March 26 thoughts

Saturday morning.

Flying back to Calif after another good week of work at home.  Have to admit, the house in Oregon could really use my wife’s touch.  Kinda has that guy feeling (and probably smell) to it. When I am home I keep a very simple life style. Get up, a little exercise, eat some eggs and toast, call the wife on the way to work, office till late, head home, eat something my dear mother provides, call the family, to bed.  Then do the exact same thing the next day.  My day rises and falls by how Gage and the crew are doing.  When he is down, I struggle, but when he is up, it’s all good.  I still fight the same issues I talked about back in the Lindsey day, ‘not letting the highs get to high or the lows to low’, and ‘keeping that little demon off my shoulder’.  Even though I keep saying it, I still struggle with doubts and fears. I know Stacy does too, we just doesn’t talk about it much.  Still wonder why this is all happening.  It just doesn’t make sense sometimes. 

Our faith is still strong, it is what binds us together.  One thing I have noticed with Stacy and the kids, they seem to have let go of Oregon and have embraced the Calif, Palo Alto lifestyle.  We have to, it doesn’t do any good moping around missing Oregon.  On the other hand, I have work, clients, and ranch (and Axelrod our dog) all back in Oregon.  I don’t have the ability to let go of Oregon.  I literately have one week in Oregon then one week in Calif.  Both of which require all the time I can give and then some. 

The other night I went over to Jake and Wendy’s for a late dinner.  I was extremely tired but went over anyway.  It was really nice to see them, especially the nieces and nephews.  Made me feel good when the kids wanted to see ‘Uncle Jason’.  Sad to hear they postponed the family reunion this summer because of Gage and other issues.  Someday this will be over and we can do some fun things with the cousins.

I was talking to Jeff my good ole college buddy.  We are always coming up with some fun crazy vacation idea to do with our families.  Fun to dream of this stuff, but for now Stacy and I are pinned in this situation.  Probably one of the biggest things we miss about Oregon is our Sunday dinners.  Sierra made the fruit salad, Megan made the rolls, Lindsey and I barbeque the steaks, hunter and Gage pealed and mashed the potatoes, and Stacy supervised the show.  Then we invite family or friends over to share it with.  It is a neat memory for all of us.  But really, it’s all good, it really is, we are doing fine, kids are doing well dealing with normal kid stuff, I was just sharing some of my deeper thoughts. 

Sunday

Had a great Easter Sunday with the family.  Spent the evening at our good friends the Zengers.  Busy week ahead with checkups, blood draws, school, homework, baseball games, cub scouts, kids sports, band concert, and tax season. 

Sierra picked me up from the airport.  It was the first time she drove solo from Palo Alto to San Jose airport.  Did a great job, no issues to report.

Still growing my hair out.  Getting a lot of curls we haven't seen since I was a baby.  Going through plenty of hair jell, no man bun yet, but time will tell.  My mother loves to see those baby curls back.  

Regarding the wrist bands, my mother is helping distribute bands to anyone that wants them. We are still not charging for them, but if anyone wants to donate to the kids heart fund that would be fine.  If you would like some, please e-mail me your request at jason@bbwcpa.net.    

Interesting statistic, Gage has now waited half as long as Lindsey did.  He is at day 142, Lindsey waited 285. Bring it on....  

March 14-25 Has it Been that Long?

Stacy  here, I apologize that it has taken so long to update.  Jason came home, and the week he was here always goes way to fast.  He is in Oregon this week and I finally have a short period in the afternoon that I could quickly update the blog.

We will start with one child and then go through the others.

Sierra is doing well.  She had a clinic this week before her biopsy in a couple weeks.  Just follow up from the 1B biopsy.  They haven't changed anything with her medication regimen and her echo looked good.  They did a few blood tests to see if they can find a reason for her hair to be falling out.  We haven't heard anything yet, but they are taking it seriously and working on finding the cause.  Just to note, she is not going bald by any stretch, her hair is just half as thick as it used to be.  Thank heavens, it was really thick to begin with.  She is doing well and trying hard at school.  We even received an email from her Spanish teacher commenting on how hard Sierra is trying and how impressed she is. I am very proud of her, Paly High school requires a lot and she is stepping up to the plate.

Megan finished basketball and is now onto softball.  She hasn't played softball before and last played baseball when she was 11.  It is as if she is playing for the first time.  Her true love is basketball and volleyball.  This is evident watching her in softball.  She is fine sitting on the bench.  She mostly is playing because it gets her out of her PE class, so she can go to her friends house and sit in the hot tub while working on homework during that hour (go figure).  I'm not sure if that is worth all the practices and games in the evening during the week.  However, she says she is not a quitter and will finish the season.  So, we will make every attempt to make it to her games and support as best we can.  She also started AAU basketball this week and is very excited for that.

