Last Report of 2008

Well, we are all anxious around here for the new year. We are actually going to let the boys try and stay up until midnight. They are pretty excited! I don't think they will make it, but we'll see! We have made our goodies to eat all night and have already mapped out the games and Wii activities to be done.

We celebrated the twin's 3rd birthday on the 23rd.


We also started potty training. WE HATE POTTY TRAINING! We just telling ourselves that this is the last time we have to do it and that we'll save lots of money a month on diapers and wipes! I think the most underwear and pants we went thru in one day was 20! It's been over a week and we the only positive we have to report are they are telling us about 25% of the time when they have to go and we seem to go longer stretches between having to go. So that is a plus. We aren't dwelling on the negative!

Oh, Ryan wanted me to add his picture of his 1st official report with a poster and everything! It was on his favorite planet Uranus. (No, he doesn't know yet!) He cut out the letters on my Cricut machine and picked out the paper to frame the pictures. He really has a neatness gene in him! That and he's been seeing me scrapbook lately! Anyhow, he did a great job. It took him 1 1/2 hours to do it. I honestly didn't help too much! Just with the cricut machine! He was really proud of it!


Here are pictures of Christmas Eve. Daniel was helping me make some pies! Here is he rolling out his pie crusts!


For our Family Home Evening we reinacted the Nativity. This is the second take of it. Nathan is Mary. Comptyn is Joseph. Bryce is the shepherd. Ryan and Sammy are the sheep. You can't see their tales. Daniel is sitting in a chair about to fall asleep. And the star of the show.....Donald Duck as baby Jesus. We hope people won't think it's sacriledges (sp?) but we don't have baby dolls around our house! It was either Donald or the Incredible Hulk!


Christmas morning barricade in the hallway until everyone was awake!


Ryan and all his stash:


Comptyn and his stash:


Byce and his stash:


Nathan and his stash:



Daniel and his stash:


Sammy and his stash:


The boys and their Wii.


G-Pa and G-Ma Lords bought the Wii. G-Ma Stewart sent out some games and money to get a Wii Fit (but prices doubled so we are waiting until after Christmas and they come down!) And daddy and I bought Outdoor Adventure which I would highly recommend for ANY age! It's quite a work out and a LOT of fun for all ages! Even Daniel and Sammy like to do it! And also some pictures of them playing their Wii! It's hilarious to watch! If I can figure out how to download video from our camcorder, I'll put some videos on to watch! New Year's Resolution! Figure that out! SOmeone bowled a strike here:


Well, This last picture is of our family! (notice Ryan was in a BAD mood! and my face is flushed because we just got the twins dressed! It's quite a work out sometimes!) From our crazy family to yours....we hope you all have a wonderful new year!


PS About Daniel. He is doing well. His labs are coming in stable. We go back to CA next week. Infusion, breathing treatment and ultrasound on one day. We are suppose to have a clinical the next, but they can't get us in until later in the day. We can't stay that late, so we are kindof going back and forth with the nurse about getting us squeezed in or we won't be seeing them in clinicals. When we have to leave, we have to leave. Anyhow, we'll see how urgent they want to see us!

Bryce's school discipline

Well, Bryce had a visit with the principal. (I never got sent to the principal's office, yet his father has! Wonder were all this 'pay back' is coming from! ;-) Just kidding!) Anyhow, Mr Hogan talked to Bryce about what happened and if it's been happened for long. As we knew before, it has. THe boy has been moved so he isn't sitting next to Bryce, too. So Bryce has lost all his recesses and lunches are to be served in the office for the rest of the week. So not too bad! He has been pretty good around here, too. Staying on his bed when the TV is on and reading.

Bryce-isn't

So usually we have Bryce-isms. But not today! Bryce, apparently, has been getting bullied at school by a boy that is 8 years old and in his class. He has been held back and has a few problems. So he is a bigger kid (obviously) for a first grader. Anyhow, we just found out yesterday that Bryce has been getting picked on by this kid. Well, Bryce couldn't take it any longer. So when this kid had Bryce literally cornered with 2 chairs Bryce pulled down his pants (and underwear) and said, "I am going to pee in your mouth if you don't leave me alone!" YEP! That's my boy! Yesterday for about the first hour it wasn't funny. In fact, I was pretty mad! But now I can't stop laughing! Some of the comments that came so sincerely and honestly out of Bryce were, "But mom! You never said we had to be modest at school!" Which, technically, he is right! We have been teaching to change clothes in different rooms at home and not to run around in just your underwear. We never have expanded outside the walls of our home! (mental note: add more to areas of modest behavior!) Then when we were asking Bryce to help us come up with a punishment for this he said (and keep in mind, Bryce doesn't eat breakfast well if it is oatmeal, craem of wheat or cracked wheat.....which is ALL we seem to eat in the winter) he said, "I think I should go without breakfast for a week." I lost it there! I started laughing so hard! I said, "You don't eat breakfast anyhow! Besides, you need to eat. We will not take away food from you." Then Bryce said, "I don't need food. Just water." I started laughing again! OH! What a day! Anyhow, Santa isn't coming for Bryce since he made the naughty list. Bryce also has no TV for 3 days and is on his bed reading for 3 days (which really isn't a punishment for him....the TV is....and Santa.) So, that is the life with 6 boys! And anyone without sons that sit at the dinner table or in the car or wherever and talk about poop, pee and boofing all the time, might not understand who funny this is after it's all said and done! He is meeting with the principal today so we will see what happens at school! We are taking Elder Wirthlin's advice to laugh at things! (But not while Bryce is around.....well, I guess that didn't work very good for me!) He wrote his letters of apology to the boy and his teacher. So, we'll see what after school brings today! I have a feeling this is just the beginning of our 'fun' school days! At least he is in 1st grade and not 10th!

