Yesterday we made our way to Chester to support Steven as he competed the Half Marathon. It was a baking hot day, which was great for us the spectators - torture for the runners. Over 5,000 men and women took part in the event.
Steve's finishing time was recorded as 2hrs 39 seconds and we couldn't be prouder of him.
As a family we will never be able to properly express our gratitude for all the months of training and for choosing to run on behalf of the Sick Children's Trust.
Offline donations have now passed the £1000 mark, which is absolutely amazing. I'd like to thank everyone who has donated so far, you have no idea what this means to families like us who rely on charities like this while our children are treated in hospitals miles away from home. We're also still collecting donations from our Just Giving page, so if you haven't had the chance to donate yet but would like to - we would really appreciate your help.
But today a dark shadow has cast over me, and I am desperately trying to stop myself from crying each time I peep at a sleeping Martha Grace in her cot. After we appeared in the Daily Post last weekend, I received a message from an expectant Mum who was a few days away from meeting her Heart Baby. I offered words of encouragement and shared with her a little more of what we went through with Martha Grace.
They welcomed their precious baby Boy in to the world on Thursday afternoon. Unfortunately his condition was far graver than they had anticipated, and he passed away last night.
I am beyond devastated for them even though I didn't really know them, but as any Heart Parent will tell you - you feel their pain because you've almost been there yourself. It's a stark reminder of how lucky we are but how incredibly cruel the nature of Heart Defects are.
Yes up to now we have been extremely lucky with Martha Grace, but please don't let it be lost that on you that CHD is a killer and unfortunately it does claim the most innocent of lives.
Today I am going to sob and hold my children all that bit closer.
Fly high little Bobbi Rees Jones.