If you would like to send a e-mail to Nicholas click here.

Nicholas' Journal February 2005

February 27 Thru Mar 2, 2005 Sunday - (Day +87-90) Outpatient - (Day 44-47) 

Nicholas has continued to do very well this last few days. He has enjoyed watching his shows on TV and going out a little everyday. He has been able to go outside and enjoys visiting Starbucks and McDonalds. His vocabulary has done very well and he learns new words everyday. He talks to everybody on the phone when it rings, answers and says "hellyoo." It is so cute. Please continue to pray for his fast recovery.

February 27, 2005 Sunday - (Day +87) Outpatient - (Day 44) 

Nicholas was a blast today. He was very energetic and acted very cute. The potty training has started and he said this morning "potty, Potty," while he was on the telephone but did not make it to the bathroom. We are almost there:):) He went to Starbucks this afternoon and ordered his coffee. He really likes to go there. His appetite was great today, a little better than usual. He ate, played with his can of monkeys, and watched Elmo. Nicholas is doing awesome, and we are a few days closer to going home. Please continue to pray for Nicholas, and the fast recovery of his bone marrow aspiration on Thursday. We love you Nicholas, you are doing great!!

February 26, 2005 Saturday - (Day +86) Outpatient - (Day 43) 

Nicholas had another wonderful day today. He called me early this morning wanting gold fish crackers from Albertsons, and Mcdonalds for lunch. After we ate, we all headed to Albertsons, but when we did not let him go inside he had a fit. He wanted to shop. We then took him to Starbucks and all of us had a coffee, yes including Nicholas. He loves white chocolate mochas. He really made an impression on the workers there. They thought that he was so cute. We went back to the apartment and stayed outside most of the day trying to work off some of the energy that he has. His mom started to pack and get ready to go home in a couple of weeks. He had a great day and wonderful evening. Please keep him in your prayers for a continued successful recovery.

February 25, 2005 Friday - (Day +85) Outpatient - (Day 42) 

Nicholas has been a "wild man" all day. I nick named him lil-stinker when he was born, but now he definitely fits the name "wild man" He has so much energy it is unbelievable. Nicholas is now answering the phone when it rings, and he will have a melt down if you do not let him answer it. It is so funny, he picks it up and says very loud "helllyooo" and proceeds to tell whoever that is on the other line his lunch order, where he wants to go, or what he is watching on TV. 

We talked to the doctors today about the 100 day work up and when we can go home. When Dr. Pulsipher called Nicholas answered the phone in his usual way and proceeded to tell the Doctor what he wanted from Taco Bell. It was hysterical. When we got on the phone he was laughing and said he wished that someone would bring him Taco Bell also. It was great that Nick talked to the doctor because 7 weeks ago he barely said 15-20 words and rarely said them, now he talks like a magpie, even talking back ( I guess that comes with the territory) Next week Nicholas has a Bone Marrow aspiration on Thursday (March 3, 2005), a Dental appointment, and a hearing appointment on Friday (March 4, 2005). On Thursday March 10, 2005 we will have an appointment with the doctors to go over all of the tests from his 100 day work up and then talk about the possibility of going home. Right now the doctor is confident that if Nicholas does not get sick, have a fever, or anything between now and then we will probably get to go home on the 11th of March. That will be day 98 in his work up and they told us in the beginning to expect to be here for at least 100 days after transplant. Home health will be set up, his local Doctors and hematologists will be confirmed, and we will be ready. We will continue to have weekly blood tests to test his cyclosporine levels and everything else and will also have to come down to Salt lake City 1 time a month for testing. The doctors also told us to start top take Nicholas outside and introduce him to the world again. This will help his body get and accept germs. It is time to start to rebuild his immune system. The doctors said to go to the movies and go to the park, but no large crouds, so we did. Nicholas went to the park and had so much fun. He also went shopping at a kids clothing store and continued to say "shop", "shop" He loved it. This is another big stem in the process of healing. The doctors said that if he gets sick they want him down here to fix him up and send him out there again. Nicholas is doing so well and the doctors are extremely impressed. We are also very happy that our prayers, and everybody else's prayers are continuing to be answered. Thank you to everyone who continues to pray for Nicholas and his successful recovery. He is doing awesome and it looks like we will get to come home in a couple of weeks. Please continue to pray for Nicholas and his safe return home in a couple of weeks.  

