the movie or book...how precious is that?! His leg joints are loosening up more and more. His little feet and ankles are still so tight, but will probably be the last area to really loosen since they are the tightest. He is getting around so much better in is in a better mood all the time. Not that he wasn't before, but you can tell that he must not have felt well before the treatments and was just going and going as he doesn't know any different. We still have the many therapy sessions and the school is sending out his therapies and teacher serveral times a week. This is going well, with the exception that Sydney will not leave them alone. She tells me that she wants to learn too. Poor little thing, I feel bad for her but she does okay. We are slowly increasing the time on him wearing his #9 braces. He can actually straighten out his knees when we stretch his legs out in the floor. One step at a time...One day at a time.
We are still tackeling the potty training. He is getting better at telling you that he needs to go. He actually got up one morning and went potty by himself (placing the seat on the toilet, pulling down his pull up and sitting down on the potty by himself). We are so proud of him.
Sydney is in dance and really loves it. It is nice to be able to have something that is just her's and not time spent at clinic or therapy. She is growing so fast...four years old!
Rick and I are just hanging in there. Day by day, hour by hour and sometimes minute by minute. We are greatful for all of our family and friends that continue to pray for Riley and us, we could not be going on each day with out you.
I will update more after we meet with Dr. Selby. Thanks for checking in and don't forget to sign the guest book!
xoxoxoxo.........Jeanne
Thursday, August 26, 2004 3:55 PM CDT
Day + 2 years, 2 months, 18 days
Riley received his second dose of methylprednisone yesterday at OU BMT clinic. He did very well. They only stuck him once to get his IV in his right ankle. It took thirty minutes to run and then the saline and we were gone. We will go back next Wednesday.
Riley received his first dose last week. What a day. We put the numbing cream on the back of his hands and then on the bends of his arms. The nurse that we had when we first came home two years ago, is the same nurse that was going to start the PIC line...peripheral intervenious catheter(I think?) She remember us and was very good with Riley. The nurses in the clinic said they would try one time on his hand and then let Lori start the PIC line and run the med from there. Well, they were unble to start it in his hand. They were able to get into the vein but for some reason not able to stay in the vein. So off to admitting we went. We had to do a 23 hour observation admit so that Lori could do the PIC line since she is in the hospital and not the clinic...you know, paper work paper work! Lori tried to start it twice in both arms and it didn't work. She then said she would just start it in the other hand, well that didn't work either. She said that it wouldn't be a problem to start an IV each week and she would be happy to do it if the girls in the clinic couldn't get it started. So she did get the IV in his left ankle with no problem and we got his med started. It only took thirty minutes to run. Memie, Riley and I got there at 8:30 and didn't get home until 1:30. But if this does it for his Chronic GVH, then we will do it.
Dr. Selby's physicians assistant - Andrea, said that we were not going to start the CSA until after Riley had four treatments of the methylprednisone. So I guess we will wait on that and the oral steroid.
Riley is doing fine. He does take a nap when we get home, I guess from all the fighting and crying he does until the IV is started. He likes to go to the clinic as he can play and be out of the house. Bless his little heart, all he wants to do is go to the grocery store and ride in the "red car" that has the shopping cart attached to it. Every time we pass the store that is what he says. He really doesn't even fuss when Sydney goes to school or when we pick her up. We will do his IEP next week to officially place him on homebound, his teachers and therapist really miss him.
Sydney is doing fine. She made it through the first week and a half of pre-K just fine. She has not once cried. She got to be the leader today. This meant that she was able to bring the snack for the day, dress the weather bear and do other things to help the teach. She is so sweet when I pick her up every day. She comes running out and giving me a big hug and rattling off what she did that day. She is growing up too fast for us.
Rick is doing fine. He is working for a TV station doing master control operator, full time. He will also start working part time at the Broadcasting School in a couple weeks. He and Riley are starting to spend more time together, which is good for me since Riley seems to be glued to me. At least now he will actually ask for his daddy...it is so sweet.
Me, I am just hanging in. We will see what the next couple of months bring to our lives. I am still active in our church and Rick is too. We will take turns on staying at home with Riley on Sundays since he can't go to church.
Well....that is all for now. Sorry if this seems to be short, but I really need to go. More later......
xoxoxoxo......Jeanne
Friday, July 30, 2004 8:04 PM CDT
I hope this update finds each of you well and in good spirits.
We have had two birthdays...Riley turned 5 on June 28th and Sydney turned 4 on July 23th. Each had a wonderful party filled with family, fun, gifts and love. Birthdays seem to be special and memorable to everyone, but when you have been given a such a wonderful gift like Riley in your life...you treasure everyday like a birthday.
I had talked to Dr. P last week and he wanted us to see our BMT doctor here for some liver tests and check Riley's WC and such especially since he had a hospital stay in May. Dr. P had talked to Dr. Selby and they discussed Riley's discoloration on his back and stomach and the test that they were going to do. We went in to see Dr. S on Monday, we did blood work and a mini exam...Riley doesn't seem to found of doctors and nurses poking on him (I wonder why?!) Dr. S asked about the hopsital stay and if Riley has had any white spots or mouth sores..no; diarehia (sp)..no. Dr. S did notice the severe toe walking and the lack of extending his arms at the elbow and extending his fingers(besides the Hurler effect). Dr. S said that all of this is signs of Graft vs. Host Disease (GVHD or GVH). He said since it is after the transplant it would be Chronic GVH. He asked about his GVH during transplant and I told him he didn't have it. He then classified it in a different catagory that I don't remember as I was still in shock of the diagnosis. Those of us that have been through transplants and saw so many children affected by GVH know the fear that I was feeling. Dr. S said that we should continue with the PT and OT that he is getting and wearing his leg braces as much as possible. I told him we were getting a Stand Straight Chair for home to help him start standing "Straight" and his #9 leg braces (similar to the ones he has now but have a hinge in the ankle to adjust the tension to help Riley walk flat footed again. Chronic GVH affectst he joints...i.e. knees, elbows, ankles, fingers. We also know that if the Chronic GVH is not monitered it could get out of control...going to the liver and intestines. Dr. S didn't see any need to provide any steroid at this time but he did want to discuss the course of treatment with Dr. P over the next week or so. Dr. S will see us in two months for more labs and check up and he will call after he talks to Dr. P.
I spoke to Riley's therapist at Mercy, they are so wonderful and love Riley so much. Riley's PT knows Dr. S and said he would talk to him and make sure our PT plan is where we need to be for PT and OT. I will also need to relay this plan to the school therapist.
I am not sure how we feel about this diagnosis. It scares us as we don't know how long this will hang around and how far it will go...again, the unknown of disease. If anyone has experienced this, please e-mail me or call me. We know in our hearts that God is with Riley and will carry him and us when we need it. We have so many that are praying for Riley and we ask that you do the same. Riley's spirits are still the same...a very happy little boy that doesn't know a different life than what he has. This is what keeps us going and we know that he will overcome this hurdle as he has overcome the others that have been placed before him. I will update when I get some information from Dr. S.
May God Be With You...
The Joiners...Rick, Jeanne, Riley and Sydney
Friday, June 11, 2004 11:47 AM CDT
Day + 2 Years, 3 Days
I know many of you were awaiting this update. As usuall...sorry for the delay, but this has been a rough month since our visit to Minneapolis. We want to thank all of you for your prayers and thoughts.
We had a very nice trip to MN. All went well. I am going to have to make this update short and sweet, so "bear" with me.
Heart: The "trickle" leak is now at a "mild", but no other concerns.
Eyes: All is the same, still a little far sighted and no need for glasses.
Hearing: Still the same, maybe a little loss, but all is still well.
Hand: Basically still the same, but we now have hand splints to keep the fingers straight before they start curving too much. Splints are to be worn every night alternating each hand.
Ortho: No need for surgery for knees, hips or spine. His knees are at 9d, spine is in the 30's and they want the him to grow as much as possible before the hip surgery. He is now 99cm (3' 3"). Oh, and to get him to wear his leg braces so he will stop walking on his tip toes...tight ankle muscles.
Lungs: This differs between the BMT dr and the lung dr. BMT thinks it really is just alergies, but the lung dr wants us to do the inhalers longer during the alergy seasons. Okay!
Neurology: He thinks he is doing fine and will soon catch up in his development.
Neuropsyc: Well you know how this goes. Riley is now about a 3 1/2 year old or a little more. The dr was impressed with all the services he was receiving...which is a compliment coming from this dr. She wants us to continue doing all the therapy that we can. Riley will repeat the Developmentally Delayed Pre-K again next year.
BMT: He is very pleased with Riley. He has now said that this is the part of the transplant stage that we should begin to have a "normal" life. This is really hard to take in, but we will start working on it.
Enzyme: Still 100% engrafted and Enzyme of 72.9!!!
We will follow-up next year!
Riley spent a few days in the hospital last week for pneumonia. Then he got fever blisters and mouth sores that caused a couple extra days of stay. But all in all he is doing fine. A little weak, but happy to work to get caught back up and on the go again.
Sydney and Rick are doing fine.
My grandmother passed away this last Saturday. She would have been 84 next week. I was at her side and holding her hand when she passed. She had a lung mass that was not detected until the first of May. She was a wonderful person and will be missed by so many. She is now with our Lord and with my grandfather, aunt and father. Nanny, I will miss you so much but will remember you each day. You will always be in my heart.
Thank you for checking in on us and please sign the guest book. Sorry I havn't checked in on some of the other families, but I have lost my list of web sites. If anyone cares to, please e-mail them to me.
xoxoxo..........Jeanne
Wednesday, April 14, 2004 11:27 PM CDT
Day + 1 Year, 10 Months, 6 Days...
I know it has been several months since I have updated and please forgive me for not doing this sooner. All is going well with Riley. He and Sydney find ways to amaze us more and more each day.
The holidays were great. Riley and Sydney enjoyed Christmas so much and being with family. Riley is doing great in school and now enjoys going...as long as I don't take him, as he tends to get unhappy when I take him. Sydney can't wait to go to pre-school next year. We have decided that Riley will repeat the special needs pre-school program again. He is not ready for the regular pre-school. We intend for him to spend time in the regular pre-school class a little each week and see how he does, with gradual increase of the time he visits it. He is now interacting more with his classmates and plays with them. He has been to several birthday parties for his friends in school. He also enjoys going to McDonald's and playing, Sydney of course loves those visits. In January, Riley had dental surgery at the OU Children's Hospital here in Oklahoma City. He did just fine. He had the eight front teeth removed, and each molar on the bottom behind the eye teeth. The other ten we then capped. Riley and I stayed a night in the hospital because he became dehydrated and therefore, developed a fever. Memie and Daddy were not too happy with this, but I figured it was going to be an overnighter. We survived it and Riley got up the next morning and ate pancakes and drank milk. He wanted a cheeto so bad that I tried explaining to him only sof things, but he wanted it anyway. I gave it to him figuring that he will just figure out what he can and can't eat each day. Needless to say, it didn't stay in his mouth too long. Riley's PT at school felt that Riley would benefit from two PT sessions a week at school instead of just one. She saw that he did some regression during the holiday break. So he is now getting his four one hour speech, one one hour OT and one hour PT at Mercy Hospital, each week. At school he gets two thirty minute sessions each of speech and PT and one thirty minute session of OT. He is saying more words to create three and four word sentences more consistantly. We are working hard on "I Want...." type phrases. His PT at Mercy had him fitted for braces for his feet and legs. His tendons and hamstrings are tight so he walks on his tip toes and the sides of his feet. He does not walk flat footed at all. With theses braces, this will help looses the muscels so that he can walk flat footed. The tightness also seems to be affecting his ability to squat. At Easter, he had three different egg hunts and at each one, he didn't want to squat. We will just keep working on it.
As for Miss Sydney...well, she is just growing up. She is doing more things each day and is ready to go to pre-school...and teach the class for the teacher. She is growing tall. She is just beautiful. She works with us with Riley and is working on learning how to pick up after herself. She enjoys her Friday Friends program and being with other kids. I make it a point to try and do something with just her, so she doesn't think we are always doing things with/for Riley and leaving her out. Rick can't wait for her to play T-Ball next year, but I think that he should try and see if someone would take her this year. I think she wants to take dance next year, but we will just need to see where things are.
As for me and Rick. Well, Rick finished his Radio Broadcasing School one month ago. He is currently looking for a position in the radio field, or any field if something doesn't come up soon. Me, well, you know the construction business, up again down again...I was layed off a few weeks ago. I was the only income we had and now we don't have any. I am concerned about the insurance as they told me I was covered for the next couple of months. So I moved our return trip to Minnesota up to May from June. I am searching for something, but I keep getting this feeling that I need to be home with Riley and Sydney. I keep praying about how this would work since it would be easier for me to find a job or go to an agency. I keep trying to figure out what I am going to do as I have thought of going to school. It is just hard as Riley still requires so much outside therapy and really needs one of home for that or to have a job that is flexible for it. I pray that something happens soon and that leads me to the following. First, I want to thank our church (Del City Christian Church) for having the garage sale so fast for us. They raised over $900.00 for our trip back to Minneapolis for Riley's two year follow-up. Second, our Pastor has put together a Poker Run for us. "The Ride For Riley - 2004"! Yes, this means that we will do it each year and as we get to where we don't need the funds but keep raising money and it grows, we will donate it somewhere. Our church has been wonderful to us and we pray that this will be a success. The information is below of for the stops and the date. I will be happy to take calls on this or e-mails as well as Pastor James. Please pray that we have a successful turn out.
THE RIDE FOR RILEY - 2004
Saturday, April 24, 2004 (Severe Weather Date May 1st, 2004)
Time: Registration begins at 8:30 am: First Bike or Car out at 9:00, Last one out at 10:00. Return by 5:00 pm. Prize distribution begins at 5:10 pm.
Stops: Del City Christian Church - Del City
A & A Cycles - OKC
Phil's Cycle & ATV's - El Reno
PaPa's Customs - Bethany
LaDonna's Grill - Meeker
Pastor James can be reach by e-mail at delcitypastor@myownplanet.com or 405-677-2706
I want to thank all of those that are working on this for us. We can't tell you how much it means to us. You each know who you are and that you are dear to us and we are blessed to have you in our lives. The monies raised from this Poker Run will also help us with the traveling expenses to Minnesota and to help pay for the medical bills we still owe and will continue to have for Riley's care.
We will return to Minneapolis on May 1st. Riley, Sydney, Memie and I will leave that Saturday and stay the night in Des Moines and drive in to Minneapolis on Sudnay. We are planning on staying at the Ronald McDonald House. Riley has about 15-17 appointments for the week. We may need to stay over for the following week as we had to rush to get this done before our insurance runs out at the end of May.
Please keep us in your prayers, as you have read, we really need them. Thank you for taking time to stop by Riley's webpage and checking up on him. I will do better at updating. I will update after the Poker Run or after we get back from Minneapolis.
May God Be With You.
xoxoxoox.......Jeanne
p.s. I did not proof this so I hope it makes since!
Friday, October 3, 2003 9:30 AM CDT
Day ~ 16 Months
I just wanted to do a short note today, which by the time I finish may be a long note.
This morning Sydney had come and got in bed with me and Rick around 5:00 a.m., which she usually does so it was not big deal. Well Riley comes in there about an hour later and says his usual...."Momma, Hold You?" I told him "Oh, Yeah!, get up here and don't climb on Syssey". He said "Oh Teah!" Well, I guess Sydney woke up as Riley was climbing up and I told her not to fuss with her brother this early as she will tell him to get off of her or something like that. The first thing she said this morning was to Riley. "Bubba, you're my hero!" Just so sweet and loving to him. Is that not awsome or what?! It made me cry, not to mention I just layed there in bed with them and held them and listened to them talk back and forth. She told him many times that he was her hero. Well, when Rick got up I hadn't had a chance to tell him. Rick was in there getting their breakfast and setting them at the table. Sydney just piped up "Bubba, you're my hero!" Rick told Sydney that Riley was everybody's hero and that was nice of her to say to him. What a little sweetie she can be. I am glad that she is younger than Riley and will be able to go through everything with Riley and us as opposed to being several years older than him and not enjoying Riley nearly as much. We truely treasure each day. I have been having a hard time the last serveral weeks with many things that go on in your life and when Sydney said those words this morning to Riley, it made me re-think some of the things that have been bothering me. I now am going to have a better outlook on certain things and I can only pray that I start feeling better.
I am sure that you guys are wondering how Riley is doing in school. Well, we have had server meetings for Riley's IEP to get them to give him more services. The Special Services director's assistant, Ms. B, has even talked to Dr. Shapiro. Evendently it didn't go very well as they are still telling us that according to the school's test, Riley is gaining in all areas and feel that he doesn't need any more services. We(Rick) are still taking him every morning to therapy and he goes to pre-school in the afternoon. The school and us agreed that we would accept the two speech, one OT and one PT for now. Riley is to be tested again (neuropsyc) in December and that if the results still indicate that he needs more services, then they would provide them in January. They would also increase the services if our new insurance doens't cover the many needed outside therapy services...four speech, one OT and one PT each week. Riley really does enjoy school. We did discuss where he would be next year if he would repeat the regular pre-school program next year or go on the kindergarten. The teachers told us that out of the four years that Riley's teacher(special needs pre-school teacher)has been there, that only two of the children re-peated the normal pre-school program the following year, this was the based upon the teacher's recommendation and what the parents chose to do. This made us feel better knowing that Riley and Sydney won't both be in pre-school next year, we hope, but not a big deal if they end up in the same grade. Rember that boys are usually about six months behind girls their same age. We still have our faith in the school that they will provide what Riley needs. We had only hoped that they would have done a couple more speech therapy sessions so we could cut down on his outside sessions so his days wouldn't be so long. Riley is learning his colors, numbers and letters. I went and observed part of his day a few weeks ago. He really does well with circle time. This is where the kids sit in chairs for about thrity minutes and go over the day, month, date, year, the weather, numbers, colors, letters and do various songs. He sits there and behaves and participates. He is getting better with his social skills, although he didn't show them that day. We are very proud of Riley and how far he has come...I think Dr. Shapiro, Dr. P, Katie and Kate would be very proud of him as well. We are happy with the attention he receives at school and the way all of his therapist work with him.
As for our Miss Sydney.....she is quite the little girl. She is growing and changing all the time. She just amazes more and more each day of how much she really loves Riley and doesn't see him to be any different than her....after all, He is her Hero!
I will close now and I am sorry , but I did not proof this so I hope all made since. Give hugs and kisses to all of your loved ones and hold them tight, you never know what tomorrow will bring. May God Be With You!
xoxoxox.......Jeanne
P.S. I will update the pictures in the next week or so, so check back!
Friday, October 3, 2003 9:30 AM CDT
Day + ~ 16 Months
I just wanted to do a short note today, which by the time I finish may be a long note.
This morning Sydney had come and got in bed with me and Rick around 5:00 a.m., which she usually does so it was not big deal. Well Riley comes in there about an hour later and says his usual...."Momma, Hold You?" I told him "Oh, Yeah!, get up here and don't climb on Syssey". He said "Oh Teah!" Well, I guess Sydney woke up as Riley was climbing up and I told her not to fuss with her brother this early as she will tell him to get off of her or something like that. The first thing she said this morning was to Riley. "Bubba, you're my hero!" Just so sweet and loving to him. Is that not awsome or what?! It made me cry, not to mention I just layed there in bed with them and held them and listened to them talk back and forth. She told him many times that he was her hero. Well, when Rick got up I hadn't had a chance to tell him. Rick was in there getting their breakfast and setting them at the table. Sydney just piped up "Bubba, you're my hero!" Rick told Sydney that Riley was everybody's hero and that was nice of her to say to him. What a little sweetie she can be. I am glad that she is younger than Riley and will be able to go through everything with Riley and us as opposed to being several years older than him and not enjoying Riley nearly as much. We truely treasure each day. I have been having a hard time the last serveral weeks with many things that go on in your life and when Sydney said those words this morning to Riley, it made me re-think some of the things that have been bothering me. I now am going to have a better outlook on certain things and I can only pray that I start feeling better.
I am sure that you guys are wondering how Riley is doing in school. Well, we have had server meetings for Riley's IEP to get them to give him more services. The Special Services director's assistant, Ms. B, has even talked to Dr. Shapiro. Evendently it didn't go very well as they are still telling us that according to the school's test, Riley is gaining in all areas and feel that he doesn't need any more services. We(Rick) are still taking him every morning to therapy and he goes to pre-school in the afternoon. The school and us agreed that we would accept the two speech, one OT and one PT for now. Riley is to be tested again (neuropsyc) in December and that if the results still indicate that he needs more services, then they would provide them in January. They would also increase the services if our new insurance doens't cover the many needed outside therapy services...four speech, one OT and one PT each week. Riley really does enjoy school. We did discuss where he would be next year if he would repeat the regular pre-school program next year or go on the kindergarten. The teachers told us that out of the four years that Riley's teacher(special needs pre-school teacher)has been there, that only two of the children re-peated the normal pre-school program the following year, this was the based upon the teacher's recommendation and what the parents chose to do. This made us feel better knowing that Riley and Sydney won't both be in pre-school next year, we hope, but not a big deal if they end up in the same grade. Rember that boys are usually about six months behind girls their same age. We still have our faith in the school that they will provide what Riley needs. We had only hoped that they would have done a couple more speech therapy sessions so we could cut down on his outside sessions so his days wouldn't be so long. Riley is learning his colors, numbers and letters. I went and observed part of his day a few weeks ago. He really does well with circle time. This is where the kids sit in chairs for about thrity minutes and go over the day, month, date, year, the weather, numbers, colors, letters and do various songs. He sits there and behaves and participates. He is getting better with his social skills, although he didn't show them that day. We are very proud of Riley and how far he has come...I think Dr. Shapiro, Dr. P, Katie and Kate would be very proud of him as well. We are happy with the attention he receives at school and the way all of his therapist work with him.
As for our Miss Sydney.....she is quite the little girl. She is growing and changing all the time. She just amazes more and more each day of how much she really loves Riley and doesn't see him to be any different than her....after all, He is her Hero!
I will close now and I am sorry , but I did not proof this so I hope all made since. Give hugs and kisses to all of your loved ones and hold them tight, you never know what tomorrow will bring. May God Be With You!
xoxoxox.......Jeanne
Thursday, August 21, 2003 5:03 PM CDT
Day + 1 year, 2 months ~ 2 weeks
I just wanted to do a short update on how Riley has done at school the past week. He started last Wednesday. Rheta, Riley and I met Rick at the school and we all walked in together. Riley went in and Ms. Beverly showed Riley where to put his back pack she asked if he could do it and he said "need help". Ms. Beverly helped Riley and got it hung up. Riley then went and set with Ms. Betty and another child to eat Froot Loops. We said by and he looked at us and said "Noooo!" He stated coming toward us but turned and went for some toys that he saw....he didn't even miss us when we left. Each day, Rheta says he just goes in tells her by and does his thing. Ms. Beverly said today that he is doing really well and his attention span is growing. I actuall took him today and Ms. Beverly wrote in his notebook that he did not enjoy today. Riley was crying when I left so Ms. Betty took him to meet the bus with the other children. It probably is a good thing that I don't take him everyday, he would be upset all the time. Rheta and Rex are out of town for a few days so I took him and Rick will pick him up. I meet with the school next week to see how his IEP will go. I have already go it set in my mind that I will not sign anything until they agree to provide most or all of his required therapies. Right now our insurance is covering his out patient therapies, but we are about to change insurance and I don't know how they will pay, I hope the same.
I forgot to tell you guys that last month I spent the day with Riley, Sydney, Susan and Hannah....I had some new paper reporters coming out to do a follow-up story on Riley for his party. Anyway, we all went to McDonald's and met Susan's friend Cindy and two of her boys. Riley had never been there before, except for the drive through. Sydney has been there to eat and play, so this was Riley's first time. He actually climbed up the spiral landings and got scared and came down. Then Sydney got him to go all the way up and he did. Well he decided he would go down the slide. Sydney on the other hand has never gone down the slide, but once Riley did she just had to. This was so amazing to watch them pull either other out of there "safe zone" to do something more. They did this about fifteen times. Riley and Sydney are truely amazing and wonderful, even if they are my babies!
I have fogotten to post this, but we want to congratulate Rick's bother and wife, Randy and Traci as they are expecting their first baby together. Traci has a daughter, Kylie, that is nine and shares the same birthday as Sydney. The baby will arrive around March 8, 2004. They are so excited and we are so happy for them.
Rick and I went to my aunt and uncle's home in Texas this past weekend....the first time since we had Riley that we have ever left them, besides them just staying the night with Memie or Memaw. We were gone from Thursday night to Sunday afternoon. We really had a nice time, but Riley and Sydney missed us, Sydney more so than Riley. Riley usually just goes with the flow, but Sydney doesn't like for me to be gone....I think she may think I am going away for a while like I did last summer in MN for Riley. Any way, all is fine and we really needed the adult time too. Thank you Barbara and Paul for spending time with us and Happy Birthday Paul! We really do enjoy being with you guys and will see you soon!
Well I must go for now. Take care!
xoxoxoxoxox........Jeanne
Tuesday, August 5, 2003 9:02 AM CDT
1 year ~ 2 Months
Well....what a wonderful two months we have had. Riley had his forth birthday party on June 28....celebrated with family and a couple of friends. He, Sydney and Hannah (Susan our sitter's little girl) had so much fun playing in the water in the front yard. Thanks to Uncle Randy, Aunt Traci and cousin Kylie for the turbo water guns. Riley has now gotten it mastered when the gun is full of about a half gallon of water. Riley got many gifts and cards that he is enjoying each day. He really enjoyed blowing out the candles on his cake. He didn't get to do this last year since we can not light candles in the hospital....now how unfair is that, you would think there was flameable oxygen around or something, LOL. I think I lit the candles two or three times as he would blow them out before they all got lit. It was truley an awsome day to celebrate. We are looking forward to each one we get to celebrate.
Sydney's Birthday......I couldn't go without mentioning the little princess! We celebrated her third birthday on July 23 with family and friends. She had a wonderful time. Riley wasn't quite sure why he couldn't open her gifts, but he did get a couple of things to open. I had so much fun, since I missed her second birthday last year. Each day, she is becomes more of a delightful, caring, loving and independent little girl. She is growing up on us really fast. It sometimes makes me sad to think of what I did miss with her last summer while Riley and I were in Minneapolis, but I am sure in her heart, she understands.
We had a celebration at our church on Sunday, July 27 for Riley's One Year Anniversary. Our church had been waiting to do this since we came home last September and have patiently waited for Riley to be ready for it....off meds. We had a wonderful time. I played the video from both transplants so everyone could see him. I also had photos out and we had lots of food, snacks, punch and cake and cupcakes. We later released balloons to celebrate Riley and in honor and memory of all the other Hurlers that were before Riley and that are still coming. God's little Angels!
This week is the first week that Riley will go to out patient therapies. He has been released from being homebound and can now go to school and out and about. He is doing really well about going places. Usually about an hour is his max, but I am sure that will increase. He now knows that he can go and when Sydney leaves to go on an errand, he gets upset. He didn't do this before. So they get to take turns, and now Sydney gets upset, but that is part of it. There is no way Rick or I will take both of them with us to the store if it is just one of us going. Are you crazy??? A three and four year old! Rick said Riley did really well with being in a hospital for therapies. Rick said it is really nice, Mercy Hospital. You have valet parking and go in the door and the therapy center is right inside. We were able to keep the same speech therapist, Greta, since she is originally out patient...same time but different place. We did get new OT, Dianna and PT, Bob. He will meet Bob tomorrow. And unfortunately, Greta was ill this week and felt bad for missing Riley's first week in the real world, but she did get a replacement, Julie. Riley goes Monday thru Thrusday from 8-9 am for Speech then on Monday 9-10 he has OT and Wednesday 9-10 PT. Rick has done a wonderful job at taken care of Riley's therapy schedule. I set up all the insurance and billing and doctor orders information and Rick gets to take him and maintain his schedule. Riley will start Pre-Schoool next week. Not sure that he understands that or not, but I will take him next Monday to see his room and he will still have the same pre-school teacher he had during home bound services. Monday thru Thursday 12:50 - 3:00. Rick's mom will be taking him and picking him up. Then on Friday, Riley and Sydney will be going to Susan's church for Friday School 9:30-2:30.
We are so greatful that God has placed us in the position we are in so all that this could happen. Rick is currently going to school and is able to take Riley to his therapies. Rheta is no longer working and is able to take and pick Riley up. Susan is still our amazing and wonderful sitter that we would not trade for anything. Our children are growing and learning new things every day. What else could we ask for, other than that all continues to go well.
Thank you for checking in on our family. May God Be With You.
xoxoxoox.......Jeanne
Wednesday, June 18, 2003 1:32 PM CDT
Year 1 Day 10
Well, we had a very nice visit to Minneapolis. The weather was nice, mainly in 70-75 and overcast every day but Friday. Friday, the sun came out and got up to 90...I stepped outside the hotel and it felt like it did last summer up there. We had a nice visit with some our care partner, Rhonda and one of the aides, Andrea. We ran into Presley and her mom Staci in therapy while we stopped by to see Andrea, speech and Rebecca, OT. They were very happy to see Riley. We talked to Luke's mom, Sheila. Luke was admitted on Monday after his port was removed. The anesthesiologist didn't understand Hurlers and used too big of a tube to intibate Luke. So all you Hurler parents out here, remind them to use a small tube for their air ways. We say Taylor and her parents and sister. Taylor looks so good. There we some of the nurses and aides that I didn't get to see. Also, I forgot Aaron's mom's number and couldn't get to the computer to get it....sorry guys.
Well, I just copied Riley's schedule from the last posting and will update from there, so "bear" with me on this.
Monday June 9, 2003
8:45 - EMG (this is a nerve test for carpal tunnel) This went okay and we got the results from Dr. Van Heest. It took about 30 minutes.
9:30 - Dr. Shapiro, Neurosychology We ran into Taylor and her family as well as a new Hurler family. Max is eleven months old from Chicago. They were there to have an evaluation for a few days and then to Duke for a quick evaluation. They would then make their decision. I talked to the dad for a few minutes about Riley and remembered being at that point of diagnosis. OH, how I prayed for them that night. Even for Riley having two transplants, Rick and I would not have taken any place else. As you all know, this is not the most favorite for any of us. Riley and I are in a small room with Kate and she gives him things to see what he can do as far as identifiying five or six items she give him, showing her which items are the same, big, little, drawing some and so forth. It is just not a fun test but must be done so they will be able to tell us what the school system should be doing for him. This was about two-three hours. We had time to get a snack and be shuttled over to the next appointment at Riverside.
2:30 - Dr. Van Heest, Orthopedics From the first test this morning on the Carpal Tunnel, Dr. Van Heest felt that Riley had some moderate nerve damage, but nothing that she felt required surgery any time soon, possibly in a few years. We will follow up with her next year. Also she was able to straighten out all of Riley's fingers on both hands except for the ring fingers, which she was pleased with.
The end of one day. Sydney and Memie stayed at the hotel all day. Sydney was really needing mommie time, which was hard as Riley felt he should still have me all to himself.
Tuesday June 10, 2003
9:00 - Echo/EKG, Echo Lab Riley did really well for this. He sat there and watched a movie while doing the Echo. The tech asked him if he wanted to look at the screen and he did. He replyed "Baby!" I have not idea where he got this as he has never seen an ultrasound before! The EKG went well also, until we had to take the patches off of him, thank goodness he has lost most of the body hair.
9:30 - Dr. Shapiro, Neurosychology Back to our most favorite thing. We still had a little to finish from Monday. We then met with Dr. Ziggler, which I wasn't to happy with. It wasn't because of the results, just that I didn't care for him. Basically, Riley hasn't gained any, just in speech. Well to look at him, you can tell. We discussed behavioral issues and how to handle them. Basically he said to go to counseling for this. I discussed this with Dr. Peters on Friday and will read about it later.
