Our Trip to California

We left Sunday at 2:40 pm to get over the Sierra Nevada Mountains before it was dark. We drove about 15 miles up into the mountains and traffic stopped! For the next 4 hours we drove between 0-4 miles per hour. For a total of 20 miles! When we got to Truckee, CA we took the first exit and drove thru town and got back on the freeway 5 miles later. We saved ourselves an hour! It was CRAZY! We drove 30 mph thru town and when we first started Daniel said, "WOW! Fast!" It was funny! But it was the fastest we'd driven in 2 1/2 hours! The higher we got into the mountains, the snow started and got harder. So we figured it must be pretty bad. The backed up traffic was every one putting on chains and then the check point to make sure you had chains on. So, we then drove 30 mph for 20 minutes and took the chains off! We could have driven with out them. I think they were just being precautious or something. Maybe it got worse thru the night. Some of our 4 hour highlights included Daniel peeing in an empty water bottle, pulling off at an exit with about 4-5 other cars and everyone taking potty breaks, almost getting hit by semis that weren't going to let us back in, etc. It was a fun drive up the mountain! But WAIT! It doesn't end there! We stopped at Colfax, CA McDonald's to use the bathroom and when we went to start the car back up....it was DEAD! So Kevin asked a guy to jump us. He had a jump pack. Didn't work. So he pulled his truck over.....Kevin hooked up his cables....didn't work. Daniel, at this point had fallen asleep because it was after 10 pm. We should have arrived in Palo Alto 1 1/2 hours ago! And we were still 2 hours from there. Anyhow, we called mom and dad and they looked up a local Bishop for us who we called. He gave us the name and number of a Brother D. Beckett. He was very friendly and extremely happy! I was worried about it being so late, but he was the cute man. He use to fix broken down semis on the highway. He is retired, now. He pulls out these HUGE jumper cables, hooks us up and our car starts right up! We think it was the jumper cables. Ours were kindof weeny ones! But we still can't figure out why it died in teh first place. No problems after that! So we were on our way, again! We arrived at the hotel at 1:23 am! 11 hours later. It's normally a 5 1/2 hour drive....it took us twice as long! Luckily we didnt' have any appointments until 10:30 on Monday so we could sleep alittle bit. Daniel's appointment went pretty good. He weighed 30.8 lbs! We finally broke 30 pounds! YEAH! He didnt' get the green light for the biopsy. But we did have his last breathing treatment and infusion done! So at 5:30 we were done for the day. We went and ate some dinner and crashed in the hotel room. Going to bed early! They opted not to do his biopsy because he has an upper respiratory infection and a HUGE tonsils. He is not an anesthesiologist's poster child for a good candidate for putting under. Since he has been having really good labs and this levels ahve been really good, they said we can do it next month. So we will go back March 16th & 17th for biopsy and to meet with an ENT there. They ahve to take Daniel's tonsils out over there because of him needing a higher blood pressure to keep the kidney profused. I prefer they do it, too! They know all about him. So we came back yesterday, instead of today. Daniel sleeps really bad at night....congested and apnea, so we are hoping things move fast on this whole tonsilectomy!
Sammy and Comptyn are doing pretty good with their tonsilectomies. It's been a week ago today they had it done. Comptyn might go back to school tomorrow, but we will see. Sammy never took his Tylenol with Codeine well. So we thought we'd get some suppositories. We thought once he had one inserted he'd prefer the meds going down instead of up!. WRONG! He likes the meds going up! Strange child! :-) Anyhow, they are both in our room, too, with humidifiers on them. We can really tell a difference in Comptyn's sleeping. We can't hear him at all. I think most of his mellowness is from not feeling too well, but he has been less senstitive to things. I think a good nights rest has helped that! I know it does me! Sammy, is just Sammy! We are glad he isn't the one who has to have labs done very week adn had a transplant. He would be a nightmare patient! But he is doing better. Ate some waffles this morning. I would never suggest tonsilectomy with a stubborn 3 year old! NEVER AGAIN!

Family medical updates

Wednesday Sammy & Comptyn are having their tonsils out. Comptyn is a little nervous about that. But perks right up when we tell him he gets popsicles and sherbet!

