Thursday, January 12, 2017

It's Time I Write Again

As life has gotten to be more "normal" for lack of a better term, I have gotten way too busy to keep my blogging up. Truth be told, I have put myself last for a very long time and 2017 is my year to change all of that. As most of you know, writing helps me get through these crazy times that Dude and I live and it's nice to have a place for everyone to go to keep up on his journey. So let's recap the last however long!!!

Last year was a hard one on us. Dominic became extremely sick and there was thoughts that this might be the end. His protein levels dropped to a dangerous level and he wasn't getting better. He had infusions of pure protein (IVIG) but despite everything, he was still swelling up faster than we could deplete... I was scared. I have never been as scared as I was last year. There were so many questions and zero answers. We were finally diagnosed with Protein Losing Enteropathy... or PLE. For the first time EVER I googled what in the heck that was.... take it from me... don't do it. PLE is manageable for most otherwise healthy individuals... but kids with congenital heart defects, its not a good outcome. We lived in this circle of get sick, get swollen, spend time in the hospital, get infusions, come home and do it all over again. Because of this new diagnosis, our amazing cardiologist had to pass us to another doctor. One who had more time for us... one who was just a pediatric cardiologist. For those of you who don't know me well, change and me have a love hate relationship. If I chose the change, bring it on! But, please don't you dare spring change on me! Anyway, new diagnosis, new doctor... Luckily this doc did her residency at Doernbecher WHILE Dude was in the hospital recovering from his last heart surgery. She knew him. She worked on his case, and she was working under our beloved Dr. Armsby. *Sigh of relief... a little*

Okay, so new doc, new diagnosis... and new news. Because we seemed to be losing this battle slowly but surly to PLE, Dr. Carlson (new cardiologist) thought it might be good for us to start looking into our next step. Transplant.

Holy scary word!! My suspicions were right! We weren't going to make it through this! But, lets fast forward... We had a consultation at Stanford, they could have told us that we weren't a good candidate, but we are! Whew! Not in the clear but at least we have options right?! Now our life consists of bimonthly appointments to Stanford and bimonthly appointments to Eugene to see Dr. Carlson. Because of this HUGE change in our life, and my continued effort to keep Dude as healthy as possible, I took him out of school and decided to homeschool. Sure, that's a lot on my plate but what's more important than keeping my child as safe as I possibly can? Nothing in my opinion. I'm sure all you mamas out there would agree with me.

Now here we are!! We have been on the transplant list for a year, and traveled to Stanford about 6 times and Eugene as well. Dominic continues to get healthier and healthier. It seems (knock on wood) that his PLE is in remission!! He has been healthy and his protein levels in his blood are extremely... wait for it... NORMAL! Not normal for him... straight up normal!! So guess what we did? WE WENT BACK TO SCHOOL!!

Now you're all caught up! I want to write all about school next time! There's just too much to put into a single blog post! Thank you all for taking time to read about our life! I can't tell you how much it means to Dude and I to have your love, thoughts and prayers in our corner. No matter what punches life keeps throwing at us, we know we have backup and we know that we are going to be okay. Thank you again from the bottom of our hearts. We love you!


Sunday, January 27, 2013

it's been a year!!!!

OH how life has changed for us in the past year! It's been so busy that I haven't had time to organize my thought let alone blog about them! Dominic is a completely different person than he was last year and I'm pleased to say that not only can he walk and talk, but he plays sports and dances, and he's in the top of his class! We don't even own a wheelchair anymore!

Aaron and I also finally got married. FINALLY. and it's been the most amazing time of my life! I hope it's been the most amazing time of his too :) Here are a few pics of life and what we've been up too. I promise that I will try and get on here more.

PS Friday is wear red for CHD!!! Make sure that you do it and send me your photos!! We love your support!

Wednesday, January 11, 2012


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Sunday, January 1, 2012

I’m not that strong

I’m not as strong as you all think I am.

In fact, I’m very weak. My skin tears and my bones are brittle. My eyes fill with tears and my heart aches.

I have been living through the strength of others for so long now, that I have forgotten how to be strong for myself. I have, for so long, been lifted that I’ve forgotten how get up on my own.

Who’s fault is this? No ones. I am just broken in every sense of the word.

So here we are 2012. Here I stand, staring at this new beginning, and I’m so blind that I can’t even see the path that I’m standing on.

2011 was filled with so many… things. So many ups and downs and side to sides.  I’m sorry to say that I’m very glad to say goodbye to this year.

Isn’t it funny when you look at people? People who clean houses, rarely keep their own house. Football coaches usually weren’t the star player at their high school. People who repair, rarely fix themselves or their surroundings. I could really use some of my own advice at times. This would be a good example of that.

During my entire stay at the hospital with Dominic, I was strong for everyone because that’s what I thought I needed to do. I kept it together so that everyone else wouldn’t worry… and now here I am.

I leave you with this letter I wrote to the coming year. I hope the best for everyone in this coming year. We all deserve bigger and better with each passing year. We each deserve happiness and abundance. Where do you find yours?



Dear 2012,

I come to you broken and bruised. I’m sorry I couldn’t start our relationship off on a better foot, but here I am. I am raw and truthful. I am full of love with a thick barricade of thorns surrounding it all. I’m sorry that I come to you so calloused and some what cold. I’m not exactly ready or deserving of such a fresh start, but I’m going to take it and accept what you bring me. I promise you very little, but that promise is this: I am going to learn. I am going to learn through everything that has made me hurt and by the day that you and I say goodbye I will be an entirely new person. I am going to be healed; I am going to help and I’m going to love like I never have before. I have a lot to give and I hope and pray that I am open enough to do just that. Please be kind to me, 2012. Please be forgiving for I am once again a child in your arms. I will need a lot of comfort. I will probably need a lot of guidance and patience. Please be patient with me, I beg of you! I’m going to make more mistakes and I will probably hurt a few a long the way, but don’t give up on me. I will forever try harder. There is an amazing person underneath it all and if you stick around long enough, I will share. I will share all that I am and all that I have. 2012, please be kind to me.


-whitney leigh

If you are hurting or struggling in any way, please feel free to email me. We can and will get through this together. I will share my secrets and hope to learn some new ones.

-with love