We had a little break and got a snack and back to the clinic.
1:00 - Katie Johnson and Labs They were only able to draw seven of the nine tubes before Riley decided to clott off. We will finish on Wednesday in the hospital. Katie was so happy to see Riley. Really impressed with his speech and his three year old boy attitude! We discussed the meds which she thought that DR. P would stop the CSA and magnesium, possibly the bactrim and gatafloxacin. His labs were fine since we started every other day. Bilirubin was up to 2.1, on there scale, but she wasn't concerned with it. We talked for a while about various things, but all in all, she was happy. I voiced my concerns for the Neurosych, but she said to wait and talked to Dr. P. Well off to the next appointment.
2:30 - Dr. Chrisiansen, Ophthalmology This was one of the longest. We waited in the waiting area for about thirty minutes, then did a little bit of a test, waited for another test, did it and had his eyes dialated, then sat in the doctors exam room for almost an hour. The doctor came in said that he would examine his eyes and answere questions. He said that the retina is fine, nerves were fine, cloudiness was 1 ( 4 is baaaaddd, 1 very mild if any) and he had some farsightedness. The farsightedness he said, every child under five has this. Riley's eyes do not cross nor wounder. Riley got a great report and doesn't have any need for glasses and will see us next year. This appointment was worth the wait after this morning.
We returned to the hotel and called Andrea and Rhonda. We took a nap and the girls showed up later. Andrea missed Riley in January so he was quite a suprise to her. They both could not belive this was the same little boy they had watched go through so much last summer. Rhonda had to leave early so Andrea, the kids and I went to pick up dinner. We had a nice visit and will see them on Friday before we leave. I really had a hard time coming back to Minneapolis. I had all of these feelings coming back, it was some what overwhelming. I saw so much that reminded me of where we were this time last year. Let me tell you, I am glad we have made it through the first year.
Wednesday June 11, 2003
****No food or milk after 5:30 am, mya have clear liquids until 9:30am****
9:30 - Chest X-Ray This wasn't too bad as both these x-rays were done at the same time. Riley still doesn't like them, but is fine after he gets a sticker.
10:00 - Bone Age
We had a little break and went search for aides, nurses and threapist to visit. There was two or three on the unit that we knew. Stayed there for about fifteen minutes and then headed over to the therapy area. We got to see Rebecca and Andrea as well as Presley and Staci. It was a nice visit and Riley played a little. We miss Jane who worked with him on PT who left after we did last year to work in the early development program in her community. She would have been so happy to see how well he was climbing on the slide!
11:30 - Arrival for MRI Sedation Preps Well, Memie and Sydney met us at the hospital for this. They stayed with us until we had to start the IV, I didn't want Sydney to see that. We had to stick Riley twice to get it in, but he did so-so. It took a little while to get him asleep and in a deep enough sleep to be able to move him and keep him in that position. Finally around 12:10 I left the MRI room for them to do their thing.
1:00 - MRI Memie, Sydney and I went to the cafeteria to eat real fast and returned a little before 1:00 and he still had about ten minutes left. The nurse said he was doing fine. Once he was done, I picked him up off the table and we were wheeled upstairs to recover. We stayed there until about 3:30. Memie and Sydney stayed until he woke up and they left. RIley and I made it back to hotel after he drank two juice boxes and had the rest of the blood drawn. We saw our favorite resident, Chris. He was happy to see that Riley was doing well. He went through second transplant with us and was able to tolerate all the crap I had for the docs and nurses. Both transplans were fairly easy and I was pretty good, but as a parent, there would still be some issues that I didn't think was right. Chris said they have a little boy now who is two weeks old, named Malcolm. Their daughter, Tatum, is about two, I think. It was a comfort to see him and Riley liked seeing him too. Again, the emotions came back as he was the one who woke me up from a nap two days before Riley's third birthday in the hospital to tell me that Riley was 100ngrafted after his second transplant. So needless to say, I will never forget Chris!
Thursday June 12, 2003
8:00 - Dr. Ogilvie, Orthopedic Well, I dreamed last night that Dr. P told me not to worry that Riley would be okay in regards to me worring about the developmental test. I just wanted to mention that so you would see what happend on Friday. I had prayed about this since what had happend on Tuesday. We got there and just thought that we were done with x-rays....just three more, two of the spine and one of the hips. We met with the nurse, then the resident. This is when I got frustrated. I have to sit in the waiting room and fill out papers on Riley, while he is running around like a crazy toddler! Then the nurse asks me the same questions as well as the residen when he came in. So the poor resident got short snipity answers! We were told that Riley's spine is at a 65 degree curve. Surgery is considered at 70 degree. He wants another spine x-ray in six months. Riley will be in a body cast for, I think, 6 weeks to 6 months. I know for 6 weeks and we didn't go into details. Riley's hips, well, this would be easier if I could draw it for you, but I don't have they capability on this web site. Basically, the Hurler kids don't develope a hip socket and the thigh bone grows up and somewhat out a little. They would go in and break the bone where it curves and angle it in the right direction and then creat a formed socket for it. On both sides of his hips. He likes to do this surgery at the age of 4, 5,or 6 but not after 10. It is about a three hour surgery. Riley's knees are knock-kneed. He is at 15nd surgery is done at 20 They go in and staple the growth plate on the inside so the outside will catch up. I am thinking about having his hip and knee done next summer after he gets out of school since he will be in a cast for 6 weeks as well. I talked to Rick, and of course, it has to sink in for him, but later, he agreed that the hip and knee would be nice to be done next summer if his back could hold off. If not, then we will flip flop them.
10:15 - Dr. Petryk, Endocrinology Well, this one was just an initial visit to get us started for next year. Just some basic questions so she can see how he grows over the next year to see if he should or if we want him to have growth hormone injections. Riley is 30lbs and 38", which puts him in the lower 5th percentile for his age. OH, I did get short with this nurse, I checked in and asked if I would see the doctor before 11:00 as I had another appointment, she said yes. The nurse didn't come and get us until 10:50 which I let her know that I might not get to stay as we had another apptment, well, she tried to tell me different but finally agreed to let us do some vitals and then let us leave and return as we had anther apptment in there at 1:00.
11:00 - Audiology Evaluation This went okay. Riley's hearing is fine and we were done in about 45 minutes, so off to the one we left.
1:00 - Dr. Regelman, Pulmonary This doc was very pleased with Riley. Although I had stopped the inhalers in Feb/March after his last cold. He didn't get upset with me as he said he was going to do that this time with him, but now he got to see how he did without them. He said we just need to use those inhalers when we felt he needed them as well as the prednisone. His chest x-ray was fine and he would see us next year. Memie and Sydney had went to these appointments with us, just to get out of the hotel, so we were all tired and ready for a nap before we returned for the next appointment. This one was change, thank good ness, to the next morning at 9:00. The doctor had to do a talk on headaches, not to mention, he had one himself. He was very kind and came out to the waiting to make sure we were okay with waiting until tomorrow. So we went back to the hotel and took a nap.
4:30 - Dr. Charnes, Neurology This apptment was okay too. The doctor was happy with his speech and most of everything else. We discussed Riley's evaluation and we just need to keep on with the therapies which I will increase with home health when we return home. Again, just working on his behavior issues, which should get easier, if only he was with us each day.
After this appointment on Friday, Riley and I went back to the hotel and finished the packing and loaded the car. We met Rhonda and Andrea on the patio of Applebee's at the hotel for lunch at 11:15. It went well and we enjoyed being outside and having the sun on us. The girls each got some time with Riley and can't wait for us to come back next year as we will probably be there for about two weeks. Rhonda had to return to work but Andrea offered to take Sydney until her shift started at 3:00. So away they went. Memie, Riley and I walked to the clinic for our final appointments.
Friday June 13, 2003
12:45 - Dr. Braunlin, Cardiology She was quite pleased with his Echo and EKG. She told us that nothing has changed. THat there was a little (little) leaking in the valves, but she said the doppler is really sensitive and may have just picked up a little of nothing. But, since the transplanted cells can't go to the valves or the skeletal system, then we need to be carefull of some things. If Riley needs dental work or has stomach surgery, he will need to take an antibiotic prior to the procedure. The insides of the valves are very sticky and if bacteria gets into the blood stream it will stick to the valves and cause some major problems, which we don't want. Other than that she took down the heart history on my father (heart attack at 36, quad by-pass at 42, another heart attack, the need for another open heart surgery at 60, but died from a heart attack at 60). She said if we have surgery then she will do a fasting on him and do blood work then. IF for some reason we don't ever return to Minneapolis for his yearly check up, make sure he sees a cardiologis here each year.
1:30 - Dr. Peters, BMT exit Conference Well, it was about time. Dr. P was very happy with how Riley looked and acted....like a toddler who had been through transplant. We went through all of the appointments and the good and the bad. Dr. P's concerns were what the school will do for him. He said next year he will be a different child. He sees this alot in the transplanted hurlers after their first year of school, the behavioral issues get better. For our sake, I hope he is right. We are to stay on top of the school and make sure they provide for him what they are suppose to and to let them know what is going on so if they need to step in then they will. We agreed with the hip, knee and spine surgeries, hip and knee first unless spine needs to be done sooner. He was happy with vision, hearing, heart, lungs and satisfied with the carpal tunnel results. I think that was it. He said that once we make it through the second year, Riley should be okay. Evidentally the first two years are very important for virus' and infections. He told me not to worry about the developmental test right now, that he can clearly see what Riley is capible of. (Remember my dream on Wednesday night!! Prayers are answered!) He said that Riley is a very smart little boy and happy. All in all, it went quite well. When we were discussing the school, he asked how loud I could scream. I said well, I only got short with one nurse this time, he said just one?! It must not have been too bad as I haven't heard about it. I told him that it just happened yesterday. He said save that energy for the school as he has found that all parents will have to retrain these schools on what a transplanted hurler needs and hold on as the next several years will be rough.
Thanks for all of your prayers and I will update more later.
xoxoxoxox.....Jeanne
Wednesday, June 4, 2003 10:44 AM CDT
Day -4 to One Year!!!
WC: 9.8 Bilirubin: 1.4 Hepatitus Panel: Negative
I hope the numbers in the negative don't confuse you, but we are almost there. I can't belive it. I don't know if I will be near a computer next week or not, so I wanted to post this.
For Sunday, June 8, 2003 at 2:30 a.m.:
YEAH!!! RILEY BEAR, IT'S ONE YEAR TODAY!!! YEAH!!! WE ARE SO PROUD OF YOU AND STILL SO AMAZED OF HOW FAR YOU HAVE COME EACH AND EVERYDAY!!! WE ARE TRULEY BLESSED AND SEE GOD'S WORK IN OUR LIVES EACH TIME WE SEE YOU AND SYDNEY!!! CONGRADULATIONS!!! YOU ARE DOING WONDERFUL!!!
We are not sure were we will be staying. If there is room at the Ronald McDonald House we will stay there, if not then we will be at the Radison Hotel Metrodome, down the street from the clinic and still on U of M campus. Yes, Riley and I will be doing alot of walking! I talked to Katie yesterday from Minneapolis. Riley's bilirubin is up from last week's 1.3 to 1.4. She said we can go ahead and try the dropping the CSA dose to every other day. They will run labs on Tuesday and see where he is at and if we can stop the CSA next week. Please pray that his liver numbers correct themselve by then so we can practally be med free when we come home. I am post our schedule for those that want to know where we are. We plan on leaveing MN on Friday afternoon, as long as nothing has been rescheduled and we have not more visitors to see.
Monday June 9, 2003
8:45 - EMG (this is a never test for carpal tunnel
9:30 - Dr. Shapiro, Neurosychology
2:30 - Dr. Van Heest, Orthopedics
Tuesday June 10, 2003
9:00 - Echo/EKG, Echo Lab
9:30 - Dr. Shapiro, Neurosychology
1:00 - Katie Johnson and Labs
2:30 - Dr. Chrisiansen, Ophthalmology
Wednesday June 11, 2003
****No food or milk after 5:30 am, mya have clear liquids until 9:30am****
9:30 - Chest X-Ray
10:00 - Bone Age
11:30 - Arrival for MRI Sedation Preps
1:00 - MRI
Thursday June 12, 2003
8:00 - Dr. Ogilvie, Orthopedic
10:15 - Dr. Petryk, Endocrinology
11:00 - Audiology Evaluation
1:00 - Dr. Regelman, Pulmonary
4:30 - Dr. Charnes, Neurology
Friday June 13, 2003
12:45 - Dr. Braunlin, Cardiology
1:30 - Dr. Peters, BMT exit Conference
Yeah, then we can leave and head south!!! Memie and Sydney will be at the hotel or at RMH during most of the days, but we have plans to have several visitors to come and see the little Riley Bear. We will plan to do something in the evening with Sydney and Riley if he is not too tired. Sydney is so patient with all that Riley has to do during his visits. We hope that she continues to be the loving and caring little girl as she grows up on us....which is happening very fast. Please keep Riley in your prayers during all of his tests and for our safe trip.
If I conintue much more, then I will start crying as I will start telling about all that Riley has been through, which is really nothing compared to some of the other transplant children we have met. Dr. Peters had told us that Riley had made such an accomplishment to make it to 6months post and the next milestone would be the one year anniversary. Well, Dr. P, what do you think about me now!!! Am I still amazing you and re-writing medical journals with all that we have been through?! Just a note, when a family returns for there check-up, they always have the thought in the back of their minds that they may not get to leave when they were schedule to. I am concerned with this, just a little, just as I am each day that something will happen that Riley may need to be hospitalized for. We transplant parents really never go a single day without that thought. Transplant life for us would not be real if we didn't have all of our little fears in the back of our minds.
Well, that is about it for now. I hope everyone enjoys the picutre of Riley and Sydney that I have posted on the front page. Next will be Riley's forth birthday that will replace the third birthday pictures on the photo page.
More after we return.....
xoxoxoxo.......Jeanne
Wednesday, May 28, 2003 1:04 PM CDT
Day +356
WC: 7,700 Bilirubin: 1.3
Okay, I am sure you are wondering what happened to us last week. Well, it was just a busy week. Riley's bilirubin last week was 1.4...I know, it went up, but is now coming down. Ahhhh....the roller coaster ride of our life! Riley's seemed to have had a little bug on Sunday and wasn't quite himself. A little vomitting and not wanting to eat or drink most of the day. He never had a fever or diahria though. About seven o'clock, he seemed to be his normal self and started drinking. Monday he was fine. His labs yesterday did reflect the fact that he was dehidrated and may have had something, but the nurse said not to worry with it since he was in his "rare form" for her. He now tells you "Don't Wanna!" Riley's nurses Tracy and Micki really got a kick out of it. All the way up to the clinic I would ask Riley if he was going to see Tracy. He would say "Hi Twacy", "Twacy", "Where Go?" or Where Twacy?" Then once in the clinic he saw Tracy and said "No, Don't Wanna!" Unfortunately, these children have seen so many clinics, hospitals, labs, nurses, doctors and therapist, that they just sometimes don't want any part of it. Of course how could you blame them for feeling that way. Since Riley no longer has a line or a port, we draw from his little arms. His best is his right arm but we try to switch off. We put cream on it to numb it before we go. He only cries while we are setting up, but usually stops once the needle is in.
As far as his therapies, he is doing so well in them. I need to run for now, but I will post later this week some of the other websites that I have been checking out and I will also post his schedule while we are in Minneapolis.
xoxoxox........Jeanne
Wednesday, May 14, 2003 4:30 PM CDT
Day 342
I just wanted to let everyone that I think we are on the road again to potty training. For the last week and a half, Riley's little bottom has been pretty broken down from the meds(broken down means there are raw and open places). The only med that I have found that works and gives relief is Ilex. Unfortunately, I could not find it here in any of our stors or pharmacies. We had it in Minneapolis while we were in the hospital and had used up what I had left. I found it on the internet and was able to get it ordered, thanks to Memie. Anyway, his bottom is much better and he wants to use the potty again. This morning his diaper was completely dry from last night. He pee pee'd in it and ran to the bathroom telling me he needed to potty. I put him on the potty and he did his business! Yea!! He was so proud of himself that he made sure he showed me and clapped for himself. He doesn't mind poop poop'n in it, but pee pee is another story. Just something we get to work on this summer.
xoxoxoxo......Jeanne
Day 342
WC: 13,200 Bilirubin: 0.9
Sorry I didn't update on Monday, I was waiting on Dr. Selby's decission on Riley's CSA taper. Did you see that bilirubin number!!! We are so happy that it has come down. Andrea called me today and said that Dr. Selby was waiting to talk to Dr. Peters on what to do. Dr. P said that there isn't any problem with continuing with the taper. Yippee!!! We can go to 0.1mL once a day with the CSA....Yeah!!! Riley will stay at this for two weeks, then the third week he will go ever other day and then be done. This will be about the time we will be in Minneapolis. Dr. P said he felt the strange liver numbers could have been a little hepititus (spelling) from when he went "yellow" on us a month or so ago and it just took this long to get it out of his system. Oh, we are so happy that we can taper him down. We will continue with labs on Monday until we go to Minneapolis on June 9.
I hope all of you had a wonderful Mother's Day. Mine was great, being with Riley and Sydney together and at home. Last year, Riley got out on Friday that weekend from his first transplant. Rick had flown in and stayed the weekend and we just hung out. I really missed my Syssey Girl. But we are together now.
I did meet with the school district on Tuesday to see what they would offer Riley for the summer. They will only offer half of the services they are doing now....which is only half of what Dr. Shapiro requested! This will be okay as we will just bump up the visits from the home health care agency. This will be the last week for the school. The school will do extended services for two weeks in June and July. School starts in August. We are thinking about Riley going to the afternoon class as it will be smaller and maybe not so overwhelming to him. The morning class will have ten students in it, the afternoon will have about three to six. This will work out, I know it will and we will probably have to provide additional therapies outside the school for a year or so. Rick and I feel that Riley will make great gains once he is around other children. Remember that he has been with just Syssey and Susan's daughter Hannah for the past couple years, Hannah is only one though. He hasn't been around any other children, except in the nursery at church on Easter, in over a year. We hope he will adapt well and play well with others....time will tell.
Well, that is pretty much it and I will update next week. Until then, live like ther is no tomorrow!!
xoxoxoxox..........Jeanne
Wednesday, May 7, 2003 3:04 PM CDT
Day 335
I just wanted you guys to know what Dr. Peters has said to do. I had talked to Katie yesterday and she would make sure Dr. Peters looked at everything and new that Dr. Selby wanted to talk to him about Riley Bear. Katie said that if Dr. P had a plan for meds or whatever, she would call, if she didn't call then the doctors would just wait on Riley's labs on Monday and go from there. Well, Katie called a couple hours later and said that Dr. P would call Dr. S but Dr. P doesn't have any concerns. I hope they are right. We will see on Monday.
For those of you who watch the weather in other states or hear of tornados....Our surround cities were hit with a tornado yesterday between 5:00 p.m. and 6:00 p.m. Del City, were we live, was not hit, but areas just about 3-5 miles south of us were. Yes, this is close, but not like the one on May 3, 1999 it was an F-5 and it was about 2 miles away. Last nights damage was done to several neighborhoods, some hit in 1999. Some businesses were a branch location of our bank, some gas stations, our GM Plant, a strip mall and another business called CMP that a really good friend of our works at. CMP closes at 4:30 and we think it was hit a little after 5:00. The news is listing 118 injuries and 20 critical, but no deaths. Please keep all of these families and business ownerners in your prayers. Oklahoma's own Feed The Children had several semi's on there way to the area within two hours....full of water, food, blankets and other supplies. Way to Go Oklahoma!!!
Day 333
WC: 9,900 Bilirubin: 1.5
Well, I am not sure what to say, other than we are waiting on what to do next on Riley's CSA taper. Dr. Selby said he feels that Riley is trying to get graft versus host disease (GVHD). Even though the bilirubin number came down from 1.7 to 1.5 last week to this week, the other liver numbers are still all out of sorts....indicating GVHD. To those in the transplant world, you know this is really not something you want. GVHD is where Riley's old immune system is going to fight the new one....yes, this is not good and can happen this late in the game. In most cases of GVHD, it can be controlled and contained to an area with IV meds, unless it just seems it wants to take over and do what ever it wants. I don't want to frighten anyone, but death can be a result of GVHD if is spreads and doesn't stay under control. There are many different levels of GVHD so if Riley does have it, we will just work through it and say lots of prayers that the GVHD only stays for a short time and in a small area. So, Andrea here faxed several weeks of Riley's labs to Dr. Peters and Katie in Minneapolis for them to review. Dr. Selby wants Dr. Peters to make the decision of what to do next on the CSA taper. We are keeping the same dose going this week....0.1mL x2. I, too, faxed this weeks labs and a note to Katie to give her a heads up from Andrea. This is why the update is late, other wise I would have updated on Monday after labs. Andrea just called and said she was out of the office the rest of the week and has not been able to talk to Katie or Dr. Peters, so we will do labs on Monday and go from there, unless Katie or Dr. P calls me.
Well, on to better things in the MPSI world. ALDUAZYME IS APPROVED TO BE THE DRUG TO TREAT MPSI!!!!! Aldurazyme will be used in the Enzyme Replacement Therapy (ERT) for children affected with MPSI - Hurlers, Schie, and Hurlers-Schie. This was approved on April 30, 2003. Now you are probably asking - "What will this do for Riley?" Well, Riley already has the enzyme from the transplant so unless this drug will help with the skeletal system, then I am not sure Riley would really benefit from it....unless he looses his transplant, but that shouldn't happen. I will be talking to Dr. Peters about it when we return in June for Riley's visit.
Other than this, there really isn't that much to share right now. However, I feel that I need to put this in an entry before I forget it. It is not something I want to really remember, but it did happen. Last week, I woke up from a very bad dream. Sydney and I were in our house at night, the house was very dark and seemed to be somewhat empty. It was Christmas time and Sydney was five years old. We were waiting on Rick to pick us up, but there was not Riley in this dream. We were waiting in Sydney's room at her door to watch for Rick to pull up. We saw his lights and I picked her up and started walking out....this is where I woke up. I know this is just a dream, but Rick and I made the decision prior to transplant...if anything happened to Riley then we would move. I felt that in this dream, Riley was no longer with us and we were moving on. I know that this is just a dream, but sometimes, you never know.
I will go now and I am sorry for this entry. I will post Riley's schedule next week. We are looking forward to seeing old faces and meeting new ones when we return to Minneapolis. Unil next week....live like there is no tomorrow!!
xoxoxoxo...Jeanne
Wednesday, April 30, 2003 2:05 PM CDT
Day +326
WC: 11,000 (something, but good) Bilirubin: 1.7
We went to clinic on Monday and just did labs. Dr. Selby said it was okay to drop the CSA from 0.1mL x3 to 0.1mL x2. We will re-check labs on Monday and go from there.
I took Riley to a dentist this morning as he has chipped a couple of his teeth. This dentist does not see children under the age of five, so we have a referal...we knew this when we went in, just the insurace procedures. I will schedule one for next week. But in the mean time, I spoke to Lukes mom, Shelia since she is in the dentistry field. She said that if there are cavities in these teeth and if it was Luke, she would just leave them until they bothered him or became infected. She said that the cavities will not affect the adult teeth. But she and I both agreed that with the Hurlers, their bones are soft so this would mean their teeth would be too. By soft, we mean that they are not as strong as a normal person, but their development in their hip and knees need re-enforcement to help them to support themselves as they grow. I hope that made since. Any way, I think I will just have the dentist file the bottom of the teeth so they are not sharp and wait and see what happens. Shelia said children will start loosing their bottom teeth around age six and the top ones around seven to nine. I think we will hold out for as long as we can.
I filled out Riley's papers this week to start him in the public school's pre-school program this fall. He will attend Monday - Thursday in the morning or afternoon for two and a half hours. Then on Friday Riley and Sydney will both go to Friday School from 9:30 - 2:30. I think this will be great. Riley really needs to be around other children his age and start picking up things that four year olds do. (Riley will be four on June 28)
Oh, the other night, Riley was doing his usual thing about potting in his diaper and then going to the bathroom and taking it off and wiping!!! He still hasn't gotten the idea of telling us he NEEDS to potty instead of HE HAS POTTIED! Anyway, he brought me his diaper while I was getting his jammies out and I said "Riley Joiner". He said " Wriwey Joiner". Sydney was standing there and I asked her is she said it and she said no. I got him to say it again...and again...and again!! Is this not cool for all of us Hurler Moms!!!! He is really saying alot of new words, some that we don't even know. We are truely blessed.
I have a sad update. When we were in the second time, Riley's neighbor on 4E was Sam. Sam had cancer since the age of two. He was 14 and had three transplants from January 2002 to June 2002. Riley and Sam got out the same day, July 4, 2002. Sam is from Iowa and had been back to Minneapolis a couple of times since he went home in September last year. I didn't know he had a web page until Monday. I read it yesterday and found where he is now with Jesus. He died about 4:30 a.m. on Tuesday due to complications from the transplants. My heart goes out to Mary, Frank, Susie and Sarah during the next days, weeks and months. His web site is www.caringbridge.org/ia/sam if you want to leave a note, Mary would really like that.
Sam's death has brought back so many memories from the Unit. We know as parents that making the choice for transplant is their only chance at life. At times, we know this is what we need to do for them, and later we wonder if it was the right thing for them. (Brandon & Jenny, this was for you!) Please pray for all the families that have to make this decision, as at times, it is really hard. You will never know how much these families endure until you read about it, know a family and see it, or you experience it yourself. These are very special families, and God chose each one of them to take care of his child until he is ready for them to come home. It would just be nice if God asked us if we were ready for them to go home with Him! We treasure each day we have with our babies and trust that God will take his child when he needs to.
Love each other like there is no tomorrow and don't put anything off....
xoxoxoxox.........Jeanne
Monday, April 21, 2003 9:33 AM CDT
Day 317
On Day 310 WC: 13.8 Bilirubin: 1.5
Well, what do you think about those numbers?! We are so happy to see the bilirubin coming down. Dr. Selby was too. So happy that we didn't have to go to clinic today. Yea!! We will go next Monday. Dr. Selby said we could go ahead and drop the CSA level if we wanted to. I told him that we would be happy to, but if this is the only problem we are going to run into with his transplant, then we will take it as slow as we need to. So we decided to wait until we do labs again before we drop it. Riley's little nail fungus seems to be getting better. He is loosing most of the infected area, but me being a licensed (but not praticing) nail tech, I know it will grow back healthy in about two to three months. It has also spread to some of the others, which is common. His right thumb is the worse and a little on his index finger. His left thumb has a spot too and a tiny spot on the left index as well. The other nails seem to have wanted to start it but we got him on the medicine early so it wouldn't spread to all of them. They just have some rigdes on them.
We hope all had a wonderful Easter yesterday. I know I had promised pictures, but my digital camera and regular camera both had dead batteries in them. So we do not have Easter pictures, just video. I will do some pictures this week and put them on this weekend. For those of you who have seen him on his photo page, the first picture is him from Easter last year, before transplant. The others are from his second transplant around day 25. He really doesn't look the same any more....more like a little boy! Rick, Riley, Sydney and I went to Sunrise Service yesterday. It was a little chillie outside, but we were so happy to take Riley. This is the first time Riley has been any where since his transplant, besides the clinic. He had a wonderful time. We had breakfast in our fellowship hall and then the toddlers did and Easter Egg Hunt. Riley and Sydney did realy well. Sydney did so well that she had three, yes three baskets full of eggs. The toddlers were Riley, Sydney and Sarah. They were so cute. Sydney two of the youth group girls helping her carry her baskets. Sydney did so well that she went out and hunted with the big kids. We are so blessed to have such a wonderful Church family. I felt at ease just letting Riley and Sydney run around and go to class without me having to be there. I think some of them were either not sure it was Riley or not sure what they could do, but I feel all were so happy to see him. Rick and Riley didn't stay for the regular church service, they went home and got ready for our dinner we were planning. We had a wonderful day and Riley and Sydney had so much fun. I am so glad they are getting to the age that they can really enjoy the holidays. They were just so cute and amazing.
This morning, Riley said he needed his diaper changed. After I took it off, he said he wanted a bath. So off we went. I went potty and he stood their and said "potty?". I asked him if he needed to potty, he said "potty?" and sat down on the potty chair. After a few minutes he got up and I told him that if he needed to potty, he needed to sit. He said "potty!" and pointed. Well, he did...he poop pooped. I was so happy for him. We clapped and high fived and yea'd. Then I went and got Rick out of bed and he came in there and yea'd him. Sydney had to get up and see what was going on. She just had this look on her face like "I do this every day, what is the big deal!" It was so cool to see that he did this. He has shown an interst in it for a few days, I hope it continues.
Riley's speech is getting so good. Rick and I are always saying "your son....did such and such" or "your daughter....did such and such". Well, about a month ago Sydney had started saying "momma, your son....". Riley doesn't seem to be too far behind her because the other day he said "your daughter" and pointer at Sydney. Rick and I thought this was too cute. These two little Angels will never stop amazing us. Each day is truly wonderful.
Oh, I forgot. Riley has sometime in the last several months gotten his bottom two year molars in. I knew he had his top ones in since January, but I really don't like sticking my finger in his mouth knowing that he would probably bite me, which usually happens. He is also getting good with is speach, I just hope he will be able to go to school this fall and not be too far behind the other four year olds.
Well that is all for now, I know have other stories to tell about Riley and Sydney, but I will post those next week. Have a wonderful week.
xoxoxoxo.......Jeanne
Thursday, April 10, 2003 4:31 PM CDT
Day +306
WC: 9.9 Bilirubin 2.1
For the past couple weeks we have been going to clinic every Monday morning for labs and then returning in the afternoon to see Dr. Selby and Andrea. This week, we have had to add a new medicine. Riley has a fungus on his right thumb, which he happens to suck when he goes to sleep. Since he sucks this thumb, we can not put a topical ointment on it, so we have added another oral med. I can not remember the name of it right now, but he will take 8cc twice a day for seven days, stop for twenty-one days and twice a day for another seven. The side affects....increase in liver numbers and CSA. Just not what we want to see right now. Dr. Selby seems to think that as long as we keep his CSA at 0.1ml x 3 during this time, we should be okay. This will really delay his taper, again. I don't know how long it will take for the med to get out of is liver to give us a good liver number, but don't be suprised if the bilirubin keeps going up over the next several weeks. Dr. Selby had mentioned that the increase in the bilirubin is usually a sign of GVH, but there are no other signs....bad stools, stomach cramping or vomitting. So he said he didn't see the need to do a liver biopsy right now. LIVER BIOSPSY??!! Exactly what I was thinking. I would really like for this not to be done, but if Riley's numbers are still up there after this medicine, then we are going to discuss it.
MINNESOTA HERE WE COME!!!! MINNESOTA HERE WE COME!!!!
We will receive our schedule either this week or next week, but we are scheduled to return for the one year check up starting on Monday, June 9, 2003 for the whole week. There are at least eighteen appointments put into five days. The good thing is that we will be able to see Dr. Peters. It is sometimes hard to catch him there as he does have a lot of conferences to go to. I am looking forward to returning as for some reason I am missing being there and seeing all of the nurses and therapist, and of course Katie the nurse practitioner and Rhonda our care partner. Riley, Sydney and my mom will be leaving on Saturday and will either leave after our appointment on Friday with Dr. Peters or wait until the next morning. It all depends on when and who we get to come see us. Hint Hint to those special ones out there. We miss you guys and we can't wait for you to see Riley.