February 24, 2005 Thursday - ( Day +84) Outpatient - (Day 41) 

WE HAVE NUTRAFILLS = 3,800 

WHITE BLOOD CELLS = 4,400

RED BLOOD HEMATOCRIT = 39,700

PLATELET = 44,000 

My doctors appointment got pushed up one day because of the holiday on Monday. The hospital is very busy on Friday so they called and said that Nick is easy and well and asked us if we could come in a day early. That works for us all right. Nicholas will be at the hospital for a scheduled check up, blood test, and his IVIG infusion at 9:00am today. 

UPDATE: Nicholas had his doctors appointment today. The doctors are a little concerned about his numbers. They have all fallen a little. They said it looks like he may be getting a viral infection, and if he gets a fever this weekend to bring him in..Lets hope that this does not happen and he continues to stay strong. He was running and playing tonight like he was not sick and he acts like he feels great. He took a nap this afternoon and woke up full of energy. Lets please pray for a great outcome over the next week and good numbers for Nicholas going into his bone marrow aspiration next week. Please keep him in your thoughts and prayers. Oh yeah!! Hi Grandma:):):) Talk to you later.

February 23, 2005 Wednesday - ( Day +83) Outpatient - (Day 40)

 

Nicholas was very excited to go to the park this morning. He kept saying "go to park and slide" It was very cute. He called me and gave me his lunch order and told me we were going to the park. I left and got his lunch and then took him to the park. When we got there he was so excited. It was so precious. He could not wait to get out of the car. He started to un-buckle himself from the car seat so he could get there faster. I let him out of the car and he ran to the play ground and the slide. He went on a couple of the small slides then off to the big slide. He loved it. Nicholas kept on going down the big one over and over again. He also blew bubbles with his bubble toy today. He had a lot of fun. I was great to see him have sop much fun at the park. He has always enjoyed parks. He was not as wild tonight and sat down to watch Ellen DeGeneres tonight. He was in a great mood and had a lot of fun today. Please keep Nicholas in your prayers for a continued fast recovery and a great doctors visit tomorrow.

February 22, 2005 Tuesday - ( Day +82) Outpatient - (Day 39)

 

Nicholas energy level is still running at peak performance. He is very definitely a 3 1/2 year old these days. I do not blame him though after being cooped in the hospital and now in the apartment. He feels so good and wants to go and play, wrestle, and run. I do not think he realizes what he just went through. It is so great that he feels so good. His mom and I are going to take him to the park tomorrow and let him run off some of the energy. He has always loved the park so I know that he will have a lot of fun. We do have to be careful because of the germs, and wash his hands when he is done. He has run around the house like a wild man all day and night. He is still eating very well and still watching Elmo videos (his new favorite) Nicholas is now answering the phone and talking to whoever is on the other end. He answers "hellyoo" it is so cute. He tells everybody what he wants for lunch and what he is watching on TV. It is very cute. We cannot wait to take him to the park tomorrow and he will be excited. Please keep him in your prayers for a continued recovery.

February 21, 2005 Monday - ( Day +81) Outpatient - (Day 38) Presidents Day!

 

Nicholas woke up early this morning wound up tight and in a great mood. After eating his breakfast he was ready for lunch and placed his order with me for McDonalds, and Taco Bell. He ordered for himself, for mom, and for dad. I guess we are eating out for lunch. He is very talkative and still full of it and feeling very good. His energy level never went down all day. Today was the first day that his level was this high. I cannot believe that someone could have so much energy without getting tired. It is so great. He is continuing to eat about every 2 hours. He basically just grazes all day. He loves Elmo videos now and does not watch The Wiggles very much these days. We are going to try to take him to the park tomorrow so he can run out some of his energy, providing the weather holds out for us. Everything is great and Nicholas is doing so well. Please continue to pray for Nicholas and his recovery.

