DAy 103, Feb 22

This last week with Jason here went way too fast.  I feel like we just get used to having him here and around us again and it is time for him to go back home.  We are so grateful for the job that he has that allows him to be here as often as he is.  It makes us treasure those moments more.  This has been quite a week for us.

Sierra had clinic on Tuesday.  This was just a check in clinic.   She has clinic monthly with biopsies every 3 months until her first year anniversary.  Then, if all continues to go well, she will go to biopsies every 6 months.  She is doing very well.  The doctors cut her lasix down.  She hasn't been off lasix for years.  Starting tomorrow, she is officially off of lasix.  While we were in clinic, we were ecstatic and pleasantly surprised to receive a letter from her new heart's donor family.  This letter took a while to get to us.  It was written before November and we just received it this week.  We were very excited to receive it and they would like to meet Sierra.  She wrote them back and is looking forward to meeting them as well.  Sierra has the precious heart of a 10 year old girl named Jasmine.  Stay tuned for more on that as it develops.

Gage had clinic as well.  There wasn't much to change on him.  They are adding lasix back to his medication regimen.  He was starting to retain some fluid.  He was taken off the lasix when he was sick, because they didn't want to dry him out so much.  Now he is better and he is holding on to his fluid.  He is acting like himself, very energetic and quite the clown.  He would love to play baseball, and so would his father like him to play baseball.  I am just a little too nervous about a flying ball coming at his HeartWare or his stomach.  The debate still continues.

Megan finished up her basketball season for JV. She was invited to finish the season with the varsity team.  This is a big honor and she was very stoked about that.  I don't know if she will play at all, but she will practice with them.

Hunter is loving baseball and doing very well in school.  When I ask who he plays with at recess or lunch he says, "Well, it depends on what I am in the mood to play."  Then proceeds to give me 2-3 different activities and the names of the kids that play in those activities.  I think he is fitting in fine.

Lindsey is hanging in there.  Still struggling to "fit it."  My heart ached for her today.  She has some girls that she really wants to be good friends with in her class at school.  They keep snubbing her and are a little snobby towards her.  I met with her teachers and counselor for an IEP meeting this week.  Even the teachers were upset with these girls in their class, because they could see these girls being snobs to Lindsey.  This is the hard part, when there is nothing we as adults (parents, teachers, etc) can do for her.  She has to figure it out on her own.  Needless to say, she was REALLY missing her friends from Oregon today.  I think this is why she likes to be around adults so much, they don't tend to be mean to kids.   There must be a safety for her that she finds from them.  Unfortunately, lessons have to be learned, no matter how hard this is for us.  I have no doubt she will find a good friend, it might just take a little longer than she (all of us) were hoping.

Jason is very busy as in any tax season.  I am doing well and keep seeing the blessings placed before us every day!

Sierra and I looking at the letter from her donor family while in clinic.

Gage doing physical therapy.

Some very sweet girls from John Day sent Gage a super hero package.  He loved the cape and mask they made for him.  Thank you so much girls.

Hunter at his Blue and Gold Banquet here in Palo Alto.  A little bit bigger troop than Oregon.

Every time I change Gage's dressing I take a picture to email to the doctors so they can see if it is infected or not.  So far so good, it looks Very Good!

Saturday Sierra and I went to a conference on cardiomyopathy.  It was put on here at Stanford for families with different types of cardiomyopathy.  This slide was from one of the speakers.  I thought it interesting that more people die of a Sudden Cardiac Arrest (SCA) than fire or gun shot situations. It was a good conference and we were interviewed and featured in the San Jose Mercury Newspaper.

The highlight of our week was seeing our wonderful friends "The Stockwells."  We met them way back when this journey all started in 2006 when we were here with Lindsey.  Shawn was here for biopsy and check ups.  More pictures to come.  George and Jason before Jason had to head back home.