75, Monday Evening

 Megan and I flew in Sunday morning. Enough time to play with the kids and go to church. Sure is good to be back with the family. Megan and I did have a good time back home. Did a little of everything, farm work, office, basketball night, lawn work, and house work. Strange to think my next trip home could be with my good-lookin' wife and 5 excited kids, but not yet.
Kids are doing great. Gage is sitting here next to me drawing the letters 'S-S-S' and 'i-i-i'.  His vocabulary has picked up since Stacy has been working on his reading. He eats okay, not great, but he is a skinny 4 year old.  He is definitely the 'class clown' of the group.
Lindsey is doing awesome. she is puffy as can be right now.  She is very conscience of it and you can tell it bugs her. We keep reminding her it will go down as she comes off the prednisone. Her blood pressures, and attitude has been great.  She has biopsy this Wednesday.
Hunter is Hunter. Loves to be a little boy.  We watched an old episode of  The Hulk from the early 80's. It was fun, but Hunter got scared and ended up sleeping in our room. Good grief!
Megan is growing up way to fast.
Sierra keeps marching along. Hangin' in there with school. She looks and acts great. You would never know she has these heart pressure issues.
Had a reality check Sunday night. For the first time in several months I helped Stacy with the all the medicine for the week. Lindsey is on 14 different meds for a total of 31 pills given through out the day. Sierra is on 11 different meds for a total of 32 pills, and Gage is on 4 meds for a total of 7 pills. That's a lot to keep track of.
But that wasn't the true reality check. For Sierra, the last time I helped with her meds she was on about 7 different meds (not 11) for a total of around 17 pills (not 32). They have added and increased a lot meds in her to fight off this antibody rejection. They will probably repeat the IV treatments down the road. But somehow, someway, we need to prepare ourselves for re-transplant.  It may not be now, maybe months or years down the road, but I need to start preparing. The thought of it makes me sick. Some people say I need to be more positive and we will be just fine.  And we will be. Maybe, hopefully, these IV treatments and new meds will eventually get these antibodies to back off. But I would be foolish to not at least introduce the thought. We will be living from month-to-month and biopsy-to-biopsy with her. Her attitude is good, but I wonder what she really thinks under that young teenager mind. I know she leans on her Mother and her Dad for strength. She has said that.
But look, I am not doom and gloom. She really is doing, looking and acting great. You would have no idea this was going on. I still think we will be going home in late May, early June. But it's just the reality of the situation, and it was helping Stacy with the meds that brought these thoughts forward.
Stacy started writing the letter to Lindsey's donor family. We will deliver our letters to Mary Burge, our social worker, and she will pass it on to the donor family's social worker.  Even though we don't talk about it much, we do think and pray for the donor family.

 A path we found down by the rope swing. This place is quickly turning into the favorite place to be.

 

72 - Winding down the Week

A quick recap of the last few days.  Wednesday, Lindsey had clinic.  There was really nothing to discuss in respect to Lindsey.  She is doing absolutely amazing!  In fact, I really didn't have any questions for Lindsey, most of the time we talked about Sierra.  To finish up with Lindsey, she will have a biopsy next Wednesday (asleep), and then another one on the 15th of May.  After that, she goes to monthly biopsies.  Therapy she is doing awesome.  The therapist, Heidi, is doing a great job of coming up with new challenges for Lindsey.  She made it 15 minutes continuously on the elliptical.  That is her longest stretch of consistent exercise.  She is very close to being ready to go home.

