Great Weekend

Just a few notes before I get into the last few days.  We have had questions about what testing our family has had done.  We have been genetically tested, no gene has been found yet.  The doctors feel like maybe there is a gene that they just haven't identified yet.  We have been tested for the mitochondrial disorder as well.  That test was negative.  We had our water and soil tested at home, which came back with nothing.  There is a doctor here at Stanford, who is presently testing our genes in a different fashion.  He collected blood samples from our whole family.  He takes those cells and turns them into cardiac cells.  His team watches them grow and sees if they can catch when the genetic mutation is happening.  This is very high tech and will take years before we hear of any results. The doctor has invited Hunter to come work on his team once Hunter comes to Stanford for college (he is very nice).  Hunter still has a few years yet before that will happen.

We survived Friday.  The kids did well and Lindsey made it safely to and from school.  Gage and I learned the importance of making sure we hold pressure for a little longer on his blood draws.  He had labs drawn Friday morning, which he gets weekly. We were early for school, so we sat outside the door and waited.  Gage said, "Mom, I think you better look at my blood draw, it feels really wet."  I took his jacket off, and sure enough, he had blood saturated through his shirt and running down his arm.  I tried to hold pressure on the 2x2 and coban that was on his site.  It was so saturated with blood, the blood just squirted out.  We ran to the bathrooms around the corner and of course they were both full.  To make a long story short, we left a small puddle of blood on the carpet outside of the bathrooms and ended up stripping off his shirt and washing the blood out so he could go to school.  We got the bleeding stopped and was never so happy he had on a really dark colored shirt.

His clinic appointment was uneventful.  We had one of our favorites, Dr. Rosenthal.  He hadn't seen Gage since he discharged him from the hospital on December 20th.  He was VERY pleased with how well Gage looked.  When Gage was in the hospital recovering from his VAD surgery, there were a total of 5 VAD's including him.  Of those 5, he is the only one that hasn't been readmitted for something.  There has been no changes in his medication regimen or fluid balance in 3 weeks.  He is doing great.  They were not concerned with his vomiting and was very pleased with his weight gain.  We asked if he was ready to go to a 1A status yet, but Dr. Rosenthal felt like 3 months after his discharge from the hospital would be the best time.  So, March 20, Gage will go from a status 7 to a status 1A.  This means that he will be able to do more than just accrue time, he will be able to accept an offer when it comes.

We have been asked a couple times from doctors, which device we like better, the HeartWare or the Berlin.  We love he HeartWare as it allows us to be a family outside of the hospital.  When Lindsey was on the Berlin, we always struggled with attending our other children's activities and leaving Lindsey sitting alone in the hospital.  Fighting the guilt that was eating you up inside, knowing she couldn't come. It is so nice that Gage can go everywhere with us. We are so grateful, that our surgeon, Dr. Meata, decided to try him on the HeartWare.  Gage is the smallest they have placed on the device.

Saturday, we were able to go and see our friends the Thorntons.  There are benefits to being in California.  We get to see all our friends that we miss when we are home.  Unfortunately, the visit wasn't as long as we wanted.  Sierra had a big paper due on Monday that she had to finish and there wasn't enough time to do anything big.  So, we made plans for another day.

Jason is in the thick of work at home.  He was able to attend some high school basketball games.  The kids here have another week of school, basketball games/practice, cub scouts and youth group.  We love being busy, as it helps the time go by faster. Hunter has a "hoops" class he does after school on Wednesdays.  He is really enjoying it and loves that the coach mentioned, "he has a lot of potential." He is very competitive like his sister Megan. There is only winning, no losing. Sierra isn't crazy about having her mind stretched so much at school, but she is enjoying the atmosphere of the school and meeting new people.  She has set a goal to meet someone new everyday.  Some days she meets that goal and some days, "she just isn't feelng it."  I am really proud of her for trying so hard. Lindsey has some friends, but is also working on meeting new people.  She was nervous on Friday because they showed our Dateline special in her class.  I think it went well and she said the kids just had a lot of questions for her.  I'm not too worried, she will make friends without any problems. Megan is loving playing basketball for Paly's JV team.  She attended a big game on Saturday, between the JV/Varsity Paly boys and the Pinewood JV/Varsity boys.  This is the same school that Megan's team won on Thursday.  Paly ended up winning both JV/Varsity.  They were both really intense games. Megan has not had a problem finding her social side here.

Gage and Hunter dressing up in Ben's hat and jacket playing in his wheelchair. 

Pictures of Megan during one of her basketball games by a student that works in photography.

We noticed she needs her tongue to play well.  Especially this shot when her tongue started on one side of her mouth then switched to the other as she went up for the shot. Hey, whatever helps!