Feb PCMC vist x 2

Yesterday we took Merr and Soph to Primary's for checkups.

Merrick's heart function is virtually unchanged when  pre and post surgery functions are compared. There is a possibility that the repair will still buy him some time before his next surgery. We are still hoping for a few years, but we just don’t know right now. At this point only time will tell. We go back in August for more ultrasounds and evaluations. We then should hopefully have a better idea of what will happen next and when. This trip, the poor kid had to be catheterized and have his bladder filled to check and see if he is having back pains from his kidney function. There was some reflux from the bladder back to the kidneys that can cause urinary track infections but the nephrologist didn't seem to think that his back pain was being caused by any type of function of his kidneys/bladder. So we have no answers for whats causing him terrible back pain at this point.

Sophia had a heart check up too. She had us worried because our pediatrician was thinking that her heart was sounding different. Fortunately our cardiologist at Primary's thinks that she is doing fine and that there is no change in her heart. She is good for another year.

It's kind of funny when I have to explain health history's to every new doctor that we meet with. They are all amazed that in one family a father and two children all have aortic stenosis. My cardiologist has been around for probably more years than I've been alive and he has never even heard of such an occurrence. I guess we drew the winning lotto numbers for heart defects.

So, here we go again. We continue on trying to live our lives for the next 6 months all the while agonizing over our situation. Even with his burden of doctor’s visits, tests and surgeries, Merrick is still just a happy little boy. At the tender age of 2, he is an inspiration to me. He goes through so much and comes out of it as if nothing has happened. My hope for him is that he isn’t forced to give up his childhood because of his health. It is inevitable that the innocence and joy of what it means to be a child is ultimately lost to the realities and pains of adulthood. I just don’t want him to experience that loss prematurely. I wish I had Merrick’s strength and cheer so that I could remember what it means to truly live, as I once did, as a child and without constant worry.

Thank you all for your continued prayers and support.  We couldn't make it through this life of ours without you.  

Quick Update

I just love that picture of Sophia.  I had to included it.  It's a copy of a copy of a copy and it's a little grainy because of that but I just love it.

Gavin started basketball this January.  He really likes it.  I had to go out and find a basketball hoop for us to play on.  Fortunately the family had one laying around so we grabbed it and fixed it up a bit and it works great.

I would have posted a picture of Bear too but he is just too elusive for photographs.  You have to catch him off guard to get a usable picture of him.  I don't recall if I posted about his newest problem and I'm too lazy to go back and look so I'll sum it up here.  He had an ultra sound of kidneys after he had been complaining of back pain.  It turns out that he has one kidney that is about 15% smaller than the other but the staph infection was gone so that was good.  He has been referred to Primary Children's AGAIN for more tests.  I think its about time that I ask for a wing to be dedicated to our family.  Andrea took the phone call from Primary's about getting him checked in.  They have us scared right now because they said that we have to meet with a doctor over at the U of U hospital in the transplant department.  I'm sure it's just where the doctor is based out of but nonetheless its scary to be told that's where we will be meeting him.

So towards the end of the month is when we find out more about Merrick and Sophia's health problems.  Wish us luck, pray for us, remove the voodoo pins whatever you can to help out would be much appreciated.  Thanks.