Tuesday, September 23, 2014

Birthday fun and Ninersmania!!!

Josh celebrated the big number 7 last week and had such a great time!
It was like fate that the 49ers Youth Football program came to our school and put on a training camp for "7 and older" 2 days after Josh turned 7!  The stars aligned.
The training camp was such a blast for the kids and Josh was such a little stud out there.  I think since he's about the size of a 4 year old people just don't expect too much out of him, but he so coordinated and has so much agility he surprises everyone!  It was a really special day for Josh to be a part of an official 49ers event because he's a huge fan!
It was kind of funny, when the Niners truck pulled up all of the kids raced over to it & they all expected Kaepernick to climb out of the back.  These kids were more excited for this truck to arrive than they would be if Santa pulled up in a sleigh full of gifts....really!

It was so good to watch Josh run and play football with a huge smile on his face, without a care in the world.  It was as if all his dreams came true that day.  I couldn't help but feel so much gratitude for the 49ers program.  Watching him just be an ordinary kid (with some crazy good football skills:), I thought back to our visit earlier that week at Stanford.  As I watched my boy laugh and throw passes and I had so much peace knowing that despite his heart and the fact he must feel pretty yucky inside, he doesn't let anything stop him from enjoying his life.  He's such a good example.

Now onto his Birthday...we went to my parents house this weekend to celebrate with family.  Since Josh is a huge Niners fan he of course wanted a Niners party.  He had so much fun playing football with his uncles and cousins.  He was a lucky boy because we were connected with an organization called Icing Smiles.  Icing Smiles put us in contact with an amazing baker, The Cake Boxer, here in San Francisco.  The baker created an amazing cake for Josh!  It was definitely a highlight of his birthday!

People ask all the time how Josh is doing.  Overall, I have to say he is doing well.  His vomiting has lessened (only about 3-4x a week) and he's in good spirits.  If you read my previous post you know he's not doing well on the inside.  But it sure goes a long way when his quality of life is still good.:)

Tuesday, September 16, 2014


It's been quite some time since I've sat down to update.   Mostly we were busy having fun this summer and I didn't want to take the time to sit and process all that's been going on with Josh.  I think part of me avoids posting because I'm forced to really think about the seriousness of his condition when I write it all down (or at least the information I'm willing to share), and its much easy avoiding it.
Really, it's not all doom and gloom, but honestly our first visit to Stanford was very difficult.  To keep it simple I'll just say that the cardiologist explained in broad strokes what the process of transplant looks like.  It's not pretty.  It's not easy.  It's scary.
At that initial visit, I spoke with the doctor and nurse practitioner at length about Josh's history & his more recent symptoms.  They laid out several tests that they wanted preformed to help us decide whether or not transplant is a viable option.  One of those tests was a cardiac catheterization.  He had the cath in July & it went pretty well.  But the results showed some troubling findings that confirmed Josh's heart isn't doing very well & the long term expectations are very low.
That being said, today I took Josh back to Stanford to further discuss his case and the results of all of the testing he's had done in regards to transplant.  It's pretty clear that it's no longer a matter of "if" but "when".
It's taken me several months to wrap my mind around the initial consultation with the heart failure team & I'm feeling as ready as I ever will to begin the transplant process.  Lucky for us, Josh has a high quality of life right now so this process can happen at a somewhat leisurely pace, which we much prefer.    
Since before he was born we knew his heart condition would lead to transplant, we just never knew when.  We had always hoped it'd be when he was an adult, but it seems he'll be ready much sooner.  We still don't know exactly when his day will come, but know it's nearing.
Anyway, on a much happier note, tomorrow is Josh's 7th birthday!  We are incredibly blessed to be celebrating 7 years with him...something that was never a guarantee.  So despite our bummer situation, above-all we are celebrating our wonderful little boy and his awesome life!!
(I'm dumping some photos into this post since I'm not so good about regular posts.)