February 20, 2005 Sunday - ( Day +80) Outpatient - (Day 37) 

Nicholas woke up at 7:45am this morning talking like a magpie. He speaks and continues to repeat everything. This morning Nicholas and his mom were cooking a great breakfast and put maple and brown sugar sausages on the stove. Nicholas out of the blue called these "sugar piggies" all on his own. It is so funny. He talked to his uncle Wade on the phone and told him what he wanted for lunch. His ability to talk gets better everyday. It is so funny to listen to what he learns everyday.  He took a late nap for 1 hour and then went to sleep at 10:30pm for the night. Nicholas is talking on the phone now. When the phone rings he comes running and says "talk, talk" and then answers and says "herwow" then starts to order what he wants for lunch. It is so funny. He still continues to run like a wild man full of things to say and energy. Nicholas does not have a doctors appointment until Friday this week. Please keep him in your prayers for a fast and continued speedy recovery.

February 19, 2005 Saturday - ( Day +79) Outpatient - (Day 36) 

Nicholas was very active today. He jumps around and runs around all day. We are worried about his port hanging from his chest and Nicholas falling on it and tearing it out of his chest. He is just a "wild man." It is great to see him with so much energy and feeling so well. He is definitely a 3 year old now. He really tries to get out goat. He is very independent and wants his way. He has even had to sit in time out a couple of times. It is great that he feels so well, but sometimes he just wears us out. I wish I had just a little of his energy. Nicholas was wound up all night. He did not want to go to sleep, he had lots to say, and energy to burn. I thought that I had him ready to go to sleep at 11:30pm and then Ellen DeGeneres came on. Oh boy, that was it. He had to watch her show. Ellen is his new favorite show. He has traded in Jay Leno. At 12:22am I just had to turn the TV off and tell him that it is time to sleep. By 12:30 he was out like a light. His health and recovery is so awesome. Thanks to all of his doctors and nurses that continue to help him stay healthy. Please continue to pray for his recovery and positive results from his bone marrow aspiration on March 4, 2005.

February 18, 2005 Friday - ( Day +78) Outpatient - (Day 35) 

WE HAVE NUTRAFILLS = 5,400 

WHITE BLOOD CELLS = 5,900

RED BLOOD HEMATOCRIT = 41,300

PLATELET = 51,000 awesome!!

Nicholas had an awesome day. He went to the doctor today like a big boy and did  not even cry. I think that he even had fun. The nurse gave him a coloring book, washable markers, and a football before we left. He does not like the X-Ray thou, and hopefully he will get used to it like the rest of the visits. Nicholas does cry when he needs to go get a x-ray and we do not know why!! All of the doctors are very happy with his improvement and they are continuing to scale him off the steroids. He does not even take a night dose of his steroids now only the day dose. If the progress continues he might be off the steroids completely in 5 weeks. We think that the doctors have ruled out Cronic GVHD, but not Acute GVHD, but plan to continue the scale back of medicines. His platelets came up a little today (1,000), and this is better than going down. His blood hematocrit is higher than it has ever been, and it is great to see him with so much red in his skin. It is so cool to see the bottoms of his feet red we have not ever seen this before, not even after a transplant. His bone marrow aspiration is scheduled for March 4, 2005 to make sure that there is only the donors marrow and not some of his old marrow. It will take a week or so to get the results back, but this will tell many things, including when we get to go home, and the future for his meds and check ups. Even though I do not want him to have to go through this again (this will be his 3rd time in his life) It will give us a lot of positive answers. It is a milestone - the Day +100 mark for bone marrow transplants is a great thing. It is what we have been looking forward to. Nicholas is such a trooper through this whole procedure, and it is great that we have come so far with him. He is a very strong son and we love him so very much. Please keep him in your prayers for continued success in this procedure and for his life. Thanks to everyone who has been praying and following Nicholas' progress.

