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!

We are NOT going home.....

YET! (Scared you, didn't I?) We had clincials this morning and apparently the team hasn't met yet. Friday's review of Daniel's biospy was just a review. Tomorrow, Tuesday, at 3 pm the team meets a reviews everything. I think everything will work out the way it is suppose to. I am surprisingly at peace with the fact that I still don't know what we are doing. But I know that Heavenly Father has Daniel's best interest in mind and we will do whatever we need to for Daniel! So tomorrow night I will post again the final verdict.

Our 4 hour walk

Forgot to post Daniel's Halloween picture...Thomas the Train! SURPRISE! SURPRISE! The House had a bunch of costumes donated and he got to pick one.


YEP! Daniel and I went for a walk from 11-3 today. It is a beautiful day, so we decided to take advantage of it! I LOVE Stanford campus. The old architecture is incredible. Well, I've never taken my camera with me, but I did this time! So here are some of the pictures we got today:

This first picture is of The Burghers of Calais It is apparently, one of the most famous sculptures by Auguste Rodin, completed in 1888. It is a monument to an occurrence in 1347 during the Hundred Years' War, when Calais, an important French port on the English Channel, was under siege by the English for over a year.

The story goes that England's Edward III laid siege to Calais and Philip VI of France ordered the city to hold out at all costs. Philip failed to lift the siege and starvation eventually forced the city to get ready to surrender. Edward offered to spare the people of the city if any six of its top leaders would surrender themselves to him, presumably to be executed. Edward demanded that they walk out almost naked and wearing nooses around their necks and be carrying the keys to the city and castle. Saint Pierre, one of the richest volunteered first and 5 others followed. They stripped down to their underwear and Saint Pierre led this envoy of emaciated volunteers to the city gates and it is this moment that Rodin is trying to capture in these figures. Defeat, heroic self-sacrifice and the facing of imminent death. I wish I could put the close up of their faces on here, too. Although the burghers were expected to be executed, their lives were spared by the Queen of England, Philippa of Hainault, who persuaded her husband by saying it would be a bad omen for her unborn child. Anyhow, it's pretty cool!



Then right next to this is the Memorial Chapel that Jane Stanford built in memory of her husband Leland. It is INCREDIBLE! Everything you see is in mosaic. I can not imagine how long that took! We went inside and it is even more breathtaking in there! It's just like a church I'd expect to see in Rome or something. Flying buttresses, gorgeous stain glassed windows, mosaic inside, old all over!


We then walked to the cactus garden on campus. It is a abou the size of half a football field. There are supposedly over 100 different kind of cacti. There are little trails all over in it. Daniel had a lot of fun in there! It was pretty amazing. Here he is 'smelling the flower'!


We then went to the mausoleum that has Leland, his wife Jane and their son, Leland Stanford, Jr. There was a statue of the three of the, too. But the sun was not cooperating to get a good picture of that. Too many shadows.


Next was the Angel of Grief. I felt like I was almost interrupting her. It is so beautiful and peaceful. The Stanford's lost their only child, Leland, Jr. when he was 15 years old to typhoid fever. Some of you may have read the story circulating email periodically of their visit to Harvard's president dressed in rags and were turned away and that is how they decided to start Stanford. It's false! I was reading up on it and read they did talk with Harvard's president and got some advice from him. Anyhow, here is the Angel of Grief:



But Daniel's favorite part of this whole walk.....the safety cone! He dropped enough stuff down it to make a mound underneath it. He had fun for about 15 minutes:


We came back and Daniel opened a package g-ma & g-pa sent to him full of animals. He lined them all up in rows and reorganized them a few times. He now has them in a container we had and is on the bed with the dalmatian dogs watching 101 Dalmatians II. We had a pretty busy day and Daniel is already starting to yawn! Maybe he'll sleep good again tonight. Not a good nap equals a good night's rest!


PS Notice he has no NG tube in! He caught it on his giraffe today and ripped the tape off and out if came! I felt bad for him becuase that tape really hurt! I will feel bad for him later tonight when I have to put another one back in. My first time doing it! Joy O Joy!

Biopsy Results!

