7 months spent in a hospital room. It’s been 7 months of divide and conquer between Braden and I splitting our time between Oakley and Kash. We have spent one night together as a couple in last seven months. To say this life is not normal is putting it extremely lightly. It’s completely unexplainable and it’s a daily fight to find joy. The feelings of defeat are so strong some days. When Lord will it be Oakley’s turn to receive her miracle? Oakley was having a lot of issues with her heart rate getting too high whenever she would do anything remotely physical (even just getting out of bed). Her heart rate would quickly spike to the 140’s and the doctors thought this could be due to her hanging onto more fluid which is a part of heart failure. She was given additional IV lasix and her heart has been much better so fluid was likely the cause. Oakley already has stage 2 kidney disease so increased Lasix is not an ideal solution long term. What this tell us is that her heart is working hard to keep up. She is getting more blue while participating in therapies and once therapy is over she is exhausted. I know she’s tried, yet she never complains. She just wants to be a normal kid and not be looked at as the “sick” kid. My heart breaks for her. None of this is fair. She misses her home, she misses her dogs, she misses her friends, she misses going to birthday parties… an entire 7 months essentially stollen from her. It’s impossible to commit to plans and having visitors is a risk for Oakley because she cannot get sick prior to transplant. Kash was supposed to go to school this year but we decided it was just impossible for us to make that happen. We’re grieving daily on the life that’s been taken from us yet, putting on a brave face for our children to make their day as good as possible while in a hospital. The transplant team is telling us the same thing they have told us from day 1 “we still have not gotten any offers for Oakley”. Every time I hear this my heart just shatters a little more. How do you not get defeated? 212 days of waiting and still zero answers. I try so hard to keep my faith and trust in Gods plan but I am human… and I’ve never experienced something more painful in my entire life. Oakley’s doesn’t have any other options… she needs this second change at life. Please God, please. I will never stop praying and pleading with the Lord for Oakley. Thank you for following our story and for loving Oakley. I will never forget those of you who have been there for us 🙏🏽❤️ Please keep praying!