Riley is still doing well with the therapies from the home health care agency, not so well with the school. The school doesn't come out for as long as the agency does so it takes longer for him to warm up to them. Sydney has been a little under the weather the past day or so, but is still going strong. We went to Texas last weekend to see my cousins's new baby, Carsyn. Riley really loves to hold her. Any time someone would be holding her, he would sit next to them and hold his arms out and say "Here, Here". He was so sweet with her. He would talk to her and rub her tummy and of course mess her hair up, just like a boy! Syssey Girl was too busy playing to be messing with a baby, but didn't mind saying yes to me when I asked if we could bring her home with us. We had a wondeful time away from home. Even though Riley did fall and hit his head and scrape his knee. We just knew that he would have this huge knot on his forehead, but didn't and you can't even tell where he hit it. Dr. Selby looked at his knee and said this is what we want now....Riley to be getting scaped knees and elbows...just being a boy! When I Riley fell, you should of heard the thunk it made, but I didn't panic, I just held him after Rick checked him out. You know how dad's are sometimes...be ruff with them, but he was so sweet with him after he fell.
Well, I suppose that is it, I am going to try to update once a week after we go to clinic. I will list next week some of the websites that I have been looking at here lately of other Hurlers. Until then have a wonderful week!
xoxoxoxox......Jeanne
P.S. CJ is doing better, he is at home and goes to therapy several times a week along with doctor appointments. He is at the infant stage after being on the ventilator and will just have to take it easy and re-learn alot of things. Please keep them in your prayers as I know this is hard on his mommy and daddy and family.
Tuesday, April 1, 2003 8:42 AM CST
Day +297
WC: 11.8 Bilirubin: 1.9
Wow! I can't believe it has been a year already. Today is the one year anniversary of Riley's first transplant. His first transplant was an unrelated cord blood. I think he was about day +25 when we found out it didn't engraft. I can not beleive all that Riley and our family has gone through in the past year, but we couldn't have done it without the support of our family, friends, those that have come to Riley's page to meet him - that we have never even met, and of course...God. I know God was with us the whole time and he still is. I am really having a hard time doing this without crying, but they are happy tears because we still have our Riley Bear. Over the past year we have been with many transplant families who have lost their little one...my heart still aches for each of them and I keep them in my prayers. We have been through a lot and we want to thank you for being a part of our lives over the past year. We have met and made many new friends, in person and through the many web pages. Even though Riley's first transplant didn't take, we didn't give up hope for our little boy. Although it was heart breaking to have to know what he would go through again, we had all the support in the world we could have. I am sure I am jumping around on the subject, but I guess that shows just how emotional I am today. On the day of the first transplant, Riley was in a very good mood. In fact, I think he was so busy with all of his Easter gifts that he didn't have time to feel bad. He pretty much slept after he got his transplant, which gave me time to spend with Rick, Sydney, Memie and Memaw. Riley did such a great job, you couldn't even tell he had a transplant...well, little did we know then that it wasn't taking. But that was okay. Later that day, we were given the news of our sitter's first baby. Hannah Pearl was born a couple hours before Riley's transplant. At least we did have one complete blessing that day. Today little Hannah P is one, and she is so sweet. I missed her first six months but I did get pictures sent to me. And from what I understand, Sydney was quite the helper during those six months.
Today, Riley is doing fine. His WC was up to 18.3 last week but his bilirubin was donw to 1.9. Dr. Selby thought the WC was up because I had given him some prednisone the Thursday and Friday before his labs on Monday. Riley was coughing quite a bit and to keep from going to the Emergency room or end up in the hospital, he got the steroid. Which, it did help and his cough is almost gone and his runny/stuffy/slimey nose is gone to. We have dropped his CSA from 0.15 x 3 to 0.1 x 3 until after his labs on Monday. We were hoping he would be off by now, but that is okay, if his body isn't ready to come off, then that is fine. Just one day at a time. He is doing so good in his speech, I can't believe the change in him. He is really wanting to say words. He is now really puting two and three words together, that others are starting to understand. Last week was the first week of the school coming out and working with him. He will have to let them warm up to him. I hope he enjoys them as much as he enjoys Mercy Home Health Therapist.
Rick, Sydney and I are doing fine. Sydney is being the little busy body that she is and she is really good about being patient with Riley and letting him do things on his own. I was so afraid of this. I was praying that she wouldn't do things for him. But Riley is trying to catch up with her. I see Riley doing the things that Sydney was doing about 3-6 months ago, but still adding to all of his abilities. Rick and I work and enjoy watching Sydney and Riley play and fight and we love it and wouldn't change it for anything.
We want to say a big thank you and miss yous to all the nurses and aides we left behind in Mineapolis. I will list some of them, but don't be hurt if I forget some: Patty, Tammy, Andra, Adyham, Teresa, Theresa, Cassey, Sarah, Kim, Kristen, Sarah, Chris, Jill, Carey, Mary, Mary, Aaron, Jen, Angela, and the many that I have went blank on, but have not forgetten all that you did for us. We also miss Jane, Andrea and Rebecca, the wonderful therapist that Riley loved to hate!!!
Well, I must go for now. I am really starting to get teary eyed and won't be able to read what I am reading. I do want to let the parents, family and friends of those that have a loved going through transplant. Please pray for them each day, love them like there is no tomorrow, for God is the only one who knows how much time we have with them. Place all of your worries in God's hands, it is much easier and it makes you feel better when you don't have to worry about the little one, instead you can just sit with them, hold them and enjoy that moment. Have faith in each day and reach out to those around you, that is why God has put those people around you. Beleive it or not, there are days when I miss being in Minneapolis, for all that strong love and support. Keep the faith and God will see you through.
More, next week.
xoxoxoxox.........Jeanne
P.S. I talked to CJ's mom this weekend. CJ goes to therapy three times a week and to other doctor visits. She said this is pretty much all she does every day since she drives 45 minutes one way to the appointments. CJ is still at the infant stage of recovering. By this, she means that he is pretty much an infant. Please pray for them, they have a lot of family and friends supporting them, but an extra prayer never hurts. We miss them and wish that we were closer.
P.S.S. We want to let all of our friends that we met through transplant that we miss them and think of them each day. You will always be in our prayers. Give us a call or e-mail us. Those who haven't kept in touch for a while NEED to send an update....and you know who you are.
Wednesday, March 19, 2003 3:51 PM CST
Day +284
Wow!!! Can you believe how time flies! Tomorrow is the one year anniversary of the first admit day to Riley's 1st transplant. I have somewhat hesitated on these days to come up...the one year anniversaries to everything. All those emotions are really coming back to me and I am sure to our entire family. Riley and I were in Minneapolis by ourselves for the first couple of weeks. It was so hard to see him go through all the chemo and radiation, but he did like a trooper. Then came the transplant of unrelated cord blood on April 1, 2002. We had Memie, Memaw, Rick, Sydney, Riley and I all in the room along with the chaplin and two nurses. Riley did quite well that day, as he did through out both his transplants.
Well just a little update on where we are at on therapies and his CSA taper. We have started his home therapies through a health care agency. They are coming out as Dr. Shapiro requested...Speech is four times, Occupational therapy is twice and Physical Therapy is twice each week. This is our second week and our speech therapist has already passed Riley on to someone else that works better with his age. At least she recongnized it and knew to change it. My mom and I met with the school district last Friday to see what they will provide. Rick & I and the school hope for Riley to start the pre-school program in the fall. This will be Monday-Thursday for two and a half hours a day. This will work out great so he can go to Friday Friends with Sydney on Fridays. The school wants to start out slow and gradually build up. Riley will receive the following in the home: Tuesday & Thursday will be speech twice a week and OT once a week and Friday will be Pre-school and PT. Speech, OT and PT are each thirty minutes and Pre-school will be for an hour. Then, at the end of May they will re-visit where he is and see if he qualifies for extended school year...this would be through the summer. I don't understand why they would need to re-visit the idea...it is obvious that Riley needs the services. After all, they are only providing half of what Dr. Shapiro has requested. That is why we have the home health care agency picking up what the school will not provide. You know, I thought Riley's transplants were hard to get through...I am now thinking it is dealing with the school districts that is hard...the transplants seem to be a piece of cake at this point.
As far as his CSA taper. We had thought that he would be off of them after next week. Well, his biliruben went up to 3.4 on Monday. Last week he was 1.6 and the week before 1.9 and the week before 2.9 and for about three weeks before that I think he was at 4.9. I am sure you are wondering how I can remember that...so is Rick. I guess there are just somethings you remember. Any way, Dr. Selby and Katie are both out of town and Andrea wasn't sure what we should increase his CSA up to, so I called Dr. Peters. We agreed on 0.15mL three times a day for the rest of the week and then re-check next week and let Dr. Selby see him. I had mentioned to Dr. Peters that only his eyes were yellow and that his stomach seemed to be enlarged some. When we go for labs each Monday, that is all we do, just labs. This Monday we will do labs first thing and then go back to see Dr. Selby. So, we will probably need to come up with another plan for tapering CSA if his bilirubin keeps getting all out of whack.
That seems to be it for now. I am slowly decorating Sydney and Riley's rooms. Rick and I are doing fine and our jobs are going, well, they are going. We would love for one of us to be able to stay home with Riley and Sydney, but that is not possible right now, besides, Susan is wonderful and they love her and Hannah Pea so much. Sydney is growing so much and is almost completely potty trained. She still sleeps in a pull up, but it is always dry and she has no accidents during the day. Riley, well, we will work on his potty training soon. We need to get the therapies down first and in a routine. We have no big plans coming up except for planning Riley's party on June 8. I just hope we get him off the CSA soon enough so he can be around all the ones that have missed him for so long. I am not sure if I have mentioned it, but we are planning to have a big "Thank You To Everyone" party on June 8. This is how we want to thank everyone who has helped us along the way this past year...that same day will be Riley's one year anniversary for his Stem Cell transplant. We are also planning on returning to Minneapolis in June too.
Oh, I don't have an update on CJ, other than he has been discharged from the hospital about two weeks ago. I know they are busy with getting settled back in their home and going to therapies each day. I will try to call them this week and update you next week. Please keep all of our families and friends that we have met along this road, in your prayers. As I go through the one year anniversaries, some families will be completing the one year without their child. I really miss these families and all that the support we provided to each other, but I know God is comforting them and will help ease their pain.
xoxoxoxox........Jeanne
Monday, February 24, 2003 9:17 AM CST
Day + 261
Well, we have been busy. I just wanted to give a short update. Riley is doing fine. His biliruben last Monday was 1.8 which was 2.9 the week before and then had hung around 4.9 for a few weeks. Riley does not have any gallstones or have any damage to his liver from the chemo or disease...Yeah!!! His yellowness is going away and we have gone back to his taper again. He still has four weeks left. We will go today for labs and each week during his taper just to make sure his bilirubin stays down. He is eating a lot more and staying busy. We go Friday to the school district for them to test Riley so they can get his therapies started. I hope it starts soon, he is in real need of speech.
I hope everyone is doing fine. Tuesday, February 25 is National MPS Day. Please remember all those that are affected by MPS and say a prayer for them.
More later after we test Riley, although I will meet with them two weeks later for the results and their actions.
Give your loved ones hugs and kisses!!!
xoxoxoxox.......Jeanne
Sunday, January 26, 2003 at 10:00 PM (CST)
Day +
I hope everyone has had a wonderful weekend. I wanted to give you an update on our little dude. Last Sunday I had noticed Riley's eyes were little yellow. I didn't think anything else about it until on Tuesday and Wednesday I thought his skin had a hint of yellow also. I asked Susan (our sister) on Thursday if she would look at Riley and let me know what she thought and I would call her later in the day. She told me then that she had seen the yellow in his eyes the other day. Later she called me and said she did see the yellow in his skin. I called Andrea(nurse practitioner) at our BMT clinic and she said she would call the doctor. She didn't seem to concerned so I called Katie in Minneapolis. I am sorry but when I don't get the response that I think I should be getting from Andrea, I call Katie. Thankfully, Katie is very understanding of my questions and my concerns for the response from Andrea. After talking to Katie she gave me a list of labs for them to run for Riley's liver. I talked to Andrea and we agreed I would bring Riley in on Friday morning for labs. We are scheduled for Monday to do monthly labs, RSV shot and Dr. Selby to look at Riley's incisions.
Riley and I went in on Monday and he did wonderful with them drawing from his arm, I had put some numbing cream on his arm. Riley no longer has a central line or a port to draw from. I gave the list to the nurses of what Katie wanted ran. We left and I checked later in the day for the labs. The tech said gave me the basics as the others weren't back yet. WC: 8.5, Hemoglobin 12.9 and Platelets 276,000 and the others were fine. Dr. Selby called and asked if I had a yellow boy living with me, I said yes. He always tries to help put the parents at ease. We talked and Riley's bilirubin was 4.2 and his some of the other liver test were elevated too. Some of them weren't back yet, but he would have them Monday. Dr. Selby said he would call and talk to Dr. Peters to see what they both think should be done next. Andrea called me later and said that they had talked and agreed to keep Riley's meds the same until Monday. Andrea would see if the lab could still run the Hepitis panel on that mornings blood draw, if not then we would re-draw Monday morning. Riley will go for a gallbladder x-ray and abdominal doppler on Monday morning to see if there is any blockage. We will then see Dr. Selby that afternoon. Riley is still being his normal self, maybe just a little more tired. I have notice that he has taken an extra nap today, but that could be that he and Sydney have been playing hard.
Just a note on Sydney...she started Friday Friends at Susan's church. She goes on Fridays from 9:30 to 2:30. Susan dropped her off and told her by and took off to the class. I checked on her around lunch time and they said she is having a wonderful time and is doing well with the other children. They have five in each room the same age. We know she is happy doing this and needs to get out and interact with other children. She will probably go again next year so that she will really be ready for pre-school the following year. Riley is still homebound and will have to sit this semester out, but will be going next year.
Riley's therapies are still a full time job for me. I got the letter from Dr. Shapiro in Minneapolis and faxed it to the school distric. Now they have passed it on to the evaluation team to see if they need to run additional tests before setting up his appointments. I am also checking into what our insurance will cover. Dr. Shapiro wants 3-4 speach, 2 occupational and 2 physical therapies each week. I just hope that the school distric will work with us and do most of this.
I will update you in a day or so to let you all know what is toing or with Mr. Riley Bear. Thank you to all of you who still check in on our little dude. Maybe I will be able to give you more updates after therapy starts. Oh, please keep CJ in your prayers as he is recovering from his pneomonia. He did get off the oxylator and went on and already off the ventilator. Now he just has a long recovery for his body as his muscele are week. Also, the doctors won't know the damage done to his brain (from them preforming CPR for fifteen miniutes) for another three weeks.
Alexis...you are in our thoughts and prayers. Your Mommie and Daddy miss you so much, but they are happy to know that you are with Jesus and no longer have the pain you had here on earth. You are an inspiration to us all and remind us of how blessed we are to have at least one special person in our lives to love. Thank you! XOXOXOXO
xoxoxoox..........Jeanne
Saturday, January 18, 2003 at 01:00 PM (CST)
Day +224
Hello! Sorry I didn't get to update on Sunday when we returned, but we were all a little tired and trying to get ready for the next week.
We left on Monday morning and stopped by Nashert's office and visited with many friends that I miss so much. They were so impressed with Riley and Sydney too. We had a really nice visit, we are so blessed to have such wonderful people in our lives. We then went by Trade so everyone there could see Riley and Sydney for the first time. We didn't stay long as they had gotten pretty active when we were at Nashert. We finally left Oklahoma City around 9:30 a.m. We drove as far as we could, or as far as Riley and Sydney would let us. We got to Des Moines, Iowa around 8:00 p.m. and stayed the night. Riley and Sydney slept most of the way so they were pretty much bouncing off the walls. Sydney did really well, she didn't even potty in her pull up all day long. You Go Girl!!! Oh, the end of Riley's NJ tube that we put the meds in had broken off about six weeks ago. We had rigged it up to make it work as no one in Oklahoma wanted to replace it. Well we forgot to bring tape and we couldn't put it back on with out, so we took it out. But Riley will be able to get another one when we get to Minneapolis.
Tuesday, we left around 9:00 and arrived in Minneapolis about 2:30. The drive was fine...not bad weather, or not snow at all for that matter. We stayed in the our hotel room all night except when Sydney and I went to Target to get some snacks and drinks. We are so lucky to have such good little travelers, they did so awsome!
Wednesday, Riley and I started out early. Rick decided that we didn't need to drag Sydney along on all of the appoiintments so they stayed at the hotel. We first met with Katie, who was in WOW! about Riley. She couldn't belive how much he has changed and all that he is doing. Since we havn't been able to get the school district out for Riley's therapies, Sydney has been doing quite well for him. Riley had labs drawn from his port for the last time. We are removing it on Friday since he isn't using it and so it won't be an infection magnet. We miss seeing Katie each week, but are glad to be in Oklahoma. I told her about the tube and she said to try and give them orally and we can talk to Dr. Peters on Thursday about putting in and NG during surgery. We then went to do his chest X-ray. I think this is the first time he didn't throw a major fit. He only cried a little bit and asked to have stickers after words. We then went up stairs for Neurology. I wasn't quite sure what the purpose of this visit was, but Dr. Peters said that we would see them on our yearly visit and they needed some sort of a base line to start with. The doctor told me that Riley's head was 53 cm and that the high end of a normal 3 1/2 year old is 50cm, so this was good. He also said that the clouding in his left eye was gone and there was a little left in the right eye, or I could have this switched around. Also, Riley's ribs don't flare out like most Hurlers nor does he have severe joint damage in his hands, knees and hips...just from his visual exam. He thought Riley was doing well and was being a regular three year old boy. Riley was being quite himself for this doctor, even having a dirty diaper and wanting it changed before he did anything else. Next was to Dr. Milla, pulmonologist. He looked at the chest X-ray and said that he didn't see anything and thought it was the best he had seen for Riley. Riley did have a little cough with stuff in his throat. Dr. Milla could only hear a little bit of it in his chest but nothing in the upper resperatory area. Since Riley is having surgery Friday, he will go ahead and have a broncheal wash done just to get what ever is in there, out. That was it for the appointments and let me tell you, we were both ready for Daddy and Syssey Girl to pick us up and eat. We made a few phone calls and our care partner will come by on Thursday evening to see us. Riley and I miss her as well.
Thursday...well this was the day we had to do the nuerosphyc testing. This really sucks as it takes several hours and I know Riley needs it done, but it just takes so long. We finished the evaluation with Kate and was going to meet with her later after Dr. Peters with the results. We went back to the hotel and returned for the Dr. Peters appointment, Rick and Sydney went as well. Dr. Peters is so pleased with Riley. He told us that we have reached a MAJOR milestone with Riley and that he is still with us. We thank God each day for that. Our visit with Dr. Peters went well. He didn't seem too concerned with anything other than the therapy, but understood that I was tired of being on everyone's butt about our son. (After getting to come home from Minneapolis Riley went into the hospital for his infected central line. It took about three weeks to get a port in...therefor, I just needed a break and wanted to be mommie, the little play buddy to Riley and Sydney) Dr. Peters asked how the oral meds were going. I told him that after I gave Riley the CSA, he went around for an hour spitting and licking everything. Dr. P said he would order the NG tube, but said Riley was pretty smart and new that the meds tasted bad. He thought it was funny when I told him about the licking and spitting. Dr. Peters and Katie gave us the CSA taper schedule. He will be off of it in seven weeks. Riley will then have about six weeks to get his own immune system and we can start taking him to church the first of April, without a mask!!! We will return in June sometime for his yearly evaluation, which will be about 10-15 appointments...I am thinking that Sydney will probably not make it to that one, but you never know. Other wise our meeting went well, just bits and pieces of what to look forward to with our little guy. Dr. P did say that they are working on trying to get the Hurler kids to grow taller. Most only grow to about four feet. He said one of our appointments in June would be with that research team. We did make it by the unit to try and see some of the nurses, but Carrie and Sarah were the only ones there that we knew so we decided to come back before Riley went for surgery. We met with Kate and Dr. Shapiro with Riley's test results...he is about 28 months. Dr. Shapiro said she would help us with the school distric on getting services out and started so that the gap doesn't widen for Riley. She was impressed with how much he had gained, but he still needs to get as close to his age group as possible and fast. Rhonda came by and we ordered Davonnies Pizza...it was so good. We had a nice visit with Rhonda and she and Riley just hugged and kissed. They missed each other and Riley remembered who she was. Maybe when we go back in June we will be able to go and do something other than staying in the hotel.
Friday, we took Riley to the unit and saw CJ's favorite nurse, Jen and Riley's primary nurse Patty. She was so wonderful for us during both transplants. Riley suprised us by shying away from Patty, but Patty said it was okay. Those were the only nurses we knew, they said they had hired alot at the end of the summer and so it changed some of them's work load. Hopefully we will be able to see more of them in June. We are sorry we didn't see the others. I also didn't have time to see Taylor and Presley's families either, I am sorry guys, but you are always in my heart. We took Riley down stairs for surgery check in. When we went back to the holding area Riley started crying when he saw the PJ's he used to wear...I think he does remember some of the hospital things after all the time he spent there, I just hope the unpleasent memories will fade as we do have good memories there. When the doctor came in to talk to us, I was holding Riley and Sydney was lying on the bed watching tv. The doctor asked Riley if he was Riley and he said "no", he then asked Riley if that was Riley and pointed to Sydney, he said "yes". It was too funny, even though we don't think Riley understood what he did. We went over everything they were going to do...port removal, umbilical hernia repair, broncial wash, replace the NG tube and the BEAR hearing test. Yep, that was all. The anesthesiologist let me dress and take Riley back to the OR room and stay until he went to sleep, which wasn't long. Riley went back about 11:00 and we went back and saw him around 1:30. We were able to leave the hospital about 4:30 and go back to the hotel. Once Riley was settled and asleep, Sydney and I went to The Mall of America. She really needed to get out and run. We stayed there for a few hours. She really liked the waterfalls with the lights. She rode the coin operated rides they had and really liked them. Since I am not an amuzement part ride person, she will need to return with her daddy in the summer to do some of the other rides. We returned to the hotel and ate, Riley continued to sleep, which was good. He did drink a little and I gave him some of his pain medicine in his NG tube. Riley slept like we did in the hospital, just holding each other as Sydney slept with Rick.
Saturday, we got up and left for Oklahoma about 9:00. Rick wanted to leave earlier, but we decided to go ahead and waite. We had a nice drive home as Rick did all of the driving until we got to Oklahoma. Riley did well, we stopped a couple of times and got him out and changed his diaper and let him stretch a little. He pretty much slept and so did Sydney. We got home about 9:00. We came in and let Riley stretch a little and he was ready for bed. He did finally eat some Cheerios when we got into Oklahoma and he drank some more. We had a nice trip home.
Sunday, Rheta came and stayed with Riley and Sydney while we went to church. Rick and I were installed as Deacons to our church, which is a true honor. Everyone was happy to see that we were back and to hear that Riley will be able to come back to church in April. I think we will make sure he is there for Easter Sunday.
We want to thank everyone for their prayers and thoughts. You have no idea what kind of year this has been on us and we pray each day that no one else has to have this experience, but we know that there will always be those few that will. We only pray that God gives them the strenghth that he has blessed us with.
Until I update in a few weeks, treasure each day.
xoxoxoox......Rick, Jeanne, Riley and Sydney
Oh...I almost forgot. We got the test results back on Thursday....Riley is still 100% engrafted and his enzyme level is 73.9...both of which is wonderful.
Sunday, January 05, 2003 at 08:49 PM (CST)
Good evening to all. I am posting our schedule so our family will know what Riley is up to this week. We will be leaving Oklahoma City on Monday morning...not too early as we will be breaking up the twelve hour drive in two days. We plan to arrive in Minneapolis on Tuesday.
Wednesday, January 8, 2003
8:00 a.m. Labs/History and Physical with Katie in BMT Clinic
9:00 a.m. Chest X-ray, Outpaitent Radiology
10:00 a.m. Neurology eval with Dr. Charnas
11:00 a.m. Pulmonary eval with Dr. Milla
Thursday, January 9, 2003
9:30 a.m. Neuropsych eval with Dr. Shapiro
2:00 p.m. Conference with Dr. Peters
Friday, January 10, 2003
9:00 a.m. Check in at 3C, Fairview University Hospital OP
11:00 a.m. Hernia Repair, Port-a-cath removal, Audiology in O.R.
All of the appointments will be in the PWB Building except for his surgery on Friday. Our plans are to leave on Saturday as they said Riley should be able to travel without any problems. Riley is coughing a little right now, but does not have a fever or runny nose, I hope this doesn't delay his surgery any. During church today, Pastor James announced Riley's return to Minneapolis. He said that Riley was going to go back to get the approval to return to church as he and God had a discussion over coffee this morning about it. Please keep Riley and us in your prayers as we make this next phase of our journey. We are blessed for everything we have.
Update on CJ...he is still on the oxcylator and with the hope of going to the ventilator soon. The doctors are concerned with the weakness of his heart and the strain that was put on it. CJ will need to be on the vent for about six weeks and then he will need to go through the normal discharge process of eating and taking his meds. Please keep them in your prayers as well. Mandy and Jamie are being very strong, but still need to be able to lean on God for their strength, just as we all need to do.
Have a wonderful week and I will update when we return.
xoxoxoxoxox......Rick, Jeanne, Riley and Sydney
Wednesday, January 01, 2003 at 09:29 PM (CST)
HAPPY NEW YEAR!!!
I had hoped to update Riley's page before now, but the holidays have been very busy this year. We hope that each of you have had a wonderful holiday season this year. Riley and Sydney had the best Christmas ever. Santa was very good to them, not to mention all of their grandparents, aunts, uncles, cousins and other family and friends. We had a wonderful time watching their faces Chirstmas morning...let me tell you, this was the best feeling ever to see Riley with his sister on Christmas morning. We are truely blessed to have Riley and Sydney. After the year we had this year, we see the holidays through our children's eyes...all so innocent. We only hope that each of you are able to experience this innocence. We have so much to be greatful for this year. Please treasure each and every minute you have with your loved ones.
The Awery family lost Morgan about three weeks ago. Our heart breaks for them. We pray that God will help them heal and will guide them and comfort them. They stopped by and visited with us on Saturday on their way to Arizona. It was really nice to see them, but very emotional.
We ask that you pray for our little friend CJ in South Carolina. He is 13 months post BMT and has done well, he will be three in May. He is in the hospital in SC with pneomonia and it is not looking very good. He went into the hospital this morning and his little heart has already stopped beating three times. They have put him on the ventilator and the oxilator. The doctors can't seem to figure out why he has gotten so bad so fast. They said his little lungs are not doing good. He is starting to swell, but he is sedated. They were able to find out who CJ's donor was and CJ received gifts from him. These donors are amazing and so wonderful, please consider being a donor. I will write more in a day or so to update you on CJ.
Riley is still doing fine. He and Sydney spent the night with Rick's parents last night. Riley started coughing so we have started his inhalors again. He doesn't have a tempature, but we are watching him very close for any other changes. He is playing and pestering his little sister, so he seems to feel okay. We return to Minneapolis next week for his six month evaluation, even though he will be seven months post on January 8th. Riley will have his labs, x-rays, and a few office visits. Riley will have his umbilical hernia repaired, portacath removed and a hearing test done on Friday about 11:00 a.m. We are hoping to be able to drive home on Saturday. Please pray that all goes well with our travel, visits and surgery.
xoxoxoxox.........Rick, Jeanne, Riley & Sydney
together in Del City
Tuesday, December 10, 2002 at 10:49 PM (CST)
Day +185
Wow! I can't believe that Sunday was Riley's six month anniversary. Riley is doing great. We have not had any problems with his port. We we go to clinic, he only screams because we hold him down so they can insert the needle...then he stops screaming. We are now going to clinic every four weeks. He is getting the RSV shot again this season. On his next visit he will go to the pediatrician. During his clinic visit they only draw his blood, do blood pressure, weight check and see if he has a fever. All of this can be done in the pediatricians office. We have it set up where we can go in the back door and straight to the secluded room before clinic starts, Riley will be his first patient.
Riley and Sydney had a wonderful Halloween. I promise to get those pictures up this weekend. The two of them keep me pretty busy so it is hard to take time to update the page. But, no new is good news right now.
November was a little rough. The first week I spent the nights at the hospital with my grandfather. He had a rare blood disorder the he was diagnosed with about seven years ago. He was in the end stages and passed away on November 9. My grandmother is doing well. My father has had a heart problem for about thirty years. He had open heart surgery when he was forty-two. The day of my grandfather's funeral (November 13), my father had a heart attack and died before the funeral. Through all of this, my grandmother is doing well...she is one of the strongest women I know. My aunt, my father's sister, had died almost five years ago of lung cancer. Even though my grandfather, father and aunt are gone, she is as busy as ever doing all kinds of things and all of her six grandchildren and eleven great-grandchildren make sure she is doing fine. So therefor, November was pretty emotional. Thanksgiving was fine, but came way too soon. Now that means that Christmas will be here before we know it.
We have started potty training Sydney...which means that Riley wants too also. I really wish we could as I think it would be easier to get the two done and over with. But as most of the Hurler families know, the meds causes the loose stools. We can't wait until he is done with them so that we can have a little bit of a normal life. Again, we still do not have a date. I checked today and still nothing was scheduled.
Rick has changed positions at Home Depot. He is now the freight team supervisor. He is still getting used to it and trying to get things under control. I am sure things will settle down some after Christmas. As for me, Riley is doing so well that I have returned to work. I had an oportunity to go to a different company and I took it. I am working part time for a few weeks and then next week I will be full time. This way it breaks the kid from me and me from the kids. So far they really havn't had a problem. Riley never usually minds me leaving, but Sydney cries...unless she is busy. I think Sydney is afraid that I am going to leave for a long time again.
Well that is all for now. Please say a special prayer for all our special Hurler babies. I know Morgan is having a hard time and I think Presley is still in the hospital. We miss all of our families and friends in Minneapolis and wish we were there to give them big hugs, but they know we think of them daily.
More this weekend after I put the pictures on.
xoxoxoxo........Rick, Jeanne, Riley Bear & Syssey Girl
Wednesday, October 23, 2002 at 10:45 AM (CDT)
Week of October 21
Day +135
Well, today was clinic day. It is really different than Fairview. I put numbing cream on Riley's port area and cover it with a tagaderm, about thirty minutes before his appointment. We get to clinic at 11:00 a.m. and wait for them to draw blood, today it was about 12:15. This is very hard to keep Riley away from all of the toys because of germs. After Riley has his blood drawn we leave for a few hours, this is so the doctor has the lab results when he sees you. We came back a 2:40, parking is awful. We saw Dr. Selby and his assistant Andrea. He asked a few questions and said everything on his CBC's were fine and the chemistry and CSA results would be back tomorrow. They would call if there was anything out of the ordinary. Oh, by the way, they didn't get the RSV shot approved like I had asked them, since it is a $1,000 to $1,500 per shot for five months. So we had to wait in the clinic for approval and then they didn't even have the med. I told them we would just do the RSV and Flu shot on November 4, Dr. Selby said that was fine.
I have been trying to get in touch with Katie at Fairview to see if maybe we can go back in November when CJ's family would be there. Otherwise we would wait until January. I really want to start getting Riley off of some of his meds as he is starting to not like sitting still...I guess he and Syssey Girl are way to busy!!
Week of October 14
Day +128
No clinic this week, yeah!! Not a whole lot this week other than we had a garage sale on Thursday, Friday and Saturday...Thursday was okay, but it rained the other two days. But we needed to start somewhere to get our garage cleaned out. I bought my house six years ago and have never had a garage sale, not to mention what was accumilated when Rick moved in and over the years. We will wait and have one big one in the spring after we clean out the "huge" building at his house, the rent house.
I am still not sure about what I will do about going back to work. I do know I will wait until after January. Riley is doing so well that I feel comfortable going back to work. Susan said she still wants to keep Riley and Sydney so she can stay home with Hannah...who by the way is so cute and is crawling everywhere! We are so greatfull to have Susan and for her to be so comfortable with our situation. That is why I feel a little bit more at ease about going back to work. I just don't know what to do and how employers will work with me on Riley's doctors appointments. I am doing alot of praying about this and hope I can see what direction I am to go in. Let me know if any of you have any ideas.
