Jan 31, Friday, Swelling going down

Sierra' swelling has come down. She has lost about 2.5 lbs of fluid. This is about half of what she needs to. Definitely not as bad as it was a week ago, but it is still hangin' around.  She had another echo done yesterday in Baker, and it was unchanged from last week. So all this means we stay the course, Lasix 3 times day, watch her swelling, weight and blood pressure. She looks, acts and feels better too. 

Sierra and Lindsey are up skiing today.  Wish I was there, but I'm not.  Some times that dang day job gets in the way. Megan and Hunter have basketball games this weekend. Lindsey is still playing YMCA volleyball. And Gage is Gage.

Stacy and Lindsey fly out to Calif for biopsy on February 4-5.  It's been 3 months since her last check up and we are hoping for a big fat zero.  She had a 1A last time, so we just have to see. Her puffiness is completely gone! 

Linds also got a hair cut with the schools, 'Locks-of-Love' where they donate their hair.  Pretty cute.  She has also been checked out for braces.  She is going to get braces before Megan, and that ticks Megan off!  I asked Megan is she wanted to switch places with Lindsey. She said she is good with waiting.

That's it for now.
Jason

 Lindsey's before picture. 

 The after with her donated hair in a pony tail. 

 Lindsey getting molds made for her brace prep work. Not a fan of the pink goop.

Jan 24, Friday, She is home

She had her echo this morning and after a few hours of waiting, both the Calif and Boise doctors reviewed the results.  They are okay with her going home and rechecking in a about a week. Her blood test and echo was unchanged from early January, so they still believe it is medicine adjustments that is causing the swelling.  They really ramped up the dose of her diuretic.  Her kidneys should kick in anytime now.  We are doing daily weights to monitor if the fluid is coming off.  I knew I should not have worried so much. It's just the new norm we need to deal with.

Had a great time skiing.  Lindsey has really improved this year. To top it off, Megan won her game.  So it's been a good day. 

That's it for now. More excitement later, but not today.
Jason
 

 

Here is Sierra's feet first thing this morning after sleeping all night. She went to the middle school dance last night and was in tears when she got home because her feet hurt so bad.

 

 

 This picture was taken this evening.  Notice you can't find the ankle bone.

 

Sierra getting her blood drawn this morning.  The swelling is in her face, stomach and legs.  She is ready for it to be gone. (that is a picture behind her head not her hair. It just happens to almost match her hair color).

 

Jan 23, Thursday.

9:45, Thursday night.
Swelling still there loud and proud. Stacy talked to Calif and Boise doctors at great length. So.....tomorrow Stacy is taking Sierra in for blood draw and then on to Fruitland for echo.  They will then evaluate her from there and send the echo results on to Stanford.  The Boise doctor told Stacy he thinks it is still a med issue that needs to be balanced.  But Stacy and Sierra are taking extra clothes just in case.  We have been down this road before and have ended up in Calif for testing or treatment or more.  We will see how it goes.  I'm trying not to think about it much. The more I do the more I start to worry and that doesn't do anyone any good.

As for skiing, Lindsey and I are going and Sierra will have to make it up another day. Sorry Bug.

Lindsey won her second volleyball game tonight.  Stacy is the coach. The last match was a nail biter, 31-29. I thought it was dang exciting.

Megan's basketball team plays against Elgin tomorrow. Elgin beat us pretty bad in volleyball and made some snide remarks about playing a smaller school.  Megan wants to thump them good!

Till next time.

Jan 22, Sierra's swelling

Wednesday,
Feeling a bit of stress tonight and need to let it out.  It doesn't do my kids any good to see Dad all stressed out so here you go.  Sierra's swelling has not back off and frankly it is getting worse. She is back on her full dose of Lasix and other meds and hopefully, it will kick in and release some of the fluid she is retaining. This evening her feet and legs were swollen and in the mornings her face is very puffy. California knows and is monitoring. She has gained about 7 pounds of fluid in the last 3 weeks. So there you have it. I let it go. Stacy is at work tonight, and I am starting into tax season.   Hopefully I will report in a couple of days that Sierra's swelling has gone down and we are back to normal.  I am hoping to go skiing with Lindsey and Sierra on Friday. One last time for me before we get really busy.  Just have to see. Tonight, I just need to breath, we will be just fine.  As I have told other heart parents, 'It never goes away, the concern is always there.'

