Day 46, Easter Sunday

Been a very nice Easter Sunday. I flew in Saturday morning and it was great to see Lindsey running down the sidewalk at the San Jose Airport to great me. She looks and acts great. Her cheeks are getting puffier from the prednisone but that is expected. Her attitude is good and she loves to eat.  Her favorite foods right now are chips and salsa (mild), dill pickles, and green salad, pretty much any salty foods she is craving. Not sure why, probably gets it from her grandmother. Sierra is doing great, she looks and acts fine. Again, Thursday will tell us which direction, if any, she is going.

Right now Gage, is wondering around avoiding going to bed. He eats on occasion. Wish he ate a lot more. This morning after breakfast he said,'my tummy hurts'. I really really really hate it when he says that. But he ate good this evening and is acts good most of the time. 

On Saturday the Zengers took all 5 kids while Stacy and I walked 'The Dish'. It's a popular 3-4 mile loop up to an old satellite dish above Stanford. Lots of people walk/jog the loop and I can see why. There are deer, cattle, jack rabbits, a good view of the city, and tons of ground squires that need to have there destine explained to them.  Uncle Justin, Jake, Nick and I could have a hay day with our .22 and .17.  Stacy and I really enjoyed getting out, walking and talking.

Saturday evening we drove to Fremont to meet up with my ole college friends the Ripplingers.  They came to visit us way back to June when Lindsey was first put on the Berlin and Gage was getting the pacemaker.  A LOT has happened since then.  They are here to pick their daughter up from a field trip and spend some time for spring break.  Sure good to see them.

Nice Easter Sunday. It was good to go to church and reflect on the true meaning of today. I am grateful Jesus Christ and his life, suffering, death, and resurrection.  It gives our life direction and purpose.

This evening we were invited to the Daines for dinner. It was very enjoyable. He is a professor of business law at Stanford, but you wouldn't guess it. Just a happy fun loving family. I did had another one of those moments. We were sitting in their dinning room talking and I happen to look outside where the kids were playing, and it hit me. That right there is what we had prayed for. It was a scene we couldn't even image for 8 months. Couldn't even comprehend it, and just like that, there it was. Five kids out playing. I know it's not that big of a deal, but it was.  And once again, I was grateful for the small things we all take for granted.

 The Dish

 Cute little buggers aren't they?

 What do you think Uncle Justin?

 Hunter at a friend's birthday party Saturday noonish.

 Gage at his heart appointment last week. The green froggy thing on his chest reads the pacemaker.

 Sierra and Lindsey at Short Stay getting their IV treatments last week.

Roper and Uncle Jay back home on the Owhyee River.

No, I wasn't there, but Roper wanted our kids to see the fish he caught.

 

 

Day 45 - Reminder of Options

Sorry that I have not updated in awhile.  It has been busy, or there has been nothing to report.  Garrity flew in Wednesday morning to come spend her spring break with us.  We were all very excited to see her.  Yesterday, Lindsey and Sierra had IV infusions.  They went in at the same time at 8 am.  Lindsey's infusion was 4 hours and Sierra's was 15 1/2 hours.  It was a very LOOONNNNGGG day for Sierra.  Garrity stayed at the RMH with Gage and helped with picking the kids up.  That way I could stay with Sierra and Lindsey.  Sierra and I returned home to the RMH at 11:30 last night.  This was her last IVIG infusion before her biopsy next week.  They will be checking to see if all of these treatments have been working.  This is probably not her last IVIG ever, but it is the last one of her treatments we have scheduled for now.  Lindsey's tests for IVIG came back negative, so she no longer has to receive IVIG.  She is really sad about that (not!).