Daniel's labs have been pretty good. Last week his prograf level was low. We increased and were suppose to have labs done last week. But I got sick twice and Comptyn and Daniel both had upper respiratory infections. (Comptyn added double ear infections to his!) So, needless to say, we didn't get labs done. We went in today to get Daniel's 6 month, pre-biopsy labs done. Can you believe it's been 6 months on the 27th? We leave Sunday for California for a few days. Daniel has doctor's appointments on Monday and then his breathing treatment and last infusion. Tuesday is the biopsy. (7:30 am - 10:00 pm in the hospital) Then we will come home on Wednesday.

So we are hoping this biopsy comes back as good as the first one. I am a little more nervous about this time because his prograf levels have been all over the place. So we'll see!

Catching up on the latest.....

I am going to go backwards in my updates. that way I don't have to reverse my pictures. I forgot to upload them in reverse order! Anyhow, today was President's Day and so we decided to Sand Mountain. It's about 30 miles south east of Fallon. It's quite the hot spot when the weather warms up as people come from all over the west to ride their ATV's and dirt bikes up and down these sand mountains. So we decided to take the kids our out there to have them run it! Those 3 little specks on top of the mountain were Kevin, Comptyn and Ryan. They made it all the way to the top.

As you can see it was a long way to get to the base of the mountain....about 1/2 mile. Then it was about 3/4 - 1 mile UP! The 5 of us only made it about half the way up. It was a good work out and quite fun! The wind was COLD and the dirt was blowing everywhere! But we all had fun! Ended with a picnic in the van.

We then drove just below Sand Mountain to the Pony Express Station that was there. It was neat! There were walls left. Apparently the riders would ride a horse hard for about 10 miles and then find a station and trade horses. This picture below is of the area where the telegraph room was. To the left of the picture was another room the same size that was the living quarters. To the right was a room that was the kitchen area.
This is where the stables were. The walls on the top of the pictures were the living quarters, telegraph room and kitchen area. The walls are made of lava rocks.
This is the extra stable area. It wasnt' a very big station all together. But it was really fun to see.
We then went to Grime's Point. There were petroplyphs on some rocks there. Comptyn is here standing by one.
Here are all the boyz by another rock of petroglyphs.
This is Nathan with his Monster hat that slipped down over his eyes. It was funny because he'd walk with his head stipped WAY back so he could see.
Saturday we decided to take a bike ride. Ryan planned it all. (Passed off 2 things for his Bear badge in Cub Scouts!) So here are Nathn and then Daniel & Sammy in the tot carrier.
The bike-a-van is ready to move! Ryan, Comptyn, Bryce and I all rode our bikes.
Ryan's 9th birthday. He got an iPod Shuffle. He was VERY excited! With money he got from grandparents he got small camera (watch for his personal blog coming soon!) and then also a few craft things to make a replica model of his favorite planet....Uranus.
Picture of Nathan and Daniel waiting for the birthday party. Aren't they cute?!
Nathan, Sammy & Daniel singing Happy Birthday to Ryan while he gets ready to blow out the candles on his cake.

Daniel's Medical Expenses 2008

OK, so call me a sadist, but I love to add up Daniel's medical expenses each year. I was looking forward to this year's especially! Transplants are not cheap! So I have 2 lists below. First, his entire years worth of medical expenses and then just his tranplants. I am still getting things everyday from our insurance, so I am sure I am still missing some numbers. But as to date, here are the numbers:

2008 TOTAL:

Amt billed insurance: $570,972.54
Amt ins wrote off (won't pay): $293,994.69
Amt paid by ins: $273,704.05


TRANSPLANT EXPENSES:

Amt billed insurance: $535,172.04
Amt ins wrote off: $276,614.72
Amt paid by ins: $259,902.94

Then our total out for just copays, deductibles and out of pockets was about $6000. SO say what you want about insurance, but I am VERY grateful we have it! And I apologize to all the members of the school district who will probably have their rates go up because of Daniel! To us, it will be worth it! So see why I like to number crunch? Incredible, huh? I hope my boys grow up to be doctors!

