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.