A few thoughts I wanted to write mostly for Jason and I's sake, to remember. When we first came to the RMH almost a year ago, there was a family here.   As our time here has continued, I have had some brief conversations with her.  Finding out, that they are here because they have a little boy that has a very rare incurable disease.  He was born with it, and has been in and out of the hospital his whole life.  His admissions were becoming more and more frequent. Since his admission here, he has not been out and his trips to the PICU are more and more frequent.  Often, I would see him at school with Lindsey.  I sat and realized what a day here is like for her. With two small girls, she tries to help give them normalcy to life outside of the hospital, torn trying to be there for her son as well, and a husband attending school so he can provide for his family. (I can relate, to the children part).  The difference between her and our situation, is we have options, we can receive a transplant.  For them, there are no options.  Today I saw her in the hall when I dropped Lindsey off at school. For months they have been hoping to get him out of the hospital and take him home. They were told yesterday that their son would not be leaving the hospital.  As she was telling me this, she broke down.  I hugged her and told her I was so sorry, suddendly I had all the time in the world to sit and listen to her.  She has been on my mind ALL day today.  I get teary just thinking about their situation. In May it will be a year and a half that they have been here.  Fighting every day for their sons life.  Her husband, while visiting with him one day, talked about their son (his "little buddy") always coming to help his dad work on cars.  I realized he was a nice and soft hearted guy.  I may get frustrated at times, with having to run the kids here or there.  BUT, at least I still have 5 kids to run here and there.  My heart aches for this amazing family.  They are the heroes and their son who held on against all odds.  Who knows how long they have left with him, but hopefully they can be memorable and positive.  What an amazing lesson this family has taught me.

As Jason and I were talking about my visit with this mother.  We realized how important we as parents are for our children.  When Sierra was preparing her talk for Sunday, I asked her if she ever prayed for help to be strong when facing her medical challenges.  She said, honestly, "No."  I asked her then, how she faces challenging situations like when she was told about her rejection.  She said, "Well, I just lean on you and dad.  You and dad get me through it."  Just like this family mentioned above, they've done everything to help lift up and support their son.  It is important for Jason and I to make sure that we stay healthy and strong so that we can be there to help lift up and support our children.  Just like he and I look to our Father in Heaven to lift us and and give us support.

Day 41 - Gage's Check up

Gage's appointment started at 11:45 this morning.  It started with an echo that, "looked improved in some areas and wished it looked better in others."  All in all it looked good.  After the echo, he had an EKG that looked good.  Today was supposed to be the optimization, but the doctor that works with that was out.  So, they just checked his pace maker.  The battery life of the pacemaker is supposed to be 5 years, but his is firing so hard it will probably only last 3 and a half.  A summary of the visit is, everything looks good.  No changes to make in his medication regimen and he will return in 3 months for his next check up.  Possibly earlier for his optimization.  This is more than putting the turtle on his belly.  I was wrong in my last post.  Optimization is where they do an echo with an EKG at the same time and try and time the pacemaker beats so the bottom half of the heart beats in sync with the top part of his heart.  This takes almost two hours.  It can be quite a long process.  They have to get the heart in sync and is quite the fine tuning process. Now we look at getting everyones appointments scheduled around the same time.  It just so happens that Lindsey will most likely have an appointment in June. We try and schedule everything around Lindsey's schedule first, then Sierra's and Gage's gets in there when we can.

 For the first 6 months, at least, we will never be longer than 2 weeks from being here. Lindsey's biopsies will go to monthly with clinic visits in between. That is if all the biopsies go well with good results.  I am sure it will not be a problem adding Gage into one of the appointments.  And, that is just Lindsey's schedule.  Add Sierra's into that and, who knows.   

Tonight we were able to attend Hunter's "Curriculum Night."  It was fun to go to his classroom and see all the projects they have been working on. He loves school and is doing really well.  I am very proud of him.

Day 40, Monday night

Sunday Sierra spoke in church.  There was a large congregation of people, about 200 or so.  She was the beginning speaker.  I have to say, I was very proud of her.  She got up with great poise and confidence. the Talked slow and clear and looked up at the congregation, instead of reading her talk. She nailed it!  I received a TON of compliments after the meeting was over, on how well she did.

Unfortunately, Jason had to go home and missed it.  But, she gave her talk to him before he left while he videoed it. That way he could play it for people at home.  He is home for another week and will return on Saturday.  Aunt Garrity is on spring break and will be coming to visit for a few days.  The kids are all very excited!!

Gage had his appointment Tuesday.  We will see how he is doing.  It involves an echo, EKG, optimization of his pace maker and a visit with the docs.  He's been acting great but eating poor. The optimization is where they put a little device over his pacemaker that reads all the data stored in his pacemaker.  This tells them how hard it has had to work and a bunch of other stuff. They may adjust some settings on the pace maker by their readings.  All good stuff! Sure hope his heart is hangin in there.

That is it for now.  I will post tomorrow to update on Gage's appointment.