Well, there is good news and not so good news. Let's start with good. I have in my possession the results of Daniel's biospy. Here are some quotes from it that you'll understand or I'll explain briefly: "More that 30 glomeruli are seen, of which none are either segmentally or globally sclerosed." That means they aren't hard at all! YEAH! "Multiple foci of ealry tubular atrophy are seen...." First of all early tubular atrophy is expected and seen in all biopsy, Dr. Grimm said. They aren't surpised by that because of the high dose of Prograf he started at. That is why they wean him down to a lower dose over time. "No significant interstitial fibrosis is observed." Which means the tissues are not tough. "Arterioles are unremarkable." The arterioles carry the blood. This has to do with his blood pressure. It is remaining high enough that those little arterioles are receiving the blood pressure they need so they don't die! And here is my favorite line: "There is no evidence of either tubolinterstitial (tissue) or vascular (blood vessels) rejection." SO YEAH!! I am VERY happy for that last sentence especially. So that is all I could decipher from these notes. Bad news: there is still MORE I don't know what it means and don't fee like googling. They review biopsy results every Friday and since Daniel's biopsy was last Friday, tomorrow will be when they discuss the results. That means we don't have a release date yet. Dr. Grimm said everything looked great, but wants to talk to talk to Dr. Alexander first. So Monday we go back for another clinical and we'll hopefully be told to GET OUT OF HERE! I am packing anyhow and planning on meeting my family at Brenda's for Thanksgiving with all our stuff!
Thank you, everyone, who has offered prayers, fasted for or sent good thoughts Daniel's way. They have worked! I, again, heard that his a text book example of everything going right. We haven't had any set backs at all. And our family thanks you for that!
While we were leaving the office there was these 3 people there taking some pictures for a renal transplant brochure they are making. The lady, Jody, saw Daniel walk by (I was still in the room cleaning up his toys) and I heard her say, "Who is this? He is adorable! Where is his mother?" So needless to say, we stayed 45 more minutes because they took a TON of pictures of him by himself, him with Dr. Grimm and him with me. Jody said that she designs the brochure and Daniel will DEFINATLY be in it because he is the cutest kid she has seen up there. I can't argue with that! So when they post the pictures in a couple weeks, I'll put some on here! Funny, huh?

Biopsy Today!

This morning started at 8:00 am at the hospital. He was scheduled for hydration from 8:30-11:30 where they were going to take us up to PACU for the biopsy. WELL....we all know how that never happens! :-) (Hydration, by the way, was IV and because he couldn't have anything by mouth. But they still wanted that kidney to be hydrated well. They used his PICC line.) So finally at 2 pm (after about 1 1/2 hours of major crying from hungary pains!) they took us up to PACU. We were able to go down into the procedure room where they were going to perform the biopsy. It's the same place where they took out his pubic catheter. Anyhow, they gave him some drugs in his PICC line (we LOVE drugs!) and he got really groggy so he wasn't so aggitated. He knew exactly where he was as soon as we walked in the room! They put another one in his PICC line that took a little longer to work, but he shortly zonked out, we gave him kisses and left. 25 minutes later they were done! We were told that it took 30 minutes to 2 hours, but apparently his bowels fell to the side (they roll him on his left side so his kidney is right at the surface) and they got a good view of the kidney (guided by ultrasound) and everything went well! There was very little bleeding....1/2 pencil eraser size....on the bandaid. But the bladder was really full.....1/2 liter....adult size. So they cathed him to drain that so no extra pressure was on the kidney. So we have been fighting scratched up ureter all night! (they took the catheter right out when the urine came out.) Anyhow, Dr. Alexander said everything went textbook perfect! So we are happy about that. In fact, yesterday at clinicals we were also told Daniel is text book perfect but he could gain a little more weight. (I'll tell you about that later!) Anyhow, so he then had to lay flat for 4 hours! GOOD LUCK! he actually did really good....you'll see daddy laying in bed with him for the #2 & 3 hours (first hour was in recovery) and then I held him the 4th hour. So we made it! He got to eat and we got released at 10 pm! So we are finally here. He never had any blood in the urine, so we are grateful for that! We just will fight the painful peeing for 24 hours!
Dr. Usha was in there, and for those of you who don't remember her....she said Daniel didn't have gas....one x-ray later, he had gas! Anyhow, she said something about his reflux. I told him he didn't have reflux anymore (when the urine goes up into the kidney) and she said that she just read the report from the last VCUG and I told her it was wrong then because we were both there and the dye did not go up into his kidney. So she said she'd go print it off. She did, came and read it to us....."OH! He doesn't have reflux! I must have been thinking of someone else!" UGH! She makes us laugh though! Daniel has to have an antibiotic for 3 days due to the catheter. I asked if the antibiotic he is on for UTI's won't help for this case, too? She said, "He's on macrodantin?" DUH! She had his chart right in her arms! Gotta laugh or it would make you angry! Anyhow, enjoy the pictures!