Jan 14-20, More Sierra Biopsy results

Jan 14,
So Sierra's antibody rejection result came back, it was a 1 :( It was 2 in April 2013 when they started her plasmapheresis.  In May it was a one then in August and November it was a 0. It's not a 2, but it is creeping up again. They are waiting on some Labs and then they will discuss her in their Thursday meeting and decide what to do. Nothing aggressive yet, she will just probably have to go back sooner than later.  Life is good out on here on the prairie, all the kids are involved in various activities.  For the most part we don't think much about the antibody rejection, hopefully we can keep it that way.

Jan 17,
Heard back from Nancy regarding Sierra's last blood antibody test. It came back unchanged. So what does that mean?  After skipping a month of IVIG it didn't go up, that is good. We were surprised to hear they still want to do IVIG ever 2 months (not monthly) and biopsy in 3 months. As conservative as they are, we thought they would want to see her earlier.  As of now, between Sierra, Lindsey and Gage, we are still heading to Calif monthly, so they still might be changing treatment dates to accommodate. 

Fun weekend ahead.  Megan has been invited to PK's birthday party in California.  So she gets to fly out tomorrow and spend the long weekend with some of her Calif friends.  We have games and skiing and life going on.  Work is picking up. Cold here. Need more snow / moisture. Sure glad they found Dale Smith's plane. God bless their family. Till next time.

Jan 19, Sunday
Haven't heard much from Megan. All we know is she is having a great time.  Had a fun 1-2 grade YMCA basketball with Hunter's team. We didn't win, but came dang close. Abigail Cox had the tough job of guarding #11. He was a big kid who was scoring a lot of points. In the 2nd half she shut me down! It was awesome.  
Last bit of lovely, Sierra's swelling is coming back. You can see it in her feet and face. They have cut back her Lasix, but it appears they many have cut back to much. I refuse to get worked up over this! Tomorrow Stacy is calling Calif to review, but we are guessing they will go up on he meds.
Last night as a treat.  For the first time since last June, we watched the Dateline show. It's interesting how we have all avoided watching it, but for some reason, we were all ready to watch it again.  Amazing how all the emotions and feeling came back.  Stacy and I were emotional through many parts of the show. Reminds me how much I don't want to go through that again.

Jan 20, Monday morning.
I won't lie, Sierra's puffiness is back. She woke up with a swollen face and had swollen ankles last night. We increased her Lasix last night, and we are calling California today. We still are not freeking out (yet).  They had turned down her Lasix a week ago or so, and we are thinking we may have dropped them before she was ready.  She has been on Lasix so long maybe her kidneys depend on it. But lets see what Calif says. 
Watched the SF 49er's loose to Seattle.  We were pulling for the Niner's since we had seen them play. But now we are pulling for the local team, the Seahawks!

That's it for now.
Jason

Jan 8-12, Biopsy and life

Jan 8, 10:55 am.
Sierra, you have been in biopsy for about 55 minutes. Anytime now, Stacy will call me with results. It's pretty hard to sit in my office in Oregon and work waiting for the Dr. Perry results.  I know we have been down this biopsy road 30-40 times, but each time I get that squirrely little feeling in my stomach, and that demon on my shoulder. I told my mother that I was preparing for an extended stay. If I am truly prepared for that, then any news that you won't be coming home tomorrow won't be a shock.  I'm not being pessimistic, we just understand that just because she looks and acts great, doesn't mean something is going on inside.  We are in good hands.  Time will tell.

11:05 am.
Just received a text from Stacy, "Just came out. All went well. Pressures a little higher than last time BUT still normal."

11:14 am.
Phone call from Stacy. Talked about her visit with Nancy. Possible future IVIG in Baker, need for more exercise, and various meds she is on.  Bernstein came by to visit. Has to go.  More later.