Day 38, Saturday

Basically we are all still happy to just be out of the hospital.  Yesterday, Sierra had her IV treatment and did well. She has one more IVIG treatment before her biopsy in 10 days.  After her treatment we went up to 3 West to say hi.  It's weird how much we all miss those 3 West nurses and staff.  They were such a huge part of our lives for over 8 months. So many life changing memories up there, (and lets keep them there). 

Sierra is talking tomorrow in Church and seems like she is prepared. She is speaking on how she stays spiritually and emotionally strong in a hospital setting.

Last night and today we have had quite a treat. Kade, Stephanie, Wyatt, and Tristen came by for a visit. They are from Adrian, Oregontheir daughter Tristin who was born with 1/2 a heart.  They have been back in Oregon since late October and have been doing great! Cute little Tristen has a non-emergency procedure Monday to fix some stuff.  It's complicated and I don't know how to explain it. They are doing great and it was really nice to visit with them.  They will be here a few days before heading back.

We did a lot of activities today we could only dream about 39 days ago. We couldn't even comprehend doing what we did today.  So what did we do? The same thing many others did today. This morning we walked down to Stanford West, a small park down the road, and went to a Easter egg hunt. Kids had fun and we met some nice people. I then got some work done while Stacy and the kids played and cleaned up around the house. At 2:30 we met up with Kade and Stephanie and went to a church activity at the Dains.  All the kids had a great time.  Afterwards we drove out to Portola Valley park and played around for awhile.  This evening, we left all the kids with Kade and Steph, and Stacy and I went out.  It was just nice. There is no way we could have done any of this (with a clear conscience) if our little Princess was hooked to the Berlin.  We are still counting our blessings.

Heading home for another week of work.  I am able to get work done here, but during tax season I just need to be in my office in Oregon. Going back and forth seems to be working well.

 Wyatt and Gage

 

Day 36, Last game.

Everything is going well. Stacy is busy keeping up with Lindsey's biopsies, blood draws, medicine adjustments, clinic, physical therapy, psych, IV treatments school etc. Sounds like a lot, but most of this stuff is once or twice a week.  She is also keeping up with Sierra's IV treatments and dressing changes. 

 

Megan had her last basketball game tonight against Ralston.   It was a fun game to watch. It was a tied game at half, but Jordan pulled away at the end. Megan did good. She was playing against some really good players and they challenged her, it was good.

 

We have to remember when we leave at 5:00 to drive 6 miles, you need to give yourself about 50 minutes (not 30). She was suppost to be there at 5:30 and getting pretty wound up, but the previous game was running over so she wasn't late (thank goodness).

 

Lindsey had physical therapy and did well. Sierra has Rituximab IV treatment tomorrow. It is her 2nd treatment. This IV treatment is to kill the antibody producing cells in her blood. she handles it well, it just takes 8 hours. Lindsey has an appointment with the neurologist to follow up from her seizure she had in the CVICU.

 

Last night Stacy took the girls to church activities and I stayed home with the boys. We all had a good time.

 

We still don't take for granted the fact we can all get in the suburban and go for a drive. Lindsey still loves being out of the hospital.  Going to the game would have been really hard and not as enjoyable if our little princess couldn't be there.

 

Gage performing for his sister.

 

Day 34, The Zero Dance!

So to top it off, Lindsey got a zero on her biopsy. No rejection! That means we are doing the Zero Dance!  Lindsey was pretty excited about that. So now she has 2 weeks off, and Sierra and Lindsey will both have biopsies on Thursday the 4th of April. That will be interesting doing double duty.

For now Lindsey has clinic, psych and IV treatments once a week and physical therapy twice a week. So far everything is going well.

Tonight at the RMH they had a magician here. He was the same guy from about a month ago.  He did a lot of the same tricks and some new ones and I still have no idea how he pulled a dollar out of a green pepper and how he could cute the rope and make it all go back together again.  Some were the same ole tricks we have all seen but it was sure entertaining for the kids (and me).

 The magician. He really was fun to watch.

After the show he came over and did some tricks for the kids.

 The cannula sites are about healed.

Day 33, Lindsey's biopsy

Lindsey had blood draw and biopsy today. This biopsy was the annual study. This is where they go in through her leg and look at her coronary arteries, heart pressures, and rejection. The same test they will do on Sierra in 2 weeks.  Stacy was home with Gage running errands and catching up while I was with Linds.  Anyway around 11:30 I got the call that her biopsy was over and the doctor wanted to review the results with me.  I packed up my computer and walked to the waiting room. Pam told me to wait in the consultation room. Then waited about 15 minutes before Dr Pang came in. Understand, this was the first time we have been called to review the results of the biopsy. Usually they just say it is over, she did 'fine', and you can go back. So over the next 15 LONG minutes the 'what-if' demon showed up and my mind starts to wander. By the time Dr Pang came in, I had convinced myself that everything went wrong, her pressures were off the chart, she was in roaring rejection, and she was on the vent in the ICU.