Week of October 7
Day +121
It was clinic day and the first time we accessed Riley's port since it's placement last week. Rick, Riley and I got to clinic around 12:00 so they could put the numbing cream on it and then wait for it to work, about thirty minutes. We drew blood and just waited, Riley did okay, a little scared, but okay. Dr. Selby said he was doing fine and we discussed the RSV and Flu shot, not to mention the prescriptions that I needed. Wow, it is a good thing I keep up with his meds and stay on top of them as the doctors are so busy that they hardly remember what meds he is on. Dr. Selby didn't know what RSV was so I had to explain it to him and told him we could go to the pulmonologist and get it if he couldn't get it. He checked and said they would get it for his next appointment.
Riley and Sydney are still working on getting a long. We still have a few fights each day, but nothing too big. Riley sometimes can't express his frustration to Sydney so he tries to bite her. This is hard to explain to him that he can't bite, so he just lays down and starts crying, which only breaks my heart. I know it will get easier. Sydney is still afraid that I am leaving when I am gone too long at the store. I came home one day after being gone for two hours and Rick said she had been crying "momma" for twenty minutes. Sometimes it is hard when Riley is used to me all they time and not sharing me and then Sydney is stuck to me so I don't leave her again. Poor Rick, he hardley gets to spend any time with me, but is happy that Riley and I are home.
HAPPY BIRTHDAY MEMIE!!!!......October 11 (who skipped out of town!)
HAPPY BIRTHDAY DADDY!!!!......October 13
Week of September 30
Day +114
Riley went in on October 1 and got his port placed. He did really well, and I didn't have to yell at any doctors this time. He came home and slept for most of the day. I only gave him three doses of Tylenol 3 over two days as he didn't seem to really need it. We are so amazed by how he bounces back so easily, but I guess that is being a toddler.
I am still having problems getting some prescriptions filled since they have to be mixed, but he pharmacist is working very hard with me to get the meds in and mixed for Riley.
Week of September 23
Day +107
We went to clinic today and they had to draw blood from Riley's little vein...they had to stick him twice. He and I didn't like this. All of his labs look fine, we are just waiting on the bacteria to clear his body before he can has his port placed. If he still has bacteria in his body when they place the port, then the bacteria will just attach itself to the port and then it would need to removed and replaced. Riley seems to be doing fine. We are all trying to adjust to being home again. So many things have changed in our town in six months, not to mention at home.
When we got home, we came home to new paint, inside and out, new carpet, new blinds and a few other things. I am waiting patiently for the dishwasher to be installed. We are so greatful to all that has worked so hard on our home to make it a better place for Riley and to brighten it up. We love you guys so much.
We have not had many visitors since we have been home, Memie says I have scared everyone away with all the rules. I hope I haven't done that, so please come see the little Riley Bear!!!
Week of September 16
Day +100
Well, what a home coming. We left on September 12, Rick, Riley and I in our car and Uncle Randy in the truck. We made really good time, twelve hours. Riley did get car sick several times...by the time we got home he was just in a diaper. We came home to meet Memie, Memaw, Pa Pa Rex, Pa Joiner, Aunt Kim and Uncle Alan. We had balloons and a nice roast dinner. Even though we were tired, we enjoyed everyone being here. Riley was so happy to be in his own home, not to mention the changes that had been made. Every one kinda left early so we could spend some time together and get some rest.
Rick and I went to church on Sunday and Memie stayed with Riley and Sydney. This was so hard for me, I think I cried through the whole service. I missed going to church so much and everyone was so happy to see me and can't wait to see Riley. Later that day after giving Riley his meds, he got really sick and had a fever of 104d...not good. I layed down with him thinking he was just hot but an hour later he still had his fever. After many calls to the hospital to get in touch with the BMT doctor that Dr. Peters set us up with, he sent us to the ER. This was an experience. The longer we waited the better Riley seemed to feel, but unfortunaley there was some bacteria in his blood, so we were admitted around 1:00 a.m.
Well this was not a very good experience. I told Rick that Riley just couldn't wait to check out the hospital and doctors here. We were placed on the hem/oct floor. We put a sign on the door to ask people to wash their hands and keep the door closed...this was a never ending battle for me with everyone. Riley did fine during the stay even though we were there for a week. There was bacteria in his centeral, the repair that was done in July had come unsealed and bacteria got in it and in his body. Greatfully the antibiotics worked. Riley went to surger on Thursday and had is central line removed and an IV placed in his hand, even though we requested the foot. From this I got into an arguement with the anesthesiologist who apoligized many times. It seems that I was complaining to someone each and every day about the care Riley was or wasn't receiving. I think they were probably happy when we left. Now I know why Jody alwasy said to stay on those doctors and nurses butts all the time. This hospital visit was not a pleasant experience and we hope that we don't need to go back. I can't tell you how many times I called Katie and wanted her to see if she could get us back up there. But I know I need to see how this goes and be able to handle it better if or when it happens again.
Riley had many visitors while he was in the hospital...Susan, Justin and Hannah...Laura...Aunt Barbara and Nemia...Uncle Randy...and of course, Daddy, Syssey Girl, Memie and Memaw. It was so nice to be able to have people here at home to visit us in the hospital.
We are truely blessed by God for everything that Riley has been through. Prayer does work and especially in large amounts. We want to thank everyone for all of their prayers and support you have given us during this time. Riley is very amazing and we can't wait for everyone to see hims...probably in the early spring, but feel free to come by our home or call.
xoxoxoxoxo.........
Rick, Jeanne, Riley Bear and Syssey Girl....at home in Del City
Tuesday, September 10, 2002 at 02:40 AM (CDT)
RILEY IS RELEASED TO COME HOME THIS WEEKEND!!!!!!
Monday, September 9, 2002
Day +93
WC: 6,300 Wt: 14.4kg
We can't believe it, we get to come home! We met with Dr. Peters this morning and he said we can come home this weekend. We have to go to clinic on Thursday and can leave after that. We had Riley's day +100 labs drawn today and they will call us in a week or two when they get them back. Dr. Peters said Riley is doing wonderful and is happy with all the progress he is making. We discussed many things during our visit. He asked me what our concerns were, and unfortunately I told him I was now concerned with what kind of life Riley would have. Dr. Peters said he wish he had an answere for me, but he didn't know what to tell me. We know that Riley's life will be different than Sydney's. Riley will have limits, but we as parents and his family will help him overcome them. I am not trying to make this sad, but this is reality. We have gotten Riley through this part of his journey and now we have to move on to the next chapter. Each and every day will be new, different, an experience and unforgettable with Riley. We are so greatful for all that God has given us with Riley and can only hope that things continue to be just as wonderful. We also could not have done this without each and everyone of you supporting Riley and us. It has been a hard six months and Riley did wonderful! He never stops amazing us!
Rick and his brother, Randy, will leave Oklahoma on Thursday morning to drive to Minneapolis, they should be here that evening sometime. Friday, Rick, Riley and I will take our thank you gifts to the hospital and clinic staff and say our good-byes. We will also take our pantry items to the Ronald McDonald House and say good-bye to a few of the families. As much as I want and am ready to come home, this is going to be a sad day. These families and staff have become a part of our lives. Not to mention the impression that Riley has left on their lives. If there is one thing that this journey is teaching us, it is to live like there is no tomorrow and to take one day at a time!
We will then be leaving Minneapolis on Saturday morning and driving back to Oklahoma. We can't wait to come home. We miss Daddy, Syssey Girl, and all of our family and friends so much. We will be back in January and June for check ups. Everything is set with Riley's pediatrician and also a hematology/oncology clinic as a back up.
Below is a list of some of the do's and don'ts for Riley, please respect them as we need to protect Riley from having any problems.
REMEMBER...RILEY HAS NO IMMUNE SYSTEM AND CAN NOT FIGHT OFF INFECTIONS RIGHT NOW!!!
1) Do not visit Riley if you are sick, have been sick in the last week, have a fever or simply don't feel well....bad germs!
2) Always wash your hands when coming in contact with Riley or touching anything he may touch....bad germs! Large amounts of soap and hand sanitizer will be availible in our home for a long time now.
3) No large crowds. We still have to limit where we take him for another three or four months, so please, do not visit our home in large groups. He will not even be able to attend church until February or March. To the doctor and back is just about it.
4) No pets around him for a while.
5) As always...NO SMOKING!! Riley does have asthma and we do not want to bother it, not to mention it is bad for you!
6) Do not let him eat or drink after you and no kissing him on the mouth....bad germs!
We do not mind having visitors, but just remember that he has just had a transplant and is still recovering. Since he does not have an immune system right now, we have to do all we can to protect him and his enviroment. We know each of you love him and you understand that we must enforce these rules.
We can't wait for eveyone to see Riley and how well he is doing. Do not be suprised by his appearence, even though I don't think it has change a whole lot. His hair is no longer blonde, it is a light brown like Syssey Girl's. He has lost his baby face and seems to have gotten the toddler look going on...and the attitude as well. He has gained some weight, but looks great. I will post pictures soon, I promise! I may not update until after we get home, so please be patient with us as we adjust to being home and together. Please sign the guest book. Thank you to everyone for their prayers, gifts, cards, money, time, and words of encouragement....we could not have made it this far without you.
I have some special prayer requests and ask that you visit their websites and sign their guestbook. If you sign, you may want to put that you are related to Riley Bear. Thanks.
Luke - www.caringbridge.org/mi/lukedevolder
Luke's engraftment has dropped some. Please pray that it doesn't drop any more and will only come up. His older brother Nick was his donor.
Morgan - www.caringbridge.org/me/morgan
Morgan and her family just found out that they will need to stay in the area for another 2-3 months. They are from Indiana and really need prayers for Morgan to recover from all of her problems during transplant. Brandon and Jenny have their two other little girls here with them, Alyssa and Madison.
Taylor - www.caringbridge.org/mn/taylormcclung
Jen found out Friday that Taylor lost her engraftment and will need another transplant. Taylor is ten months old and they both need prayers for a successful transplant.
Presley - www.caringbridge.org/ky/presleynash
Presley is a little three year old that we met last week. She will go in on Monday the 9th to start her chemo for a cord blood transplant. She has a milder form of Hurlers. Her mommy is really worried and their family could use prayers too.
Riley - that his test come back 100% engrafted and a good enzyme level....and for him to come home in a couple of weeks.
xoxoxoxoxo....
Jeanne & Riley Bear in Minneapolis (Not for Long)
and
Rick & Syssey Girl in Del City
Saturday, September 07, 2002 at 06:52 PM (CDT)
Sunday, September, 8, 2002
Day +92
Wow! Can you believe that we are almost to day +100. Rick and I can't wait for our appointment tomorrow. So you can imagine how today drug by. I will accept whatever date Dr. Peters wants to give us to leave, as long as it is within two weeks. I will have to remind Riley to tell him "Outta Here". Dr. Peters really thinks his mommy is funny for teaching him that. Not much is going on, but still patiently waiting.
Saturday, September 7, 2002
Day +91
We are just hanging out and playing all day long. Riley is really enjoying coloring and we are still working on which color it which. He can say them and knows that he is saying colors, but does not always get it right. I am still enforcing "Orange" (for OSU) to be his every choice, but for some reason he seems to think "red" (OU) is his only choice. I think Aunt Kim and Uncle Alan have done something to our child in thinking that OU is the only team. Rick & I and most of Rick's side of the family are Oklahoma State University (OSU) fans and for some reason, my side happens to be University of Oklahoma (OU) fans. Riley and Sydney have had Orange and Black in their life since they were born. We even limit the amount of Red and White they have in their clothing. But some how Kim and Alan seem to have come along and brain washed our little Riley. But, since we are home sick for any part of Oklahoma, we watched some of the OU game on t.v. today. I guess it is nice that both OSU and OU won.
Friday, Septmber 6, 2002
Day +90
WC: 4,900 Wt: 14.7
We met with Dr. Grewal today, he hasn't seen him in about five weeks. He said Riley looked really good. Riley is holding his mag at 1.2 so he didn't need to get any at clinic today, although he is still up to 7cc three times a day. Riley's biocarbs were low so he did get that. Again, the potassium, mag and biocarbs are some of the things that the kidney obsorbs but because of the CSA Riley's body just wastes it out and then needs to be replaced. This is no big thing as they say most transplant patients go through this. Dr. Grewal said they would draw Riley's day +100 labs on Monday (+93), we will see Dr. Peters on Monday. Dr. Grewal felt that once we got the RFLP (engraftment test) results back that we would be able to go, but it was up to Dr. Peters. He said he didn't think we would need to wait on the enzyme level, they would just call us. We haven't drecreased any of Riley's meds at this time, so he will still be on the many meds until around December. We will come back in January for our 6 month check up. We also met with the nutritionist today. She checked Riley's calorie intake and said he was around 600-800 on his own. She and Dr. Grewal decided to go ahead and start decreasing his feeds from 500ml a night to 400ml and see how he does. They think we can probably stop them when we get home. I called our pediatrician's office today to confirm that he had spoke to Katie about taking care of Riley. He has and they will give him more information when they release us to go home. Riley did really well in PT today. He stayed so busy doing all kinds of things, Jane was quite impressed. He danced, played on the slide, did some squating, let Jane stretch his hips, climbed and pushed the swing to work on upper body, and he even crawled on his stomack through a tunnel. So when we got home, he was ready for a nap.
Thursday, Septbember 5, 2002
Day +89
WC: 4,800 Wt: 14.9
We went to clinic to check his mag. It is still at 1.2 so we didn't get any today. We didn't do a whole lot. Riley was rather cranky so we didn't go to therapy. He is definatly wanting to do his own thing...I know, he is just being three! I tell myself that everyday, more than once. Rick thinks he has control of Sydney, just wait tell Riley gets there! If Riley doesn't want to do it, he doesn't do it...the same if he wants to do something too. He is so funny though. I really am glad that I am able to spend this time with him. I just wish Syssey Girl was here too. This is such a fun age for both of them as they are becoming more independent each day. Syssey Girl likes to tell everyone "Syssey do it, Syssey do it". Riley, just goes and does it. He has been playing in his Bob The Builder bull doser tunnel thing. It unfolds and he can crawl through it and play in it as it has a couple of entrances and two different play areas. It is only about ten feet long, just long enough for him. His poor knees are so red from crawling on the floor playing in it. He is having a blast in it.
Wednesday, September 4, 2002
Day +88
Not much today. We just hung out and went to therapy. Jane still says he is doing better and better each time. We talked about who I should contact when I get home to come and do his therapies. Jane suggested to see if Sooner Start would still pick him up since he is home bound, if not then the school district should send someone out at least once a week. I will talk to Dr. Fields about it when we get home and get settled, but I don't want to wait to long.
Tuesday, September 3, 2002
Day +87
WC: 5,300 Wt: 14.4
I am so glad to see his weight up. He is doing so good. We didn't need mag today as it was at 1.2. Katie and I decided this would be his low end, if he got below 1.2 then we would give him a dose of mag in the clinic. Katie said we would see Dr. Grewal on Friday and then Dr. Peters on Monday. Dr. Peters would let us know then if we get to leave early. We went to speech today and Andrea is working on getting his tests done for when we leave. This way the therapist at home will know where he is. Andrea is also trying to get him to move his tongue in different ways to streghthen it. He still needs more practice on it. I can work with him on it too with his tooth brush. Oh, we can now brush his teeth with a very soft tooth brush instead of the toothettes, as long as there is no bleeding. He really likes this as he loves to brush his teeth.
I have some special prayer requests and ask that you visit their websites and sign their guestbook. If you sign, you may want to put that you are related to Riley Bear. Thanks.
Luke - www.caringbridge.org/mi/lukedevolder
Luke's engraftment has dropped some. Please pray that it doesn't drop any more and will only come up. His older brother Nick was his donor.
Morgan - www.caringbridge.org/me/morgan
Morgan and her family just found out that they will need to stay in the area for another 2-3 months. They are from Indiana and really need prayers for Morgan to recover from all of her problems during transplant. Brandon and Jenny have their two other little girls here with them, Alyssa and Madison.
Taylor - www.caringbridge.org/mn/taylormcclung
Jen found out Friday that Taylor lost her engraftment and will need another transplant. Taylor is ten months old and they both need prayers for a successful transplant.
Presley - www.caringbridge.org/ky/presleynash
Presley is a little three year old that we met last week. She will go in on Monday the 9th to start her chemo for a cord blood transplant. She has a milder form of Hurlers. Her mommy is really worried and their family could use prayers too.
Riley - that his test come back 100% engrafted and a good enzyme level....and for him to come home in a couple of weeks.
Thank you for always praying for us and the once I include on our page. After being away from your own family and friends for so long, you make new ones and they touch you life forever. When we leave, I will miss them so much. These families are very special and have such beautiful children.
xoxoxoxox.....
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Friday, August 30, 2002 at 06:07 PM (CDT)
Monday, September 2, 2002
Day +86
Well, two weeks from today will be day +100! I can't believe it is almost here. Well, so much for Riley's eating today. All he ate was a couple of bites of scrambled eggs, some cheese for lunch and a chicken nugget and fries for dinner. He is drinking quite a bit though. Oh, the most suprising thing happened tonight. We were in the living room and he was leaning in front of me while I was sitting on the couch and he said "Mommie...potty". I asked him "pottty?" He held his diaper and said "potty" (Like do I need to tell you a hundrend times or what!) So we went to all the way down the hall saying potty...potty. We got to the bathroom and took his diaper off and I put him on the big potty. This scared him some, but he did have a little bit of a stool in it. We clapped and said yeah for ten minutes. I got his potty chair out and showed it to him and told him that it was his potty chair. Later when he said potty again, we went and put him on his chair, he wasn't too sure about it, but he seems to have a little interest in it. Every time I go to the bathroom he follows me in there (mom's have no privacy, even when it comes to the bathroom) I tell him mommy potty and he repeats me. Maybe this has done some good. I really have a feeling when I get home, I am going to have two little people in the bathroom with me going potty! Well that is it for now. Hope all had a good and safe weekend. More in a couple days.
Sunday, September 1, 2002
Day +85
WC: 5,700 Wt: 14.1kg
We went to clinic today. Riley's weight went up some, yeah!! His mag was 1.1 so we got an IV dose. Dr. Ramsey said to go ahead and try increasing his oral mag from 18ml to 21ml, only if it doesn't cause too much loose stools. He was so funny in the transfussion room. He had head phones on and watchin cartoons. They were singing and so was he (in his own way). Everyone was just commenting on how happy and active he is. We left clinic and came back to the apartment and watch some movies. We took a long nap as I had a very bad headache. We later went to Wendy's and I got Riley some chicken strips and fries. He ate almost two of them and many fries. I was so happy. We will see how he does tomorrow. Other than that, we had a pretty boring day. We are both so tired of being in this apartment. Hopefully it won't be too much longer and we will be home playing with Syssey Girl and Daddy!!!
Saturday, August 31, 2002
Day +84
We just hung out here at the apartment. The streets are quite busy with all the students returning. We are across from the dorms, so the streets have been packed with parents unloading their children. I bet some of those parents never thought that this day would come to bring their child to college. That seems so far for us right now, but I bet it will be here before we know it! Riley is doing okay, still not eating too much...a little here and there. I even take him to bet something to eat once a day to see if that would do the trick, but I guess he isn't interested in too much food right now. The tube feedings are going fine. I really do hope that this doesn't delay him being released to come home in a couple of weeks. We so need to be home.
Friday, August 30, 2002
Day +83
Wt: 13.9 kg
We went to clinic this morning to check on Riley's potassium, mag and biocarbs. They were all up and in a good range. I told them I was able to get 250ml of formula through the NJ last night. I went slow so he wouldn't get sick, they said that was fine and to continue to slowly increase it to 500ml between 8-12 hours during the night. Dr. Baker seems to think that Riley might have had a little stomack bug that has caused this and Riley just never got really sick. He is not sure about the eating, but just that hopefully it will not last long. As long as he gets something in, whether it be actuall food or the formula, it will help the potassium, mag, and biocarbs hold themselves. We will need to go back on Sunday and have his labs drawn so they can check his levels again. Also, his CSA was 498...way way too high. They say that anything over 500 can be dangerous. Therefore, we held todays doses and have decreased him to .50 three times a day. We didn't go to therapy today as Riley was sleeping. Our carepartner came by with a friend for a little while. Riley really enjoyed there visit. He is such a flurt. We have no idea what Riley's new eating habits will do him going home, we hope that he won't be delayed too long, but you never know. We were able to talk to Stacy (mom) and Sarah (aunt) about Presley. She is soo cute!! Presley has are rare genetic storage disease that is not as severe as Hurlers, and I forgot the name of it. She is almost four years old and they are from Kentucky. She has the prettiest eyes and a sweet smile. They will admit on the 9th and do an umbilical cord transplant on the 20th. Please pray for them and I will post their web site when I make sure I have the right one.
Thursday, August 29, 2002
Day +82
WC: 5,400 Wt: 13.9kg
Well, clinic was't too fun today. Riley's potasium, mag and biocarbs were all out of wack today. Amy said it had nothing to do with not getting the IV mag on Monday. She thinks that because Riley isn't swollowing his food, that these electrolytes don't stay in his system, not to mention the CSA doesn't help either. We were in the transfusion room for two hours getting potassium, mag and biocarbs. We turned the light off and Riley and I took a little nap in the chair. Before this, we met with the diatician. She recommended trying the formula at night for a while, just to get his body to hold these electrolytes and maybe it would incourage him to eat and swollow his food. I am also to record his drinking and eating intake and we will look at it on Tuesday. We also had an x-ray to check the placement of Riley's NJ tube, he seems to be a little gaggy like it could be out of place. Thankfully, it was okay. They really didn't seem too alarmed by all of Riley's low electrolytes, we will just see how it goes over the next couple weeks. I talked to his speech therapist, Andrea to see if she thinks he has a problem chewing. She watched him eat a couple of cookies, which he did swollow. She didn't see anything different. She gave me some excersises to show Riley to do to help strenghthen his tongue. We came home and patiently waited on home health care to bring his pump. I would have to say, this was not a good day. But at least Riley is doing well in the other lab areas and isn't needing blood products all the time. I pray that this eating issue of his is just a toddler thing and will soon pass.
Wednesday, August 28, 2002
Day +81
We went with Andrea to Sam's today. This was good to get Riley out. We kept his mask on and away from people. Sam's is pretty big and wasn't very busy. Although, Riley really isn't much of a shopper. He kept wanting to leave. We really didn't do too much of anything else. It was pretty much a blah day. I am sure tomorrow will show some kind of excitement.
xoxoxoxoxox.......
Jeanne & Riley Bear in Minneapolis (which is cooling off)
and
Rick and Syssey Girl in Del City (which is still hot)
Tuesday, August 27, 2002 at 11:50 PM (CDT)
Tuesday, August 27, 2002
Day +80
We had to cancel our speech and OT today since we had to go for Riley's chest x-ray and appointment with the pulmonologist(lung doctor). He said Riley's lungs look very good and the area they were watching has cleared up. He didn't hear any wheezing or crackeling in his lungs either. He did say that in his upper lobes, there were some scarring from when he was in NICU, after he was born, from the ventilator. He said that it should clear up as he grows, but wouldn't really affect him unless he was really active as that is when you use your upper lobes. Other than that, he said to keep doing what we are doing. He does want to see him at his one year check up and possibly at his six month check up. He did say that since he has a new immune system, his asthma may go away. It only depends on the what the donor has. But we will wait and see. Oh, Katie called and said Riley's CSA level was high and wanted to decrease it...imagine that. Now we will just see what his mag will be on Thursday.
Monday, August 26, 2002
Day +79
WC: 6,500 Wt: 14 kg
Clinic was finally shorter than it had been the last couple of times we had gone. We were still there for two hours. Riley's counts are still doing good on their own. He has not needed any growth factor meds, blood or platelets since before he got out of the hospital. The only IV meds he has gotten in clinic were potassium and magnesium. He needed mag today, but I told Katie I didn't want him to get it as it doesn't seem to do any good. After a long talk, she agreed to lower his base line on the mag from 1.3 to 1.2. This means that when his mag level goes below 1.2 he will get it through his IV that day. I told her that I felt that his mag would just be low until he comes off of some of the CSA. We discussed coming home and what we needed to do. She said we didn't need to do anything that she was going to contact our pediatrician and see how he wants to handle things. We have just three more weeks until day +100. We are still hopeing for the week of September 9. Katie looked at the dry skin on his knees and elbows. She said it was nothing but dry skin and to just put lotion on it. We had a nice time at PT, for some reason it is taking Riley a while to get into it. He has been that way for about a week. I wonder if he is getting tired of being here and may be a little depressed. I sure hope the next couple of weeks go by fast. He is still chewing on his food and then leaving it in his mouth for an hour or so. He will then come and spit it out in my hand. I am trying to teach him to put it in the trash himself. If he is not going to swollow it, then he needs to throw it away himself. I know his weight is down, but he must be getting some nutrient from it as he still has energy and functions. Katie said they are not concerned, it is just a "toddler thing". I hope it passes soon, as I am tired of find food all over the apartment.
Sunday, August 25, 2002
Day +78
We just hung out. I took Riley to get McDonald's for dinner and then we drove around for a while. We just needed a break from the apartment. I am still trying to get things together for when we leave. I have gone through all of the insurance and hospital billing and have put that in order. WOW...I am so glad we have insurance. We still have some things to pay, but having a transplant is very expensive, not to mention...two! I really feel for those who do not have insurance that go through this. I have some ideas of projects that I want to work on when I get home or how to help others in this position. I am open to anyone who has ideas and suggestions or just want to see what they can do to help. We still have many surgeries for Riley and the added expense, so we, too, will still need financial help. I already have ideas for this too! I guess you could say I have had a lot of time to think of things to do. I am thankful for God to give me these ideas, I only hope I can make them work.
Saturday, August 24, 2002
Day +77
Well, Kathy, you have a job to do when we get home. You will need to straighten up my hair cut job on Riley. Maybe there was a reason I went to nail tech school and not cosmetology. I think I did okay, but it still needs work. I was able to cut off all of the long pieces that he didn't loose from his first transplant. I also tried to trim it up around his ears. This made him look so much older and not a little baby any more. He was already loosing his baby look, but after the transplants and weight gain and weight loss, he looks so good. I was able to talk to Jody in Kansas tonight. She seems to be doing well. It was a nice talk, I really miss her. One good thing is that she only lives about four hours away and would be able to visit easy. Their daughter Alexis lost her battle with Hurlers in January this year. She would have been three in October. Jody is so amazing and has set a path for us other Hurler mom's, she is truely and inspiration...whether she wants to believe or not. We love you Jody! We will be home soon so you can come visit...who know, I may leave Rick on a Saturday and just come see you myself!
Friday, August 23, 2002
Day +76
Not a whole lot here. I worked on going through all of Riley's toys...this is a challenge when he is awake. I think I created a computer monster. We have some Pooh Bear software for Riley and Sydney. Riley doesn't like it when I am on the computer, but since he has been using the computer in speech, he thinks he needs to use ours. So now he walks by the computer and says "Pooh, play". So he plays for a while. It helps him with his numbers, letters, shapes, colors and memory. He really likes it. We can play DVDs on the computer and I only have one for Riley here with me. It is Peter Pan. When we first got it, he wasn't too interested in it. But now that he can use the computer, he will watch it two or three times a day. He is so cute...he sits there and acts as though he is flying and he sings with them(in his own way). He really likes it and enjoys it!
Thursday, August 22, 2002
Day +75
WC: 5,200 Wt: 14.5 kg
Well it was another long day in clinic. Riley had to get mag again! I am really getting tired of spending so much time here as all we do is wait. Oh, well, just a few more weeks. Riley did really well in therapy today. Andrea is still working on his exit report to speech. We think that he does not know how to make the tip of his tongue go up and that he may not be using all of his tongue muscles. She gave me some excersise to encourage him to move his tongue more. Maybe it would help witht he food storage in his mouth. Rebecca said he is doing well in OT. He is learning how to use scissors. She also showed me some things to do with wax paper. He can tear it and that works with his disecption of pulling and pushing. Then he can crinkle the wax paper up as this will help him use different muscles in his hands. Wow, what a day.
Wednesday, August 21, 2002 at 05:19 PM (CDT)
Monday, August 12, 2002
Day + 65
WC: 4,400 Wt: 15kg
Once again, we did not get to see the doctor. We were scheduled to, but someone moved our appointment and put us with Katie. She said everything was fine, except that he needed magnesium, again. I know I should be thankful that he has not needed any blood products, only potassium and magnesium. We don’t have our test results back, but they should have something on Thursday. We can’t wait until Friday…Memaw, Syssey and hopefully Aunt Cindy will be here.
Tuesday, August 13, 2002
Day +66
Not a whole lot is going on here. I am trying to get Riley to play on his own, with out having to be with me all the time. Once we get home, I hope Sydney will keep him busy. He has always done well with keeping himself occupied, but since we have been here, he has been by my side almost all the time. But that is okay.
Wednesday, August 14, 2002
Day +67
Today was quite sad for me. I really wish I was able to be at the funeral, but I need to be here with Riley. I was so tempted to leave on Monday after Clinic and drive to Oklahoma, but I knew that wouldn’t be right, and Dr. P would never let me here the end of it if something went wrong. Anyway, we just hung out and went to PT. Riley is so sweet, he gave me lots of hugs and kisses today. He wakes up every morning and gives me this wonderful smile. He always has hugs and kisses too.
Thursday, August 15, 2002
Day +68
WC: 4,900 Wt: 14.7 kg
Clinic was fine today. Katie gave us the preliminary results of his test. Riley is still 100% engrafted and his enzyme level is 88.2. These are all great numbers. Riley is doing so well. We had to get magnesium today. I hope this levels out soon. We went back to the apartment and took a nap. We went to speech today and then left early to go and pick up Morgan’s Aunt Kelly at the air port. She is here to help Brandon while Jenny is back home at work for a few days. We took Jenny to the air port this morning. I told them I didn’t mind doing it as there was no reason for Brandon to get all three girls out and go to the air port. Besides, Riley enjoys going…anywhere!
Friday, August 16, 2002
Day +69
Rhonda came over today to sit with Riley while I got out. She took him to physical therapy, which later I found out, he didn’t really enjoy. Rhonda thinks he was tired and wanted to go back to sleep. I went to get my hair cut and took the birthday thank you notes up to the unit. I had been avoiding the unit so that we wouldn’t be admitted. Every time I am in the hospital, Riley is with me and I don’t want to take up there. But he will go when we leave because he has to tell all those wonderful nurses and aides “Outta Here!” I also took the resident Chris his picture of he and Riley. Riley is wearing his OSU shorts and Chris is wearing his Nebraska shirt. I told him and another resident, Paula from April transplant, that Riley is doing well and we are getting closer to day +100. They were so happy. I will have to make sure we find them before we leave so Riley can tell them bye. Memie, Memaw, and Syssey got here around 7:00 p.m. Riley and Sydney just played. The first thing Syssey did was “momma, hold you” and held her arms up. She gave me a big hug and kiss, then didn’t want me to put her down. We were all up until 1:00 a.m.
Saturday, August 17, 2002
Day +70
Oh, what a day. These two are so busy. Syssey is really working Riley hard. He is even trying to do some of the things she is doing, like climb up on the bar stool. He even tried later to climb up on the kitchen drawer. What a dare devil he is becoming! Syssey did get into trouble. She was coloring on the chalk board and then decided it wasn’t enough. She colored the t.v. and stand, chairs and the inside of her ear. So, she got to clean it up, not just once but twice. I guess she didn’t learn well enough the first time. Oh, well, at least it cleans up. Rheta, Sydney and I went to Khols and got Riley some clothes. He was needing some long pants. It is sometimes chilly here. They don’t ease into fall, it just happens. We ordered pizza for dinner. Riley calls it “poppy” then Syssey started calling it that. They are so cute together, I can’t wait for us to be a family again. I took Morgan’s Aunt Kelly to the airport and then waited to pick up Jenny. Kelly was sad to leave and Jenny was happy to be back. Please visit Morgan’s web page at www.caringbridge.com/me/morgan.