February 17, 2005 Thursday - ( Day +77) Outpatient - (Day 34) 

Nicholas was still very active and funny all day. He is now answering the phone when it rings and says "helwooow." He is still eating through out most of the day. He does not drink as much water as he should, but he gets his IV drip all night. Nicholas got put in time out tonight and he was very sad for a little while. Nicholas is really a great child, so when he gets put in time out for a couple of minutes it is really devastating for him. He has a doctors appointment in the morning for a blood test and his IVIG. Hopefully his platelets will be on the climb, and all of the other numbers will be strong. He has been doing great at this point and should continue. Please keep him in your prayers!!

February 16, 2005 Wednesday - ( Day +76) Outpatient - (Day 33) 

Nicholas woke up in a great mood this morning after being a wild man until 10:00pm and falling asleep at 11:00pm, woke up and he is wound up tight. He has already had a bath, breakfast, changed, and wants Mcdonalds all by 9:00am this morning. He is feeling great!! Uncle Rusty came into town tonight on his way to Wyoming and could not believe how much Nicholas has changed. He was amazed at how much he was talking and eating. He was sure glad that Nicholas was doing so well. Nicholas sat down to dinner and ate barbeque chicken for 1 hour dipping it in ranch dressing then he took over my mashed potatoes and started to dip his chicken into my sour cream. He is feeling wonderful. He fell asleep at 8:30pm and slept through the night, them was up and at them early wanting Burger King!! What a blessing. Please keep him in your prayers.

February 15, 2005 Tuesday - ( Day +75) Outpatient - (Day 32) 

Nicholas was very funny today. he was full of energy and did not take a nap. I think that the naps are the things of the past. He has not had a nap for weeks now, and they do not seem like they are coming anytime soon. He ate all day today and had chicken, steak, and mashed potatoes for dinner. He really liked the steak  and ate all of his chicken. His energy level this evening was the busiest that it has ever been. I do not know where such a little 40 pounder can find all of the energy. He was still going strong at 8:30pm just giggling, bouncing, and laughing until he was red in the face. He answered the phone for the first time today and talked to grandma on his own for a couple of minutes. This was a first. Nicholas continues to grow and learn everyday. It is just amazing!! He has already let me know that he wants McDonalds for lunch tomorrow, so as spoiled as he is I will get it for him, LOL. It is so great to see him doing so well. Please keep him in your prayers for a continued fast recovery and strong bone marrow. Thanks!!

February 14, 2005 Monday - ( Day +74) Outpatient - (Day 31) Valentines Day!!!

Nicholas had a very good valentines day. He wanted McDonalds for lunch and received gifts from both mom and dad. He continues to eat keeping food in front of him all day. He is basically hungry about every 2 hours through the day. He ate barbeque chicken, green beans, and mashed potatoes. He really liked the chicken and ate the green beans. He has always liked mashed potatoes so he thought that this was a great dinner. His energy level continues to get stronger with the highest energy level after his evening meds around 7:00pm. We do everything that we can to keep as calm as we can hoping that he does not pull out his port jumping around. He has had a great day and continues to learn. Please keep him in your prayers!!

February 13, 2005 Sunday - ( Day +73) Outpatient - (Day 30)

Nicholas fell asleep last night at 11:00pm and woke up this morning at 6:00am. He has been running hard all morning and is hungry as well. At 10:00am he already wanted left over dinner from last night. He said "hamburger helper, mashed potatoes with sour cream, green beans" so time to warm up the left-over dinner from last night. I am glad that he really liked his dinner so much that he wanted more this morning. I will get him some chicken nuggets just in case that he wants them, but hopefully he will eventually not want as many chicken nuggets. He ate his lunch of hamburger helper and green beans, also ate his chicken nuggets and also wanted some cheese. He just continues to eat all day. This is great. For dinner he had barbeque chicken, green beans and mashed potatoes. He loved his chicken. Hopefully we can get him away from McDonalds and Burger King food. Nicholas was wound up tight all night. His energy level is just incredible. He wants to play and wrestle hard all day. I do not know where he gets it. He started to attack me all evening running and jumping on me, giggling and laughing all night. It is so wonderful that he feels so good. Thanks for reading and please keep Nicholas in your positive prayers. 