Well, she just wanted to say, in person, that her pressures and coronary arteries were perfect, much improved from 10 days ago, and she did great! Well of course she did great. I took that 'what-if' demon, slammed him on the floor and jammed my heal into his head like a little field mouse in the spring. (Mind you field mice make a big mess in our fields back home in Oregon).

She was discharged around 4:30 and we went straight to Megan's basketball game.  As always, it was good to get her out of there, as much as we love the good attention she gets.

The rest of the week is dedicated to the IRS tax filing requirements I have been employed to perform.

Cute video clip from Dr Katz house on Sunday. 

   

Day 31, The weekend

So nice to be back here with the family. The kids continue to be doing great. I have noticed the longer I am away from the clan, the more that little demon on my shoulder keeps saying, :"What if?" I keep flicking that bugger off, but the longer I am away the more he creeps back.

But that's not what I want to share.  We really have had a nice 36 hours.  Last night was the big RMH  dinner and fund raiser, called 'Denim to Diamonds'.  We were invited to bring our family and share our experience. Stacy got the kids dressed in their finest and we headed out to a Mountain View banquet center. We ate dinner (skipped the wine, sorry) and listened to the program, then around 9:30 we went up to the stage; all 7 of us. It was a pretty humbling experience.  I first introduced our family, where we were from, and how it all started. I then talked about Sierra and how grateful we were for the RMH and the support given.  We also recognized Dr Bernstein who was there at the event. He is one of the heart failure doctors we have ton of respect for.  He has been our doctor since the Sierra days. After I talked for a few minutes Stacy talked about Lindsey's story. How we found out, her days on the Berlin, raising a family on 3 West, the 'call', 'I did it...I did it', and how she is doing now. We both then shared our feelings about how the RMH has helped us manage our family in a very stressful situation. The kids did great.  Hunter even stood still. Gage did wander around a bit, and hid behind us a few times, but it was cute.  It was a great experience for our family to be involved in.

This morning we had another treat. Dr Katz Meada, Lindsey and Gage's surgeon, invited us to his house for pinnini (grilled sandwiches). He and his wife Mayumi, and their two daughters Eri (8) and Emy (5) live just over the bike bridge in Menlo Park. He is only 10 minutes away from the hospital by foot. It was a very very nice visit. All the kids had a good time.

From there we went straight to church then over to the Gee's for a St Patrick's day dinner. Bruce made corned beef and cabbage. It was another really enjoyable time. All the kids had fun on the trampoline and we had good visit with Jane, Bruce, and Barbara.

By then, Lindsey had had it! It was time to go home and wrap things up.  Of course the kids can't just go home and get ready for bed. Oh no, Hunter and Gage have to fight it all the way, but they are down now.  Stacy is finishing a mountain of medications and is prepping for the week.  This week Lindsey has biopsy tomorrow (Monday), Megan has basketball games, and a bunch of other stuff that I don't know but Stacy does. I have brought work with me (and a lot of it) and hope to get it all done. Have to see how the week goes.

It is sure good to be here. So many times back home that demon stays, "What if the Sierra's treatments don't work? What if her pressures are still high? What if her coronary arteries are restricting? What if her antibodies are still fighting her heart?  What if Gage starts to go down hill?  What if...What if... What if...  Well, what if nothing!  It does NO GOOD to think like that, I flick him off, remember the blessing and miracles in our lives, and move on. I have 5 kids and a gorgeous wife who needs nothing but a positive upbeat attitude. The kids are doing great! I'm not just saying that, they really are. And we are doing everything in our power to help them. We have been blessed, God has a plan, and we will make it home.

Dr Bernstein, ABC News lady, and the fam

      

 Gettin r done

 Emy and Eri

 Katz serving up some yummy apple cake.

 Dr Katz and the family

 Kerri showing off her new Prom dress. The other girl is a neighbor friend.

Bunch of Jordan kids.  Tried to get Sierra to put her arm around him but NO WAY!