Sunday, August 18, 2002
Day +71
Memie, Sydney, and I went to Target. We got the film developed and they turned out cute. I will post new pictures next weekend so everyone will have a chance to see the ones that are up right now. Other than that, we didn’t do much. Rheta stayed with Riley and they took a nap. I fixed dinner and Memie, Memaw and Sydney left around 7:30 p.m. to go home. Riley sure did have fun with Sydney. Although, we are going to need to work on “sharing” otherwise there will be a lot of toys put away if they can’t share. Before we came up here, there was just a little problem with sharing, but now it is worse. They have been separated for so long that they will even need to learn how to share Mommie, Daddy, Memie, Memaw, Pa Pas and Aunts and Uncles. I know, just another little bump in the road. We are grateful to have this bump and for Riley to have done so well in recovering. Thank you for all of your prayers!
Monday, August 19, 2002
Day +72
WC: 6,100 Wt: 14.4kg
This was the worse day we have ever had in clinic. We got there at 9:40 and didn't get to a room until 10:10. Then a Fellow BMT doctor came in about 10:30 and just asked some questions and checked Riley out. She said Dr. Peters would be in in a few minutes. Well, after walking around the clinic area, getting crackers and water, Dr. Peters came in at 11:40. He said Riley was doing fine and didn't see where they could decrease any of his meds yet. He is going to contact our pediatrician, Dr. Fields, and make sure he and the staff can take care of Riley's special needs. Dr. P said we would need to leave Riley's central line in until his six month check up. He thinks it would be easier on Riley to do his weekly blood draws from it as apposed to the port that would is under the skin and would have to be accessed each time. I told him that was fine, I am used to taking care of it...after all, he has had it in since January. Dr. P noticed that Riley's elbows and knees were a little pinker, he will watch it to make sure it doesn't turn into graft versus host disease. I told him it could be from him and Sydney playing on the floor and climbing on the furniture all weekend. He just laughed. I told him that Sydney wore him out and asked how it would be when we got home. He said probably about like that, but Riley will know when he needs to rest. Dr. P was happy with Riley’s day +60 tests. He said that 88.2 is the highest enzyme level they have ever seen. Our day +100 is Monday, September 16, 2002. Dr. P said he would see if Riley could leave the week of September 9. Riley would need to have his chest X-ray done the week of Labor Day and see Dr. Regleman, pulomonologist, before he saw Dr. P on the 9th. I am not getting excited about his, because after being here for so long, there will be some test not ran or some test results that they need before Riley can leave. We will return in December for his six month exam, at this time, they will take out his central line and repair his hernia. We will also come back at nine months and one year. Then he will come back every June for his one year exam or when ever he needs surgery. Riley had to get magnesium today and then we rushed off to physical therapy.
Tuesday, August 20, 2002
Day +73
Riley had speech and OT today. He did really well in both, once we got him to quit exploring in the new room we were in. He is learning how to use different hand musceles by cutting with scissors, tearing paper and crumpling up paper. He was doing really well with threading the froggy beads on the strings. He can say all of his therapist names...Jane is physical, Andrea is speech and Becca (Rebecca) is occupational. When we get to the waiting area he says one of their names and then play. Little does he know, this isn't playing, but that is okay, as long as he does what he needs to do in session. He really enjoys all of them and we are going to miss them when we leave. I wonder if they would fit in a box so we can pack them up and take them home. For some reason, I don't think their families would like it.
Wednesday, August 21, 2002
Day +74
Riley and I just pretty much hung out today. I am working the thank you cards for the nurses and aides in the unit. I am hoping to take them to them next week. Other than that, it is some what rainy and we can't wait to get home. Less than four weeks away, Yea!!!
xoxoxox.....
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
P.S. Happy Belated Birthday to Uncle Paul in Texas, August 20. Wuv you and Miss you lots!!!! Whoa Ya...from Syssey Girl.
Saturday, August 10, 2002 at 01:16 PM (CDT)
Tuesday, August 6, 2002
Day +59
Nothing much today. We went to therapies and Riley did really well. I was impressed. We are still working on his number, one to ten. He has been waling around the apartment saying "five, three, six, seven". I am so glad he is saying so much more and he is getting better at his two words and expressing what he wants, instead of saying "here" and pointing. I am working on him saying "want" and then the object and then putting the words together, with "please" at the end of it. He has finally shown an interest in books. I am now able to get him to sit still long enough to listen to me read a short book without him flipping through the pages and getting down. I think this will help him with his speech. He is still doing well in OT, although he sometimes gets in there and wants to do his own thing. He is definately a three year old..."it has to be his idea"!!
Wednesday, August 7, 2002
Day +60
Yeah, Riley is now day +60!!! Only forty to go before we are allowed to leave. We didn't do a whole lot today. We went to therapy and Riley worked his little legs off. He was so tired when we got home. Jane is really good with him and they really like each other. She thinks he is getting better, but the shoe thing will just take a while. We hope when we get home, we find a physical therapist as good as her. Speaking of home, we may have some visitors next week from home, not sure, but we hope. It has been four weeks since any one has come to stay for several days. But is sure was nice to have Bart, Leah, Kaytie and Jacob visit us last week. They are such a wonderful and loving family.
Thursday, August 8, 2002
Day +61 WC: 4,900 Wt: 14.9kg
Once again, Riley needed magnesium in clinic today and we upped his oral mag and decreased his CSA again to .60 three times a day. Riley is still doing fine. We got our Day +100 letter from the clinic. It is set for Monday, September 16. Riley will have a chest x-ray and labs. If all goes well, maybe this appointment will be moved up earlier. We didn't make it to our therapies today, Riley was tired so we took a nap. He didn't seem to sleep well last night. We just hung out at the apartment. We have plans to go to the zoo tomorrow with one of the aides. I asked Katie if it was okay and she wasn't sure, she said she would check with Dr. Peters and call me. We later got a call from Katie and it was okay for us to go to the zoo, as long as we didn't go to the petting area and Riley kept his mask on and the cover on the stoller. Yeah, we can't wait. Oh, the test results are not back yet, maybe on Monday...but who knows, it could be Thursday. But please continue to pray that all is still well for Riley...100% engrafted and a good enzyme level.
Friday, August 9, 2002
Day +62
When Riley got up this morning, I asked him what we were going to do today. He said "Andrea". I said yes, we are going to go to the zoo with Andrea! Oh, what a day! We had so much fun geting out. Andrea, Riley and I were able to go to the zoo!! We got there around 11:30 and ate and then we were off to see the animals. We went through the buildings first. We aren't quite sure what Riley thought because some of the animals were are to find (among all of the trees and rocks and things). He seemed to be more interested in watching the other people and children more than the animals. Riley did so good at keeping his mask on, he didn't try to take it off not even once! He usually has it off half way home from clinic visits. When we went outside he fell asleep for about an hour before we left at 3:00. We had a really nice time with Andrea and we took as many pictures as we could and video taped. I think Riley was really getting tired of seeing both of us with video cameras. As they say, save the best for last(we did this right before we left the zoo)...I think the best thing he liked was the dolphine water fountain that was out front of the Minnesota Zoo. It was just his size...he could sit on the edge of it, but didn't put his hands in the water. He sat there and watched the water, he loves water. He threw money in and just laughed. It was reallly hard to get him to go then. Andrea and I thought we could have saved our money and just let him sit there all day! I can't wait to get the film back for everyone to see. Riley came home and took a nap. Andrea came over later and we watched Sydney's 2nd Birthday on tape. I had not been able to watch it until today, it broke my heart not to be there. But Rick did an awsome job and getting eveything ready and making her birthday so special. She was so cute when Rick would tell her to say hi to mommie and Riley. On the camera you see her just look around for us. Then we had a special message from everyone, thank you guys. We miss you too! We will be home soon!
Saturday, August 10, 2002
Day +63
We are just hanging out. Nothing is planned. Rick said he has a big list of things to do to the house before we get home. He is going to paint the outside, clean up the back yard and front yard, trim trees, get a dishwasher put in among many other things...like really clean the inside of the house and check on a new central heat and air system that Riley will benefit from. If anyone wants to help, please call him or go by there as you know he will not ask for help.
Sunday, August 11, 2002
Day +64
I just wanted to let some of you know that today is a sad day for my mom's family. My grandmother passed away early this morning. We know she is with God and at peace and that it was her time, but the pain is there of loosing someone you care so much about. Arrangements have been set for Wednesday, August 14 in Hugo, Oklahoma and graveside in Boswell, Oklahoma. My grandfather passed away about twenty-five years ago. Grandma lived alone in Boswell until about ten years ago were she went to a nursing home in Justin, Texas near my two aunts who would help take care of her. Grandma leaves behind, their seven children and their spouses, eighteen grandchildren, twenty-five great grandchildren and one on the way. Grandma was a wonderful, strong and loving person. We will miss her very much and we will always have her in our heart. I am sad that I will not be able to attend to say my final good-bye, but Grandma would want me to take care of Riley and be with him. Please pray for our family as they travel during this time and ask God to help ease their pain and give them comfort. Thank you and God Bless!
xoxoxoox........
Jeanne & Riley in Minneapolis
and
Rick & Syssey Girl in Del City
Tuesday, August 06, 2002 at 12:00 AM (CDT)
Monday, August 5, 2002
Day +58 WC: 6,100 Wt: 15.4 kg
We only got to see Dr. Grewal for a few minutes, he was really booked. Katie apoligized and said that we could see him another day if we wanted. I told her not to worry about it, Riley is doing fine and I didn't have any questions for him right now any way. The only thing they did different was draw blood to check his enzyme level and his engraftment percent. These will most likely be back next week, but please pray that all is still okay. Katie is so pleased with how well Riley is doing, along with everyone else. I hope they have found a descent level of chemo and radiation to give to these patients so they don't have too many problems to face during transplant. Luke and Taylor both received the same regimen as Riley for chemo and radiation. As far as I know, neither one has really had any problems. We had therapy today and Riley still plays really hard during physical therapy. We are working on him wearing his shoes on the wrong feet. We decided to do this last Wednesday. It doesn't seem to bother him. Riley's feet turn out and the ortho therapist thought this would be the easiest way to help Riley. The other way would be to make molds to fit him for braces that he may not need. So please, when you see him, don't think his mommy is loosing it by putting his shoes on the wrong feet. Right Kristen!!! Elliot is doing the same thing. Riley and I hung out the rest of the day. We are suppose to have some visitors in a few weeks and then hopefully go home a few weeks after that. We can't wait! We miss everyone so much!
Sunday, August 4, 2002
Day +57
Rhonda came by this afternoon and I went to Target, Old Navy, Office Max and the grocery store. I found some shorts for Riley and some shorts for Rick at Old Navy. I had to get a hole punch and dividers so I can get the medical bills and EOBs all matched up so I know what we can pay on and what the insurance needs to pay. This ought to be fun! I bought Sydney an Elmo tape, I hope she likes it. When I got back, Riley was resting. Riley and I laid down and took a nap as we were both still tired from last night. We didn't do much the rest of the day. Tomorrow is Riley's Day +60 tests, hope all goes well.
Saturday, August 3, 2002
Day +56
We went to the clinic to have Riley's blood drawn for CSA level. We probably won't know what it was until Monday since this one takes all day to process. Riley has just been playing. We got our package from daddy. It has Syssey birthday pictures in it and her video. Her pictures are so cute. We can't wait to watch her video, I am not ready to cry yet. We had quite an evening. I was picking things up and we had a thunder storm. About 6:00 p.m. the electriciy went out. I thought this would be no problem that it would be back on in a few hours. Well, come to find out, it would take them until the next morning!! I couldn't believe that. We did fine until 11:00 when Riley decided he wanted to watch a movie, he just didn't understand. I had the windows open in the living room and we were going to sleep on the couch. I started getting concerned about Riley's asthma with it getting warm in the apartment. Riley usually starts to have breathing problems when the weather changes and with it being cool and then hot in the apartment, I didn't want him to get sick. I called the BMT Fellow and he said he thought Riley would be fine, but if he did start having problems, I could take him to the ER and have them give him a nebulizer treatment. I felt better then. Oh, the fire detector kept going off in the living room, so that made it hard to sleep. I tried to make it stop, but I really couldn't reach it. I found out later it had something to do with the electrical outage. We finally got electricity at 4:30 a.m. Riley and I went to bed and slept late.
Friday, August 2, 2002
Day +55
We had physical therapy today, but didn't go. UPS tried to deliver Riley's meds yesterday and we weren't here, so they will come today. When they got here, there were two big boxes. This is suppose to last three months. It is a good thing they got here as I was starting to run out of some of his meds. I will try to take a picture of all of his meds that he takes to give you an idea of how much he has to take. I am so glad we have the NJ tube in, I can't imagine trying to get him to take these meds orally by myself, but I am sure I would if I had to. Riley was in a much better mood today. He was just simply grumpy and tired yesterday, which after all he has been through, I am suprised that was the only bad he has really had. If you don't count the ten or twelve days he was on steroids in the hospital and was flat out MEAN!! He really likes to say that word and Rick likes to get him to say it on the phone, it is really funny. I can't wait for everyone to see him when he gets home, although we will have to limit it to a few people at a time. As it gets closer to us going home, I will post a list of our Do's and Don'ts for Riley. It will be a change for Rick and Syssey when we get home as me and Riley are pretty much used to it. There are some things on the list you would never have thought of, but they make since. Like, don't play in potted plants or he can't go in lake water and he can't be in a room while it is being cleaned and has to wait thirty minutes before returning to that room. Our major things for visitors will be...if you are sick to not visit, don't let Riley drink or eat after you and to always wash you hands. Sydney likes that one. She knew when she went in the hospital room to see Riley, she would say "Hands, Hands!" so she could was her hands.
Thursday, August 1, 2002
Day +54 WC: 6,200 Wt: 15.2kg
Just another day in clinic. All seems to continue to go well, except Riley needed more magnesium. We didn't go to therapy today as Riley was tired and in a bad mood. I don't think he wanted to get up this morning, so I brought him home after clinic and let him go back to sleep. We went back for magnesium and Katie decided to decrease his CSA med to .65 three times a day. The CSA causes their potassium and magnesium to go down, therefore they need to have it supplemented. Riley's CSA level was 478 and they like it between 200-400 but no hirer than 500. She thinks that by decreasing the CSA it will allow his magnesium to come up. We will go in Saturday and check his CSA level. One of the aides came by to see Riley. Adiyam is really good with him and he likes playing with her. We miss the seeing the nurses and aides on the unit, but havn't dared to visit them. I am going to take them their thank you notes and some goodies in a couple weeks. If there is something any of you have questions about on Riley's recovery, please call me or e-mail or write me. I hope I am giving you guys enough information to not confuse you, but to give you an idea of what he is doing and his progress.
Wednesday, July 31, 2002
Day +53
We had some visitors today, which was great! A cousin of Rick's dad's was in town for a few days. His name is Bart, his wife Deliliah was here for a conference. Bart and their children, Leah, Kaytie and Jacob brought us some gift baskets from our church at home. Our baskets had many gifts for Riley and I. Riley got many coloring books and crayons and makers and books to read along with some stuffed animals and cookies and lots of prayers and love!! I got some new magazines and books and coffee and lots of prayers and love too!! It was very nice of our church family to do this for us, we are so lucky to have such a small and close church family...just the way Rick and I like it. I had never met Bart and his family, unfortunately, I didn't get to meet Deliliah as she was in a meeting. We had a nice visit and the girls and Jacob played with Riley and his new gifts. Bart said he was amazed at how well Riley was getting around, he didn't expect to see him so active after having two transplants. That just shows us how strong he is, not to mentioned being a determined three year old. I wish that they could have stayed longer, but they were going to eat dinner and the girls were going to plan their day at The Mall of America. It was nice to have visitors and we hope to see them when we get home. Thank you guys for stopping by, you have a wonderful family! Hope you had a nice vacation!
xoxoxo........
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
Wednesday, July 31, 2002 at 12:36 AM (CDT)
Friday, July 26, 2002
Day +48
We stayed here all day since our therapist was out. It rained, just like it did yesterday! We played and watched a couple of movies, and since it rained it made nap time very nice. Riley's little body is still heeling and sometimes needs extra rest, so we take a really good nap once a day. Then he is up and at it again for about six hours. Gee, to have his energy.
Saturday, July 27, 2002
Day +49
Pretty much nothing today. It is rainy, again. Then when it stops, it gets hot! We are still just hanging out and waiting for our next fifty-one days. We miss everyone so much. It is nice to get phone calls, although, Riley sometimes doesn't like me being on the phone. Since it has been just he and I, he thinks he must have all of my attention. Wow, I hope we don't have a problem when we go home to Sydney and Daddy!
Sunday, July 28, 2002
Day +50
Well, we made it to day +50!! Yeah!! Andrea came and sat with Riley this afternoon while I went to the grocery store and Target. Our care partner had a cold and we just didn't want to take the chance of Riley getting. Riley and I watched movies and played. It rained and then in the evening there were tornado warnings in areas to the east of us. Nothing much. I have been working with Riley on counting to ten, he is getting better. We are also working on climbing onto the bed. He can climb on the couch and recliner, but not the bed...yet.
Monday, July 29, 2002
Day +51
WC: 5,400 Wt: 15.6
Well, you should have seen clinic today. When I got there, Luke was already in the exam room and then Morgan got there and later Taylor showed up. We got a picture of Riley, Luke and Branden holding Morgan. I hope it turns out. Out of the four of the Hurler babies, Riley is the only one not at the Ronald McDonald House, we are in the apartments next door.
Our visit went fine with Dr. Peters. Rick asked me to see when Riley would have an immune system. Dr. P said that while Riley takes the CSA he will not have one. Then it will take about a month after he stops the CSA to start developing one. From there, it will be about a year for him to have a reasonable immune system. Riley will have to take the CSA for about six to nine months after transplant. Dr. P still thinks Riley is doing fine. We will have our +60 check up on Monday. They will do several different lab tests as well as recheck his enzyme level and his engraftment. These results will still take about a week or two to come back. We left the clinic with out lab results being process, since they were so busy with other patients. Dr. P called me at the apartment and asked for us to come back in so Riley could get some magnezium, also increased his oral dose. Dr. P said all of Riley's other labs were fine, his platelet count is 177,000. Dr. P said this was hirer than his! We went to physical therapy and worked with Jane. Jane said that it seems that Riley's tendons are loosening, but now she is concerned with how his ankle and heel conect. She wants the orthopedic to look at it on Wednesday. Riley worked really hard today since we increased PT to forty-five minutes. It is good for him though. We then went to the clinic and got magnesium. Taylor was there to get platelets. She is really cute. Riley and I then came home and took a nap and hung out the rest of the evening.
Tuesday, July 30, 2002
Day +52
Riley and I slept late. He has been tossing and turning during the night. I woke up the other morning and found little feet next to my head. I had to look down and see if it was Sydney sleeping with me or Riley. Sydney is an "all over the bed" sleeper and Riley is a "pretty much stay still" sleeper. Riley and I walked to therapy today. Boy, was it ever hot today. It has rained for several days and that has made it hot around here. Riley did fine in therapy. We had Nikki for speech since Andrea is off this week. Nikki said she thinks Riley is improving on his two word phrases. We let Nikkie listen to Riley help me count to ten. She was impressed. Riley still has to hear you say the number, and the more he says the number, the clearer it gets. Megan worked with him in occupational therapy while Rebecca was out. She too thinks he is making progress. Although, when Riley is done with something, he pretty well is done. The therapist try to get him to do the activity one more time, but it takes a lot of bribing. We came back, ate and watched a movie before taking a nap. We talked to daddy and Sydney when she was opening the package we sent her. Rick said she really did like her new Elmo toys. We miss them so much, but we are still praying that Riley continues to do well so we can leave in about seven weeks.
xoxoxoxo........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Friday, July 26, 2002 at 12:08 AM (CDT)
Friday, July 19, 2002
Day +41
We went to occupational therapy today. Rebecca thinks Riley is doing great with reaching and some of his fine motor skills. She wants to see him twice a week for thirty minutes. Well, these therapies and clinic visits should keep us out of the apartment each day, except for Saturday and Sunday. Riley is doing fine and walking better. We wish we could go home this weekend for Sydney's birthday, but maybe we can have one big party when we get home for both of them.
Saturday, July 20, 2002
Day +42
Not a whole lot. I was able to get out and go to the store and get Sydney her birthday gift, we hope she likes it. Riley and I just hung out.
Sunday, July 21, 2002
Day +43
We wish we were home in Oklahoma, even for just today. Our family is celebrating Sydney's 2nd birthday. We hope she has a wonderful day. She is so sweet. I will try to put a picutre of her and Riley on the photo page next weekend. Syssey Girl...we wuv you and miss you. Have a wonderful party, I am sure daddy has made it extra special for you!
Monday, July 22, 2002
Day +44 WC: 4,400 Wt: 15.5kg
We got to see Dr. Peters. I have taught Riley something for him to say when we leave in September..."Outta Here!!" We told Dr. Peters and he thought it was funny. He said Riley is really doing well. He said that we may be able to leave early if Riley continues to do okay. We will just wait and see. We discussed if he wants Riley to see hematology/oncology, genetic doctor or his pediatrician. He said Riley would only need to see the hemo/oto if he was having problems and didn't think he would need one right now. Dr. Peters said he would talk to the pediatrician and genetic doctor and see who would feel more comfortable with him. I told him it didn't matter, we just want them to be able to feel comfortable with Riley and know that Dr. Peters and Dr. Grewal are just a phone call away.
Three years ago today, Riley came home from the hospital. For those of you who do not know...Riley was born five weeks premature. He spent 24 days in NICU in Norman Hospital. We had to wait for his lungs to develope before we brought him home. And we thought that was the roughest part of his life...little did we know. But we are so greatful to have him.
Tuesday, July 23, 2002
Day +45
HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY DEAR SYDNEY...HAPPY BIRTHDAY TO YOU!!!
Oh, Syssey Girl, we miss you so much and wish we could be there for your second birthday. I am sure daddy is giving all kinds of hugs and kisses from me and Riley. You getting to be such a big girl. You are growing up so fast and I am missing it, but that is okay, Riley and I will be home soon.
Riley and I went to his speech and occupational therapy. He did fine in speech, but started feelin a little earpy during occupational, so we left. He came home and laid down for about twenty minutes and was fine. Who knows??! But he does keep you on your toes when he does something like that. We went for a walk later with Shelia and Luke. We finally got to meet Jennifer, Taylor's mom. She is so concerned that the transplant may not take, so please say a prayer for her. They are from Washington. It is amazing of how we meet so many people from many different states.
Wednesday, July 24, 2002
Day +46
Today marks the one year anniversary for when Rick and I received Riley's final diagnosis for Hurlers Syndrome. It is hard to imagine that we have made it this far as we sometimes thought we would never make to the next day. We are so greatful to all of our family, friends and the new friends we have made along this journey. You all have given us so much love, prayer and support to get to the next day. The first couple of years are going to be hard, but we have made it through the first one and all is just fine. We are happy and greatful to have each other, we thank God each day for all that has been given to us, especially our strength and courage. We have no way to describe what this year has been like. Each day we ask God if he would spare another family of this journey, but we will understand if he can't. God has his plan for us and we try each and every day to fulfill it the best that we can. Thank you for everything that each of you have done for us, we are forever greatful. We have no idea how Riley has touched your lives, but pray that he makes you smile and shows you God's love.
We went to physical therapy today and Jane said he is doing much better. She said his right tendon in his ankle is starting to loosen, but will wait to see if he needs some sort of brace. It rained all day and night, I hope it has cooled off outside some.
Thursday, July 25, 2002
Day +47 WC: 4,600 Wt: 15.6kg
We went to clinic today and all was good. Riley needed a boost of magnesium and then they increased his oral dosage. We also discontinued nystatin four times a day to diflucan once a day. Wow, we now only have twenty-three meds each day. We also had speech and occupational therapy. He is doing well in both. Although I wish he was doing better in speech. This is something I hope Sydney will help encourage him to do more of. Other than that we had a pretty quiet day. He did get sick this evening, the first in five days. We are so happy to let you know that Morgan and Taylor will be able to leave the unit in a few days. We are so happy for them, Shelia, Luke, Riley and I can't wait to include them in our walks. We haven't gone in a couple days as it has been raining here.
More later and again, sorry for not getting it updated sooner.
xoxoxo.......
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
P.S. We want to wish the following a Happy Belated Birthday...Uncle Randy on the 20th, Mandy on the 21st...Kylie and Colten (who are cousins to Riley and Sydney) on the 23rd! We wuv you and miss you very much!!!
Friday, July 19, 2002 at 12:49 AM (CDT)
Wednesday, July 17, 2002
Day +39
I talked to Rick today, and he is getting Syssey Girl's birthday all planned. We have decided to do it in Elmo, even though she would rather have Baby Elmo. Rick looked several places for Baby Elmo party things, but could not find them. He has ordered her cake and invited our family. Since Riley and I are not there, Rick decided to just do a family party on Sunday afternoon at his parents house. He still has no idea of what to get her, but I am sure whatever he does, she will love it. Riley and I didn't do a whole lot. We have managed to get our days started late and then we stay up late. I am working on getting that fixed, good luck!! We did go for a walk with Luke and his mom. It was really nice, hot, but nice to get out. The boys loved it and did not want to go back in. Riley seems to be walking a little better today. Here lately he has been holding on to things when he walks or he just decideds to crawl. I can't wait to get him back in therapy this week.
Thursday, July 18, 2002
Day +40 WC: 3,400 Wt: 15.4 kg
We had a nice day at clinic today. I made an 8:00 a.m. appointment so we would get our day started early. We saw the nurse practitioner, Katie. She is really good and Riley likes her. We went over our meds and they decided to discontinue his MMF. Yeah, that is two doses gone! But still many to take each day. Riley's weight is still going down, but no concern as long as he is eating. We got our mail order meds worked out too. The mail order company had some questions about a couple and between Dr. Grewal and Katie, it was worked out. I still have to get a couple refilled at the pharmacy until the order gets here, but it is still saving us money in the long run. Katie told us that Riley's donor's enzyme level was 26.9. Riley's body has produced more than that, which is wonderful. I don't understand how, but it is still great. I will ask Dr. Peters on Monday. We had our therapy evaluations today. Speech will be on Tuesday and Thursday with physical therapy being Monday, Wednesday and Friday. We will work in the occupational therapy tomorrow. I had them scheduled throughtout the week so Riley would give each one of them all of his attention. Each appointment will be for thirty minutes and we may increase them later. We are still working on putting two words together for speech. Riley's tendon in his right leg is tight, so we want to work on loosening it. I noticed that he walks more with his tennis shoes on so I will have him wear them several times a day to see if we can work on that tendon before possibly getting braces fitted for his legs. Riley really enjoyed the room where we go for therapy. The therapies are located in the Mayo Building next to the hospital in the old BMT unit. The rooms are ventilated like his hospital room was and he is the only one in the room so he can take his mask off. They had the hard plastic jungle gym with a slide. He would climb up the slide and just laugh. He loves sliding down just as much. So Memie, I think we are ready for our jungle gym!!
I talked to Morgan's parents and they said she is doing great. She has had two surgeries in the past three days, and each time she has come off of the tube without any problems. They were worried that she may stay on the ventilator for several days, but she showed them! The doctors said that they will now let her tummie settle down and then start feeds, then oral meds, then back to the Ronald McDonald House! Yeah!! She got her transplant around April 18 and has been in the hospital ever since. They have a little girl, Alyssa who is just a couple months younger than Syssey Girl. I told them that I was going to come see her on Tuesday since I couldn't be with Sydney. Alyssa is so sweet, she has this curly red hair, like her mommy. Oh, and their new little girl is so pretty, Maddison. Thank you for including their family in your prayers. Being here without our families for support, we learn to support each other and become a new family.
Well this is all for now. Riley and I are going to make Sydney her birthday card tomorrow. I am going to try and get her a gift and get it mailed. I miss everyone at home so much, but we only have sixty more days. I am still hoping that they will come up this weekend or next weekend, but no one has said anything about coming up, except when we leave. Please continue to pray for Riley that everything keeps going smooth.
xoxoxox.......
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Wednesday, July 17, 2002 at 01:36 AM (CDT)
Tuesday, July 16, 2002
Day +38
Well, Syssey Girl will be two in one week. I can hardley believe it. This year has gone so fast. I wish Riley and I were able to be with her for her birthday. But I know she has so many other people at home that will make her birthday special. We can celebrate with her when we get home in September. Riley is still doing well. I got his therapy evaluations scheduled for Thursday and Friday. I talked to CJ's mom today. They are still planning on being here September 18th. Riley's day +100 will be September 16th. We are planning on going to dinner together, just the girls. We may be able to see each other in December for CJ's one year visit and Riley's six month visit. We miss them so much, but are glad they are home. You have no idea what it is like to create such a wonderful bond with these families. I am so glad we chose to come here for Riley's transplant. We have met so many families going through transplant for Hurlers and other diseases. You get here and you there is another world created for you. We miss everyone at home, but having the closeness we have with each family makes it easier being here. I believe that timing is everything and God has placed us here at the right time.
Monday, July 15, 2002
Day +37 WC: 3,700 Wt: 15.9
We got to see Dr. Peters today. He said Riley is doing well. They gave him a dose of magnesium in his line and gave us a prescription to give it in his NJ tube. His potassium was increased and laxis was decreased by a dose. Riley and I came back to the apartment and just hung out. I worked on making his thank you cards for all of the nurses and aides while Riley took his nap. We later went back to the hospital to pick up a prescription. While we were there, Morgan's dad came down and got the baby gift for their new little girl. They will do Morgan's surgery on Tuesday, so please keep her in your prayers. Riley enjoyed being out and did not want to go back in. When we got back in the apartment, he would not take his mask off and everytime I tried to take the stroller cover off he would pull it back down and tell me "NO!" We will have to start taking walks in the evening so he can get out more.
xoxoxox.........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Monday, July 15, 2002 at 12:59 AM (CDT)
Days +34, 35 & 36
I have posted some of Riley's birthday pictures on his page, so check them out. Yes, he is quite puffy, but he has since lost most of that. You have to remember he was on steroids for over a week.
We really haven't done too much these past few days. I did get out on Friday and go to the store. Riley is still doing well. We have gotten into the bad habit of staying up late and sleeping in late. That will need to change this week so we can start going to therapies. We will see Dr. Peters tomorrow. I have started making the thank you cards for the nurses and aides. They are really neat. I hope to be able to finish them this week so we can have them taken up there. Well, that is really it for now since we didn't get out or anything. Riley is still getting sick on some of his meds, but I will just have to accept that and quit trying to figure out which one is doing it. I will post an update tomorrow night after our doctor appointment. Take care.
xoxoxox.........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Friday, July 12, 2002 at 12:29 AM (CDT)
Wednesday, July 10, 2002
Day +32
Nothing new is going on. It is raining here today, which is good since it has been so hot. Riley has been busy playing and moving around. I think he is still working on getting his strength back in his legs. He will walk a few steps fine and then he wants to hold on to something, but I am glad that he is moving around and not just sitting around. I will start his therapies next week so that will keep us out of the apartment a couple more times a week. We are still working on the meds and I hope it gets easier for Riley. I sometimes worry that he is not getting enough nutrition since he keeps getting sick on the meds. I will talk to the clinic tomorrow about it.