As for Sierra, to review her latest.  Her biopsy was unchanged from last time.  They have started her on a new immunosuppressive drug called Cellcept.  It will take at least a month for the body to show if the Cellcept is helping or not.  She has a high level of donor antibodies in her body.  Lots of transplant kids can have high level of antibodies that don't do anything.  Hers, however, are actually attaching to her heart muscle.  This is making her muscle have to work harder to contract.  They are noticing the antibodies even around her coronary arteries ( the arteries that feed the heart muscle blood).  So what this translates into, it is definitely not good, but they are trying various treatments to fix it.  Not sounding real confident that they will work.  Meaning, we have no clue what our future holds. IF Sierra's heart pressures are unchanged or less in her next biopsy on May 8th, they will take out her port and possibly let us go home for a little bit.  IF they are higher, then the port stays in and we start another round of plasmapheresis with a stronger IV chemo agent.  This is another 6 weeks of treatment with a biopsy at the end.  Sierra is of course acting just fine.  She really is her happy, usual, self (which is encouraging).  They are still continuing IVIG, which she had yesterday.  Jason and Megan left the Oregon coast, stopped at the zoo in Portland, and then at Multnomah Falls.  Continuing on to Eastern Oregon where they headed to bed at home around 10:30 pm.  Sierra and I arrived at the Short Stay Unit the same time they left the coast.  We left the hospital same time they were heading to bed.  It is amazing that they can go across the whole state of Oregon with stops, in the amount of time it takes us to do IVIG.  It is always a LOOONNNNGGG day.

On a lighter note, Wednesday night the Rainbow Chef Keith, came and did his cooking class for the RMH kids.  Hunter, Gage and Lindsey all participated.  Sierra came down at the end after finishing homework.  They had a really good time.  They come the last Wednesday of every month.  Who knows if we will be here or not.  Sergio is doing well.  He went up to 3 west today.  Pretty amazing considering his surgery was 4 days ago.  He was weak and tired, but looked really good.  Enjoying a low key weekend and looking forward to having Megan and Jason back.

Gage just finished popping a strawberry in his mouth.  He was caught in the act!

Sergio with his new heart.

70, Wednesday in Lincoln City

Jason and Megan here in Lincoln City.

We have had a very fun week so far. She was so excited to see all her North Powder friends. Sunday we made it back in time for Church. Had dinner with Justin and Emily (those kids love Megan). Then up on Monday for the 6th grade trip.  There are 22 kids in the class and 19 went on the trip. 6 boys and 13 girls. Riley, Donavan, Samuel, Marshall, Justin, Omar, Logan, Chelby, Riley, Sincerie, Paten, Darby, Rachelle, Jessica, Samantha, Rebecca, Megan, Maddie, and Skyler.  Adults are Gary and Laura Pointer, Carrie, Lisa, Stacey, Betsey, Angela, Minnie, Karen, and Mrs Coleman.  The kids that didn't come were Nicki, Cade, and Marcus.  Megan has really enjoyed herself.
On Monday we traveled to a museum across from Biggs in Washington, then to Newport. We spent the night at the Newport Aquarium.  We got to 'sleep with the sharks', then off the Hatfield Marine Center. Later on we went out on a boat and happen to see a few whales and looked around at 'Pier 14'. There we a lot of good lookin' crabs there.
Spending the next 2 nights in a really nice house in Lincoln City. Today (Wednesday) we went to the tide pools at Yaquina Head and toured the light house.  We then hit the beach with the wind a blowing.  Some kids waded and others played volleyball.
Tomorrow, we are heading to the zoo then heading home.  It has been really fun!  Sure glad we came home for it.  Things are well in California, I think.  Clinic appointments were okay.

 At Museum

 Sleeping in the 'Shark Tank'

 At Yaquina Lighthouse.

 

 Hitting the beach

  

Sunday posting

This is a posting I did on Sunday, but I didn't have the internet.  I know it is out of sequence but I did it so deal with it.

April 21, 2013    
On the plane heading home to Oregon with Megan. We are going home for her North Powder 6^th grade field trip. She is one excited kid.  I’m going along as a chaperone. I’ll admit, I am excited to be tagging along, as long as she doesn’t feel like I’m ‘tagging along’.  Our other kids have been a good sport about her going. Of course they would like to go (especially Hunter), but understand that they will have their turn. We will be home for a week, then flying back next Sunday.

More of the same this week for Stacy, school, clinic appointments, physical therapy, and 12 hour IVIG for Sierra on Thursday. Sierra has some heavy homework assignments this week. Hope she will be able to focus to get them done.