Lindsey is doing better in school as well.  She has found a few friends that she really likes to be around.  She has complained of stomach pains frequently (almost daily).  We've thought maybe bladder infection, constipation, or stress.  However, we ruled out bladder infection.  Stool softner seems to be helping a little, but she is still having the pains.  This is not related to her heart, I think it is something else.  We met with the general pediatrician last week and Lindsey is keeping a journal so we can see if there is a pattern (something she ate, time of day, length of time they are lasting, etc.)  Nothing seems to be making any sense yet, but we will keep working at it.  She started basketball this week and is very excited for that.  She will also start a dance class after spring break that she is really looking forward to.  It is good for her to be involved in something.  She was really feeling left out.

Hunter is enjoying baseball, his team tied their last game and he was thrilled.  However, when we took Lindsey to her basketball the other night, the coach asked Hunter if he wanted to come play boys AAU on Wednesday nights.  Hunter's eyes lit up and he was ready to throw baseball out the window.  I told him his first commitment was to baseball and then he could do AAU basketball.  He missed this weeks practice, but he is ready for next week.  His basketball bag is packed.

Gage had a rough week last week. Thursday night, he threw up his feeding tube around 1 in the morning.  He has been doing so great, he had clinic on Friday and was acting great. By that evening, he was acting very tired and threw up his feeding tube that evening.  He was gagging on his meds and was petrified to take them for the fear that they would cause him to throw up .  This pattern continued through the weekend.  He was just acting really off, not himself.  Jason was leaving on Sunday to head back to Oregon and I was worried they would admit Gage when he was gone.  He had a impromptu clinic on Tuesday.  They did not feel the need to admit him as he was able to keep enough fluid down to stay hydrated "enough."  I was so relieved as I was trying to figure out how to be here without Jason and running 3 kids in different directions.  That was hard enough without him being in the hospital.  Gage ended up going through 3 feeding tubes over the last week.  Never fun, that was 3 times I had to put them back in and I hate doing that.  Today has been his best day yet, he is definitely on the mend.  He has been able to take his meds with out vomiting the last 2 days.  Very relieved that Jason will be back tomorrow.

On a lighter note, we had the privilege of having my dad and stepmom visit.  We love them and enjoyed their visit so much.  They have never been here and it was fun to show them our home away from home.  My dad has quite the sense of humor.  Sierra was doing her biology homework when they arrived. She was studying genetics and genomes.
 My dad asked, "Did you know diarrhea is genetic?"
 Sierra looked over at me, and I replied, "No, I think it is, I heard something about that."
Then my dad said, "It runs in your jeans."
Sierra swallowed that one hook, line and sinker.  Pretty funny.
Saturday, while they were here, we were able to attend a conference for children with internal defibrillators.  This was quite an amazing conference.  It was for patients and families, including siblings.  They gave each child (patient and siblings) really nice backpacks, fitbits and really nice water bottles.  They had activities geared for kids and great speakers for the adults.  Gage was sad that this would be his first and last conference as he would not have a defibrillator after transplant. I tried to explain that was a good thing.  I will post some pictures of the event when I get them.  The kids had a ball.  Megan had a softball tournament and Hunter a baseball game, but they were able to come to some of it.

Looking forward to tax season being over in a little over 3 weeks!! I can hear the panic that just gave Jason as he read that!

Hunter had a cubscout carnival.  His game was bouncing pinpong balls into a cup.  It was really fun.

More carnival pictures.

Gage at the defibrillator conference.  Notice, no feeding tube.  He had thrown it up that morning. He was getting his picture drawn, 

Sierra's picture

The hospital had a carnival, Gage went and found some popcorn.

Hunter playing 2nd base.  It is nice having a baseball season that is warm.

Day 123, March 6-13 (catch up)

Sunday, March 13, 

Finally getting this posted.  Good to be back with the family.  Got here in time to watch Hunter's little league game.  Sierra and Megan had a great time with the church ski trip.  They went to Kirkwood Ski Resort close to Lake Tahoe.  About 30 kids went and filled the Black's lodge.  It was a good time.

Saturday, March 12, Day 123

Jason here. On my way back to Calif after a good week of work in Oregon.  I will be in Calif this next week, but brought enough tax work with me to stay very busy.  The office I am using in Calif is working out great.

 

Sierra had her biopsy last week.  Three months ago she had a 1A rejection with zero being prefect and 4 being the worse.  This biopsy she got a 1B with slightly elevated heart pressures. Grrrrr.  NOT what we were wanting.  I guess that's why Stacy and I haven’t posted the results for a few days.  It’s not fun to share downer news.  Dr’s didn’t say much, they want to see her again in clinic in 2 weeks and rebiopsy in 1 month. No changes to meds or treatments for now.  Other than that, we keep on goin’. 