Thursday, July 11, 2002
Day +33 WC: 4,000 Wt: 16.1 kg
We made it to clinic on time, yeah!! I take Riley in the stroller so he can get a different view. They still say he is doing well. I asked about the enzyme level and our nurse practitioner said that 30 was an average level and she will find out what the donors level was and have it for me on Monday. We will see Dr. Peters on Monday. I talked to them about the meds and they said it will take some time for his body to get used to them and his weight is fine right now. Riley will take these meds for about six months. CJ's mom reminded me to check with our insurance to see if they do mail order prescriptions. I checked on it today. This is going to save us so much money. When Riley got out last week, his meds were about $400.00 for a months supply. This didn't include the three I didn't have filled because we already had some. By doing the mail order, we will pay about $300.00 for his fifteen meds for a three month supply. It will take about three weeks for his meds to get here so I may have to go ahead and get some refilled. Riley only got sick once today on the meds. I have started pushing them in his tube verrry slow. It will take a while by doing this, but I don't want him to get sick any more. We also got our "Day +60 Letter" today. I guess there are certain tests they do at different times after transplant. Riley's 60 day appointment is on Monday, August 5. Wow, that gives us something to look forward to as that will mean we are half way to day 100. This is about it since we just hang out here at the apartment. Rick and I have agreed to keep him in a much as possible to help keep him out of the hospital. Some of Riley's favorite nurses and aides have called to check on him and will come next week to see him. They told me thay miss Riley, but are so happy he is out of the unit and for him to "stay out".
Oh, we did have some excitement here near our apartment today. I am not sure of all the information, but sometime this afternoon, President Bush was at the hospital. I am not sure why and Riley seems to control the t.v. So if you saw the report you probably got to see the hospital Riley was at.
xoxoxox.......
Jeanne & Riley Bear in Minneanpolis
and
Rick & Syssey Girl in Del City
Wednesday, July 10, 2002 at 01:40 PM (CDT)
Tuesday, July 9, 2002
Day +31
We are just hangin' out here at the apartment. Riley is eating well and I am trying to get his meds worked out so he doesn't get sick on them. I have it narrowed down to two that are making him sick, CSA and Acyclovir. These are the most important meds he has to take and will take them until day +100. Just when I think I have the right combination of which meds to give when, Riley's little body decides it wants to get sick. But other than that, he is fine. He is back on his regular schedule of getting up around 7:00 a.m. taking a couple hour nap at 2:00 p.m. and going to bed at 9:00 p.m. He is now able to get a bath since we are out of the hospital. There wasn't a shower in his room to bathe him, so we had to do sponge baths. He really enjoys playing in the water.
We want to thank everyone for their prayers and thoughts as we go through this journey with Riley. He is really strong and we have faith in God that he will continue to be beside Riley and his family and friends. I am going to add my prayer list below as their are some other little Hurler babies that really need prayers right now.
Monday, July 8, 2002
Day +30 WC: 5,200 Wt: 16.4 kg Enzyme: 65.7
We have wonderful news. Riley's Enzyme level is 65.7. This is the reason for the transplant is so he would get the enzyme from his donor that he didn't have. His level was zero and now it is 65.7. We are so happy. I am not exactly sure of the enzyme scale, but I think it is 0 to 100. I will get the actual report on Thursday. With this enzyme, Riley's body should no longer be affected by the storage disease. Although this doesn't make "everything" better. Riley will still have a long road from the damage caused by the disease prior to his transplant and for the other issues that the transplant doesn't help. Over the next couple of years, Riley will probably need hip, knee, back and possibly carpal tunnel surgeries. Most Hurler children will start having their surgeries between the ages of four and six years old. Riley will aslo need to come back to Minneapolis on his six month anniversary and then each year on his year anniversary. Riley is such a wonderful little guy and I pray that someday each of you have the chance to meet him and see how happy he is. I read somewhere that said the word "bear" means "strength". Little did I know when we started calling him "Riley Bear" did we know how much strength he has. We can only pray that he continues to do as well as he is and thank God for seeing him through this far.
xoxoxox.........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Prayer Request:
Morgan - who really needs to have her surgery next week but must get over her infection first. Also for her mommy to have a safe and fast delivery on Thursday of her new little brother or sister. www.caringbridge.com/me/morgan
Luke - he is day +13 and the doctors want to discharge him. It is too soon for him even though he is doing well, he just needs to stay in the hospital a little longer. www.caringbridge.com/mi/lukedevolder
Taylor - will get her transplant on Wednesday. She has had a rough couple days with chemo and radiation...she is eight months old. www.caringbridge.com/mn/taylormcclung
Sam - he is a fourteen year old with cancer. He had three transplants since February 2002. He got out the same day we did and I think he is back in due to a fever.
And of course, don't forget the ones that have gone home... Susanna,CJ and Elliot. And the families who's loved ones have gone to be with Jesus...Alexis, Andrea, Brady, Soumner, Caleb, Kacie and Carley.
Sunday, July 07, 2002 at 10:50 PM (CDT)
Monday, July 1, 2002
Day +23 WC:7,500
After I updated the page last night, Riley's night nurse and I noticed his central line was cracked. Our night nurse and charge nurse both new it was repairable, but the floor resident and surgical resident said it wasn't. Finally, the surgacial resident said we would have to talk to radiology since they were the once that placed it back in January. The nurses clamped it off and put heprin in the line to keep it open so it wouldn't clot. Riley missed some meds, but not a whole. We went down around 9:00 a.m. and radiology fixed his line. Rick and I were worried that Riley may need to go to surgery and have a new one put in. It really isn't a good thing for patients recovering from a BMT to go to surgery. Even though it is suppose to be steril, there always seems to be some infection going on in there. Riley enjoyed playing with Syssey, she does keep him laughing. Riley started some oral meds today. I am not sure how this is going to work. Rick and I talked and we are going to see about putting the NJ tube back in. We don't think it is fair to Riley to fight with him on taking meds all day long. Besides, this way I will know he got all of the med as he now keeps some in his mouth and then wipes his mouth out with his blankie. He is soo smart!! The doctors say Riley is doing fine and as long as he doesn't have any fevers, we can leave on Wednesday.
Tuesday, July 2, 2002
Day +24 WC: 5,300
The doctors said we can have the NJ tube placed today, but it may be Thursday before we leave so we can make sure everything is going okay. We got the tube in this afternoon and Riley did okay. I was not happy with radiology as they placed a too short of tube in him and I kept telling them that it was too short. Once they got it in place they then realized it was too short and had to take it out to put in a longer one. I think I was more upset than Riley. We got back to our room and got Riley settled. We started his meds slowly in the tube so he doesn't throw up as he had already done so. I spoke to Chris the resident about him throwing up. I told him about them placing two tubes in Riley and that they didn't do the barium flush after placing the second one. Chris said if he got sick again tonight then he would have Riley x-rayed for tube placement. He thinks that maybe it is in his stomach and this could be causing him to throw up. Chris is really good with Riley and we are going to miss him when we get out. Well, unfortunaly, or fortunately, Riley got sick when the new night nurse pushed his med in. I told her to go slow, she did with the med but not with the water flush. Chris had him x-rayed and sure enough, the tube was coiled in his stomach. Back to IV meds for the night and down to radiology tomorrow some time.
Wednesday, July 3, 2002
Day +25 WC: 5,300
It seemed like forever before Radiology could get Riley in. I had already expressed my frustration to our nurse and he wasn't happy with radiology taking so long either. When we finally got down there, they wanted us to wait another fifteen minutes so someone could take a tour. Our nurse told them no because we had been waiting all morning. Radiology was trying to say that Riley's tube was have come untaped from his nose and pulled out. I told her no it didnt' and that she didn't flush it with barium to check placement yesterday. She admitted that she didn't and said she would make sure it was done this time. I hate to say, but I think this is the worse department we have delt with throughout our time here. We were finally able to go back to the room. I brought Syssey up to visit with Riley and she and I went back to the apartment for the night. These two are so busy together. We will still be able to leave on Thursday as the discharge papers have been written.
Thursday, July 4, 2002
Day +26 WC: 3,700 Wt: 17 kg
Happy 4th of July!!! Syssey and I got up to the hospital and finished packing everything. I loaded the car up and made on trip back to the apartment. I went back and they unhooked Riley from his IV machines. He was so happy for that, he was everywhere. We were able to leave around 2:00 p.m. after we got all of his meds up from pharmacy. Everyone was so happy, and sad, that we were leaving and said we can only come back for a visit, not a stay. They said Riley is doing very well. One of our favorite aides pushed Riley and Sydney out to the car and helped mom and I load them up. She was sad we were leaving, but was happy that Riley is doing well. We will miss all of our nurses, aides,therapists, doctors and the food and cleaning staff that we got to know so well. We have met so many wonderful people and appreciate all that they do. When we got home, Riley just ate all afternoon. Mom and I were trying to get everything settle as Rick and his grandfather were coming the next day. Riley has ten liquid meds and one claritin pill that disolves in his mouth. The liquid meds come up to twenty-seven doses every day, except on Monday and Tuesday he takes thrity-one. Thank goodness the NJ is working fine. I had to get Riley caught up on his afternoon meds and get his evening and Friday meds ready. It is so much easier to get the next day meds ready the night before. The only problem is that I can't put too much volume in the tube, so I have to space them out a little. We didn't do anything for the 4th. We tried to get Riley and Sydney to watch fire works on TV but they were not interested. We hope everyone had a happy and safe holiday.
Friday, July 5, 2002
Day +27 WC: 5,000 Wt: 16.7 kg
Today was are first clinic day. We had to be there at 9:00 a.m. which wasn't too bad. We were there for about an hour and a half. Our doctor thinks Riley is doing well and that maybe we will only need to come to clinic twice a week. I do have a list of things to watch for that would concern the doctors. Things like, vomitting, diahria, high fever, skin rash and several more. I would either call the clinic if it was during the day or the BMT Fellow at night. I am so glad we are close to the hospital and clinic. I am going to try and keep early appointments to help limit Riley's exposure to others. Even though he does were a mask, he is a three year old who wants to check out everything. Rick and his Pa got here around 6:00 p.m. We went and got bar-b-q from this really fun restraunt. It was really good. Riley and Sydney have been so busy. Riley has tried his hardest to keep up with Sydney, but his little legs wore out and he had to keep taking breaks. But then they were at it again, either playing or fighting. They really do miss being with each other. And of course, when one wanted me to hold them, the other one dropped what they were doing and wanted me to hold them instead. Pa really misses Riley. He got such a kick out of how well he is doing. We miss being at home and with our family, but we hope to be home by the middle or end of September.
Saturday, July 6, 2002
Day +28 Wt: 16.6 kg
I had to take Riley to clinic today to have his CSA level checked since we had already given him the med yesterday before clinic. We found out later that it was fine. We don't go back to clinic until Monday at 8:00 a.m. The kids stayed pretty busy all day with Rick and Pa. I was still trying to get some things put up. I am going to be sad when they leave tomorrow, but I am sure someone will be back soon. We didn't do too much today. Mom, Pa and I went to target to get some things that I needed before they left. Rick stayed here with Riley and Sydney. When we came back, they were all asleep in the bed. Rick and I fixed dinner and watched the kids play. Mom was still trying to get some laundry done so I wouldn't have to mess with it, but I now have time to do it since we are here at the apartment. I wish they could stay and not leave in the morning. I know it gets hectic with so many people here, but I enjoy having them around.
Sunday, July 7, 2002
Day +29
We got up at 5:30 a.m. and they all left a little after 6:00. Riley and I went back to bed after they left. We got up and started his meds. He is doing okay with them, but I still need to just watch the amount of volume I give him and make sure he isn't eating when I do them. Otherwise we have a little bit of an accident. He is slimming down so much, I hope he his eating enough. I will probably ask the doctors tomorrow if this is normal for him to not eat too much at a time. I know the nutritionist was thinking about putting him back on tube feedings again before we left the hosptial. I told her that he was eating just fine. It now seems that he eats in spirts. Hopefully, it will improve soon. We talked to Memie and Daddy several times on their way back. We sure do miss them. Riley hasn't said their names a whole lot, he just kept looking for them this morning. I guess he is getting used to them coming for a few days and then leaving. He is really good about adjusting to everything so well, unlike me sometimes. I usually cry the first couple days and few phone calls, then I am okay since I know someone will be back in a couple weeks. We do not know who or when someone is coming back, since we had originally planned to be back home at the end of this month. Since Riley had a second transplant, his hundred day won't be until September 16. I am sure time will go by fast once we start physicall and speech therapy next week. We already have some of the nurses and aides that want to come and visit us. Well that is all for now. Sorry for not updating all week, but when we have visitors, I try to spend as much time with them as I can. Oh, I am not going to preview this since it is so long, so forgive my mistakes.
xoxoxoxox.........
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
Sunday, June 30, 2002 at 11:03 PM (CDT)
Sunday, June 30, 2002
Day +22
Riley is doing very well. He pulled his nasal canulia (oxygen) off in the middle of the night, so we just used a blow by of oxygen. The doctors are very pleased with his lungs. They said there is still some traces in the x-rays that don't look like he has completely cleared up, but clinically, he his doing fine. He is getting albuteral only nebs every four hours now. He is doing better about taking his acyclovir, 7cc four times a day. This drug helps prevent herpes, CMV and some other things. He has to take this until at least day +100, Wow! WC is at 10,800 today. We have not had any fevers for over a week. He hasn't thrown up either in about a week and a half. He is still eating good. Today was his last day of steroids, we will see how he does with eating over the next couple days. I hope he keeps it up. With my family here, maybe bringing in food we know he likes will help him continue to eat. We are going to add another oral med on Monday, it's an antibiotic. One oral med at a time is part of the road to get out and go back to the apartment. We are changing doctors tomorrow. We sure will miss Dr. G and the fellow, but we will see thiem in clinic when we get out. We will miss Chris as well, he will go up stairs to the 5th floor for his next residency. We hope we never have to see him there. 5th floor is where BMT patients go when they are re-admitted for a fever or something.
Our visitors got here early this morning...1:00 a.m. Riley had just went to sleep, but Memie, Syssey Girl and Payten came up to see him for about an hour. Actually, it took that long to get Syssey to go back down stairs. Memie came up about noon, just in time to be here for the doctors to come by. I went back to the apartment and we all got ready to come back for Riley's "3rd" Birthday Party. He had so much fun. Aunt Kim and Uncle Alan got him about twelve different kinds of balls, just right for his hands. They also got him a Mongoose tri-cycle. He loves it. I can't wait for him to be able to ride it around without having to worry with IV lines. He also got some books from Memie, one with a flute. He likes it and he made sure everyone could hear him. We had another cake. Riley, Syssey Girl and Payten all stuck their fingers in it and licked the icing. This party lasted for about three hours. I can't wait to post some of his birthday pictures this week.
We talked to Daddy tonight, he is a little loney. But he has found some things to keep him busy while his little Princess is here with us. Don't forget that Riley will have blood drawn on Monday to check his enzyme level. This has to go to Philladelphia and takes about two weeks. Please pray that he will have a good level.
Saturday, June 29, 2002
Day +21
Well, it has been three weeks since his transplant. I do wish it has been three months and or our way home to Oklahoma. But we will be patient and not rush anything. We do not want to go home or to the apartment until all is well. WC is at 11,600. They dropped his oxygen down to 0.5 liters and he seems to be doing fine. (He wen't to 1 liter yesterday.) His nebs are every four hours now with atrovent every eight. In a few days we will be able to go back to the inhalors. We had a chest x-ray today and he his improving, even about having them done! He is really sounding good. The doctors really didn't have too much to say about him. So we will continue with one day at a time.
We can't wait for our visitors to get here. I am so glad that Riley is feeling better and will be able to enjoy playing with Sydney. I know they must miss each other. I am going to put my Prayer Requests on the bottom of this entry. I feel bad that I havn't done it in a while, but that doesn't mean that I don't pray for them each and every day. They just need to have more prayers, and we know it never hurts anything to have too many prayers.
xoxoxoxox.......
Jeanne, Riley Bear, Syssey Girl in Minneapolis
and
Rick in Del City
Prayer Request:
Morgan - She will need to have surgery for her intestines and appendics in a day or so. There is a concern with her not coming off of the ventilator very easy. Visit her web page at www.caringbridge.com/me/morgan
Luke - He is day four and seems to be doing okay. This concerns his parents some, they think he is feeling to well. I have told them to give it another week and it will hit. His web page is www.caringbridge.com/mi/lukedevolder
Taylor - This is a new hurler to our family. I have yet to meet them but they will be in the unit on Monday. She is about eight months old.
Saturday, June 29, 2002 at 01:19 AM (CDT)
Day +20
HAPPY 3rd BIRTHDAY RILEY BEAR!!!! MOMMY, DADDY & SYSSEY GIRL WUV YOU VERY MUCH!!!
We want to thank everyone for all the guestbook entries, keep them comming!!! Riley was in his "steriod" mood again for most of the day. His lungs are getting better. They have decreased his nebs to every four hours now. They will take him off of the TPN on Saturday and see how he does with eating on his own, especially after the steroids get out of his system. We started an oral med today, one at a time so we can possibly get out of here in a couple weeks, as long as he continues to have no fevers or shows any signs of graft versus host disease. I am not pushing us getting out until I know he his doing okay. I can not believe how much milk he is drinking. He has drank about 12-15 oz of 2% milk each day for the past three or four days, not to mention about 10 oz of water. WC was 13,900. We took a late and long nap today, so we are still up at 1:30 in the morning.
Today was sad for me. It was Riley's birthday and Riley and I had to spend it by ourselves. It was hard for me most of the day, but it changed. The staff on the unit came and sang happy birthday, and I cried and so did Riley! Riley got balloons and a stuffed bear from his Aunt Barb and the Purchasing Dept at Frito Lay in Texas (look for pictures next week!). Some of his nurses and aides gave him gifts, which he really loves. We had cup cakes for the unit staff and patients. Riley had a chocolate cupcake and had crumbled it all over his bed. Oh well, isn't that what boys do?! Another hurler, Luke and his family, gave Riley a Scooby folding chair and a Pez holder and candy. I couldn't believe it when Riley ate almost a whole pack of Pez candy...thanks Shelia! Everyone here really made his birthday special. The family life center gave him a bear with a number three on it, it is really cute. But then I got to thinking that I shouldn't be sad because it was just me and Riley, I was happy because he was able to have another birthday. I also got to have him all to myself!!! We can't wait for our visitors tomorrow night. We know that daddy will be sad and loney without his Syssey Girl, but she will be home before he knows it.
Again, thank you to everyone for all the entries you have made, I want you know that they make me happy when I see all the people who are praying for Riley and can't wait for him to come home. Riley is really a special little dude and so lucky to have so many family and friends around him. He has touched so many lives and we know he has alot more to touch through out his life. I will try to keep this updated next week the best that I can, you know that Syssey Girl and Riley will be fighting for my attention non stop. If I don't update, feel free to call or e-mail.
xoxoxoxo.........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
P.S. We want to let Monique and James know we are so excited about their news of expecting their first baby in March 2003!!!! Wuv You and Miss you lots!!!!
Thursday, June 27, 2002 at 10:21 PM (CDT)
Day +19
Yeah!! RILEY IS 100% ENGRAFTED WITH DONOR CELLS!!!!
We just got the news this afternoon. I told our resident, Chris (From Nebraska for our OSU fans) that he better not come back unless he had good news for me. If it wasn't good news, then he was to tell me that they lost the results or even the tests. Chris came in while we were napping and gave me the wonderful news. Chris told Riley this was his birthday gift. Of course, my first call was to Rick while I was giving Riley a big hug and kiss, who just went back to sleep. Rick and I are so happy and so proud of our strong little boy, but mostly we are greatful for such a wonderful Blessing that God has given us. Riley sure is a trooper. Rick and I split up the phone calls and everyone we called and talked to was so greatful and couldn't wait to share it with someone else.
Riley was in rare form today. His doctor told me yesterday that his meanness is flat out "A Man On Steroids". That is so true. Riley has been so mean these past few days and he still has another day or so of steroids to go, not to mention the week that it will take to get them out of his system. Good thing we have visitors all next week. Let him pick on someone else besides me. WC is 16,100. He received blood today as he did on Monday. I guess he is going to be just like his friend CJ from South Carolina about getting blood on Monday and Thursday. They are backing off of his nebs to every three hours and we will probably do x-rays every other day. They said his lungs are getting better. I think we will probably be here for another couple of weeks. Riley's lungs will need to be completely heeled and he will need to start taking his oral meds, unless be put the NG Tube back in. Well sorry to cut this short, but Riley is wanting another movie.
Thank you to everyone for all of your prayers, but don't stop praying as he still has eighty-one more days here, if all goes well. Don't forget our little trooper will be three years old on Friday, June 28th. Please sign the guest book, I look forward to all the entries.
xoxoxox........
Jeanne & Riley BEAR in Minneapolis
and
Rick & Syssey Girl in Del City
P.S. Happy belated birthday to Cody in Texas who turned sixteen on the 26th of June...look out world, there's another teenager on the road!!! Wuv You and Miss you lots!! Hope you had a wonderful birthday.
Wednesday, June 26, 2002 at 10:15 PM (CDT)
Tuesday, June 25, 2002
Day +17
Riley didn't sleep a whole lot last night and he took little short naps today. I hope he sleeps tonight. WC is 24,600. The doctors really didn't change anything today. I am still concerned about his weight, as I have always been. Each day I mentioned his weight to the doctors and they didn't not seem to concerned, until now. The pulmonologist is still after them to get the weight off so his lungs will clear up. Riley is soo puffy. He has reached 18kg (multiply that by 2.2 for pounds). This is alot for a little three year old. The chest x-ray is a little better, but not a whole lot. Riley has been playing quite a bit today and in a good mood, for someone who didn't sleep much last night. He is still eating and drinking. I hope they will decrease his TPN now.
Wednesday, June 26, 2002
Day +18
WC is 21,000 and the doctors say that is fine. The doctor visit today was good. They are going to decrease his TPN. He is maxed out on his bumax so they will give it to him as a drip, this is a diaretict. They will give him another diaretict to help get the fluid off of him and it is also been know to help with the lungs. The steroids will be reduced by half and given another three days, he has received five days already. His oxygen was reduced from three liters to one and a half liters. Nebs are still the same. I never found out what his chest x-ray was, maybe tomorrow. He is still playing some and watching movies, after all, he did get eight new movies for his birthday. He is eating and drinking well for someone who hasn't eaten in nearly three months. His weight was 17.9 this morning and is tonight is 17.7. He slept very well last night, or else I slept through him waking up!!! The doctors think we will have our DNA test results tomorrow. On day +21 they will draw blood to test his enzyme level. This will show how much enzyme he has after the transplant. Remember that his is zero and this is why he needed the transplant. These test will take a week or two, depending on how busy the lab is.
We want to thank everyone who went to the car show on Sunday. We heard there was quite a lot of people there and of course, some really nice cars. We have seen some new people sign our guestbook and are glad you found Riley's web page. Please feel free to foward it to anyone you wish. Also, sign the guest book as often as you like, I like reading all the entries as it helps me get through some of the tougher days. E-mail me sometime too! Well this is all for now. Please say a little prayer for the test results to show donor cells.
xoxoxoxo.......
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
P.S. We forgot to wish Pa Pa Rex a Happy Belated Birthday last Thursday. Wuv You Lots and we miss you already!!!
Tuesday, June 25, 2002 at 04:59 PM (CDT)
Okay, please "BEAR" with me on this entry. Since Rick, Syssey Girl, Rex and Rheta have been here, it has been hard for me to get time to update.
Thursday, June 20, 2002
Day +12
WC is at 2,500. He is still not feeling too well, but maybe when his visitors get here, he will perk up some. He is still running a bit of a fever at night, not much of one during the day. He stays between 99.5 and 100.9. Our visitors got here about 6:30 p.m. Rheta will be back to stay the night as they went to the apartment to unload and eat.
Friday, June 21, 2002
Day +13
WC is 6,000. The have drawn blood to see who's cells are growing, these results will not be back until the end of next week. Riley had a CT scan this evening since he was running a fever for about four day. There was no infection in his sinuses or stomach. What they did see was there is some mucus plugs in his lungs and the lining around his gallbladder is thickened. The pulmonologist came by and increased the albuteral neb to every four hours with atrovent every eight hours and will give him a steroid through his IV. As for the gallbladder, they said that this is common in transplants. They feel that there is just some byal in his bladder since he is not eating. They may do another test on him just for his gallbladder using a dye, but that won't be until next week. I went and order the birthday cake today, Scooby Doo. We will do his party on Sunday. I am enjoying my time with everyone. Syssey is getting to be such a big girl.
Saturday, June 22, 2002
Day +14
Rheta has been staying with Riley at night and most of the days. Rick and I have been spending time together and with Syssey Girl. We went and picked up the cake today...it is really cute!! Syssey has started repeating song lyrics, like...."Shake Your Booty". She is so funny, Rick said she would have to listen to classical music from now on. Ha Ha!! WC was 13,400. They were going to stop the growth factor today, but it had already been given to him. The albuteral has been increased to every three hours now and atrovent is every six hours. Riley is doing fine with them. We have suctioned his nose out a couple times and this seems to have helped. We also decided to put the nasal canulia on for oxygen. He is on three liters. The steroids have kicked in and he is starting to eat some. It isn't a whole lot, but it is something going through his system. Rick, Syssey and I went shopping for Riley. I hope he enjoys everything tomorrow.
Sunday, June 23, 2002
Day +15
Today is party day!! Rick and I have decorated his room in Scooby Doo, it looks really good. He has lots of presents that were sent with Rick. WC is 20,400...WOW!!! The doctors said they would wait and see if his WC goes down tomorrow, but they are not concerned with it where it is. We only suctioned his nose out once today, he didn't seem to fight us as much this time. He also got a chest x-ray today and he will do so for several days. Today's x-ray will be a base line of his recovery for his lungs. Riley got lots of gifts. Our family care partner came up for the party too. We let Riley and Syssey stick their fingers in the cake, they really liked it. We had a lot of fun. He got all kinds of coloring books, reading books, Scooby Doo stuff, eight new videos and books he can paint in. Syssey even got a gift too, she really likes her books. Rick and I spent most of the evening with Riley since they are leaving tomorrow morning. I kept Syssey up late so I could get alot of Syssey Girl doses for a week. She will be back in a week with my mom, sister and niece.
Monday, June 24, 2002
Day +16
Everyone left this morning at 6:00 a.m. I got in bed with Riley and he just cuddled with me. Rick said he thinks Riley missed me. WC is 25,700. The doctors think it is high because of the antibiotics and the steroids. He is now getting his nebs every two hours. The doctors said he doesn't have pneumonia or an infection. We just need to get his lungs cleared up. Today's x-ray was just a little better than yesterdays. He has been very playful today. But he really hasn't slept a whole lot, I guess he wants to make sure I don't leave for too long. We miss everyone already, but they will come back soon.
Well I think that is about it. I will put Tuesday and Wednesday tomorrow. Sorry for the delay. We miss everyone and want to thank everyone for their prayers.
xoxoxox.......
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
Wednesday, June 19, 2002 at 10:29 PM (CDT)
Day +11
That growth factor med did it's job, WC is now at 1,700. They will continue giving Riley the growth factor until his ANC number reaches 2,500, then they will stop it and see how his body does on it's own, he is at 200 now. If his ANC reaches 1,000, then they will give him another dose. In other words, Riley's little body needs to start producing cells on its own without the help of the growth factor. Riley was somewhat tired today. He didn't sleep very well last night. He still has some of a fever, but he doctor said they don't have anything back yet. I went ahead and asked them to give him some moraphine tonight to see if he can get some rest. They gave him .5ml about 9:30, so we will see. He is sleeping now and has only fussed once. Of course he is sprawled out all over the bed. Where am I going to sleep??!! Riley and I sleep in the same bed. This is so I can help keep him from getting tangle in his lines and in case he gets sick. I wonder if he would sleep better if I wasn't in the bed?? Something I will have to try. Riley still is not interested in food or drinking yet. He did take a bite of pizza today or as Riley calls it "Poppy". Don't ask where he came up with that because I don't know. He has not eaten since the day of his last transplant, April 1. The doctor said that maybe since he is getting some WC in, he might be interested in eating soon. I offer him things all the time. Aunt Barb, I think we need some Doritos and other "Toes"!! Some of you have asked about Riley's hair. Well, he does have hair on his head...back...shoulders...arms and even his legs. This is from the CSA med that he takes to prevent graft versus host disease (GVHD). He still has some long pieces on his head that didn't fall out during the first transplant and now he has CSA hair that is about an inch and a half long. He is loosing some of the longer pieces so far, as for the rest of the body hair, we will wait and see. The body hair is blonde and he has both blonde and dark brown CSA hair on his head. Well this is about all for now. We can't wait for our visitors to come tomorrow, please pray for them to have a safe trip.
xoxoxoxox......
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
P.S. Don't Forget:
OH, I almost forgot. A gentleman at Rick's grandmothers church is putting on a car show to benefit Riley. It will be Sunday, June 23, 2002 from 4:00 p.m. to 8:00 p.m. at Midwest City Regional Park. Please e-mail me if you have any questions or if you know of someone that may be interested in entering their car. This gentleman said he has already received responses from five different car clubs to attend. We want to thank him so much for doing this as he is truely doing it out of the goodness of his heart. God Bless!
Tuesday, June 18, 2002 at 11:26 PM (CDT)
Day +10
Riley slept well last night, despite having his breathing treatments while he was sleeping. The last couple days, he has traded his gagging to his cough. He only got sick twice today, but had coughing episodes quite often. The increase of his inhallors seem to help him and he was more like himself today than yesterday. The doctors are testing him for RSV and a couple of other things just to make sure he doesn't have something growing. We will have the test results back in a couple days. He also started running a little of a fever during the night and this evening. From this, his antibiotics have been changed to something stronger until the tests come back. The doctors still seem pleased with how he is doing. His WC is at 800 today. The doctors started his growth factor med to see if they can't boost his WC so it can fight off whatever is trying to start.
Riley received another special gift today from his donor. Of course his first was his stem cells, but he received a little soft stuffed fluffy dog. This is so nice of his donor to do this. For those who don't know, we and the donor do not know anything about each other except we know she is a 31 year old female and she knows Riley is a 2 year old little boy with a rare disease. After one year from his transplant date, we both can sign release forms if we wish to meet each other. Until then, we can send things through the donor bank but we can not mention names or locations. I am still working on a thank you letter to her, which is very emotional for me to do, so I am having a hard time finishing it. If any of you have any suggestions, please let me know.
Well that is all for now as I need to go. Riley is sleeping very peacfully, thumb in mouth and Pooh blankie in hand.
xoxoxoxo.......
Jeanne & Riley in Minneapolis
and
Rick and Syssey Girl in Del City
P.S. Don't Forget:
OH, I almost forgot. A gentleman at Rick's grandmothers church is putting on a car show to benefit Riley. It will be Sunday, June 23, 2002 from 4:00 p.m. to 8:00 p.m. at Midwest City Regional Park. Please e-mail me if you have any questions or if you know of someone that may be interested in entering their car. This gentleman said he has already received responses from five different car clubs to attend. We want to thank him so much for doing this as he is truely doing it out of the goodness of his heart. God Bless!
