Legos on the Sabbath

So we have church at 1 pm. It drives my nuts because I feel like the mornings are like Saturday mornings. Running around and chaos. So for Family Home Evening this past Monday we had a lesson on Keeping the Sabbath Day Holy. What is expected of us at church on Sunday (how to act, talk, things we do during chruch, etc.) and also on what Sunday was created for and appropriate things we do on Sunday. We have some butcher paper on teh wall listing everything. So this morning was our trial run. The kids are doing really good! Here are some pictures of the things the boys made out of Legos: (I just noticed none of the kids have their glasses on. They look so different!)


This is Comptyn's version of the last supper. The brown lego is the bread and the red lego is the wine. He wanted purple, so I sang him the song, "Red, Red Wine". He didn't want to dig to the bottom of the tote to find the little lego people to sit around the table, he said.

Bryce told me he was going to make some "knights". I couldn't figure out what knights had to do with anything scriptural. Then he started building this big wall. In the Book of Mormon (scripture written by people on this continent during the time of Christ) there is a Prophet named Samuel and he was a Lamanite (Lamanites are the native American indians of today). Anyhow, Samuel was a Lama-KNIGHT. So Bryce recreated the story of Samuel standing on the wall and telling the wicked Nephites to repent and telling them of the birth and death of Jesus. (This all happened years BEFORE the birth of Jesus.) Samuel did all this while having the Nephites throw rocks, arrows, etc at him. So if you look close you will see Bryce dug to the bottom of the lego tote for the little lego guy with the crossbow! He was pretty excited about that! By the way, Samuel is the red lego on the wall. In teh picture we have of this story, Samuel is wearing a red robe. He couldn't find a lego man he was happy with.

This is Ryan's rendition of the Final Judgement. He explained everything! There is the Judgement Bar and the white lego is the chair Heavenly Father will sit in and listen to us and Jesus, he said. I was VERY impressed! He must have either read that in his scriptures or learned it at church. I don't ever remember talking about that! Anyhow, they are trying hard and I appreciate it! It does make a difference. Hardly any fighting this morning.....still some....but hardly any!

Optomistic News about the BK Virus

Last night Daniel's nurse, Amy, called. They are changing some of Daniel's meds again. He is going to start a medicine called leflutamide. It fights the BK Virus! Apparently when I asked about 'is there a cure for the BKV' and the answer was no, they assumed I was talking about the tumor part of it. I was just talking about his body fighting the virus before it gets that far. So we will be starting it, early next week (it's not a common drug, so our pharmacy probably has to order it). We give him high doses for 5 days, drop down his Cell-Cept for those 5 days (that is the anti-rejection medicine) and then after those 5 days he stops the Cell-Cept and we lower the dose of laflutamide. The major side effect of laflutamide is that it damages the liver. So we will have weekly lab draws while Daniel is on the drug monitoring his liver counts, laflutimide level, white blood cell and of course, creatinine levels. So I am VERY excited about that! This drug is really new (last 4 years) and so Stanford has been monitoring the BKV for a while. It is one of the 3 common viruses that surface after transplant. Amy said with this drug and the aggressive attack they take, they have a high success rate of 'killing' it! Laflutamide also acts as an anti-rejection drug, too. So we don't have to worry about that. Anyhow, we will be doing Daniel's biopsy soon (first 2 weeks of May sometime) and we pray the BKV will not show up in his kidney tissue.
Daniel's tonsils are healing good. The first 6 days were VERY frustrating and nerve racking! He wouldn't eat ANYTHING (otter pops, ice cream, etc) or DRINK anything! That was more frustrating to me! I would have to hook him up to his pump, which limited his movement. Then I'd try bolus feeding him (I'd hand pump liquids in his tube) and that would cause stomach cramps and diarrhea. I think it was a shock on his digestive track. Yesterday I bolused 30 mLs (1 ounce) every 15 minutes. I am SO ready for this week to be over! Kevin's been in Vegas for 2 days and I am ready for some help! :-) He comes home late tonight.
On another note, Denise and her kids came over last night and brought the movie Bolt with them. We did our movie night picnic with super nachos and watched a few movies. Bolt is a REALLY cute and funny movie! I would highly suggest it! Thanks, Denise and family, for adding some fun into this week! Have a great weekend!

Daniel's BK Viral Update

So I just got an email from Daniel's nurse. Daniel's BK Blood copies (as they call them) are increasing. They started at 806. Two weeks later it increased by 659 to 1519 copies. Two weeks later it increased 1413 to 2932 copies. SOOOOO, we keep decreasing the anti-rejection medicines in hope that his body can fight this on its own. I don't know what happens if his body doesn't. There is a line we'll get to where the body will attack the kidney more than we want. It's such a balancing act. So we go back to get labs May 1st. And it will take a few days to get results. We really have to get in to get the biopsy and they can determine how much the BKV is in the kidney. I know many of you do, but please remember Daniel's BKV in your prayers. We really need that number to come down showing that his body is fighting it. Thank you!