Sierra and Megan went skiing with the ward church group Friday and Saturday (today).  They better be having a good time, (but not too good). They will be home tonight.   Megan’s basketball season is over. The team lost in the first round of the NorCal regionals. It was a good experience for her to practice with the big dogs.  I guess she got in for the last 2.1 seconds of the game.

Gage, Lindsey and Hunter are all doing great.  Lindsey has had some really good uplifting experiences with some new friends from school.  That has really lifted her spirits.  Hunter has a baseball game today at 11, I should be to Calif in time to see the game. 

Couple of other items to mention.

1)  They are reshowing the dateline special this Sunday, March 13.  Not sure when so we will need to check our local listings.  We have received nothing but good uplifting comments from that show from people all over the country.

2    2)  We had some special wrist bands made for Gage.  It was selfish, but I wanted one for myself.  I still wear, and will continue to wear Sierra and Lindsey’s bands so I needed one for Mr. Aurelius. It is blue and white camo with ‘Gage Aurelius Man-of-Steel’ engraved on it.  I didn’t get them for a fund raiser or to get attention, it was just something I needed to do.  Having said that, if anyone wants one, contact my wonderful and dear mother in Oregon.

3        3)  Yes I am still growing out my hair, and will until after Gage’s transplant. It’s beginning to get a bit out of control, but the kids are still glad I didn’t do the nasty chin hair thing.

\     4)    Hunter had his annual echo done. Thank goodness there is nothing to report. Everything looks perfect.  They will check him again in one year and will continue to check annually indefinitely.  Not sure when Megan’s echo will be, but soon.

     It’s a strange experience to be in Oregon, our home, knowing our family is not there and will not be there for months to come.  Not sure what to do with the garden, flower beds, and all these piles of ‘Stuff’ I am bring back from Calif.  Each trip home I bring a full suitcase of ‘stuff’.  And the ‘stuff’ is piling up! I would love to stay in Calif and let my wonderful and dear wife take a crack at it.

 

Just to put things in perspective, we have seen and continue to see some really tough situations at the RMH / hospital.  There are kids that have not faired as well as ours and have turned for the worse.  Very sad situations.  We thank our Heavenly Father every day for the good health and strength of our kids and for the experiences and opportunities they are getting.  And I am NOT just saying that, I mean it.

Jason

  

 Lindsey's band concert from a few days ago.  She is the cute little one with a saxaphone. 

 Hunter's little league.

 Couple of pictures from Megan's game in Santa Cruz

If you really want to keep reading about our exciting life...

(Week earlier, but never got posted)

Sunday, March 6

Jason here, once again coming at you from somewhere above Nevada in route to home.  Gage is doing absolutely great right now.  The vad seems to be working.  The clinic appointments, according to Stacy are pretty boring, with nothing to report.  He still has weekly checkups and blood draws.  He has physical therapy every two weeks, and good ole school every day.  As of today, he really is in a ‘waiting’ for a heart mode.  We pray for the the donor family every day because they will need all the prayers we can muster when the ‘day’ arrives, whenever that may be.

Having said that, our days are consumed with life issues.  I am very busy at the office, whether that be in the Oregon office or my temporary Palo Alto office.  I brought enough work with me to stay very busy, but now it time to get back to Oregon to meet with clients and be there.  I plan on being in Oregon for this week, then flying back to Calif on Saturday to spend a week there.  I plan on doing this routine for the rest of tax season, Gage permitting.

Hunter had his first baseball game yesterday.  They were beat 4-2, but hunter had a great game.  He threw out a runner at second, and had a good hit on his first pitch up to bat.  This baseball is a good thing for him.  Stacy met with teachers the other day, and they said he is fitting in well. 

Lindsey is doing okay.  She has some good friends she likes to hang out with, but still misses her friends in Oregon.  She is still struggling in school.  Sometimes Stacy and I are at a loss on how to help her.  We have talked to other Calif parents who have said that the transition to a large middle school and the Calif curriculum can be very tough on 6^th graders.   She has her first band concert this week, and some fun field trips coming up. We are finding some extracurricular activity for her, but for some reason are not making the right connections.  We have some good leads for this week.

Sierra in many ways is in the same boat as Lindsey.  PALY high school is very challenging for her.  Sometimes, just sometimes she has to think and that can be uncomfortable.   She has developed some good friendships and is just a dang good kid.  