Latest report

Sorry there hasn't been anything to read. Not much health wise has been happening to Daniel! Which is GREAT! I'd rather have that than a bunch of stuff to write about him! We've had a few little bumps on his prograf levels, but I thought about it today and realized I was using the last of the bottle when the levels increased. That is where all the 'stuff' settles even thought I shake it, I believe it still effected his levels because it was more concentrated down there. I've made some adjustments on that! So hopefully we'll be OK from now on.
Daniel and I have been enjoying the beautiful 'winter' here! It's in the 60s which feels like 70s due to the humidity. It actually rained the other day! A LOT of rain. (Nevada doesn't get much and it rarely lasts all day!) Anyhow, we found a walking place called the Stanford Dish. It about killed me off! VERY hilly, but the view was incredible! We could see all over the bay! Here is Daniel giving kisses to his momma! AAAAAAWWWWWWW!


Here is one of Daniel talking to his brothers on the phone. I just thought it was too cute!

Tonight was scrapbooking here at the house! I am happy to say that I am done with the first 6 months of the twin's lives. And 3 months of Nathan. My goal is to have 6 months for each child so that I can give them as Christmas presents. Ryan is the only one that has anything! So I think the others will really enjoy them! I have cut back on my readying, so now I have time for that! I believe I am on my 11th book. So averaging a book a week has been a good pace! I am ready slow down! But I have sure enjoyed it!
So here is the rest of the week. Labs tomorrow morning with a Xenapax infusion (anti-rejection) tomorrow evening. Thursday we have labs in the morning and before dinner Kevin flies in! YEAH! Friday we will be spending the whole day at the hospital because of Daniel's biopsy! So we pray nothing happens then! The biopsy (and I think I have put it before) is where others have started spiralling down hill! Then Saturday we are taking it easy as Daniel needs to as immobile as a 2 year old can be! So there will be some more updates this week! Thanks for reading!

Thursday Reoort

Well, Daniel is doing just great! His Prograf level has been a little high, so we are adjusting meds to figure that one out. We go to labs again tomorrow along with his breathing treatment for pneumonia. (He doesn't have it, it's just the meds to prevent it.) Anyhow, today was clinicals and he had his biospy changed to next Friday. 78 days post transplant. They aren't too concerned that it's not 90 post transplant. They said he's been doing so good all along that they aren't worried. So that will mean 13+ hours in the hospital. It's all outpatient but we show up at 8:30 am for 3 hours of IV hydration and then the procedure will take only about 1 hour. Then we are back to the day hosptial where they watch for blood in the urine, keep him laying down (good luck!) and just make sure everything goes well. So we'll leave about 10-11 pm they said. They said that it's kindof tricky as they roll him to the side and hope all his bowels fall to the bed so the kidney is face up and there is only skin, cavity lining and then the kidney. They use ultrasound to do everything, but there are still the occassional oopsies of hitting a capillary (sp?) or whatever blood vessels run in the kidney. So that is why they watch for blood. Treat with antibiotic and they are good. Then 1 week after that we should get to go home! So I will actually wait and see before we determine what we will do as far as stay here for a few days until the family comes over for Thanksgiving or actually go home.

Tuesday Morning Report

Well, after finally getting to San Jose Sunday night (plane was delayed 2 hours...but I finished one book and started another!) and getting to bed at the wee early hours of Monday morning, Daniel had labs a few hours later. His creatinine came back at 0.6 (0.5 is his base) and his Prograf level was 14 (should have been 7-10....this effects the creatinine level.) So we had to lower his prograf and repeat labs Wednesday morning. I hope it had something to do with the time change and getting meds sooner than normal. So we will see tomorrow!
Daniel's biopsy is scheduled for Monday, Nov 17th. I kept saying it was 3 weeks away when it is actually 2 weeks away! YEAH! That means 3 weeks from now I could be leaving RMH! YEAH! It takes a week to get the report. They look for cell rejection in the kidney and the toxicity level of prograf in his kidney. Ironically enough, the prograf is a toxin to the kidney, so that is why they start his level up high and are weaning him down to a 'safe' range. Anyhow, that is our next big hurdle is to 'pass' that biopsy. I am a little nervous becuase my friend Leah and her son Layton had to postpone their trip home and spend a week in the hosptial because he got a staph infection during the biopsy! So we'll just add that to our prayers and pray Daniel will be fine!

