Nicholas and I woke up this morning to drink our coffee together on his sponge bob couch and watched his new Thomas the train movie. What a great morning. He then began to play with his big wheel and drove it around the house. I cannot wait until the weather turns around and he can go outside to ride it. He loved his other bike and will have more fun on this one. His rash is still gone and hope that it does not come back. Please pray for a good trip to Salt Lake City and a great bill of health for  Nicholas. We found out today that we will be driving since the weather is bad and the planes cannot fly.

Nicholas and I had a great day this afternoon and evening. He ran around like a wild man, we went for a drive just so we could get out of the house, and just plain had fun. He is doing so great and his energy is so high still. Now that he is off the steroids for the last 2 weeks this is probably what he will be from now on. His rash that he had on the both sides of his neck has gone away. Nicks mom started to use a steroid cream that we had before on the rash and it disappeared in just a few days. Woo Hoo!! What a relief. The doctors in Salt Lake City said that it could have been viral, bacterial, or GVH but it is gone now and we are still planned to be back in Salt Lake City on Monday for his month check up. They will also do some year end testing. Please pray that he continues to do so well.

Merry Christmas!!!

    What a great day Christmas is..Nicholas woke up this morning and ran out to find out that Santa had come. Nicholas noticed that the cookies were gone and asked "where did the cookies go?" I told him santa ate them... What a kick he is. He then proceded to tear away at his presents opening them one at a time. He had so much fun. Nicholas really enjoyed Christmas this year and has been looking forward to this day for the last few weeks. Today made everything all worth it. He is so precious and so full of life, we love you Nicholas. Please pray that Nicholas continues to do well and the rash on his neck turns out to be something easy to fix. 

HAPPY CHRISTMAS EVE

Nicholas has been full of it all day. He cannot wait until tomorrow and he keeps saying "Happy Christmas". He wants to give out the presents now until I tell him that Santa is coming tonight. He then puts them back under the tree and tells me how beautiful the tree is. This is such an awesome Christmas to have him feeling so good and able to enjoy it so much. I love him sooo much. What a great Christmas. Please continue to pray for Nicholas and his continued great health and for a great 2006.

HAPPY CHRISTMAS EVE, EVE

Nicholas came over here after a long afternoon nap. He is still sooo excited about Christmas. I cannot wait for him to see what Santa has brought him. Santa will eat his cookies that Nicholas brought over for him, will drink his milk and leave lots of toys. What a day this will be. His energy and eating is still very good, but he still has a little rash on his neck. We hope that it is dry skin and are told not to worry from the doctors in Salt Lake City. We will be there on the 2nd of January and they can tell us them what it is. Please continue to pray for the health of Nicholas now 10 days off steroids.

Nicholas is still very much a wild man!! This is so awesome since he is on his own when it comes to the steroids and antibiotics that he was on. Energy is still great, eating is still great, and everything is still great!!! We had fun today then we hit the road back to moms for a couple of days. He is still looking forward to Christmas and Santa is going to bring him everything, and he probably will. He continues to say "Happy Christmas" and it is going to be. I will see him on Friday for the weekend. Please pray for his body to continue to do so well and stay healthy all the way through now. 

Nicholas had a very busy day today that resulted in a 21/2 hour nap. I may be in trouble for this Nicholas may want to party all night, lol... He is doing great and his color is glowing. Nicholas has so much red blood cells that his lips are glowing red. He looks like he has lipstick on. Nicholas keeps on looking at his presents and says "Happy Christmas". This year is going to be a very Happy Christmas. Please continue to pray for our little Nicholas who is still off steroids and doing wonderfully.

 Nicholas and I had a great day. It is very cold here (.19 deg) so we stayed in. Nicholas was at one time playing Thomas the Tank on the computer and watching it on TV. He loves to play Thomas the Tank concentration on the computer, and it is amazing on how he can keep both straight at the same time. We wrestled ran up and down the hall, and played all week while wearing me out. What a joy in our life. Please continue to pray for Nicholas while he is off the steroid and develop a very strong and healthy immune system.

