Our trip to California for Daniel's biopsy

Well, this was a pretty interesting trip! We left Monday about 4:30 when Kevin got home from work. Arrived in Palo Alto at 10 pm. So good traffic, obviously. We got up to the hospital about 7:30 and started the day! The biopsy was successful as far as getting thru the tough exterior. One stick! We were grateful for that. We did get some news that we have maxed out Daniel'd $500,000 transplant policy. They made an exception of this biopsy. Which is good. It costs $25,000. We will be looking into the insurance thing. I think we still have a little left. $100,000 or so. Anyhow, the recovery went pretty good. Daniel did ahve a little blood in his urine afterwards, which is common. He was having a struggle keeping his blood pressure up. It was in the 80's and needed to be in upper 90's and 100's. They tried all different kinds of things. About 10 pm when we were suppose to be getting discharged, they ran some labs and did an ultrasound on him (that was actually at 11:30 pm). They thought he might have been bleeding internally and that is why his BP was low. He wasn't responding to everything. I was not too concerned about being there so late. I, too, was concerned about his low BP. I think it had to do with him sitting on my lap in a hospital bed for the last 10 hours, but just to make sure.....
So Dr. Grimm finally gave us the green light to go back to the hotel. We got to sleep about 2 am!
We got up and on the road about 10 am to come home. I had put my cell phone on vibrate the night before so we could sleep and missed the 6 calls that were coming from Stanford! Apparently the results of the biopsy came back. There was some tissue from the small intestines in the biopsy. Which means they perferated the small intestines! They do the biopsy guided by ultrasound, but you can't see the small intestines very well on the ultrasound. So we were almost to Sacramento when we finally heard all this. We were to go straight to our hospital and get some more labs done and an x-ray. Plus we were to start 2 anti-biotics to kill anything that might be in the small instestines. We stopped about an hour later and noticed Daniel's urine had blood in it again. He was fine up to this point. So we called and they told us to go directly to the ER when we got to Fallon. SOOOOOO, we spent 5 hours in ER last night and THEN came home! X-rays, ultrasound looked good. They were looking for built up air in the abdomen. He was fine! The lab results came back good. His hemaglobin levels was up. So that is good, too! We were discharged to watch his urine and LOTS and LOTS of fluids! This morning when he peed, there was hardly any tinge of pink. If I hadn't been looking for it, I don't think I would have noticed. So that is good. I knwo our prayers will be answered! They already have been and he is on the mend! Hopefully no more set backs!
Thanks, again, to grandpa and grandma for watching the kids for us! You are lifesavers! We never have to worry about hte kids! We worry about YOU guys! But not the kids! But you seem to survive and keep coming back for more! :-)

Happy Mother's Day Weekend (added portion in red!)

Here is what has transpired the last few days here. Starting earlier this week we had some friends (the Youles....it's about the only family I ever talk about!) over for Family Home Evening. Hoping they wouldn't think we were stranger than we are, we still carried on with all the singing, and playing strange games (along with lesson and scripture reading). Here are some pictures when we played a game with gummy worms. It was a lot of fun! My kids told me they think the Youles should come over EVERY day! I agree! They might get sick of us, though!

Daniel with gummy worms on his head. Kailee in the background trying not to let her worms fall off!
Joshua with the worms on his head. He was just too cute the whole night!
Ashley and Comptyn. They have known each other since kindergarden (so going on 3 years this fall) and I am glad they have each other....they are good buddies!



Yesterday we planted our garden. The kids were, surpisingly, very helpful! We did corn, carrots, tomatoes, green onions, yellow onions, red potatoes, spaghetti squash, giant pumpkins (200-300 pounds...they claim!) summer squash medley (crook neck, yellow and zucchini), beets, butternut squash, sweet peppers, watermelon and cantalope. We are all very excited and hope we can thwart off bugs and disease and help our little garden grow! Thanks grandpa Lords for preparing the soil so well last fall for us! We were too busy with Daniel....we appreciate it!


Later in the day we (the kids and I.....daddy was gone most of the day with church things) were out in the front yard working. OK, Bryce and I were working and he wouldn't have been helping me pull weeds if he wasn't 'paying back' 2 sets of glasses he broke! But we still had a good time. Especially when the grasshoppers were discovered! Sammy hated them! Daniel LOVED them, until one jumped up onto his tape on his face! A little too close, I think!


Later on Daniel was doing some bench pressing with his 'dum-bells'. He even does the grunting noise like they are heavy!












And now to Mother's Day! I got to sleep in until 8 am! That in and of itself was great! The kids (especially Comptyn) were very excited to get to presents. Between school and church (which I got after church) scouts and daddy taking them to the dollar store, I made out pretty good! I got 3 plastic statues of dogs and a lion which were immediately confiscated back by the children who picked them out! A little ring holder and picture frame. A beautiful story written by Comptyn. A vase of tissue paper flowers by Ryan. Also a pet rock dog by Comptyn. (I told them if they brought out a really dog, I was leaving!) Kevin 'bought' me (I went to my friend's house and picked them out....she was selling them) a beautiful necklace, bracelet and earring set. You can kindof see the necklace in the picture. I didn't have too cook anything today. I didnt' have to clean up anything today. I didn't have to get kids ready for church today (OK....I did do the final inspection!) I FORGOT THE BEST PART! I got an 8 pack of Reese's Peanut Butter cups! MY FAVORITE! Luckily there are 6 kids, so they went fast. I didn't eat them all! I can't pace myself!