That was enjoyable yesterday to go south to Marina and spend time with Stacy Mom and Randy, and her Uncle Gary and Aunt Arlene.  I echo what Stacy said. Just to have all the kids in the suburban, seeing them in the pool, watching Lindsey swim around with that big ole’ scare down her chest. Sierra wasn’t swimming with that port, but had a really good attitude about it.

We have been asked several times about us possibly going home. Right now it all depends on Sierra’s antibody rejection, and the damage it is doing to the heart (increased heart pressures and coronary arteries). After her May 8^th biopsy they will decide. If it is unchanged the earliest they may let us go is at the end May, just have to see.

That’s it for now.

Jason   

69 - Sergio's Turn

Yesterday was an exciting day for Sergio.  He finally received his heart.  He has had a long battle and was placed on the double Berlin (right and left sides) in the middle of September.  About a 7 month wait for his family.  There are two more people that we know that were in the wait with us, who have not received their hearts yet.  They are not quite to Lindsey's time line.  But, we still see the parents around the RMH and feel their frustration.  Our heart aches for them, knowing exactly how if feels to see another person get their heart, and there they sit still waiting. One happens to be Lindsey's friend Leif.  Yesterday was his birthday, so we stopped by to say Hi.  We were able to take some pretty cute pictures of them.

This evening, Art "the clown" came by and helped the kids make clown hats.  It was very nice of him.  The kids really enjoyed it.  Gage was sporting his around later tonight.  He kept wanting to pull some of the toys off to play with them.  I had to explain that once he pulled them off, they don't go right back on. He was pretty cute about it.  That is all for us for now.  Lindsey has clinic early tomorrow and Sierra has early morning Jazz Band.  So, we will hit the ground running in the morning.

Jason and Megan sound like they are having a really good time.  I am so glad.  Megan needed a little R and R ( Not that Sierra couldn't use some too).

Lindsey and Leif

 The kids sporting their new clown hats.  Art is pictured with them below.

Gage's true character coming out.

68 - Toothless

Really not a lot to report for today or yesterday.  Lindsey had a blood draw this morning.  Her labs are perfect.  Right where they want them.  She will have clinic this week and Sierra has IVIG on Thursday.  Really a low key week, which is good with Jason and Megan being gone.  The most excitement we have had around here lately, is Hunter losing his first 2 teeth.  He pulled the first one out yesterday.  The tooth fairy came last night.  Gage was working on his teeth pretty hard today to get his out so he could get money like Hunter.  To no avail, he failed.  Hunter came home from a friends house today, ecstatic that the 2nd tooth was really close to coming out.  We were eating dinner, so I made him wait to pull it out, for fear it would get lost.  When I came up from dinner, he was in our room sobbing.  Apparently he pulled it out over the sink and it fell down the drain.  I gently explained that this is not the first tooth children have lost.  If he will write a note the tooth fairy would still come.  He wrote a note that read, "Dear tooth fairy,  My tooth fell down the drain today. Cood you replas it with muny? thank you."  We will see if it works.  He is pretty nervous. 

It sounds like Megan is in heaven right now.  Spending the week with her classmates in Oregon.  Hope she enjoys herself.  Jason we love and miss you!  Have fun with Megan.

66-Grandma and Grandpa

Today we went on our furthest venture south of Palo Alto, ever.  It was very thrilling and enjoyable to have everyone in the suburban together, going further than 15 min.  We went to the coast to a place called Marina.  My mom had set this trip up a year and a half ago with her brother.  How convenient that we happened to still be here.  The kids were very excited, especially for the swimming pool.  Lindsey has been begging to swim since her VAD sites have officially healed.  Sierra could not swim because of her port.  She waded in the water of the kiddie pool.  The kids had a ball, swimming for quite a while.  We made them get out for lunch and they wanted to go right back in. We convinced them to go to the beach instead.  We flew kites, played Frisbee and dodged the waves.  We closed the evening off looking at the fun video and pictures my Aunt Arlene took of their trip. It was enjoyable to see the landscape of other parts of California.  The more "rural" areas we didn't know existed.  Our tour of California has consisted of San Francisco to Santa Cruz.  It was refreshing to see horses eating in a pasture, cattle grazing in a field, and  orchards.  I might of gotten just a "little" home sick.