12 noon.
Stacy texts, "Bernstein was not worried at all about Sierra's pressures. He said they are still normal and not to worry about them".  Bernstein is the top dog. What he says goes!  Sierra is now getting her monthly IVIG, will take about 12 hours.

Next day, Jan 9.
Sierra had her 12 hour IVIG. Went well, as usual. They should be flying home today. It's been a bit wild here at our house. We had Lacy and Patience Wick staying with us. That gives us 6 kids on our house and only dear ole Dad to fix dinners and do hair. I welcome Stacy's return.

2:00 pm. Stacy and Sierra just landed in Boise. They are on their way home.
Received message from Calif, Sierra got another 1B. Calif will discuss and decide when to see Sierra again. As always, could be worse, could be better, but we will take it.  By far the BIGGEST issue is when Stacy was going through security in San Jose Airport, they took a small bottle of Australian Vegemite!! I was really looking forward it!  They also took a bottle of Trader Joe's peanut butter.   

Jan 10, Friday morning.  Just like that we are back to normal. Stacy and Sierra are home. Lindsey and Sierra are off to skiing, Megan is off to a basketball game in Cove. Stacy and the boys are home, then to Cove to watch Megan play. I'm at work (and getting busier by the day). Tonight Stacy works, and tomorrow we have games for Hunter, Lindsey, and Megan.  Still love to be home!

Jan 11, Saturday night.
Great day. Lindsey played and won her first volleyball game in Baker, then Megan had a game today in Powder against Joseph, followed by bountiful baskets, and a trip back to Baker for Hunter and I's first 1-2 grader basketball game (now that's wild).  Lots of parents and family cheering on their child.  Funniest line I heard was from the other coach, Todd Chandler, and the top of his lungs as he is standing out on the court was, "Your going the wrong way!"  The way he said it was so funny.
Tonight, Sierra is off to LaGrande for a dance.  She looked so cute and grown up. Tonight Stacy and I are sitting by the fire waiting for our daughter, still very thankful for the busy day we had with our kids.
Heard they found Dale Smith's plane. Sure glad they found it and hopefully provide some closure to that horrible accident.
Time to go pick up my daughter.

Sierra after biopsy

Hunter in his first basketball game.

Jennifer Shek and some Vegemite. (Great Australian spread)

Chloe during the Bball game.  She is so funny out there.

Then there was Justin and Emily trying to pick out a desert off the Sumpter Junction menu.

Justin will eat ANYTHING but Emily is a bit more picky. It was pretty funny.

Jan 7, John Thomas

Had a few minutes and don't want to get behind.

Stacy and Sierra are flying out to California for biopsy and IVIG.  It has been 2 months since Sierra's last biopsy when she got a 1B rejection.  They fly out today on a commercial flight, stay at Bob Paugh's house, then biopsy at 9:30 Wednesday morning with 12hrs of IVIG afterwards.  It is going to be a long day tomorrow.  Then if pressures and biopsy results are okay, they will fly back Thursday.  Sierra is looking and acting good, so hopefully everything is good.  I will report as we find out.

Last weekend was a treat. We drove to Princeton Oregon, where my sister Garrity and Seth live. Seth works and manages a big cow herd for a ranch. If you have never been to Princeton, go to Crane, then travel south for another 20 minutes. There is a single wide mobile home that says 'Post Office'. That is Princeton.  Then on another 10 minutes down a dirt road and there they are.  A nice little valley with cows and hay.  It's a really nice place to live if you like the wide open spaces and NO neighbors. 

We were there for their son's baby blessing.  Little John Thomas O'Crowley is he pride a joy of that little family.  For the weekend, we had our 5 kids, Jake's 4, and Justin's 4.  That is 13 cousins fussing over one cute little John boy.  Plenty of stimulus for the little 'Taco John'.

That's it for now, biopsy results as I get them.

 My mother with her little grandson



 But this is what the seen was for most of the stay. 3-5 kids loving (and fighting over) their new cousin.

 

Megan's basketball game. She loves to play!