Thursday Clinicals

Well, Daniel had a lab draw on Monday which was so good he didn't require another one until Friday (tomorrow). He had labs this morning which were LONG for Kevin (3 1/2 hours!) but turned out good. (I am in Fallon.) Anyhow, we have a date for the biopsy of Monday, Nov 17th. We are very excited as we are definately going to have the results back before the family comes out for Thanksgiving, so if the results are good....we'll go home with them after Thanksgiving! YEAH! 4 weeks from today is Thanksgiving....so we could be moved out from the RMH by then!
More good news, Daniel was approved for Make-A-Wish! So now it's just the deciding part! We kicked around a pool since Daniel can't be in water except oceans. We thought about a camper trailer, all our boyz are too big for out pop tent trailer. We also thought about DisneyWorld, but 3 of the 6 boyz wouldn't remember that and it would be over in 1 week! (But I still dreams about it!) We have also thought about a nice playground set for the kids in the back yard. So, we'll see! I guess it takes about 6 months to get everything done, so by next summer!

Weekend Update

The local paper, Fallon Free Star, did another nice article on Daniel. Here is the link:
http://www.rgj.com/apps/pbcs.dll/article?AID=/200810170137/FALLON/810170330

Daniel's labs on Friday were good. His creatinine actually went down a little to 0.4. They want it to be in teh range of 0.3-0.5 so we are good. His prograf and cell-cept levels (the anti-rejection meds in his system) are also at good levels. So we were pretty happy about that. His white blood cell count was a little low so we had to adjust his cell-cept level for that. So hopefully that will work. We have labs Monday morning. Daniel has a little runny nose and cough which makes us nervous (signs of kidney rejection) so I think I will be getting him into the Doctor's office on monday so they can look at him. Sammy was diagnosed with tonsilitis the day after they left, so I am wondering if he caught that bug! I just hope he doesn't have to go into the hospital! Kevin flies in Monday and I fly home on Wednesday. But that is about all!

Thursday Update

Well, it's been a while since I've updated. Mostly because nothing medical has really happened. I had my sister, Lora, here and then my family came for my birthday. So here are some pictures of the visits.


Wednesday night (when my sister flew in) someone donated 10 Suite tickets to Disney on Ice. So OF COURSE!, we went! Layton is Daniel's little buddy here in the picture. We had a ton of fun and great seats!


Friday Lora, Daniel and I went down to Monterey to the Aquarium. Always fun and amazing place!


This is at the Oakland Temple. Daniel was SO excited to be with Sammy! Just thought this was a cute picture!


Then of course all the boyz had to get in the picture! OK! Mom made them! :-)


We took the kids up to San Francisco to Pier 39. HAD to see the sea lions! Alcatraz is in teh back ground of out picture.


Back at the RMH there is a game room with a PS2, PS3, Wii, XBox and something else....I can't remember. But either way, the boyz were in heaven!


Furry Friends came when the kids were here. There were about 5 dogs. You can see Bryce telling a dog to sit in 'dog language'. He LOVED it!


We also took the kids to Ardenwood Historic Park in Fremont, CA. They had all kinds of animals. Here they are at the bunnies. It's a beautiful quiet place amongst the big cities. Just a turn of the century area that is preserved to look at. Tankhouse, blacksmith shop, country kitchens, etc. It was fun and relaxing!


The RMH has scooters and bikes to check out. Here we got some scooters for the kids to ride.

Daniel's clinicals went well this morning. We are cutting back his magnessium. It causes diarrhea and gas pains for him. So I am happy about that! He had his 3rd Xenapax infusion yesterday....no side effects, so that is good! We have labs tomorrow morning and then we are done for the week! Daniel is 8 weeks post transplant. We are excited to talking about his biospy already. If that comes back good, we get to go home. Daniel's is scheduled for the 21st of Nov and it takes a week to get all the results back. So we are hoping to move it up to the 19th so we can have results before Thanksgiving. And then get to go home when everyone comes out here!

Tuesday Report

Well, I ended up staying awake until midnight and then waking up at 4 am to give Daniel a Bolus feeding. That means I take the things he should have been getting thru the NG tube and put them in manually....10 mLs at a time. Total night feeding of 740 mLs. So my fingers are alittle tender today from doing that 74 times! Oh well! We'll ahve to do it again tonight because Apria (the company that supplies them) doesn't have an adapter in stock in our local store, so we are getting one shipped over night. So I'll be doing it again tonight.

We have a really good day today! Did laundry, went to Wal-Mart, clean the room up a little. My sister, Lora from Ohio, is flying in tomorrow to spend the rest of the week with me! I haven't seen her in over 5 years! My family comes Saturday nigth, so she'll get to meet Nathan, Daniel and Sammy! I was pregnant with Nathan the last time I saw her! Anyhow, we walked down town and did a little shopping at the Farmer's Market across the street. There was a fall festival here at the RMH. Daniel had a BLAST! They had so many things for him to do and see! Furry Friends came (dogs), he got a stuffed animal fish and a balloon animal. He painted a 'baby pumpkin' and went to a little petting zoo and didn't want to ride the pony that was here. But those are the following pictures.