  However,  I think my most enjoyable moment of the day was sitting back and watching everyone swim (Sierra wade).  It has been since the first part of June last year when we were all swimming together.  Lindsey is looking a little different in her swimming suit today then she did back then.  A moment that I wanted to take a picture of in my mind and treasure it forever! Unfortunately, our camera wasn't working so I didn't get a picture.  Oh how I will never take things for granted.  I don't know what our future holds, but I hope there are many more of these treasured days to come. Thank you Arlene, Gary, Mom and Randy for a great day!

65, What a day

It was an exciting day today. Blood draws, school and work for part of the day. Then at 2:00 things got a cookin'. My great college friend Leah showed up with 120 high school students to sing and perform here at the RMH.  She had been planning this for months. They did an awesome job. All the kids loved it. Good to see Leah, kick around the old days, then they were on there way. They had other performances and activities planned for the Bay Area.

We dropped off the kids at the Zengers for a sleep over. Then Stacy and I dressed up and went to the hospital fundraiser. There was a cocktail at 6:30, dinner at 7:15, and the program started at 8:30.  There were 4-600 people there we think. A LOT! Doctor Roth (the head of the CVICU) from the CVICU spoke about LPCH, the Heart Center, the Fellowship program, and then introduced us. Stacy and I talked for about 8 minutes telling our story and our experience 'living' at the hospital for 8 months. It felt good to help give back to the hospital that has done so much for our little family.

After our little spill, the MC came up for his usual monologue, the one and only Jay Leno. It fun to listen to Jay give his 'stand-up' that we are all used to hearing on the Tonight Show.  After the entertainment, and giving plenty of time for the alcohol to settle into everyone's blood stream, the auction began. There were only 5-6 items on the list but they all went for between 15,000 and 110,000. All to help the Heart Center at LPCH.

Afterwards we were able to meet and get a picture with Jay. We also meet a lot of other people that were moved by our story.  My picture did not turn out well, but a good picture is coming later.

Kids are gone for the night, so why am I still typing.
Good night!

 Lindsey and Celeste. Of all the students singing, she sang directly to Lindsey Lou. Lindsey instantly fell in love with her. Thanks Celeste.

 Our good friend, Leah and one of her students.

 The whole gang from Taylorsville, Utah at the RMH

 Yip, that's Jay

 Yip, That's Lindsey and Ashwin on the overhead fundraiser board.

 A lousy Picture of us with Jay. Better picture coming later.

   The band afterwards.

64, Grocery Shopping

Lindsey got another zero on her biopsy. Can't get better than that. They turned down her prednisone from 11 mg to 10, small adjustment in the right direction.

Other than that that, it was our new 'norm' today. School, work, meds, homework. Tonight I took the boys grocery shopping (what an amazing husband) while Stacy took the girls to the church for a quilt tying service project. I would go grocery shopping any day over tying quilts. I think tying quilts, going fabric shopping, and picking raspberries all rank on the top 5 ways to make time come to a stand still. Just ask my mother.  So the boys and I had fun picking out milk, bread, flour, oranges and marshmallows.

Tomorrow night Stacy and I speak at a hospital fund raiser. The fund raiser is for the Heart Center Fellowship program. Great doctors like Ashwin, Ashok, Stephanie, Holly, and others came here under this and other similar programs. Each one had and still has a huge impact on our lives. They are good people that have taken a real interest in our little Princess and others. Tomorrow or Saturday I will report who the host was at the event. I don't want to say until we have the picture to prove it.

 Lindsey heading in for her Biopsy....Awake!  It may be a while before we attempt that again. I guess she was a bit 'theatrical' (cried a LOT).

 Youth church group activity at the LDS Temple in Oakland

 Lindsey with her new friend, Gilina.  Gilina's Mom told Stacy that Lindsey was the first friend Gilina has had in the hospital school in over a year. Lindsey makes her feel good.  

 Gage-a-real-eous during Lindsey's lunch break at the hospital

Another picture of Lindsey heading off for her biopsy. She was pretty nervous to do it awake. She really got herself wound up.