Day 27 - Ending on a Good "Note"

All is well here today.  We started the morning off early at 7:00 am, with blood draws, echo's and clinic for Sierra and Lindsey.  The base of the visit was "no change."  Sierra and Lindsey's labs are all where they want them to be.  Their echo's are unchanged (not sure if that is good or bad, but they didn't seemed concerned).  There were no changes to make in their treatment.  Lindsey will get her 4th biopsy on Monday, this will be an "annual study".  This means that they go through the groin and look at the coronary arteries around her heart.  They do this for all transplants at the year mark, unless they find the coronaries not looking healthy, they repeat it more often.  The only problem with this, is that Lindsey has to lay flat for 4 1/2 hours after and cannot move her leg.  She REALLY hates holding still for that long (not that I blame her).  We also got the okay from the doctor to venture a little further than 15 min.  We will look forward to doing this, but with caution. Lindsey is doing really well.

Sierra will also get an "annual study" done on the 4th of April.  This will check to see if all the treatments she is getting are working on the antibody rejection. As well as  rule out coronary artery disease as a contributing factor to her high heart pressures.  This is something they see sometimes in transplants.  They try to prevent it with certain medications, but for some unknown reasons, some kids still get it.  They have been treating Sierra's with a drug called Rapamune.  This will either reverse it, keep it from worsening or do nothing.  So far, hers has looked better.  The only treatment for CAD is another transplant if it worsens.  Not a lot of answers right now.  Hopefully after this biopsy we will know more and have a better plan of what is next. She still acts and feels great, which is the deceiving part. 

Megan had a little bit of a yawner game yesterday.  She played well and they won 34-2.  She had a practice today.  Her last game will be tomorrow and it is supposed to be a pretty exciting game.  They are playing Termin, a good rival school, with some really good players on their team.  Unfortunately I will have to miss this one.  Lindsey has IVIG tomorrow, which is a 12 hour infusion starting at 11 am.  I can't wait to hear all about how they won! This will be the last season game, then they have tournaments next week and that will be it for basketball. 

Megan and Sierra had their "spring" band concert.  It was really fun to have ALL my children there this time.  During their winter concert, Lindsey called and listened on the phone from the hospital, but it just made her too sad to not be able to go.  This time I listened to the concert without even having to look at my phone.  So, so, nice to have her out of the hospital.  They both did well and have improved since Christmas.

We have had some fun visitors the last couple days.  Art "the clown", came to visit us.  This time at the RMH.  He brought us some of his yummy, famous, bundt cake.  Very nice of him!  We were able to visit with Angel and Ben.  Ben was here for clinic today and we ran into them, Ben is looking really good! Lindsey's cute friend Colette also came by for a visit.  It was really fun to see them all.  With the beautiful weather here lately, it is a great time to be out of the hospital. 

Jason,  we miss you TERRIBLY!!! (is that convincing enough, 3 exclamation points).  Thank you for the sacrifice you are making for us.  We love you very much and are VERY excited to see you Saturday. Time to get my running shoes ready for tomorrow.

Art and Lindsey.  We have pictures of Art 6 years ago at Sierra's birthday party.  A great guy!

 Hunter trying to figure out how to spin the plate on the stick.  He is better than me.

Megan putting on some heat in her game yesterday.  Not certain why the one below came out sideways.  It is right side up on the camera and computer.  Sorry.

Proof that Lindsey really was at Sierra and Megan's concert.

Jason, these videos are for you.  I videoed one of each of their songs.  ENJOY!