Yesterday's labs

We got the initial lab results from yesterday. (Prograf won't be done until tomorrow or Thursday....our local hospital has to send those out.) Anyhow, Daniel's creatinine went down to 0.6 and we are very grateful for that! It's been staying at 0.7 and we were wondering what was going on. So we are hoping Prograf level comes down closer to 5, too. That can elevate the creatinine level in Daniel, too. Anyhow, we are doing great around here. Daniel and Sammy are getting a long better. But they have their moments of just being brothers and fighting. They are getting very excited about Christmas and Santa. It's cute! The bottom 3 feet of our tree is looking like 2 years old are playing with it! IMagine that! Tuesday is the twin's 3rd b-day! We can't believe it's been 3 years. It's gone by pretty quick...THANK GOODNESS! It's getting easier and easier! We are hoping to do a little potty training next week and get rid of diapers! Hopefully they can master it pretty quickly....save us $40-$50 a month!

Here is the latest and probably last, article our local paper did on Daniel. A few errors, but mostly correct! :-)
http://www.rgj.com/article/20081212/FALLON/812120325/1029

Well, off to clean!

Daniel's Labs

Well, we have been home for about 2 weeks now and we are settling in nicely. Daniel is having a little trouble sharing as he was an only child for 3 months, but him and Sammy are getting along better and better each day. Daniel's Prograf level is being dumb! :-) For 3 draws in a row he has been 6.9, 7.0, 7.0. So they want his level down by 5.0, therefore they keep lowering his Prograf medicine hoping it would lower the level. Not working! 9.0 was his last Prograf level. Prograf is a touchy medicine. If he doesn't get his medicine at the exact same time everyday, if he eats or drinks anything with it, if he even get 0.2 more or less than what he should, is all a factor in the level. We have been really good about being consitant but it increased. He just had labs again yesterday so we will find out in a few days what is happening on that draw. (Our local hospital has to send out the blood to be tested, so it takes a few days to get results back on Prograf.) His creatinine has been elivated because of the Prograf to 0.7. Daniel's been steady at 0.5 for a long time. So we will see. I've been told by his nurse that it isn't a sign of rejection so not to worry about that. I fretted about that all night long one night. I finally figured that if it was something super serious we would be back in CA!

The Story of the Paper Crane

The following excerpt is from something written up by a group that hung this paper crane chandelier on Saturday. It was INCREDIBLE to watch them do it! When we first came to the RMH everyone was folding cranes for this. I wish I would have done one to say I contributed. But it's still an amazing story! Here are the pictures and then read on:



The 10,000 Paper Crane Chandelier Project was inspired by a true story from Japan. In 1945 when the atomic bomb was dropped in Hiroshima, although thousands were somehow spared then, residual radiation in the aftermath of the bombing caused many to develop what was known then as 'the atom bomb disease'--leukemia.
Sadako Sasaki, only 2 a the time when teh bomb dropped, was 11 when she developed leukemia. She was a runner for her school, until she fainted one day and was sent to the hospital only to discover that she had contractedd the dreaded 'atom bomb disease'. In the hospital, her best friend Chizuko reminded her about the old Japanese folklore that said if a person folded 1,000 paper cranes, their wish would come true.
Bolstered by this legend, Sadako started folding paper cranes from any paper she could find. The nurses would give her paper from the pharmacy to help her in her quest. Sadako folded and folded until she grew so weak that her fingers could not find the strength to fold a paper crane anymore. She died before she could finish 1,000. She folded 600 or so the story goes. Her classmates decided to fulfill her wish by folding therest and burying all 1,000 paper cranes with her. From then on, paper cranes and Sadako statues have been erected in many places around the world, not just in Hiroshima, Japan - but also Seattle, as a symbol of peace, hope and healing.

