We leave Wednesday morning for our second visit to the National Institute of Health in Bethesda, Maryland. They are probably the foremost research institute in regards to this rare genetic disease that Chaia has.
Not sure that much will change in terms of treatment/meds.
Here's a few ways we could use your prayers:
1. Chaia and Daddy have been battling head cold/congestion for a few days. Pray that we could both kick that prior to the trip there.
2. Pray that we would find contentment and delight in God, despite any news, developments or prognoses that are given (joy is not circumstantial!)
3. Pray that Chaia cooperates. It is really hard to get a 3 year old to do what you need them to. It's even harder to get a 3 year old with aversion/sensitivity issues to sit still while jelly is put all over her stomach/chest for an echo. We haven't had a good echo or ekg in months.
4. Pray for wisdom and clarity and direction. We will be looked at more in terms of how PXE/GACI is a risk for us and we may find out more about the risks of future children having the disease.
5. Pray for endurance. We're coming into this under slept and under the weather. That is not a great combination. Medical Days like these are seemingly equal to 10 normal days of life. Pray for us to embrace perseverance no matter what may come.