Monday, June 17, 2002 at 09:41 PM (CDT)
Day +9
Well today wasn't as smooth as the other days have been, but it wasn't too bad. I am sure it could have been worse. Riley slept until noon today. He was just really tired, maybe the transplant and chemo has finally hit him like it is suppose to. When he got up we checked his oxygen level and he was going from 90% to 94% and was breathing a little heavy. I then noticed he had red splotches on his back. They weren't raised, just all over his back and he didn't seem to act as though they bothered him. One of our favorite nurses asked the resident to come and check on Riley. He didn't know what the splotches were so he was going to get the fellow to come in and confirm that it wasn't graft versus host disease (GVHD). The resident also decided to have Riley get a chest x-ray and to have a nebulizor breathing treatment of albuteral in stead of his inhallor. The fellow said he didn't have GVHD and that we would just watch it since he didn't have any new meds added that could cause this "hives" reaction. Fortunately, it went away in a couple of hours. We did his x-ray and neb at three. He also got a little dose of moraphine to take the edge off of any pain he might be having. Needless to say, he went to sleep and slept until I came back from my break at six. The chest x-ray didn't show anything different. The resident increased his inhaillors to be more frequent for now. He said that unless he gets a fever or really has problems breathing, then he won't treat him with any other meds. Riley seemed to be his normal playful self this evening. He talked to his daddy and Memie for a few minutes. Rick and I think that maybe his transplant is taking since he is having some problems. Not that we want him to have problems, but maybe this is just what really goes on during a transplant that is grafting. Thank you to everyone for their prayers. More tomorrow.
OH, I almost forgot. A gentleman at Rick's grandmothers church is putting on a car show to benefit Riley. It will be Sunday, June 23, 2002 from 4:00 p.m. to 8:00 p.m. at Midwest City Regional Park. Please e-mail me if you have any questions or if you know of someone that may be interested in entering their car. This gentleman said he has already received responses from five different car clubs to attend. We want to thank him so much for doing this as he is truely doing it out of the goodness of his heart. God Bless!
xoxoxox......
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Sunday, June 16, 2002 at 11:10 PM (CDT)
Day +8
Happy Father's Day to all the fathers out there. We hope he had a wonderful day.
Riley slept very well last night. He is still coughing and getting sick with the muccus stuff. He is being very good at it. One of the nurses had said that this won't go away until he gets some really good counts in, some where around 2,000. Riley's WC is 600 for today. I talked to the doctors today about mine and Rick's concern for his WC to be this high so soon. During Riley's cord blood transplant in April for these same days, he was around 300 and 400. The doctors understand our concerns, but ask us to be patient until they test Riley on day 21. The counts that are in right now may still be Riley's WC going down from the chemo or since stem cells graft faster, it may be some of the donors cells. The doctors don't know how much they are asking of Rick and I to be patient for another couple weeks. They said this test will let them know the percent that is donor cells from both transplants and Riley's own cells. Please pray that they are donor cells!!! Other than Riley's cough, nothing has changed here, besides my lower back being sore from picking up this 36 lb. toddler. For those of you that don't know, our little baby boy will no longer be "a baby boy". On Friday, June 28 at 2:25 p.m., Riley will be a three year old toddler. Wow!! Rick and I can't believe he will be three. I will be ordering his cakes this week. When Rick, Syssey Girl, Memaw and Pa Pa get here on Thursday, we will celebrate Riley's birthday on Sunday with a small cake for the family. Then on his birthday, I am going to have a big cake for all the doctors, nurses, aides and other families on 4E to enjoy. Of course, his decorations and cakes will have his favorite new friend on it...Scooby Doo!! Riley calls him Dooby Doo and Rick said Syssey calls him Doo.
Uncle Randy and Aunt Traci had a cook out today in Del City. Rick called me from there and I talked to everyone. We sure do miss not being at home. Our family care partner, Rhonda, came by today. She stayed and visited with us for a few hours. It was really nice because the weekends get long here. Well I will go for now. We hope everyone had a nice weekend and a Happy Father's Day.
HAPPY FATHER'S DAY TO RICK FROM RILEY BEAR AND SYSSEY GIRL!!!! WUV YOU!!!
xoxoxox......
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
P.S. Happy Belated Birthday to Nanny on June 15th. Wuv You and Miss You Lots!!!
Saturday, June 15, 2002 at 08:45 PM (CDT)
Day +7
Riley's WC is at 600 today. We didn't see the doctors during rounds as we were sleeping. Riley has been pretty gaggy today and still caughing alot, so I think this makes him more tired. We really didn't do anything today but hang out and watch movies, since he decided to take a four hour nap. But his little body needs to rest.
Friday, June 14, 2002
Day +6
We have a WC of 700 today and received platelets. The doctors still say he is doing fine. His is starting to caugh more. This is from the muecus that is sitting in his tummy. It is really thick an foamy so it doesn't digest very well. If it sits there too long, then Riley will try to throw it up and sometimes it gets stuck in his throat, which causes him to caugh. He did fine in therapy. He is sleeping much better since we have taken the NJ tube out the other day. It is nice to see his cute little face without tape all over it. I am working on getting him to repeat numbers one thru ten. He is doing well at it.
Thursday, June 13, 2002
Day +5
Riley slept very well last night and took a good nap. He is doing fine and not getting sick too much. The doctors still say he is doing well and we will see what the counts will be this weekend. We ask that you pray for this transplant to take because we don't know if Riley would be able to have a third transplant. He is such a strong little boy and so happy. He really doesn't fuss too much about having to be here in the hospital, thank goodness he is too young to understand everything. All the nurses and aides and doctors say he is the model patient and love to come see him and here him tell them "OUT!" or "Bye-Bye" in his cute little voice. I am enjoying this time with him, even though I do miss my Syssey Girl alot. I can't wait to see her next week. Well this is all for now.
xoxoxoxo...
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
Thursday, June 13, 2002 at 09:01 AM (CDT)
I have had some problems with the system when I update, so here is what I can remember from the last couple of days.
Wednesday, June 12, 2002
Day +4
Riley slept really well this morning. He is still a little gaggy. Riley did his PT today. We are working with trying to get him to strectch his tendons in his knees and ankles. The right one is tighter than the left and he sometimes fights us. Riley may need to where braces on his legs for a little while when we get out, but we will see how he his doing when we get out. He could be just not using his legs and feet to their fullest since he is the hospital. The therapist said some kids do that. We took the NJ tube out this evening. Actually the nurse untaped it from his nose and we let Riley do the rest. Guess what? He didn't get sick the rest of the night, all night. He is a lot better mood than he was yesterday.
Tuesday, June 11, 2002
Day +3
Riley did not have a good day at all today. He was pretty sick most of the day. I have let him have phenergan more than usuall, but he needs to be comfortable and able to rest. I am going to ask the doctors if we can take out the NJ tube. Rick and I feel that it could be bothering him and adding to his vomitting. I have had a couple of the nurses say the same thing. He did feel better in the evening and got down and played for about an hour. He is trying to be his happy little self, but he just doesn't feel like it. I think this is probably the worse day we have had between both transplants. We can only hope for tomorrow to be better.
Monday, June 11, 2002
Day +2
We sure do miss everyone from this weekend. We had such a wonderful time with everyone. Rick spent a lot of time with Riley, this was good for both of them. I was able to spend time with the Syssey Girl. She is getting so big and funny. Her uncle Paul had said something to her the other night and she repeated it. Paul told her "Sydney, you're funny!" She said "Funny" and laughed and then said "Syssey Funny!" She would say this all weekend long. It was soo cute. Riley is doing okay. I think he is tired from the transplant and seeing everyone this weekend. He is a little sick today. They will test Riley on day +7 to see if his white count (WC) is going up. On day +21 is when they will test to see who's cells are growing, either Riley's or the donor's. It will take about a week for these results to come back. Riley had to receive blood yesterday as he was a little low. We hope all is well with everyone at home. We miss everyone. Talk to you soon.
xoxoxoxo.....
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Sunday, June 09, 2002 at 09:58 PM (CDT)
Day +1
Hello everyone!! Riley received his stem cell transplant at 2:30 a.m. on Saturday, June 8, 2002. Since it was in the middle of the night, he pretty much slept through it. Riley had his Memie, Daddy, me and his aunt Barbara from Dallas here in his room for the transplant. It took about two hours for the whole transplant process. When everything was over, Rick went to sleep on the folding bed and I curled up in the bed next to Riley. Saturday, Rick stayed with Riley while I spent time with Sydney, Memie, Aunt Barbara and Uncle Paul. Later that day, Rick and Paul went to a baseball game. Rick stayed with Riley on Saturday night. Rick sure does miss Riley and I miss Sydney. It seems every time I would put Sydney down, she would yell out "Hold You!" And of course, I would hold her. She is getting to be so big and is learning all kinds of new words. Riley is feeling a little gaggy through out the day and has been tired the past day or so. I am sure he will gradually get his energy back in the next few days. He really is taking everything well. He did receive blood this morning, so he may be a little tired from that. But really, I think Rick and he played really hard this weekend. We had a wonderful time with our family and of course, it was hard for them to go. Rick and Sydney will be back in a couple weeks with Rick's parents, which I know they are looking forward to seeing their little Riley. I wanted to let everyone know that there was an article in the Community section of the Daily Oklahoman last Thursday, June 5. I had called them to do a story on Riley and how people can make a difference in someone's life by being a living donor. If you did not get to see the article, please call the paper and see if you can get a copy or try the web site - www.oklahoman.com. The writer was Karen Klinka and she did a wonderful job. We want to thank everyone for all of their prayers for Riley during this time. Well I must go for now. More tomorrow.
xoxoxox.......
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl on there way back to Del City
Monday, June 03, 2002 at 12:48 PM (CDT)
Day -4
We do not have a computer in our room yet, so I apoligize for the delay in this update. Riley started his chemo last Thursday. He is doing fine. He has only been getting sick in the mornings, but it is gradually slowing down. Transplant will be sometime Friday. He is still quit active and enjoys seeing anyone that comes to his room. We had so many of the nurses and aides come by and see him and give him hugs. He really liked that. Everyone was so happy to see us back and are very hopeful for this second transplant. Please remember that we knew with the first transplant that Riley had a fifty/fifty chance of surviving. With this second one, his chance of surviving is decreased. Please keep him in your prayers. We pray each day for this transplant to take and for there not to be too many complications. Rick and I are so proud of how Riley takes everything in stride, nothing seems to bother him. Although, I am sure he does miss everyone in Oklahoma. We are so lucky to have so many family and friends that care so much about our family. Thank you for everything to everyone. I will update when I can until I get the computer in our room. We are expecting visitors this weekend...Daddy, Syssey Girl, Memie, and Aunt Barbara & Uncle Paul from Dallas. Please pray for their travel to be safe.
xoxoxox.........
Jeanne & Riley Bear in Minneaplis
and
Rick & Syssey Girl in Del City
P.S. We want to congradulate all of the graduates this year:
Tosha from high school in Texas.
Sarah from high school in Del City.
Shelly for receiving her degree.
Brent for receiving his medical degree.
Pa Taylor for receiving his high school diploma...a ceramony was held in Morris, Oklahoma for those that joined the service before completing high school and receiving their diplomas.
Saturday, May 25, 2002 at 04:59 PM (CDT)
Day -13
We hope everyone has a nice Memorial Day weekend, but please don't forget the meaning. Our family asks that you remember your loved ones who have gone. Please remember our transplanted Minneapolis families that have been here and lost their loved ones....Alexis, Andrea, Soumner, Brady, Caleb, Kacie and Carley.
Riley and I have had a very nice week. We have been working on learning different body parts. He already knows eyes, nose, mouth, ears, hair and toes. We worked on hands, foot, leg and finger. We tried knee, but he wasn't to sure about the "n" sound. He wakes up each morning naming as many body parts as he can. I then ask him where the ones are that he didn't mention and he shows them to me and repeats me. We also worked on strengthening his thighs. We have been playing catch and he is getting really good at trying to catch the ball. Of course he has always thrown quite well, but is getting better at aiming. His Memie sent him some Scooby Doo movies and he just loves them. His cousin Tiffany sent him a Scooby Doo box. We were going to put crayons in it, but I found that it holds small toys and books better for going to the clinic. I am getting our things ready this weekend to go into the hospital on Wednesday. The pulmonologist will do another broncoscopy on Riley in the pediatric ICU on Wednesday at 1:00 p.m. to make sure there are not concerns.
From what I here from home, Sydney is being quite a good girl. Here Great Grandmother (Nanny) said she is the best child he has seen in a long time. She said she minds and doesn't bother anything in the house that she isn't suppose to. Sydney really enjoys visiting her Nanny and Paw Paw. I have also heard that she enjoys playing dress up and barbies with her cousin Payten. She is too young for this, she is not even two years old yet. But I am glad that she is having a great time. We wuv her and miss her and everyone else so much.
Well this is all for today. I will probably update on Tuesday before we go in and from there I hope to be able to update everyday. It may take a day or two to the computer in Riley's room, so there may be a delay in updates. Miss everyone so much!!
xoxoxoxox........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
P.S. Happy belated Birthday to Paw Paw on May 22nd.
Tuesday, May 21, 2002 at 10:27 PM (CDT)
Day +50 / Day -17
Today would have marked Riley's half way point of his 100 days post transplant. But we will put that behind us and move forward, this is where the Day -17 comes in. We have a transplant day of Friday, June 7, 2002. We will admit into the unit on Wednesday, May 29, 2002. Riley will start chemo on Thursday for seven days. The following Thursday he will receive Total Body Irradiation (TBI) and the transplant on Friday. We are expecting to have Daddy, Syssey, Memie and Aunt Barbara here for a few days during his transplant. I can't remember if I have already mentioned that Riley's donor has agreed to donate stem cells. This will be much better for Riley. The donor will receive the growth factor medicine through an IV over five days, out patient at her donor clinic. Then on day six, Riley's transplant day, they will hook her up to a machine and have an IV in both arms. The machine will draw her blood from one arm and filter it into the machine for stem cells. Once it has filtered out the stem cells, the machince will replace her blood through the other IV. Wow!! I pray all goes well for her. I have seen a friend donate platlets for her father, similar draw procedure, and I just about passed out!
Riley and I have been doing fine. We have been going to clinic on Mondays and Thursdays. All seems to be going well. I have managed to keep his meds straight and pretty much on schedule. We play and watch movies. I encourage him to eat, sometimes he will and sometimes he won't. He does drink though. Some of you may not remember, but Riley didn't loose all of his hair. He still has some of his blond hair, but now he has dark brown new hair growth. It is about half an inch long. This is caused by the CSA medicine that is taken during transplant that is to help prevent graft versus host disease. The new hair growth doesn't stop at just the head, his eyebrows are a little darker and his hair on his back is still blond but is getting thicker there as well. When he stops taking CSA, his hair will grow back really dark and curly. He will probably have long hair on his arms, legs and back as well, it is just part of the medicine getting out of their system.
Well I will close now. I want to thank everyone for visiting Riley's webpage and keeping us in your thoughts and prayers. I will do better at updating the page more often.
xoxoxoxo..........
Jeanne & Riley Bear in Minneapolis at the Apartment
and
Rick and Syssey Girl in Del City
Prayer Request & Updates:
CJ and his family are adjusting well in South Carolina.
Elliot and his family are doing well also.
Morgan is 100% engrafted but is still on the ventellator.
Luke may have been exposed to the chicken pox and possibly delay his transplant.
P.S. We want to wish Payten a Happy Belated Birthday! We wuv you and miss you lots!
Thursday, May 16, 2002 at 12:45 AM (CDT)
Day +45
NEWS FLASH!! NEWS FLASH!! NEWS FLASH!!
Just wanted to let everyone know that I have put a couple of pictures in the photo album so please check them out. Sorry it took so long to put others in there. I will try to change them every couple of weeks since there is a limit of three at a time.
Riley had a pretty lazy day. I guess all the playing with daddy sure did tire him out and finally caught up with him. We go to clinic tomorrow. Maybe they will have an admission date for us. As soon as I know, you will know.
I wanted to wish all of our mother friends a Happy Belated Mother's Day! I hope you had a wonderful day. It is a blessing and a miracle when you become a mother and a lasting treasure.
Well, more later!
xoxoxox......
Jeanne & Riley Bear in Minneapolis at the Apartment
and
Daddy & Syssey Girl in Del City
Tuesday, May 14, 2002 at 10:24 PM (CDT)
Day +43
Sorry for not updating in the past few days, but here is what has changed. Rick came in on Friday afternoon. That day Riley received some antibodies to help boost his immune system for when he is out of the hospital. Riley developed a fever later that night so they said they wanted him to stay the night so they could watch it. It went away the next day as it was from the antibodies. I packed our hospital room up on Saturday. The doctor came by and said we could leave after Riley received some blood. Riley's level wasn't too low, but by doing it in the hospital it would keep us out of the clinic for three hours. For those of you that don't know, I tried very hard to keep Riley in the hospital to prevent him from getting sick before the next transplant. Well, it didn't work, so they are doing what they can to minimize our clinic visits. The doctors said he thought there was a new transplant date of June 7, but it wasn't set for sure. He did tell us that the donor has agreed to do the stem cells. This will be much better for Riley. We left the hospital Saturday evening and went back to the apartment. Riley slept so well that night. So did I since Riley and I had more room, but he still wants to know that I am right there and only an arm, or leg, reach away. Riley came home on a feeding tube since he is not eating. This is working out okay, at least I don't have to fight with him over his oral meds. I just put the meds in his tube and he doesn't even taste them. We had a wonderful weekend together and I had a very nice Mother's Day, with the exception of not having Syssey Girl here with us. We took Riley to clinic on Monday morning. All of Riley's blood work was fine, his own marrow is growing fine. We found out that Riley will have his second transplant on Friday, June 7, 2002 and he will more than likely receive the same chemo and radiation treatments. Riley will be admitted at the end of May. We will go to clinic on Mondays and Thursdays. Riley really enjoyed his daddy being here, so did I. Rick left this afternoon to go back to Oklahoma. Rick will be back with other family members in about three weeks for Riley's transplant. We want to thank everyone for their prayers. Please pray that Riley stays healthy until we can get things going again. More later.
xoxoxox........
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Wednesday, May 08, 2002 at 10:17 PM (CDT)
Day +37
We finally got to meet with the doctor today. They are working with our orginal living donor for Riley's second transplant. The doctors want to see if she would be willing to donate stem cells instead of bone marrow. Riley would benefit more from the stem cells than the bone marrow. If she agrees to the stem cells, there would be about five days that she would have to receive the growth factor medicine and some monitoring. Then they would hook her up to a machine to draw her blood out. The machine would then spin her blood and take only the stem cells and then flush her blood back into her body. I hope I have understood that correct and explained it right. If she is not willing to do this, she is availible to do the bone marrow. All the communication between our BMT Clinic here in Minneapolis and her donor facility, has to go through the National Donor Registary, so this could take a week or so to get an answer from her. She is given the information about the pros and cons for both procedures done on what she will go through and how Riley would benefit from each of them. It is also stressed of the urgency of the transplant for Riley and that an answer is needed rather fast. The doctor felt that we would be able to start in about three to four weeks. Riley would have the same chemo and radiation regimen that he had before. The doctors are still afraid to give him anthying stronger and also remember that his system is already supressed some from the last treatment and hasn't completely recovered. I was told today that the last test they did to see if there were donor cells came back at zero. The doctor did say that when Riley's test did show he had some donor cells, that he did have an enzyme level. This enzyme may have given him enough to start to work, but because the donor cells didn't continue to grow, the enzyme did not survive. Riley is doing fine, we are finally getting back to a normal sleep pattern. I have been able to get out each night this week and spend it with Mandy. I am going to miss her, Jamie and CJ so much. They will back in June for a six month check up. Well that is all for now.
xoxoxox........
Jeanne & Riley Bear from Minneapolis
and
Rick & Syssey Girl from Del City
Prayer Request:
CJ, Mandy and Jamie to have a safe trip back to South Carolina.
Morgan to recover from pneumonia.
Luke to came back soon and get started.
Rick to have a safe flight from OKC to Minneapolis.
P.S. Happy belated birthday to Aunt Karla on May 6! We Wuv You and Miss You!
Sunday, May 05, 2002 at 11:16 PM (CDT)
Day +34
Sorry for not updating the last couple days, but nothing has really changed. Riley has been trying to drink more, but due to the NJ tube in his intestines, things don't pass from the stomack as fast. This then causes him to get sick. He has been in a better mood today. We have stopped giving him the phenergin for vomitting. All it was doing for him is make him sleepy. His weight is still up, but the doctors say that he is not retaining fluid, he is just gaining weight from the feeds. He hasn't been very active over the past week, so he is just putting on the weight instead of burning the calories. We are still waiting to find out when the next transplant will be. The doctor that is working on it is out of town until Monday. Maybe we will know something in a day or so. Riley is getting so much better at talking. He likes to watch Scooby Doo and one of the nurses gave him a book that makes sounds. When he wants it he says "book, Dooby Doo". It is so cute. He has become a little night owl. He likes to stay up until about 12:00 or 1:00 at night and then sleep until 9:00 or 10:00 in the morning. He then takes a nap around 5:00 for a couple hours. This schedule is fine, I just sleep when he does, just in case he wants to be up late.
Well we have some wonderful news. Our little friend CJ from South Carolina is going home this week. Mandy, Jamie and CJ will leave Thursday afternoon. We are going to miss them so much, we have become a part of each others family. I really don't want them to leave, but I know they want to go home. After all, they have been here since October and six months is long enough. They will be back at the end of June for CJ's six month check up, so we will be able to see them then. But, trust me, we will be visiting each other as often as possible as these boys will need to play together and celebrate life. CJ's grandma and Aunt Paige was just here, they are so happy for their little boy to come home. We want to thank CJ's family for the gifts that they have given us, most of all, a wonderful and lasting bond that nothing will ever break or replace. We Love You Guys!! Be careful and have a safe trip home.
xoxoxox........
Jeanne & Riley Bear in Minneapolis
and
Rick and Syssey Girl in Del City
Prayer Request:
CJ and family to have a safe trip home on Thursday.
Morgan for CT test that she will have on Monday.
Luke to return soon.
Elliot to continue to do well at home.
Susannah to continue to de well at home.
P.S. We want to wish Aunt Kim a belated Happy Birthday from yesterday. We Wuv You!!!
Thursday, May 02, 2002 at 11:46 PM (CDT)
Day +31
We have been in the hospital for forty-three days today. Riley is doing fine. His WC is 2,400. He had some vomitting spells this morning and was fine the rest of the day. He will have a barium swallow done Friday morning to see if they can see anything that could be causing his stomach problems. He is keeping his spirits up and enjoys having people come to his door and in his room. He has won the hearts of several nurses and aides, sometimes I don't know what I would do if they didn't enjoy him soo much. I know he gets tired of it just being me, but at least we have each other. Daddy will be here next Friday for a few days, we can't wait. The doctors are looking at the living donor for the transplant, but nothing is for certain yet. We just hope that we can get Riley started as soon as they know that this transplant didn't take. Keep him in you prayers as well as the other Hurler babies.
Wednesday, May 1, 2002
Day +30
Nothing really happened today. The new doctors started on the unit so they are busy learning all the patients. Riley is doing well, still getting sick, but he handles it quite well. His WC is 2,800. We are still praying that the transplant took, but we are prepared that it may not have taken and we will need to do another transplant. Which means we will be here in Minneapolis longer than we expected and away from family and friends longer. Although, we have created our own little family here in our "Hurler Bubble". We learn to be there for each other since our real families are so far away. We enjoy meeting the other families, everyone is so kind. Well I will go now, more later. Don't forget to sign our guestbook!!!
xoxoxox.......
Jeanne & Riley Bear in Minneapolis
and
Rick & Syssey Girl in Del City
Please Pray for:
CJ to be able to return to South Carolina soon.
Morgan to not have RSV again.
Luke to return in a few weeks for his transplant.
Elliot to continue to do well at home home, NH.
Susannah to continue to do well at home home, CA.
All of our doctors, residents, nurses, aides and staff to care for all of the patients in the 4E Unit.
All of the little ones who have gone to be with Jesus...Alexis, Andrea, Soumner, Brady, Caleb, Carley, and Kacie. We miss them and their families so much.
Tuesday, April 30, 2002 at 10:19 PM (CDT)
Day +29
Well it has been another day here on 4E. The unit is full, so many new faces with their prayers waiting to be answered. I want to thank everyone that got my message to say an extra prayer for Riley, we really need it. But we do understand that God has a plan for our precious little boy and we can only do what He wants us to do for Riley. We know we are where God wants us to be as he made it happen. We love Riley and know that he is happy as this is what God wants for all of his children. Please keep Riley in your prayers, and Rick & I, as we will need it if Riley needs another transplant.
Riley only got sick this morning. That little thing got up at 6:00 a.m., but was back asleep by 9:00 a.m. He had a good day, we just hung out and watched movies and played. I had a unit care partner for about an hour tonight. We just sat here and talked for a while, it was nice to give my mind a break. Riley's WC is 2,500. His urine output is not where it needs to be so he is getting more meds to make him go. The doctor suggested we go ahead and have a GI (stomach doctor) look at Riley to make sure there isn't something they are overlooking. This is where they may need to do a scope of his stomach. We hope to see them in a couple days. They are hoping to have the information on the donor and cord blood in a few days. The group of BMT doctors want to look at them and decide which will be best for Riley and also come up with a chemo/radiation plan for him as well. They would think we would start the second transplant procedures in a couple of weeks. I think it would be right after the last test results show zero donor cells. I really don't have much more than this, maybe tomorrow will be a little bit more exciting. We get knew doctors on the unit tomorrow...Unit doctor, residents and fellow. I will miss the ones from April, they were really great with us and Riley, but I am sure the next ones will be too.
Again, thank you to everyone for your e-mails, guestbook entries, phone calls, cards, gifts of friendship and most of all - your prayers. You have no idea how much we appreciate them.
xoxoxoxox.......
Jeanne & Riley Bear in Minneapolis
and
Rick & Sydney in Del City
Monday, April 29, 2002 at 11:19 PM (CDT)
Day +28
There really isn't much of a change. We are still trying to get Riley's vomitting under control. WC is 2,500 today. Riley was still a little rest less last night so again, he had a couple of good naps today. I was able to get out for a couple of hours, I needed the fresh air. The doctors plan for his stomack will take a few days. All of his oral meds are IV and they have increased his feeds and he seems to be tolerating them. It seems that when he drinks something, it just sits on his stomach and then it comes up an hour or so later. He has been in a good mood all afternoon and evening. He talked to his daddy and Memie tonight.
Rick and I are worried about the affects of a second transplant. This is why we are asking for everyone to say special prayers for Riley. Please pray that over the next two weeks his donor cells will start to grow and keep growing. If they don't grow within about two weeks, then we will need to do another transplant. Second transplants are much harder than the first ones. Even though Riley didn't seem to have a lot of trouble with the first one, there are still greater dangers during the second one. So, please include him in your daily prayers.
xoxoxox........Jeanne & Riley Bear
Monday, April 29, 2002 at 12:04 AM (CDT)
Sunday, April 28, 2002
Day +27
Riley is still getting sick. Riley didn't sleep very well last night, so we got to take some long naps today. WC are at 2,300. The doctors want to focus on what is bothering his stomack. They will start by changing his oral meds back to IV. Then they will slowly add one med at a time to see if it is a med that is doing it. If that doesn't work, then they will back off on the feedings and increase his TPN. Then the last would be to have a gastroentologist put a scope in his stomach to see if he finds anything. They are giving him a med to try and coat his stomack. He didn't get sick all day until this evening. He is still not eating or drinking. Riley and I just hung out all day.
We have some sad news. You may have remember a little girl named Kacie on my prayer request list. She went to be with Jesus last night. Please include her family in your prayers for their safe return home and the strength they will need in the weeks and months to come.
I want to thank Jody for calling me today, I needed that. Also we want to thank CJ's grandmother and aunt for the gifts they brought us today and for visiting us. I know they will have fun with their little boy this week.
Rick and I want you to know that we are not giving up hope on this transplant. We still have two weeks and know that a lot can happen and a lot of prayers can be said. Please pray for the cells in Riley's body to grow and for them to be donor cells.
Saturday, April 27, 2002
Day +26
Riley did his usual morning vomitting. Kim, Alan, Sydney and I ate lunch before they left at noon. It wasn't as hard for me when they left this time, maybe I was still focused on the news we got yesterday. WC are at 3,300. The doctors really didn't have much to say today, other than we will see what they tests in the next couple of weeks show. Riley and I just hung out together watching movies and taking naps.
Friday, April 26, 2002
Day +25
Riley is still having a time with vomitting. WC are 6,700. The doctors said they are expecting some test results back today and would come by when they got them. Riley seems to be doing okay with is tube, but is still getting sick. The doctors came and got me when they got the results back. They said that there wasn't enough cells growing to determine if they are Riley's or the donor. This means that it has dropped from being 3-4 percent on last week's test. They talked to me about doing another transplant. They already know there is still another cord blood that matches and the donor we had already checked out. The doctors want to get more information on these two and review them to see which would be best for Riley. Also they would have to do a stronger chemo and radiation than what they have already done. They feel that we went too light on these treatments and it didn't supress Riley's system enough. We will wait a couple more weeks on blood work to see if cells will grow. Please pray that the cells grow and that they are donor cells. I asked the doctors to explain this to Kim, Alan and Rheta while I talked to Rick on the phone about it. Rick then spoke with one of the doctors. Rheta and I took Sydney to the mall, we were both pretty quiet but it was nice to get out. Sydney cuddled with me, she must have known I needed it.