February 12, 2005 Saturday - ( Day +72) Outpatient - (Day 29)

Nicholas had a wonderful day today. It started off with him taking all of his meds by mouth for the last 24 hours so his feeding tube was removed. He has no more tube from his nose anymore. In his own words "no more tube" and " tube in trash." He is glad that it is gone also. He continues to gain more and more energy everyday and is funnier everyday. He does not miss anything, and picks up everything that is being said and repeats it. He talks to us everyday on the phone and tells me what he wants for lunch and what he wants. It is so cute. It is great to be able to talk to him on the phone. Last night he ate hamburger helper, green beans and mashed potatoes with sour cream. It was wonderful and he had his share also. Hopefully we will get him off the chicken nuggets. I hope that he continues to ask for these type of cooked meals. It is very good for him, but we know how he loves chicken nuggets. He is really doing awesome. Please keep him in your prayers, it is really appreciated.

February 11, 2005 Friday - ( Day +71) Outpatient - (Day 28)

WE HAVE NUTRAFILLS =  ??

WHITE BLOOD CELLS =  5,400

RED BLOOD HEMATOCRIT = 39,000

PLATELET =  50,000 

Nicholas had another great doctors appointment. His platelets are still falling, but not fast, and he is not even close to being transfused to raise the platelet count. The doctors are not worried at this point even saying that all of their bone marrow patients are having platelet problems right now. It kind of comes with the territory, they are the last to engraft and if a bone marrow person has graft versus host disease (GVHD) the platelets can linger for a long time. The doctors are continuing to scale him down off the steroids and hoping that his platelet counts come up on their own. At this point the taper down off the steroids will be 3 months. We were talking to the doctors today and we found out that at the 100 day mark from transplant (about 29 days) they will do a bone marrow aspiration to see what exactly what his marrow is doing. At this point if all is doing well they will talk to us about going home and how often we will have to come back for check ups. At this point he will be on steroids for 3 months and anti-rejection meds with the antibiotics that go with them for at least 10 months, so there will be many trips to Salt lake City even when we go back to Idaho, but it is very possible that we can go home in about 40 days providing Nicholas does well, does not get sick, and the doctors feel that he is well enough to be so far from this facility. We have called his oncologist in Spokane, Washington (Dr. Judy Felgenhauer) to inform her that we may be coming home in the near future and will be continuing to use her for emergency care if Nicholas needs it. If Nicholas gets sick Spokane is only 2 hours away where Salt Lake City is 12 hours away. The doctors in Salt Lake City will work very close with Dr. Judy to ensure that Nicholas continues to get the great care that he has had all of his life. Dr. Judy has worked with Nicholas for 2 years and knows him very well and it will be great to continue to work with her again. Nicholas still has a long way to go, but it is nice to get excited about the possibility of going home in the very near future. We gave Nicholas all of his meds by mouth today and if he continues to take all of them by mouth tomorrow we will pull his feeding tube, since all it was used for was meds. I think that he will do it. What a trooper. We will keep taking steps forward with positive goals set for the future and a long healthy life. 

February 10, 2005 Thursday - ( Day +70) Outpatient - (Day 27)

Nicholas is still doing great all day eating, running, and playing. His Mr. Independent attitude starts to fly around 7:00pm in the evening about 1 hour after his steroid medication. We are wondering if this has anything to do with it?? Nicholas was still really funny all day repeating everything that is being said by everyone, even the TV. He has a doctors appointment in the morning and we hope that his platelets come up and all of the other tests do great also. He is just a joy to be with. Please keep him in your prayers.

