CONSULTATION - CALIFORNIA HERE WE COME!

A few days ago I received a phone call from Levi's cardiologist.  She had contacted Children's Hospital Los Angeles, Stanford, and Boston to inquire about obtaining opinions on treatment for Levi.  Levi's records are being sent to each of those hospitals for review.

Here's where we stand with each hospital:

1.  I just got in touch with CHLA and on March 31 we have a consultation with pediatric cardiothoracic surgeon Dr. Vaughn Starnes.  We'll bring Levi in to be examined, but don't expect them to run any tests at this point.  Dr. Starnes will have looked at Levi's most recent echos, EKGs, and reports.  We look forward to hearing what he thinks about Levi's case.

2.  Dr. Frank Hanley at Stanford Children's said that after he reviews Levi's echos and records he'd be happy to give us a call and let us know what he thinks.

3.  Boston Children's will also review Levi's echos and records and will get back to us with an opinion.  When Levi's cardiologist called Boston, they said that in children born with aortic stenosis who have had a balloon dilation procedure and now have regurgitation, they prefer to do valve repairs using pericardial patches if at all possible.  At five years post-surgery, the freedom from re-operation is 70%.  That falls to 50% after five years.  It's all very valve specific, so we'll see if they think Levi's a candidate.  Levi's cardiologist said that a valve repair doesn't really address the two other issues Levi has besides his diseased valve -- a dilated aorta, and the intimal flap in the aorta that's been there since the original balloon procedure.

So at this point, we wait for two of the opinions and make plans for the LA consultation on March 31.  We also still have Levi's regular cardiologist appointment on March 15.

We're looking forward to a California visit.  This is the first time we've ever driven down with all the kids.  It will be a ton of driving, but we're looking forward to making it a family vacation of sorts.  We plan on being gone a total of nine days and will spend time in Coronado, OC, LA, and if we can somehow squeeze it in, Santa Barbara.  There's also talk of James and Noah sneaking in a Disneyland trip too.  James also has two days of business meetings in LA while we're there, so he'll be staying in downtown LA for a couple nights.  Hmm, I'm not so sure how we're going to fit everything in yet.  There are so many people we want to see and things we want to do!

Levi's been on the move for a week or two now.  He gets around by pivoting, rolling, and rocking.  Until today.  He started crawling.  Just a couple strides forward, but traditional crawling nonetheless. Time to baby proof again.  He's such a cutie though and we just love him so much!

A package in yesterday's mail made my whole week.  My Aunt Jani made Levi the sweetest, softest, most cuddly quilt ever.  It's so incredibly awesome and meaningful.  I know it will be a special comfort for Levi for years to come.  She even sewed in a pocket from my Grandpa Harry's pajama shirt.  He passed away last year, so you can imagine how much this means to me and how much it will mean to Levi as he gets older.

Tomorrow is our ten year anniversary.  Ten years!!!  I can hardly believe it.  What an amazing journey this has been.  I'm incredibly blessed to have James as my husband and partner in life.  He is the best of the best.  He is my rock, so loving, so solid, so steady, so gentle.  I also love, love, love that my three boys have such an amazing dad and role model to look up to.

 Cheers!

February 24, 2001

10 years later

Grandpa Harry