Daniel's operation

So yesterday was a LOOOOONG day! We arrived at the children's hospital at 4:30 and didn't get into our room until 9 pm. (There weren't any empty!) It's 30 minutes sooner than when we were admitted for transplant, so we are happy about that! IV didn't put in until 12:05 am.....IV fluids weren't ready from pharmacy until about 1:30. So, I laid Daniel in his bed at 1:40 and fell asleep. Only 2 interruptions during the night, but we were up and 'going' at 6:30. So it's a very sleep deprived day! Anyhow, so Daniel is here for tubes in ears, tonsils and adnoids out and his biopsy. So we have 2 teams working on him, renal and ENT. Renal team is the lead team and said we wouldnt' go down until 1 pm. WOW! At 7:30 Daniel was crying because he was hungry! It was going to be a long morning! So at 8 pm, our nurse came in and said ENT is coming to get Daniel, he's up! We were shocked and told them about what renal said. So down we went. We were grateful for that. Renal team wasn't however. They were scrambling. But ENT had 8 procedures that day and it was hard for them to 'fit' Daniel in. Only 2 biopsies. So about 3 hours later Daniel was done. He was NOT a happy camper! I believe it was worse than when he had his transplant! We were in recovery for about 1 1/2 hours. He is sleeping right now (with daddy) and has an oxygen nasal thing because he isn't breathing deep enough to keep his oxygen level high. They said once all the drugs wear out of him (from anesthetics) he will probably do better. He is a good little trooper! It's nice to only SEE him sleeping instead of hearing him sleep! His tonsils were so big, for 3 months, that you couldn't see his uvula (hangy downy thingy).
As far as the biopsy, they weren't successful. Dr. Sutherland tried 8 times (my little pin cushion) and couldn't get past the thick layer around the kidney. It's suppose to be there, so no worries, but still frustrating. We'll have to come back soon. We don't have a date yet.
So we are glad that the other was done! Now he can sleep well (and so can Kevin and I) and eat better and stop getting sick CONSTANTLY! We will be released tomorrow, as far as everything goes well. With transplants they like to monitor tonsilectomies because of the bleeding. It's a little higher than normal procedures and because of the body doesn't heal as quick.

Some pictures of my family.....

I have had fun taking pictures with my camera lately. I made a little scrapbook and wanted to share the pictures with you. Check out my boyz.....(Kevin took the picture of me. Not too bad! Only deleted about 40 to get to these. I hate having my picture taken, though!)

Bryce drying a bread pan. Look how innocent he is....don't let it fool you!
Nathan in his Clark Kent hair (it was taken right after bath!) and Superman shirt...coincidence?
My handsome hubby! Always looks good in a picture, if you ask me!
Comptyn playing Apples to Apples....one of our favorite games!
Ryan eating some cookies....OK....so it was staged. There was no milk in the cup, but he did get to eat the cookie!
Sammy & Daniel sharing a Disney book! Life can't get much better!
My 'shy' Daniel trying to by shy for the camera.
Sammy deep in thought over his Disney book!
Daniel snuggling up against me.......CUTE! (Daniel, that is!)
Sammy had to get in the picture, of course! Can't leave him out! I love how he is looking at me! I love my boys!

14 Years Ago Today....

So Kevin and I are 'celebrating' our 14th anniversary today. Below is a picture of day. Notice the clouds in the sky. During the night I remember waking up to hearing rain POURING outside. I said a little prayer and asked Heavenly Father to let it not rain on my wedding day. I then woke up to snow! (I couldn't find the picture of the tulips covered in snow....it was actually really pretty.) Anyhow, today it snowed! It was 73° yesterday and snowing today! Just for us, I guess! I put in quotes that we are celebrating because we aren't! We were going to Reno tomorrow to spend the day in the temple, but then Daniel had his tonisilectomy scheduled. So I guess we are going to California Thursday to spend 3 days in the hospital! YIPEE! :-) Kevin has an appointment up at the church tonight, so I guess I'll just give him grief for the next year and he can make it up to me on #15! ;-)



But really, these last 14 years have been literally the BEST 14 years of my life! I am married to an incredible man and appreciate his example to me. I love you, honey!

(This is where you all go.....AWWWWWWWWW!)

(Also, notice how thin that waist line was! And I use to think I needed to lose weight then!)

Wonder where those hands were?

Daniel & Sammy were watching something on TV while I was back cleaning bedrooms (keep them out of the way and it gets done a lot quicker!) Anyhow, everytime I kept coming out to put books away, or toys to trash here is the picture of Sammy I kept seeing:

Then I'd say, "Sammy, get your hand out!" He'd pull his hand out....I'd come out again and he'd have it down there! Then one time I came out and here is what I saw:

Poor Daniel! It's a miracle he doesn't get sick more often! But it was too sweet to tell him 'Hands off!'

On a different note, my kids dont' get the 'privledge' of having Easter egg hunts, the Easter bunny or all that. Boring old mom sticks to the true meaning of Easter and we re-enact the last week (something every day) of the Savior's life leading up to the Resurrection. Here was Sunday when we talked about Palm Sunday and Christ's entry into Jerusalem. We made palm fronds and took turns being Jesus. Daddy was always the donkey.