February 9, 2005 Wednesday - ( Day +69) Outpatient - (Day 26)

Nicholas has been himself all day. He has been eating, eating, eating, running, running, running, playing, playing, and playing. It is so funny to hear the new words that he says all day. He wanted Burger King for lunch and McDonalds for dinner. He also wanted a Jamba Juice, but does not drink very much of it. His 3 1/2 year old attitude has been developing. We have never seen this before, but since he is feeling soooooo good he has decided to show us his new independence and strong attitude. Nicholas had his M and M machine taken away from him on Tuesday for throwing M and M's, and he was in time out twice tonight for throwing a temper tantrum, hitting the wall, and plopping himself down on the floor. All this because we made him wash his hands. He is growing and developing so fast it is incredible. With all of this it is so much of a pleasure to watch him develop and learn. Please keep him in your prayers for a continued successful and independent recovery.

February 8, 2005 Tuesday - ( Day +68) Outpatient - (Day 25)

WE HAVE NUTRAFILLS =  4,300

WHITE BLOOD CELLS =  4,800

RED BLOOD HEMATOCRIT = 40,300

PLATELET =  55,000 

Nicholas had a doctors appointment today and he did not cry at all before we left or while we were there. He is doing so good now with the return visits to the doctors and his check ups. He is having more fun with it and I think that he realizes that he is not going to stay and he is not going to be hurt. He really looks forward to the trip to McDonalds for chicken nuggets with ranch dressing. All of his numbers look great. His bone marrow is really producing especially with the red blood cells. He has never been this high even after a transplant of fresh red blood cells. This is awesome!! His platelets are low, but not yet a concern of the doctors. They want to continue to watch them. The theory is that he has been producing so many red blood cells that the platelet count has dropped and they think that it should start to come back. We will see on Friday at his next appointment. He will also get a new feeding tube through his nose on Friday and he is not going to be very happy with this. He only uses this tube for a couple of his meds that tastes so nasty that he will not take by mouth. When he can take all of his meds by mouth this tube will be taken out. Hopefully this will come soon. He has done awesome and to date he has gained 11 pounds basically since the first of December. He looks great and feels wonderful. I think we are experiencing the terrible two's now. His very independent and strong personality is testing Mom and Dad to see how far he can go and what he can do. This is completely normal, but a change for Nicholas. I feel that his strong personality and independence is some of the reasons that he can endure this procedure, and of course all of the love from family and others all over the world. Thanks to all of you for keeping him in your prayers.

February 7, 2005 Monday - ( Day +67) Outpatient - (Day 24)

Nicholas is doing great today. He was up until 12:30am and was up again at the crack of dawn. He has continued to eat and has a constant bowl of something in front of him. He is drinking more water on his own and asking for it when it is not cold or empty. He does not take 1 drink anymore, he will take 4 or 5 drinks without putting the water down and then hand it back to us, hopefully he will be taken off the water IV at night soon. Nicholas is going to have a doctors appointment tomorrow and we will look at his numbers then. Please keep him in your thoughts and prayers!!

February 6, 2005 Sunday - ( Day +66) Outpatient - (Day 23)

It is Super Bowl Sunday. I wonder if he wants to watch football?? He generally likes sports, but he does not realize yet that this is the big game of the year. I wonder if he will play football like his brother Mitchell?? I will update on his big day later. Nicholas was very upset today. We took him for a ride in the car and he thought that he was going to go to the doctor. He was very upset and cried and whimpred for about 20 min. When we pulled up in front of Old Navy he realized that we were going to shop and he would get a present. He loves presents and surprises. Then we went to ShopCo and he was still OK especially after he got a couple of DVD's. Nicholas is still talking more everyday and eating all of the time. He just grazes all day. I am so glad that he is doing so well. Keep up the good work. We love you!! For all that is reading, please keep him in your prayers!!