The practical application of this story came from an artwork I saw at the Mayo Clinic in Rochester, MN. (This is a doctor who spearheaded this project.) When I interviewed for graduate school there, I noticed that everyone who entered the cavernous entrance hall of the Gonda Bldg was immediately struck by the massive installation of 13 glass chandeliers that hung from the ceiling. Each chandelier was made up of hand-blown glass of different colors and shapes stuck together. This artwork was done by the world-renowned glass artist Dale Chihuly.

(Pretty amazing, huh?)
It was hard not to ask the current graduate students the question, "Please tell me exactly what the heck is that up on the ceiling?" I will never forget the answer. According to the graduate student, the artist's intent was such that when a patient entered the Mayo Clinic and looked up at these chandeliers, they would be as completelyl enraptured just like we are. His hope for the patients was that for one awestuck moment, they would cease to think about how much suffering and pain they were going thru, but wonder, just like we did, "what the heck?"
And so, putting the 2 stories together, our idea was to fold 10,000 paper cranes to make a giant paper crane chandelier that will be hung on the ceiling in the Great Room of the Ronald McDonald House, as a gift from the community. We started folding cranes in July. At Stanford, members of the Intervarsity Graduate Christian Fellowship (the group that did all this), the Department of IMmunology, and their friends folded. In Palo Alto and Mountain View, the Helping Hands group at the Palo Alto Buddist Temple and the girls at the Girls Middle School folded. At the House, volunteers, staff members, patients and their families folded. At first the numbers were small. Slowly trickle became an outpouring! The cranes were being contributed to the project as news spread. By the end fo summer we had hit more than 8700 and the project team realized that we had so many cranes we would not be able to fit all the cranes into the chandelier and so we had to ask people to stop. Still, people continuted to fold!
As this was a projectnone of us on the team had ever encountered or attempted before, we were understandably apprehensive on how to assemble the chandelier. After months of planning, we finalized a design and assembly plan. On Nov 8th, gathering all the friends and fmaily we could find, 47 pairs of hands strung close to 8000 cranes on almost 500 strings! Over 10 hours to finish Part 1 of assembling th echandelier. When we finished stringing that day, relief and elation can only just begin to describe how the team felt. We had overcome the biggest challenge we were to face in this project.
And so come this day of Nov 22nd, we hope to complete the assembly of the chandelier by hanging the strings onto a pre-constructed 'waffle' frame. When we get done, just as Chihuly had intended for his glass chandelier at the Mayo Clinic, we hope that the paper crane chandelier not only helps the afflicted children living in the House to take their mind off the condition of their health, but serves as a reminder of all the people out there in the community who continue to love, hope and pray for them.

Isn't that neat?!?! It is a 7 foot ball. Looking up (or down from the 2nd floor) there is a star design inside. Hope you enjoyed the story!

IT'S OFFICIAL!

WE ARE GOING HOME! YEAH!! Words can not express how extremely happy we are right now! Tears still come to my eyes and I have known for over 30 minutes! So a very big thank you goes out to all of you who have prayed, fasted or thought of Daniel for the last 3 months! Thanks to you we have had a pretty smooth ride thru all of this. A few bumps, but nothing major! We have been touched deeply by everyone who has sent their love, or cards or packages to Daniel (and me) thru this. Thank you for everyone (and I know I will never know the incredible amount) of people who have helped my family back in Fallon. Thank you!
So what does this mean for Daniel's future? Well, he is very susceptible to colds, rashes, any illness others have or maybe carrying. The first year is the most critical for the new kidney. But even after that, he will still take a lot longer to heal and more than likely be hospitalized for common illnesses you and I can take care of at home. That would mean coming back here to CA and being admitted here at Lucille Packard Children's Hospital. For that reason, we are going to be asking everyone to be conscientious of his health, please. I don't want to come spend more time here than the normal monthly visits! We will be getting Germ-X for people coming into our home to use. And ask if you have a cold or more to please keep your distance from Daniel at church or other places we might see you. We will, in no way, be offended! On the contrary! We will greatly appreciate your thoughtfulness in the matter! We found out that even if you are anti-biotics, the 'you are not contagious' 24 hour period does not work for Daniel as the doctors have said that other people in the same family could easily be carrying the germ. So THAT will be fun when someone in our household gets sick! We will have to quarantine them to a bedroom or something! Haven't figured that out yet!
Anyhow, thank you! To everyone! We have really felt blessed beyond measure for the little miracles and safety we have been able to witness and have.
I have one more really cool entry about the 10,000 origami paper crane chandelier they hoisted up here on Saturday. I will input that later tonight after Daniel is asleep! As for now, I AM GOING TO PACK!