Thursday, April 25, 2002
Day +24
Rheta had called the apartment and said that Riley's feeding tube was clogged and they were going to try to unclog it. I got ready and went up there. They were unable to unclog it. The doctors came in and suggested trying to place the tube in his intestines. This would go past his stomach and hopefuly try to keep him from getting sick. They will do this in the afternoon. WC are 1,700 so he will get the growth factor med. Rheta and I stayed here with Riley while Kim, Alan and Sydney went to the Mall of America. Sydney came up and visited later, but Riley still isn't feeling well. Riley's weight has gone up so they are giving him more diaretics. His potassium and creatine levels are fine. I went to a class to learn how to care for Riley's NG tube. Rheta will stay with Riley again tonight.
xoxoxoxo.....Jeanne & Riley Bear
Thursday, April 25, 2002 at 12:26 AM (CDT)
Day +23
This is going to be a short one because Syssey Girl is being a screamer. Memaw tricked us and came with Aunt Kim, Uncle Alan and Syssey Girl! How dare she do that! We are glad she came. Unfortunately, Aunt Cindy was right, we now have "two" "only children" from them being seperated. Aunt Cindy and Tiffany, I think you may need to come for a visit and straighten them out. Knowing them, they would probably make them worse, if that is possible. Riley's WC dropped from 5,200 to 2,400, but docs reassured us not to worry. He said Riley will probably get the growth factor a couple times a week. Riley has kept his tube in, alright dude! We have only experienced a couple of vomitting episodes today. He started slow feedings through the tube this afternoon and has done fine so far. Feedings are like Pediasure, but a little gentle formula for the tummy. They will slowly increase them and decrease his TPN(nutriction through IV). He has kept down all the oral meds except one, but we were able to repeat it later. The feedings seem to agree with him so maybe it is helping the meds. He is also getting regalin to help push some of his "flem balls" through his digestive system instead of them being thrown up. His potassium and creatnin(urine output) is doing fine. We just need to get his feedings increased and make sure there are no more frequent vomitting spells. Well I will close now so Syssey and I can go home and get some sleep, Memaw is staying with Riley tonight. We are really happy to have our visitors and are glad they made it here safely.
xoxoxoxox........Jeanne & Riley Bear
Tuesday, April 23, 2002 at 11:06 PM (CDT)
Day +22
Wow!! What a day! Riley did great during his biopsy procedure. They were also able to place the NG tube and test him for RSV. Riley hasn't bothered it much, only rubbing his nose. We have it taped in place so he can't get his thumb hooked in it and pull it out. For those of you who don't know, Riley has to go to sleep holding a blankie and have his thumb in his mouth. The nurse wanted to test him for RSV because he was caughing, but it came back negative. We had some more problems tonight with him vomitting. The nurse gave him two meds in the tube and they came up within fifteen minutes. We decided to give him his full dose of fenegrin(spelling?) to help with his vomitting. He went to sleep and we waited after we gave him two meds. He kept those down so we went for the other one, waited and he kept it down. He just has one more oral to take tonight and we only hope that it stays down as well. The nurse said the resident doctor said we could also try benadril. If we have problems tomorrow with vomitting, we will use it since I can give that to him at home. The bone marrow biospy prelimenary results show that there are a lot of cells growing. The test result that the docs are really looking for will be back in about five days. They are wanting to know who's cells are growing. We should have yesterday's blood work back by the end of the week to see if cell percent has increased. I am not sure when we are getting out. I have a class Thursday on how to care for the NG tube. I will have to administer Riley's meds and feedings through it. Riley is still not eating, I am hoping Sydney's arrival tomorrow will encourage him to start eating. If not, it will come in time. If you are wondering, the tube is placed through Riley's nose, down his throat to his stomach. From his nose, it is taped to his nose, cheek and behind his ear. The poor little thing, you would think he was a wrestler who got hit in the nose with as much white tape as we have on it. The nurse said "look, it's his breath right strip!" HA HA!! I am just hoping that his vomitting gets under control. He doesn't seem to feel bad. He just gets sick for a few minutes and then goes on. What a trooper we have! We are soo soo proud of him. We can't wait for Kim, Alan and Syssey Girl to get here tomorrow. We miss everyone so much. Please pray that they have a safe trip and for Riley's test to come back showing donor cells growing. More tomorrow and God Bless!!
xoxoxox....Jeanne & Riley Bear
Monday, April 22, 2002 at 10:12 PM (CDT)
Day +21
Well today was just a little rough. It seems that any time Riley sees the syringes with meds in it, he just starts gagging. So needless to say, he hardley kept any oral meds down. I talked to the doctors and they will put the tube back in tomorrow when they have him sedated for the bone marrow biopsy. Riley has been in a good mood all day, even after he gets sick. He has been so great through all of this. We pray that he continues to keep it up. The doctors feel that if he does okay after the biospy, then we will be able to return to the apartment within a couple days, just in time for Syssey Girl. Wow, these two are going to have some fun. When the weather gets better, we are going to try to get out for walks with CJ and maybe go to the zoo. I haven't updated his WC for a few days so here they are: Sat - 1,900; Sun - 1,300 and today 4,000. Todays went hirer because they gave him the growth factor. He may have to have this med every other day or every few days for a while. The doctor said that the meds that he leaves here on are they only ones he will need to have. They will not add any to him, only take them away slowly. If he gets an infection or fever then they will add some other meds. So it looks like he only has about 6 or 7 right now. His potassium has been doing fine and so has his peeing level. He still does not have any infections or a fever going on. I will need to take a class in a day or so to learn how to care for the tube and do the feeding in through the tube and/or IV. I guess that is it for now. I hope I am providing enough information for everyone to have an idea of what is going on with Riley. If I am not, please e-mail me and tell me what else you want to know and I will start adding it. If you want to research any more on Riley's disease, you can go to www.mpssociety.org This is a good place to find out about others and find other links. But let me tell you, it can be overwhelming, so just read a little at a time. Rick and I want to thank you so much for everyone's prayers and support during this journey of our life. Riley and Sydney are so precious to us and to you. We truely treasure each and every moment we are aloud to have with them. I must close for now, have a wonderful day and may God Bless each of you.
xoxoxox.......Jeanne & Riley
Sunday, April 21, 2002 at 11:34 PM (CDT)
Day +20
Can you believe it? It snowed all day today! Yes, I said snow. Althought it was very pretty. Riley did a little better with his oral meds. We only had one tonight that didn't stay down, after two attempts. I did discuss the tube issue with the doctor today after last night. The doctor still thinks it would be best for both Riley and myself. I told him I would see how he does after a couple days of oral meds, he said that was fine and they would do whatever we wanted. Riley had to receive a dose of the growth factor since his counts dropped some, but hopefully they will be back up tomorrow. I was able to go eat dinner with our family care partner tonight. It was nice to get out. We can't wait for Kim, Alan and Syssey Girl to get here on Wednesday. Riley and Syssey miss each other. Well I better go as it is getting late and Riley is telling the computer night-night. More tomorrow!
xoxoxoxo.......Jeanne & Riley
Saturday, April 20, 2002
Day +19
(I did not update on Saturday so I am putting it at the bottom of Sunday's entry.)
Riley and I had a pretty lazy day. The doctors still say he is doing quite well. The resident said he has two more meds to go oral...MMF and Clariton. She said they will do these on Monday. She thinks that if he continues to do okay with his oral med and does okay after his bone marrow biopsy on Tuesday, he may get to go to the apartment on Wednesday. Wow! That would be great, but we will see. Riley did fine with his oral meds during the day, but at night, that was a different story. He had five of them to take. We repeated two of them twice and didn't attempt a third time. Got one down with only one try and another down after two tries. The last one, forget it. I barely got it in his mouth and he gagged and threw up. So much for the doctors saying he is doing well at taking oral meds. I think I will talk to them about the tube issue again. That was pretty much our day. I am still hoping the oral meds get easier. Have a wonderful day and please sign our guest book.
xoxoxoxo........Jeanne & Riley
Friday, April 19, 2002 at 10:57 PM (CDT)
Day +18
When I woke up this morning, I knew that today had a certain meaning to it. Unfortunately, it didn't hit me until this afternoon that I remembered it was April 19, the anniversary of the Oklahoma City Bombing. This day brings back so many emotions for many who were and were not affected by The Bombing. I have serveral memories of that day. The one that stands out most is how much we all wanted to be with our loved ones. I remember telling my friends to go home to their families and give them hugs and hold them tight. I did not have Rick, Riley or Sydney in my life then, but every year on this day, I give them a big hug and remind them how special they are to me. I ask you to do the same but to also say a prayer for all of the victoms and their families. They will forever be in our hearts.
Riley's WC today is 1,700. He received blood today and platelets yesterday. We have added more oral meds. He cries when I have to give them to him, but he keeps them down and is fine afterwords. I hope this part gets easier as it just breaks my heart to have to hold him down and see him cry that way. For those of you who have ever spent time with Riley, know that he never cries so you can understand how hard this is for me. Oh, how I wish he would have kept that tube in for his meds. Other than that we are doing fine. We are expecting visitors next week. Aunt Kim, Uncle Alan and Syssey Girl will be here Wednesday evening and stay until the weekend. Oh, we can't wait to see them! We really can't wait to see Daddy on Mother's Day. Well that is it for now as it is late, take care.
xoxoxoxox.......Jeanne & Riley
Big Hugs to Everyone!
Thursday, April 18, 2002 at 10:31 PM (CDT)
Day +17
Well we have wonderful news. Riley's test came back showing he has about 3-4% donor cells growing in his little body. The doctors say these low numbers are normal for cord blood. As long as the next tests are either the same or greater, then we should be doing okay for a good start. They will do more blood work and a bone marrow biopsy on Monday. The doctors have started with more oral meds...potassium and lasics. Since he still getting some potassium through his IV and orally, they had to hook him up to a heart monitor. Don't worry it is just a procedure they must follow. They are trying to get him to keep enough potassium in his system as he keeps peeing it out from the meds that keep his kidneys flushed out because the CSA can cause damage to the kidneys if it stays in the kidneys too long. Wow! I hope you got all of that! Riley is still doing fine and so am I. I know Daddy and Syssey really miss us (just as much as we miss them), but we hope they will be able to come and see us soon. Riley's WC for today is 2,100, which is up from yesterday. Oh, Riley Bear, you are doing soo good!! We are soo proud of you!! I must close now as he is wanting me to go night night with him. Please continue to keep him in your prayers and hearts, we love him soo much.
xoxoxoxo.......Jeanne & Riley
P.S. Syssey Girl, continue to keep Nanny and Paw-Paw entertained and a smile on there face. Give them a big hug and kiss from Mommy and Riley! We wuv you and Daddy!!!
Prayers for:
CJ to continue to get over his virus so he can go home.
Kacie who is doing good.
Morgan who has started chemo.
Luke who will be traveling to Minneapolis soon.
Gailon in OKC for good test results.
We are sad to let you know of Carley. She went last night to be in heaven. We ask that God comfort her family.
Also for the other Hurlers children's families who's babies are now in heaven...Alexis, Andrea, Soumner and Maddison. Other 4E loved ones...Caleb and Brady.
Thursday, April 18, 2002 at 08:24 AM (CDT)
Day +16
(There was a problem with the computer server last night and this didn't post.)
I can't remember if I put Riley's WC in here yesterday or not, so they were 2,100 and today 1,600. They are dropping because he is off of the growth factor med. If they continue to get too low, then he will be put back on growth factor. The dotors want to see how his cells grow without it. Riley was still tired from his experience of trying to get the tube in him last night. His poor little face was a little brused and swollen from us trying to hold him. He did fine with his oral meds today, except one. The doctor said he would try to get it change from generic to claritin name brand. Our goal is to get Riley to take all of his med orally so we can leave. We can leave the hospital doing oral meds and TPN with some assistance of home healthcare. TPN is his nutrition until he starts eating. The doctor is still happy that Riley is doing good. He still does not have any temp or infections going on.
Riley is still being his cute little self. Yesterday, I was holding him and he was facing me. He put his hand on my face and looked at me and said "Sorry". I said "Sorry, for what?" Then it came, he "boxed" me in the cheeck and said "Sorry". I with held a little from the tostito story in yesterday's entry. After Riley licks the flavor off, he then puts the chip back in the bag. And later, I go through and throw them away. Well we decided while we are in the hospital, Riley can learn to drink from a cup. We are on tile floor and the linens are changed everyday, so why not?! He is doing very well. I make him hold the cup with both hands and if he gets too much and coughs a little, then he will learn. He has not spilled any, yet. I have offered him is sippy cup and he doesn't want it, he says "Cup". He is doing so good and we are so proud of him. I give him lots of hugs and kisses every day and tell him how wonderful he is and what a trooper he is being. We pray that the donor cells are growing and that he continues to do well, would you please do the same?
xoxoxoxo.......Jeanne & Riley
Please pray for:
CJ to get over his virus safely; Carley who is not doing very well; Kacie who is starting to say a few words and for her to get some rest; Morgan who just started chemo today; Elliot who just made it home a few days ago; Luke who will be here at the end of the month; Gailon our friend in OKC who is going through some test; and all the others on 4E that we have not met.
Tuesday, April 16, 2002 at 11:14 PM (CDT)
Day +15
Riley is doing just fine and so am I. We have a new doctor in the unit for the next several weeks, the unit doctors all rotate and it's time for them to rotate. He said that cord blood transplant is his specailty. He wanted us to understand that when the test results come back, that the percents will be much lower than that of a bone marrow transplant. He said Riley is doing good from all the reports he has gotten. The doctors and I decided to go ahead and put in the tube for his meds. Well, unfortunately the nurses got the first one in and in about an hour he pulled it out. Then the night nurses tried two more times and it didn't work. I told them not to worry about it that he really doesn't throw up the meds, he just sometimes gags on them. If I saw where he really needed one later, then I would have the clinic put it in, unless these doctors feel he needs to have one in anyway. Riley ate a half of piece of bacon today and drank plenty of water. Another thing that he likes is the Tostitos Hint of Lime chips. He doesn't eat them, he just licks the flavoring off of them. Thanks Aunt Barb!! Well that is about it. Have a wonderful day!
xoxoxoxox.......Jeanne & Riley
Monday, April 15, 2002 at 11:07 PM (CDT)
Day +14
Oh my, I just realized that it is tax day. I hope everyone got their taxes done! All is going fine. Riley's WC are at 5,100 today. The doctors say he is still doing fine. He isn't running a fever and does show in his blood work that he has any infections. We just need to patient and wait on the test results to see who's marrow is growing, the results may not be back until next Monday. They said they run the test on them twice and it may take longer. Now I know what all the other parents mean when they say "It's a waiting game." Riley is still getting his CSA as a 24 hour drip. They have taken him off of his growth factor med to see how well his cells are groing on their own. He still isn't into eating yet, but drinking plenty of water. We started his clariten again today, he didn't enjoy that too much. Also he got a replacement for the penicillian. He tolerated it better. Some of the mothers and nurses recommend putting a tube in his nose that goes to his stomach to give his meds by. They say you don't have to worry about them coming right back up or gagging on them. I will talk to the doctors tomorrow about it and get their opinion so if we do want to do it, they can place it before we get out of the hosptial. The doctor said it is possible that we may get out next week if Riley continues to do well and doesn't start getting a fever or an infection. This will be good since Riley's Aunt Kim and Uncle Alan and possibly Daddy and Syssey Girl are coming to visit for a few days. Riley's hair is starting to thin out some more, but he started out with soo much. I will probably need to cut it all off this weekend or next week. The weather here was 91d today, but it is suppose to rain tomorrow, so who knows. I got out today and it was really pretty. When Riley gets out of the hospital, we will need to get him some summer clothes since it is warmer here than what I thought it would be. Well I will go for now. Thank you for visiting and please sign our guest book as often as you want, I look forward to reading all of the entries each day. Thank you for all of your prayers.
xoxoxoxo.......Jeanne & Riley
P.S. For those of you who are wanting to visit us here in Minneapolis, my sister Kim has a callendar started. This will make sure we don't have too many people here at once and that we have plenty of visitors during our stay. If you don't know how to contact her, just e-mail me. Thanks!
Sunday, April 14, 2002 at 10:48 PM (CDT)
Day +13
Today was just a lazy kind of day. WC today is 4,400. Riley received platelets this morning and did just fine. We need to wait another day or so to get him out of his room, one of his levels needs to be above average for two-three days in a row. That is fine. They have changed from giving his CSA three times a day to a 24 hour drip. This way he will still the amount that he needs, just not all at the same time, which will harm his kidneys. His stomack has decided it doesn't like one of his oral meds, so we are going back to IV for a day or so and the doctors said they could probably give him a different oral med in place of it that would be better for his stomack. He still is only drinking water today, but quite a bit. He didn't take any bites of food except for a few french fries. All I can do is keep trying to see what he wants. The nurses say after transplant that their taste buds change or that they can't taste anything for a while. But it should improve in a week or so.
We understand that Syssey Girl has become quite the climber at home. Syssey, I guess you are just keeping them on their toes!! We miss everyone at home, but know that they are coming soon to visit.
Rick and I want you ask you again to keep Riley in your prayers this week. Please pray for his little body to have the donor marrow growing strong in it and to keep Riley healthy and strong. Thank you.
Well I need to go as I have my own little monkey here climbing on the bed. Have a wonderful week.
xoxoxoxo.......Jeanne & Riley
Saturday, April 13, 2002 at 10:19 PM (CDT)
Day +12
Riley seems to have slept well last night. He had a very good day. His WC is 3,300. The doctor came in today and said that he is still doing quit well. She explained the process of testing Riley's blood on Monday to see who's marrow is doing all this growing. She reminded me of the chance we took when Riley only had a low regimen of chemo and radiation. There is a chance that Riley's marrow did not get wiped out enough for the new marrow. Rick and I understood this, as this was done to protect his lungs from being damaged even more than they already are. Riley's lungs can't heal unless he gets a successful transplant and he can't get a successful transplant unless he has healthy lungs. I know, what do you do? This is why we agreed to go ahead with the low regimen of chemo and radiation. Now on Monday, they will draw Riley's blood and will test it to see if it is his or the donor. These results will not be back until the end of the week. The doctor said the results can come back being all Riley's marrow or all donor marrow or both. If it is both, then they will retest him on the following Monday, with results being at the end of the week. If it is both, she said the donor could continue to grow more than Riley's, which would be fine, as long as Riley got enough from the donor to produce his missing enzyme. Please pray that the results from this test come back being the donor's marrow. The doctor gave us the go ahead to start getting Riley out of his hospital room. We did not get out today but have plans to do so on Sunday. He as been so great through everything. I think he is ready to venture to the other side of his glass doors. They have also reduced his TPN (this is his nutrition since he is not eating) from 24 hours a day to 18 hours a day. Also they have resumed giving him CSA (this helps the marrow graft) as his kidneys are fine and are at a good level. During the held doses of CSA, he still had enough of it in his system to do what it needed to do, but not too much to harm his kidneys. I forgot to mention that he got platelets yesterday and did fine. He doesn't seem to have any reaction when he gets platelets or blood. That is all for now. Please pray for Riley this week that his donor marrow is growing. Thank you for visiting and being a part of our lives.
xoxoxoxox........Jeanne & Riley
Riley is still charming all of his doctors, nurses, aides and therapist!!!
Friday, April 12, 2002 at 10:57 PM (CDT)
Day +11
Riley hasn't slept much the last couple nights, so we really played hard tonight. He is sound to sleep now, he looks so sweet. We have some white counts (WC) coming in. On day +9 WC at 500, day +10 WC at 1,100 and today WC at 2,000. This is really great! The nurse said that if he stays up the next couple days then he will be able to get out of his room. Although, this will be a challenge since we will have to get Riley to start wearing a mask anytime he is in public. The other parents tell us that the kids learn that if they want to go out, they have to wear the mask. Kinda like their hickman line, they just get used to it. The doctors still say he is doing well. He is drinking more but still not too interested in food. I will keep working with him. Riley started taking an oral antibiotic today. The nurse said this will replace some that he was getting through his line and also this is one of the steps to getting out of the hospital. I am not sure if you remember, but Riley will leave the hospital taking about fifteen different oral medications a day. He did fine taking the medicine, but the bad tasting ones will come soon. I was able to get out today for a break. It was so pretty outside here. I felt so much better when I came back. Riley and I had lots of fun playing in the floor. We are still working on putting two words together and he does so if you encourage him, and I do that as much as possible. Well it seems that Sydney is having fun with her aunt Karla. They have been going to see my grandparents, Nanny & Paw Paw. Karla says she is such a helper and they enjoy seeing her. Sydney is also having fun with her cousins, Colten and Payten. She calls Payten, Paytie. I can just see her doing that. I expect Karla to be sending her home in a week or so covered in mud!! Oh, how we miss everyone so much, but I think we may some visitors coming soon. I hope to update with more increasing WC results tomorrow and test results next week. Got to go for now.
Prayer Request:
CJ, Carley, Kasie, Gailon and the others on 4E.
We have some sad news. Our friend Caleb went to heaven early this morning. Our heart breaks for Amy and Steve, Caleb's little sisters and family. We pray that God will comfort them. You can visit his web page at www.calebglover.com
xoxoxox.....Jeanne & Riley
Thursday, April 11, 2002 at 10:28 PM (CDT)
Day +10
Riley continues to do well. The doctors said they will start testing on day +14 to see if the donor's or Riley's marrow is growing. Riley is still very active and now wants to get in the floor more often to play. I feel like a mother hen because I have to keep a close eye on him with his lines. The lines are not very long and I keep having to stop him on every step he takes so that nothing happens. We have a mat that I put in the floor and we sit there and play for a while. I know these last entries have been short, but in a way that is good. Oh, he has not gotten sick in the last couple days and his bottom did clear up. Well there really isn't much more to say so I will go.
Please pray for:
CJ who is waiting on test results.
Elliot for a safe trip home to New Hampshire.
Carley, Caleb, Kacie and the others here on 4E.
Gailon who is waiting for test results (A friend in OKC).
xoxoxox.....Jeanne & Riley
P.S. WE WUV AND MISS YOU SYSSEY GIRL AND DADDY!!!!!
Wednesday, April 10, 2002 at 11:06 PM (CDT)
Day +9
Well this will be a short update. All is well here in Minneapolis. The doctors still say Riley is doing well and are still switching around some of his meds. Riley seems to keep the nurses and aides entertained. They all think he is soo cute and funny, even when he tells them bye-bye before they can get in the room. Our aide helped me wash Riley's hair tonight. He still has quite a bit of hair, but everyone says that one day I will wake up and it will be falling out in clumps. Until then it just comes out a few pieces at a time. As you pray for Riley, please pray for CJ, Elliot, Carley, Caleb, Kasie and all the others here on 4E and soon to be coming are Luke and Morgan. Forgive me for this being short, but Riley is wanting me to go night night with him. We miss everyone, take care.
xoxoxoxo.......Jeanne & Riley
Tuesday, April 09, 2002 at 10:43 PM (CDT)
Day +8
Hey, I finally got Riley's picture in the photo album. Some of you may have seen it and had to turn your heads. Well thanks to a friend, Rocky, he got it turned for me and I was able to get it on here straight. Riley has been doing fine today. He had a busy morning with all of his therapies and they all say he is doing great! Mandy and Jamie stopped by after CJ went to surgery. Unfortunatley, CJ is having to stay the night until he is completely awake and his oxygen stays up, but this shouldn't be a problem for him. I had a unit care partner come by and suggested I get out, so I did. It was nice outside and I went and sat with Mandy a little bit. When I got back to Riley's room he had so much energy to get rid of. He got down in the floor and went to the doors and played with some of the nurses and aides through the doors. He just threw his lines over his shoulder and was off! He was soo cute! Then he decided to get in the snack cabinet and found the froot loops. He actually wanted to eat them, so I let him and he kept them down. He also drank some water today! Alright, you go dude!!! The doctors still say he is doing well. The only concern they have is his urine output, so they have changed some of his meds around to see if that will help. They told me that this is common and not to worry too much as this happens during the first two or three weeks after transplant. We still don't know too much on his counts yet, hopefully we will see some by the end of the week. Riley and I have been doing fine the last couple of days with everyone being gone. But we have friends here, some of whom are leaving us, but that is okay. We get a couple of calls each day from home, these make our day you guys! And of course we love reading all the e-mails and guest book entries. We can't say thank you enough to everyone as you each have touched our lives, may God bless each of you!
xoxoxoxo........Jeanne & Riley
P.S. Rocky, thank you for your help with the picture! Please pray for CJ, Elliot, Carley, Caleb and Kasie.
Monday, April 08, 2002 at 10:14 PM (CDT)
Day +7
Riley is still doing good. The doctors were happy to hear that he had eaten some cheerios last night and he did keep them down. Riley is now taking an oral diaretic to help get rid of some of his fluid before it gets too bad. He had physical therapy and speech today. He really enjoys it and I usually take a break then so he will pay more attention to the therapist than me. He is in a really good mood and only had a two hour nap today. The doctors said that Riley's white count was still low so it may take it a few more days to start coming up. We just pray that they come in good and strong. One of Riley's favorite aides has come in tonight to visit him. They sit there and "box" with their fist back and forth. They are so funny and Riley justs laughs so hard and says "another one". We are still working on getting his art work off of his body from last night. For all of our Oklahoma State fans, he used orange and threw the red one away! Hope everyone had a nice day and we will write more tomorrow.
xoxoxox......Jeanne & Riley
P.S. Please pray for:
CJ who is having surgery on Tuesday morning
Elliot who is having surgery on Wednesday morning.
Carely, Caleb and Kasie here on 4E.
Sunday, April 07, 2002 at 10:46 PM (CDT)
Day +6
All has gone well today. Riley didn't sleep nearly as long today as he did yesterday. He has managed to eat a few cheerios this evening, I only hope he keeps them down. He had fun with his speech therapist this morning. We are working on getting him to put two words together. Since he is so warm, he just stays in his diaper and socks. Therefore he had a lovely piece of art work on his tummy, arms and legs while he was coloring. Oh well, as long as he was having fun. The doctors say he is still doing quit well. This makes me and daddy very happy. His bottom is starting to bother him from the frequent diaper changes. We are trying some new ointment that seems to be working. He still gives his nurses and doctors a hard time and then laughs about it. I am working on getting his picture on this site, but the ones I have are turned sideways. I guess you could turn your head! I am sure I will get it figured out. I want to thank everyone for signing our guestbook, it means alot to us. Please sign it as often as you would like. Riley is telling the computer bye-bye. That means it is time for me to finish and get him in bed.
xoxoxox......Jeanne & Riley
Saturday, April 06, 2002 at 10:29 PM (CST)
Day +5
Not a whole lot has changed. Riley needed to get some blood today. This took about two hours and he did fine. This is normal for transplant patients, they will need to receive blood and/or platelets often. Riley ate about a tablespoon of scrambled egg this morning, but it came up two hours later. I think his Memie and Memaw kept him up too late last night as he slept for four hours today. The doctors still say he is doing fine and will start testing his blood on day +7 to see if he is getting any white counts in. Riley and I miss everyone already. It was hard to see Daddy, Syssey, Memie and Memaw leave this morning. We wuv you guys! We are glad we got to have you all to ourselves for a week. We don't know when someone will be coming back, but we hope that it will be soon. Daddy and Syssey won't be back until Mother's Day and hopefully Riley will be out of the hospital by then. Well I better go, Riley is needing "more money" for his Pooh Bank.
Please pray for all of our Hurler friends and our friends here on 4E.
xoxoxoxo......Jeanne & Riley
Friday, April 05, 2002 at 09:37 PM (CST)
Day + 4
Well this is the last journal entry for dad for a while, as I am going back to OKC in the morning early.Hope you enjoy it.
The news on the little dude is still the same, all his counts and labs are right where they are supposed to be. According to the staff he is still A O.K. so needless to say I am very glad to report that little bit of encouraging info.
Riley is still in good spirits and just getting right back to his old honry self. He is standing up in his bed, climbing to the head of it and trying to dive off. I am sure he is tired of being in it, but here in the next few days if all keeps going well he will get to get down in the floor and play a little more. Speech and Occupational thereapist are coming in daily and working with him as much as they can. Although sometimes he is napping because he is somewhat still worn out from all the stuff he has been through, but he will get better. He is doing great and is getting better every day, his mother and I are so proud of the little guy, he is a real trooper.Well thats all for now.
Thanks for visiting,
KEEP PRAYING!!
LOVE,
THE JOINERS
Thursday, April 04, 2002 at 09:26 PM (CST)
Day +03
Greetings from sunny Minnesota.
Riley had a very good day today today. He was up most all of the day laughing, playing, and yes watching movies. The doctor said he was doing very well. They were kind of concerned because of such low doseages of radiation, and chemotherapy he recieved, but they said he was doing fine his white cell counts were down where they were supposed to be. that means the treatments he recieved did the job, he is right on track. Oh and if you were wondering he got such low doses of chemo, and radiation because of the damage to his lungs, he already has from being sick so much. Anyway back to Riley No worries to this point he is doing fine. Well three down and just 97 more to go, days that is. Sorry this entry was so short but this is dad's first journal entry, so bear with me I hope they will get better.
Thanks for visiting,
More tomorrow.
Wednesday, April 03, 2002 at 09:11 PM (CST)
Day +2
Riley has been quit the trooper today. Memie and Memaw stayed the night with him last night. This gave me and Rick a chance to spend some time with Sydney. Riley decided he wanted to stay up last night, until 2:30 this morning. He just wanted to lay there and watch the dogs on t.v. He is still getting nauseous but is not uncomfortable with it. There is some medicine to give him to help with nauseousness and pain, but it keeps him asleep. Rick and I agreed that he is not in pain from it and we didn't want him to be asleep all the time, so we will hold off until we feel he is lacking sleep or is uncomfortable. Riley was up for most of the afternoon with Rick and I. He was playing with a balloon and watching t.v., just hanging out and talking to us a little. The doctors and nurses say this is normal for this part of the transplant. The nurse said this morning that Riley's white count was low and that was good. Remember, we want him to have a low or no white count so that his body won't fight off the cord blood transplant. It will take 2-4 weeks before we know if the cord blood is working instead of Riley's old marrow. Once it starts working, then Riley will start feeling better, this is when the white counts start going up. Riley will be in the hospital for about at least 30-40 days, if there are no problems. Once he is discharged from the hospital, we must remain here for 100 days after transplant, again as long as there are no problems. During that time we will have clinical visits, physical therapy, occupational therapy and speech. He has been so good. He doesn't cry or fuss. The doctors, nurses and aides are really good with him. Rick and I are so proud of him. We know that Riley and Sydney don't understand what is going on, but only hope they don't remember it. They miss being with each other so much. Riley and I are going to miss everyone when they leave this Saturday, but they will be back soon. That is all for tonight. Thank you for visiting Riley's web page and don't forget to sign his guestbook, I will try to get some pictures on there tomorrow. Please continue praying for Riley and all the Hurler Children.
xoxoxox.....Jeanne
Tuesday, April 02, 2002 at 08:37 PM (CST)
Day +1
Sorry we didn't update last night after the transplant, but we were all rather tired. Riley's day had started with getting his total body radiation treatment at 8:30 a.m. Riley was given some anesthesia for him to go to sleep as he needed to be still during this 5-7 minute treatment. Once he came out we went to recovery and waited with him until he woke up. We then went back to his room and found out that his transplant had been changed to 4:00 p.m. This gave us more time to get the cameras ready and get Syssey and Memie up here. Memaw was with us all morning and was going back to the apartment to rest. We were so excited and overwhelmed when our nurse brought in the marrow. The hospital chaplin had come up and said a prayer with us and blessed the marrow. Memie and I cried, Syssey was being her busy little self, Rick held Riley's hand as he just sat there and watched. Memaw wasn't feeling well so she wasn't here, but came later. The marrow was in a little IV bag and was hooked up to his central line at 4:30 p.m. It only took thirty minutes for it to go into his body. We video taped and took lots of pictures. We finally had to send Syssey home with Memie as she was in the need for a nap. Memaw came up for a while. Riley did very well during the transplant. He had not been ill at all during his chemo. Riley's appetite had been slowing down the last couple of days, so they started him on IV nutrition. Riley will be on this until right before we get out of the hospital. Riley did okay through the night. Rick and I stayed all night with him. He woke up a few times and got sick, but it wasn't very bad and he went right back to sleep. He did the same thing all morning until they were able to give him some zantact in his IV. The nurse said this would help reduce the acid in his stomach so he wouldn't get sick. He had a much better afternoon. He is now in the mood to watch his movies. He is hooked on 101 Dalmations. Words can't express how we feel right now, as we felt that this day would never get here. We want to thank everyone for their prayers, e-mails, cards and phone calls. Riley is so lucky to have so many people care so much about him. I will write more tomorrow on what kind of schedule Riley will have here as far as being in the hospital and when he gets to go back to Oklahoma. We have some good news, one of our Hurler friends gets to go home in a couple weeks. Elliot, we wish you well. CJ will hopefully go home right after him. We wish them well and they know that they will be missed. We love you guys!
XOXOXOX........Jeanne
We want to say welcome to Hannah Pearl. Susan had her on Monday just a few hours before Riley's transplant. Both are doing fine. We can't wait to see them. Happy "Birth" Day to Hannah and Riley!
Monday, April 01, 2002 at 01:41 PM (CST)
Day 0
Thank you for visiting Riley's page today. Riley is a 2 1/2 year old boy who was diagnosed eight months ago with a rare genetic disease called Hurler's Syndrom. This rare disease is caused by Riley's body lacking an enzyme that breaks down certain protiens. The protiens are then "stored" in his body. Due to the storage, damage is done to his body. This damage will cause Riley to have a short life. There is no cure for this disease but there is a treatment of a Bone Marrow Transplant (BMT). This will give Riley the enzyme his body is missing. Although this will not correct the damage that has already been done to his little body. We have taken Riley to Fairview University Hospital in Minneapolis, Minnesota to receive a Cord Blood Transplant. After many months of waiting and several illnesses, Riley is now ready to receive his transplant. Riley has received several doses of chemo and one dose of total body radiation this week to prepare his body for this transplant. Riley will receive his transplant today at 4:00 p.m
A little about Riley. Riley will be three years old this June. He lives in Del City, Oklahoma with his mommy, daddy and sister Sydney. Sydney, or Syssey Girl, will be two in July. Riley lives near his Memaw, Pa Pa, Memie and many aunts, uncles, cousins and great grandparents who love him very much. And we won't forget their sitter, Susan. (Susan and her husband Justin are expecting their first baby today...we love you!)
Please say a little prayer for Riley today that all will go well.
Click here to go back to the main page.
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