February 5, 2005 Saturday - ( Day +65) Outpatient - (Day 22)

We had a great day from the beginning. He wanted chicken McNuggets again after his oatmeal. I have been buying him 10 pc McNuggets and he ate 8 of them this evening, ate almost 20 this afternoon. I do not know where he puts it all. He has been grazing with food in front of him almost continuously all day. It seems like he is never full. His belly will be sticking way out and he will still want to eat. His eating is awesome, but I do not know where he is putting it all. We are getting him away from the cheese, but he thinks he needs to live on McNuggets now. I wonder what food will be next?? He has been running from room to room this morning and jumping up and down. Jump, Jump, Jump he says. He wears me out just watching him. He is definitely acting like a 3 year old with his attitude, energy, foods that he eats, and even his speech. Nicholas fell a sleep a little after 10:00pm last night and this is very much better than 1:00am. Everything is getting better everyday!! What a blessing. Please continue to keep him in your prayers for a fast recovery.

February 4, 2005 Friday - ( Day +64) Outpatient - (Day 21)

Nicholas continues to amaze us. He continues to eat, and play all day. His energy level also continues to go up. He called me on the phone to ask for McDonalds chicken nuggets this morning. It is so awesome that we can talk and carry on a small conversation with him. He is a joy everyday and the learning he does is incredible. We just play all day and have a great time. Nicholas did not go to bed until 1:00am in the morning and was up and at them by 8:00am. He is not taking naps this last couple of days, I think that he is trying to grow out of them. He is awesome and a lot of fun. Please keep him in your prayers.

February 3, 2005 Thursday - ( Day +63) Outpatient - (Day 20)

WE HAVE NUTRAFILLS =  4,400

WHITE BLOOD CELLS =  4,600

RED BLOOD HEMATOCRIT = 38,100

PLATELET =  67,000 Great!!

Nicholas' doctor appointment went great as usual. He is doing so well and the doctors are very pleased. His platelet count went up as well so the doctors are going to continue to cycle down the steroids that is taking care of the possible GVHD (graft versus host disease) Now that his cyclosporin levels (anti-rejection drug) are stable the platelet count is also going up. Hopefully this is the case and it will continue to do well.  Nicholas also had a IVIG Infusion (Immune Gamma Globulin)That is given to him once a week on fridays. We will go back on Tuesday to check the levels again, but this is really routine. He did very well at the doctors office today and he did not cry at all. I think that he realizes that we are not going to stay and it is only a check up so he is not crying about it. He is actually having a little more fun while we are there trying to help the nurses as we go along. We are just there for a couple of hours then he gets to pick out a present, and go to McDonalds for lunch. All of his numbers look great and on to another day of play. Please keep him in your prayers for a continued speedy recovery!!

February 2, 2005 Wednesday - ( Day +62) Outpatient - (Day 19)

Nicholas has had another great day of play and eat. He is wanting cheese or quesas about every 3 hours. He is really holding his own and growing. He had a lot of fun today and even took a nap for about an hour. He has new movies to watch and has grown fond of Elmo and Sesame Street now. He has wanted to watch these over Wiggles. He is just doing awesome and another day to getting to go home. His health is great and looks great. Tomorrow Nicholas has another doctors appointment to check on his levels and platelets. I think that this should go well. Wish us luck and please keep him in your prayers!!

February 1, 2005 Tuesday - ( Day +61) Outpatient - (Day 18)

WE HAVE NUTRAFILLS =  4,300

WHITE BLOOD CELLS =  4,900

RED BLOOD HEMATOCRIT = 38,700

PLATELET =  60,000

Nicholas had a great doctors appointment today. They are still very happy with the recovery of Nicholas. They are a little concerned about the drop in platelets, but they are going to keep an eye on it for a couple of days. It might be that because the cyclosporin (anti-rejection drug) levels fell a little low, and the platelets followed. This could happen the doctors said. Nothing will change at 

this point and we are just going to keep moving forward. Nicholas had mom call me today and he told me that he wants "chicken nuggets with ranch dressing, double cheesburger from donalds," so I will bring him dinner. He is so funny. It is weird to be able to talk to him especially on the phone. This is so awesome. Please keep Nicholas in your prayers!! He is so special. We love you!!

 

Nicholas Ashby Donation Account US Bank (714-529-3983) Or just walk into any US Bank   Make a Donation through Paypal:

If mailing please send to: Nicholas Ashby Donation Account P.O. Box 1817 Lewiston, Idaho 83501