I will get back to the story of how we got here later but tonight I need to share quickly about today and go to bed.
Please ask that I get sleep - I am not finding that one easy. Hopefully now the adrenaline is wearing off and a few stresses are off/changed in nature I will start to sleep but I know I need to sleep which makes me stressed about sleeping and it all turns into a self-perpetuating mess!
Please ask that Kaylee continue to do well.
Please pray that the angels will sing "Jesus Loves Me" and "When He Cometh" to her when she is sad and I am not there. These are her songs and it kills me that I can't sing them to her each and every time she is upset.
The Cardio team are meeting tomorrow to discuss her case and form a care plan. Please pray that they have wisdom, discernment and compassion.
The genetics people will be discussing a diagnosis with me tomorrow. Please pray that I will be able to wrap my head around it.
We are in the cardio ward now and I finally have a comfortable chair next to her bed. One that I can fold out and sleep on if I need to. Thankyou Lord.
There is a plan of action with feeding Kaylee so I know how many mls I need to provide in order to prevent the need for sup. feeding. This gives me a sense of direction and something to organise, chart and move toward. I needed that.
Friends. The messages you leave here on this blog reach my phone instantly. I can't reply simply because most of the time I have no time! But they bring me great comfort. Rest assured those offers of practical help have been taken note off along with contact details etc. and when I have a moment in this whirlwind I will process that and see what people can do.
She opened her eyes and looked right at me. For the first time. My daughter has eyes and they focus (kind of) PRAISE GOD! I get awfully excited about each bit that I find that works.
Thankyou everyone. I am overwhelmed with love and the Goodness of Our Compassionate and Loving God. Anything good in me right now is because He is polishing me as His jewel - and a jewel is just a dead rock until the light hits it. His light is what you see if you see anything good in me right now. To Him be the Glory.
And Thank-you Lord for the Beautiful Kaylee Guest AKA Tulip AKA Princess Hairy Legs