Daniel's 5 Month Anniversary! (and other news)

Today Daniel is 5 month post transplant! YEAH! We had labs drawn yesterday and his creatinine was great right at 0.6 and BUN was at 25. We should get prograf back sometime tomorrow, hopefully. He hasn't been feeling well today. Not eating or drinking well, acting a little lethargic, he even threw up....and the tube came up, too. So needless to say, he doesn' have his tube in and it will go back in later tonight before bed. Unfortunately he didn't get a whole day free of the tube (it came out at 5 pm) but he'll get a little reprieve. Kevin and a neighbor in our ward gave Daniel a priesthood blessing about 6 pm and 45 minutes later he is eating popcorn, drinking and acting his normal self! YEAH! I know the pristhood blessing made him better!
A few other updates: (I can't remember if I have typed this before.) Daniel is perfect on the potty training! Sammy actually went poop on the toilet today! We'll see if we can get Sammy on board with this pooping thing!
Sammy & Comptyn will be having their tonsils and adnoids out on Feb 18th. FUN! FUN! FUN! Sammy is at 7:30 am and Comptyn is at 8:15 am. We'll see how that goes. We leave 5 days later for Daniel's 6 month biopsy in California. So I am hoping they have quick recoveries and no complications. Grandpa and Grandma don't need anything else on their plates while here with the other kids!
Nathan's birthday was on Friday. He is now 5 years old! He is pretty excited to go to kindergarten this fall. I can't believe he is already 5! Below is a picture of him.

Ryan, Comptyn & Bryce all got new bikes. We have been telling them for 3 years that when they learn to ride a 2 wheel bike, we'll go buy them a new one. (All the bikes we have are garage sales! Plus the older ones are too big for the bikes! It looks silly!) Anyhow, at their school, the gym teacher has a class on bike riding and bike safety. So that is where they all learned! Kevin took the training wheels one a few Saturday's ago and they all 3 jumped on and rode away! So here are some pictures of them on their bikes: Bryce
Comptyn
Ryan
This picture is the night of Nathan's birthday. Nathan, Daniel & Sammy were posing for pictures.

We have been teaching our kids (for Family Home Evening nights) from the "For the Strength of Youth" booklet that our church publishes. It teaches about standards that we all should live by (not just our youth) such as, accountability, modesty, language, honesty, etc. Anyhow, each of our kids have a copy and this is Daniel and Sammy singing songs from theirs. Notice Daniel's is upside down!

Prograf level

Well, it came in at 9.6! Suppose to be closer to 5. We lower the meds and it increases in his blood. I guess that is common in the little guys, but it's still frustrating because then we have to repeat labs again in 3 days! Rest of the labs are in the following entry.
Bananas are helping a little bit on the diarrhea. Now it's just runny oatmeal consistency!

Daniel's last labs

Just an update on Daniel's labs. They were drawn Monday morning and I ran out of time yesterday. I started our taxes! FUN! Anyhow, his creatine was at 0.6 which is right where it should be. His magnesium (which is what they decreased to hopefully help the diarrhea) was at 2.1 Range should be 1.9-2.4 Blood draw before decreasing mag was 1.9. So we are very happy that it didn't decrease and actually rose. I have gotten some almonds and cashews for him to supplement. And we'll start putting spinach in things. Like our meatloaf tonight! We'll see if anyone notices. Doubt it! We won't get his prograf level back until probably Friday. They have to mail that one off. But his last draw it was high at 7.4 and they want it closer to 5. So we decreased his Prograf again. We have learned that is just a yo-yo game. We'll have to pray it stabilizes, because when it does, Daniel can go longer between blood draws!
Potty training is going OK. Daniel's diarrhea hasn't stopped. The morning was is still really bad, but by the evening it's a little better. So today I got some baby food bananas and diluted it with milk. Then I bolus fed him (sucked it up with a syringe and put it down his feeding tube) It took about 20 minutes, but I am hoping that it will help. I think I will do it at night and it will counter the mag in his feeds at night. Other than that, Sammy tells us when he pees. We can tell when he goes off to poop becuase he goes and hides. Daniel is telling us more that he has to go. He usually has 1 maybe 2 accidents a day. The diarrhea means he stays in a diaper until about noon.