Jan 2, 2014 Christmas break

Finally an update.
Interesting how the blogging doesn't come as natural as it did back the in California days. Blogging then was very therapeutic for me, now I am just recording our life and thoughts.  If our lives turn upside down again, I am sure I will need that blogging therapy.

It has been a wonderful Christmas break. Kids are all doing well. Here are a few events we want to remember.

Kade's baptism. Back on Dec 21, Kade Thomas, our friends who live in Homedale and were in Calif the same time we were with their daughter, was baptized. I had the honor and privilege of speaking at his service.  I talked about the events of June 2012 when we met and how that has brought us together.

Kids Basketball. Lindsey had her last game over the break. I think she had a really good time, and I enjoyed coaching the kids. Now Lindsey is playing YMCA volleyball and Stacy is coaching that. I am coaching Hunter in his YMCA basketball with other 1-2 graders.  We have 9 kids with a WIDE range of skills.  Justin was going to coach it, but his daughter Alya broke her leg up skiing, (which is another story) so since his daughter won't be playing basketball, he doesn't want to coach. Go figure.

On the 20th we last good snow storm. We have about 3 inches of frozen snow on the lawn, and about 30 inches in the mountains.  We need a LOT more to get through the irrigation season this coming year.

On Christmas Eve we did our traditional tubing party at Little Alps. We have gone there every year (we can) since I was a kid.  It is good fun for the family, especially the kids!  Hunter and Megan had a blast going over the jump.  The other kids were a bit more conservative. 

Christmas Day was everything we dreamed of.  In our family, we have to get up and get the chores done before we can go in to open presents.  So we had all the kids up, out feeding cows, eating breakfast, and cleaning up before any presents were opened.  Then we spent the day at Jake and Wendy's for Christmas dinner.  The memories of last year are still very bright in my memory.

We still don't take the simple things for granted, like all being home, all eating together, room to run around, not hooked to machines, etc.

Last Saturday, Stacy and I took the girls up skiing. Now that was fun.  The girls are all good enough to get down the intermediate runs. Megan was fun to challenge, she would follow me down any hard run I wanted to go down.  Couldn't quite get Sierra to blindly follow along.

Played basketball with a bunch of Bingham's. Had Cass there, Hailee's husband. He is a 6'10" guy who played for USU and is VERY good. It was really fun to play against someone that big.  He took it really easy on us and gave everyone a chance.

A few days ago we killed 3 pigs up at Nick's.  That is NOT for the light hearted.  We now have them gutted, skinned, halved, and hanging in the shop. Tomorrow we will be cutting them up into pork chops, ham roasts, sausage, and bacon.  It's actually pretty fun.

Lindsey had a fun birthday on Sunday. Big 10 years old. We had a fun get together with family and friends and played guestures and other games.   For New Years, we let Sierra and Megan have some friends over for a party.  I KNOW they had a blast.  They made these music videos and painted each other fingernails. Even Samual and Roper came over.  They thought they were pretty cool hangin out with cute junior high girls.

Sierra and Lindsey had a heart checkups in Boise. Lindsey's echo and checkup was perfect. No issues there.  She goes back to California in early February for biopsy. Sierra has some issues with her echo that they are reviewing it with California, possible increased pressures. (grrr)  They didn't do and change anything, just issues to watch.  She goes back to Calif next week for biopsy and IVIG.

I would be lying if I said I'm not concerned.  Remember that little demon that sits on my shoulder that says, "What if?"  Well he is still there.  For the most part I don't think about it much, but it's always in the back of my mind. She looks and acts great, so we will just do what we have to do, what ever it is.

So that's a basic history of what we have been up to. Nothing out of the ordinary, just thoroughly enjoying being home...together.  We are truly blessed.

Now for the pictures...
Here are some fun pictures of Lindsey and Keanna, and a crash they had up tubing.

 

 

 

 

Next is a train we did up tubing.

 

 

Later, Jake crashed on the jump. Blood was everywhere. It was awesome!

 

Now for some skiing

 

 My cute girls



 

Now for breakfast / dinner

 Before...

After...