Nicholas had a very good time today. He was kicking back this afternoon looking so cute and at bedtime he decided to watch wiggles-top of the tots. He got a burst of energy and started to dance, and dance away for 30 minutes he did. He is so cute. We both went to bed very tired and slept like a rock. Please continue to pray for our little Nicholas and continued good health now that he is off the steroid and on day three.

Nicholas' mom brought him a wal-mart truck that she bought and he loves it. He keeps on saying "a really cool wal-mart truck." He is so funny. WE had fun yesterday and went to bed early with the wal-mart truck. Saturday is the first day that he will not get his steroid at all and is only on a few other med's. Please continue to pray for Nicholas' great health and he does great without the help on the steroid.

Nicholas is here to visit while mom is running errands. He is being a ham and is full of energy. I think that he is tired of having his pictures taken all of the time. It is getting harder to get him to smile and look at the camera, but I get lucky and sneak one in once in a while. He is doing awesome!! Please continue to pray for him and his health and give all of his family a very good Christmas all together at home.

Nicholas has now figured how to get things off the counters when I put them up too high for him to reach. He is busted on camera. We had a great day running around and dancing to the wiggles and bob the builder. WE are getting ready to go on a road trip back to moms for the evening and then he will come back tomorrow for the afternoon. What a sweetheart. He is still doing awesome. Please continue to pray for Nicholas as this is the last week that he is on the steroid.

Nicholas slept very good last night. We were both very tired. We have a day filled with inside fun and games. It is still very cold here so we will stay indoors. Nicholas has been wound all day singing and dancing to the wiggles. Please continue to pray for Nicholas and that he stays well.

Nicholas helping me set up the tree!

We got our tree today and set it up this evening. Nicholas was a big help. He really likes Christmas this year. He was so excited he kept saying Merry Christmas to the tree. We also put up lights outside. What a ham!!! He has been in high gear all day and we are now getting ready for bed. Since it is about 15 deg outside we will be doing a lot of playing inside for the next couple of days. Please continue to pray for continued good health of Nicholas.

Please add a prayer for Aisyah

Aisyah is from the UK who also has CEP and will under go a bone marrow transplant.

Nicholas had another awesome check up. The doctors took more blood for more tests, basically the end of the 1 year from transplant for him. They will compare this blood to 1 year ago to see how far he has come. We do not go back to Salt Lake City now until Jan 2, 2006. That will be a 2 day check up filled with ear, eye, neuro-psych etc... This is always done at the end of the first year of transplant. We will then have another appointment around the 2nd of February to go over all of the final results. We know how far he has come, but it will be interesting to get all of the results. 

    He also did great on the Angel Flight planes having friends that he has touched everywhere he went. Thank you to all of the pilots of Angel Flight  for their time and being able to take all 3 of us so we did not have to try to drive in the weather. Please continue to pray for Nicholas. This next few months off his meds will be scary while his own immune system is developing.

Nick, Mom, and Dad are all flying out on Angel Flight  to Salt Lake City. The weather has been snowy for a week now and driving is treacherous. Larger planes are flying us so we could all go. He will have his appointment on Monday when we get to Salt lake City and get his IVIG, and other meds that he receives once a month. This might be the last appointment this year. We will then go to the hotel for some rest and back to the airport on Angel Flight again Tuesday morning at 7:30am to fly home. These were the only available times because of the bad weather and snow. Please pray for a safe trip for all of us and pray that nicks blood continues to do so well and is still without hemolisis.    

"Happy 1st Bone Marrow Birthday"

This is Nicholas' first bone marrow birthday. He received his new bone marrow 1 year ago today. What a year it has been, and what a trooper he has been. He woke up this morning sporting his new pajamas and decided he needed to hide under the chair like Moe on the doodlebops. He is so funny. We had a great last couple of days, now he is with his mother for a couple of days, then off to Salt Lake City on Monday. Please pray that he continues to do so well.

"Where's Moe?"

Here is Nicholas being a ham and talking to his mother on the phone this morning. He has been running all day and when he is not on my computer he is dancing to whatever is on the television. He is so funny, and so much fun. Well, we are getting ready for dinner so have to go. Please continue to pray for our little (and getting bigger everyday) Nicholas.