Monday's Report

Well, I started out with labs this morning which ended up good. His levels are all good. Prograf in it's range. Creatinine still at 0.5. His phosphorus is kindof high, so we are discontinuing the sodium phosphorus. We need to get more sodium in thru his mouth because his sodium is a little low. So MORE popcorn and chips! I wish I had that diet! :-)
Today while I was changing the tape on Daniel's NG Tube (that is the feeding tube taped to his face) he was screaming and fighting and we were just having a GREAT old time! Anyhow, he moved one way and the NG tube went the other! So we made a trek up to the doctor's office to get it put back in. I refuse to do it! I kindof told Amy (our dear nurse who is probably going to ask for me to be reassigned to someone else!) that I refused to do it if it meant I would take him to the ER! I was just having a bad day and later apologized when it was all over. But him and I both cried during the whole thing! I just really don't like the NG tube! And watching them shove that thing down his nose solidified it. YES! I know it doesn't really hurt him, but I hate doing things to him that cause him stress! Anyhow, then waited for 3 hours for him to pee in his urine bag....never happened so I took the bag off. I'll bag him before bedtime! So we came back, ate and played in the play room! He loves me now! Life is good! We are about to go have popcorn and grape Kool-aid. Our bedtime snack!
Footnote: Had a good bedtime snack. Came back....got Daniel all ready for bed....went to hook him up to the feeding tube machine....NEW NG TUBE DOESN'T FIT THE BAGS!!!! The same company sent me the tube and the bags! UGH! So I called the on call ped. nephrologist and she said to give the meds via the NG tube (I have a medicine syringe to stick those in) and then I have to make sure he gets liquids thru the night! I am so exhausted I am going to have to set an alarm because unless he wakes me up (which he does that often anyhow) I know I won't wake up on my own! So we will be getting ANOTHER NG tube put in tomorrow.....I am sure!

Today's Clinical

We had clinical this morning and we saw Dr. Alexander and Dr. Conception (surgeon). FIRST....Daniel only woke up ONE TIME last night and didn't cry out in the night from nightmares! YEAH!
Anyhow, I went in prepared to 'gently persuade' them to not do the MAG3 test on Daniel. I found out last night Daniel's creatinine is back down to 0.4! Perfect! And the urine is his kidney is going away according to the Monday ultrasound. Well, they said, we have 2 pieces of good news and one bad. I asked for the good first. They said they felt they didnt' need to have the MAG3 done because everything looks good! I was excited about that. Then next news was, '"We are going to give you the bad news first.....since you don't have a pediatric nephologist near you in Fallon, we can't let you go home today." I WAS GOING TO GET TO GO HOME! Daniel is doing very well, but they don't have someone to send him back too. It wasn't too disappointing. I planned on being here for the full time. I didn't even know that was an option. But we can go to church on Sunday! I am REALLY excited about! So all in all it was a good day. I found out our little friend here, Layton, has a sinus infection and is in the hospital. Those kind of 'stay home and get better' illnesses are gone for Daniel. Atleast for a couple years.

Pictures

Kevin, Daniel & I found a cute little park here in Palo Alto.

Rich area = nice parks!

Here are more pictures of when the kids came out. Here are the bumper boats. You can see Bryce chasing Ryan chasing Daddy and Nathan chasing Comptyn! They were all really wet! Not only where there squirt guns on the front of their boats, if you venture too far to the edge (check out the back ground) you get wet under that water squirting in! Daddy and Nathan did that!
Here is the commons area at the RMH. In the back ground you can get a little glimpse into the kitchen area. Not much, though. Anyhow, it was good to have them here! 10 more days until they come back! YEAH!
Daniel peeking thru a window in the play place in back! He has his cowboy hat on from the big birthday dinner thrown for all the September b-days!
They had an African Safari here at the RMH. Daniel got to pick out a stuffed animal....his is that HUGE tiger he is sitting on and then all the kids got a mommy and baby gorilla. It's kindof hard to see as the ground is a dark colored carpet. They had crafts and snacks for hte kids, too. Sarah does all these events and she does an amazign job!
We were in Longs Drugs and Daniel decided to try on a pair of glasses! It cracked me up! Looks like a little scientist!
At the birthday party they played Pin the Tail on the Piggy!
And here is Rosie the Pony. She was a soft and VERY gentle horse the kids got to pet. Once all the kids cleared out, Daniel warmed right up to her!
That's all for now!