Thanks boyz (including Kevin) for making my day wonderful! Thanks to Ryan, Comptyn & Bryce's birthmoms for allowing them to be in our family! You started me on the road being a mom! Ryan, Comptyn, Bryce, Nathan, Daniel and Sammy.....you are the 6 BEST sons a mom could ask for! You bring laughter and love into our family.

Proud of my Boyz

Yesterday Ryan and I were talking about studying the scriptures and the difference between just reading them (which we do every night as a family) and actually studying them. Since I usually wait until my kids are at school, I thought that probably isn't good because I can't involve them and they can't see that I do that. So Ryan and I decided to get up a little earlier every morning and study our scriptures together. I had bought this book below a while back because I feel it is a very good resource to draw from for family study. They break down teh scriptures and have different things to do to study them. For example, there are activities, quotes, insights, games, etc to make studying a little more interesting. So we got up this morning, and of course Comptyn was awake and decided he would join us, too. Bryce sat on the ground a played. (which is actually good for him because he has to be doing something to pay attention better) I am proud of my boys! They really do want to learn about Heavenly Father and the things found in the scriptures. It was a great 30 minutes and a wonderful way to start our day! I love you boys! I love being your mom!



Bryce took this picture.....good job Bryce!

(PS They also make these books for New Testament and Doctrine and Covenants!)

Last time you'll hear about this.....& boyz day out!

3 NIGHTS IN A ROW! Daniel is moving OUT of our room! OK, maybe not. But I promise this is the last time I will comment on Daniel's sleeping thru the night.

Yesterday some friends of our called up with some extra tickets to the Reno Aces Triple A baseball team. (Arizona Diamondbacks draw from them.) They had 5 extra tickets, so Kevin took the 4 older boys and went. They had SUCH a good time! I heard about it for about an hour afterwards. The highlight was 2 different things. The big baseball that sang songs and the kids go to run the bases and got a little baggy of toothbrush & paste and dental floss. I think Kevin was a little jealous!

Here is the giant baseball that would sing "Take me out to the ball game". It moved it's mouth and head. Bryce was afraid of it, he said.
Nathan and Bryce, pregame. Bryce ready to catch some foul balls.
Comptyn and Ryan all geared up for the game.

Da Boyz all ready! Orin and Hamilton are in the bottom of the screen.
Ryan walking to go over and run the bases.
Comptyn and Nathan are a little more excited about it!

The actual running!

All the boyz after they got their goodie bags! Thanks Sommer family!

Dare to Hope!

Well, another uninterrupted night! We are pretty excited! Daniel is back to his old self....eating whatever, drinking from his cup (no more bolus feeds!) and we can got 7-8 hours with out pain meds! YEAH!

Daniel's biopsy will be next Tuesday the 12th. So we will be heading back to California Monday. Hopefully they'll be able to 'stick' him then.

Off to pull weeds in the yard and apply manure tea to the bushes and trees. BOY does that stuff stink! But it's suppose to pay back dividends in the plant's growth! We'll see!

OH! And go check out Ryan's blog, we finally are putting his pinewood derby pictures on there.

1223 Days.....

Daniel (and Sammy) have been alive for 1223 days. Therefore, they've slept that many, too. In those 1223 nights I can count on one hand how many times Daniel has slept thru the night. LAST NIGHT WAS ONE OF THEM! YEAH! 3 nights ago we were up 8-9 times.....we have come full circle. I actully got right out of bed when my alarm went off this morning! Kevin and I will be quite rested today! Watch out world! We might have a productive (AND not feel exhausted at the end) day! :-)

Dear Daniel Updates

Are you tired of hearing all these updates? The alternative would be that he was healthy and there wouldn't need to be any, so I am kindof getting tired of them! But at least they are good news! Labs done on Monday. BUN was 26 and creatinine 0.4! Those are PERFECT! Which I am very grateful for as we have had to literally force liquids down him for the past 12 days since tonsils/tubes. I took Daniel into the doctor last Friday because he kept complaining his ears were hurting. (i thought tubes might have slipped or something) She said it was pain displacement because of his throat. (Even thougth I pointed out it was still really swollen and shouldn't be....she said she has seen it take a week to go down) I figured with his slower healing, it was that. The last 3 days have been nightmares! We were waking up EVERY HOUR of the night becuase of his ears. So I took him back in yesterday because I can't take it any more. There is nothign we can do to comfort him, he cries and whines 3 of the 4 hours he is on pain meds. It has just worn me too thing! well, we are now on a powerful anti=biotic we started last night. He got his first dose at 5 pm. "Only" woke up 4 times last night. The last time being 5:30 I drugged him again and it is currently 10:45 and he is still asleep and hasn't cried out at all. (I also gave him another dose of anti-biotics) Anyhow, YEAH! I think today I might actually be a more patient mother!
We started Daniel lefllunomide (I am now spelling it right) for hte BK Virus. We pray that will help eliminate that from his body! Yes, if you look it up, it is used to treat rheumatoid arthritis, too! Strange, huh?
Also, something about his labs....when Kevin was gone last week I stopped giving Daniel his magnessium supplement in his feeds at night. It was just one less thing I needed him to wake up crying from. (He gets REALLY bad gas pains during the night form that med.) So he was off it for 4 days and his levels came back tied for the best they have EVERY been! 2.2! So I am going to keep him off until his next blood draw and see how it goes again. If levels are still good, then I'll tell Stanford. IF they aren't good, I'll still tell Stanford what I did so they don't increase his mag dose! Magnessium is for muscle and tissue. So don't fret, I'm not hurting Daniel! :-)
Last night was pinewood derby....look for pictures and report later! I am off to keep cleaning!