At night when all 5 kids are ‘trying’ to go to sleep, Sierra, Lindsey and Gage get talking and giggling.  It gets pretty exciting in there as Megan and Hunter want to go to sleep.  Finally Stacy or I have to give the ultimatum, “NOT ANOTHER WORD!   I WANT SILENCE IN HERE” Sometimes that works but most of the time it happens on its own time.

Megan has had a great experience practicing with the varsity girls basketball team.  They had two games this week in the CCS (Central Coast Section) playoffs.  That would be like our districts back home.  They got to play the final game in the Golden State Warriors D-League stadium in Santa Cruz.  It was a great experience.  Both games they were able to get up by 15+ points which gave Megan the chance to go in for the last minute of the game.  This team she is on is really good with a deep bench.  Megan is really enjoying practicing with the team.  Since they won the CCS title, they now move on to the NorCal regional playoffs.  Stand by for that.  Not sure where or when the next game is. 

Well there is your weekly update.  I know there is nothing exciting, it’s just our little life.  Someday, hopefully soon, we will have ‘the’ exciting post to share, but not yet.

Till next time,

Jason

Day 119 - Flew Through Another Week

Stacy here.  The week that Jason is here, the time seems to go by especially fast.  He headed back to Oregon yesterday for another very full week of work.  We are so lucky to have such an awesome husband and father.  He does so much for our family.  When he is here, he goes out of his way to try and spend time with the kids, even during tax season. Jason goes out with Hunter for 10 minutes every morning, before Hunter has to get on the bus, to play catch with him.  Sometimes he will ride his bike with Lindsey part of the way to school.  If there are games that the kids have, he is there, no matter how much work is calling his name at the office. He even took me out on a date (that has been awhile).

So, to recap the week.  Gage had clinic today, really no changes.  They are happy with the lasix twice a day.  That seems to be keeping his weight where they want it.  He was eating a bit more robustly last week. We thought about turning his feeds down from 500ml to 400 mL at night as a trial to see if he would eat even more.  Unfortunately, the robust eating was short lived and he was eating about the same.  Today we decided to go back up to the 500 mL, where he will probably stay until transplant.  He just can't eat enough calories and the doctors want him very strong and beefy heading into surgery.  They are pushing his next clinic visit to almost 2 weeks.  Very exciting.  I think he is very happy where he is at right now.  He is very nervous and scared about his heart transplant, when he thinks about it.  He is mostly scared about the "tube in his throat when he gets out of surgery." His fear seemed to get worse after watching the Dateline episode and seeing his sisters come out of surgery after their transplants.  But, this is not a fear he dwells on and usually only comes up when he is a little overly tired and emotional.  Other than that, he is running down halls, walking to school, and playing catch with his dad and Hunter when Hunter allows.  Gage and I play a fun game all the way to school.  The game of not stepping on any cracks or white lines all the way there.  Hey, whatever it takes to get him to walk to school without complaining that he had to walk.

Megan was able to play in the last minute or so of all of the CCS tournament games with the varsity team.  This Palo Alto varsity is pretty amazing! It has been really fun to watch them play.  On Saturday the last game of the tournament was in Santa Cruz, at the Golden State Warriors "D League" gym.  Megan was really excited to play on their court (even if only for 58 seconds).  Palo Alto ended up taking 1st in the CCS tournament (like districts).  They move on and will start the Northern state playoffs on Wednesday.  This has been a really good experience for Megan.  We are really excited she is getting this kind of exposure in basketball.

Hunter had his first baseball game on Saturday.  It rained on and off, but the game continued.  Unfortunately, his team lost 5-2.  But, there are many more games to come.  He is really excited about baseball and enjoys playing.  I met with his teacher on Friday.  Very nice teacher.  She was letting me know how well Hunter is doing and how naturally he has just fit in to the class.  It was nice to hear that he was doing so well.  When I was talking with his teacher, we were talking about Lindsey and her struggles.  She was told by someone, that boys don't have to have "friends" they just play with whoever is playing something they are interested in.  Girls have to have a "friend", someone they can talk and communicate with.  I thought that was a very good point!

Lindsey has had a better week.  She has made a couple more friends and that seems to be going well.  We are trying to find something for her to be involved in.  She is feeling very left out.  So, I am feverishly working on trying to find "something." I think I am getting close with a dance class and gymnastics.  We shall see.

Sierra is doing a lot of homework these days.  She is so good to help me out while Jason is gone.  I don't know what I would do without her and her drivers license.  She has biopsy this week.  We will see what it shows.  Her hair has been falling out, quite a bit lately.  To the point that it is concerning.  We are talking with the doctors about that on Wednesday.  That is it for now, until next time.

Megan playing in the last minute of the semi-finals. 

A random silly picture of Gage. 

Megan playing the last 56 seconds on the "Santa Cruz Warriors" court, at the final game.

Hunter at his baseball game.