Tuesday, January 14, 2014

BIG update!!

This last week was huge. The healthcare company came and picked up Ella's concentrator and all of her oxygen tanks! I had so much fear and joy as I watched them load the tanks and drive away. This is the first time in Ella's life that we haven't had oxygen available to us in our home. Although it's been rare, on occasion we have had to use it to get us through episodes of low oxygen. Ella has been stable with her oxygen for the most part and so it was time. Seeing them go I felt like we were losing some of our independence, since if she needs oxygen now we will have to bring her to a germ infested ER instead of being here in our home. At the same time, seeing them leave was like gaining independence. Like they were a weight I had been carrying, and seeing them leave felt so good!! We praise God for this new milestone!

Yesterday was the third anniversary since Ella's Glenn surgery (which was her third open heart surgery that she had at 5 months old) so we celebrated. We celebrated as we took Ella to her first dance class!!!! It was a beautiful day! She is taking ballet and tap!

This was Ella's first ever group activity, this was the first time she has fully engaged with other kids her age, this was the first time for her to hold hands with friends in a circle, this was the first time for so many things! I talked with the teacher before hand about Ella's heart and about our risk of her getting sick and how this was a big step for us and our anxiety was high. She was very understanding and reassured me that they sanitize the bars and have the kids use antibacterial gel before each class and watch for symptoms. She also told me they would be extra mindful with Ella's class.Yesterday was a moment I don't think I'll ever forget. I felt every emotion under the sun while a rush of memories of all that we have faced and hopes for the future flooded my heart and mind. God held me yesterday. He gave me strength as I let my little girl go further from my care in the real world then ever before. I let go of some of the control that I want to hold forever but know that I can't. I cried. I am crying now, just reliving that moment yesterday. It was so much more then just a first dance class, this was a testimony of God's strength in us. This was a pot of gold at the end of a rainbow after a long 4 year storm. This was normal. This was an outing that I stood in the corner of the room, only observing, as my miracle introduced herself boldly to new friends and caught on to the things the teacher was teaching. I just stood there with tears streaming down my cheeks and a smile a mile wide. I felt like we made it. We are post Fontan and now, we get to live this life in a whole new way with her however many days the Lord sees fit to give us, we pray for many more years. Her life is unknown and she is "terminally ill" but I'm not sure I have ever seen anyone more full of life then our sunshine! God has been so very merciful!!!!!

videos of Ella dancing:

You all have walked this journey with us through prayer and we thank you! We thank you for going to the Lord on our behalf as we know He chose to work many miracles in Ella's life and as a result we got to have this amazing experience. Now we pray and ask you to join us as we are venturing out more for God's continued protection over Ella's health and ours as we care for her! For wisdom in finding that balance of letting her participate in the outside world of yucky germs. Pray for her heart, lungs, liver, and immune system to stay strong! Pray for my anxiety as I learn to switch my mindset and for Jon as he strives to lead us in the way that God wants us to go. Your prayers and support fill our hearts with thanksgiving, we are so grateful for you! Seeing these pictures again today, I am reminded of the day I set in the doctor's office at about 25 weeks pregnant, where we found out the extent of the complexity of our unborn daughter's heart, and that she only had a 20% chance to live. That is the day I was offered an abortion. Today I mourn for all the mommies who have received bad news about their unborn child and choose to abort not knowing what could have been. Today I mourn for those who chose to fight for their child but had the outcome that we feared we would face. Life is a gift however long or short it is. Feeling thankful that I was raised with the understanding of the sanctity of life. My child is not a statistic, she is a child of the King perfectly created to bring Him glory! Praise the Lord!


  1. What a joyful day for Ella -- and you! I hope you have many more.

  2. This was beautiful - she's going to be a dancing pro! So happy for you guys. I watch your blog for new news everyday. Sara Burk's aunt Kathy


Note: Only a member of this blog may post a comment.