Believe it or not, there is beauty in the chaos, clean socks in the dryer, and dinner's on the way.
Thursday, March 12, 2009
Joubert Syndrome is Confirmed
Just a quick note to say Julia's Joubert Syndrome diagnosis is confirmed. I heard from the doctor that her MRI is characteristic of Joubert Syndrome. We gave permission for this doctor to forward her MRI to another doctor out of our area that specializes in Joubert Syndrome. We had done basic research on this before the adoption and this was in her paperwork from China, so is isn't a shock to us. It is a relief to have the doctors here agree and now we can move forward with her care. Basically, she will have extra tests done to check her kidney and liver functions as she grows, and if they notice any changes, we will go from there. Also, we will have to follow up with some physical and occupational therapy to help her master large motor skills. Other than that, she is a healthy, happy six year old.
I am a 30 something, working mom to 5 kids, married to one terrific hubby, slowly making it through grad school, and loving this ride called life. This blog began as an outlet about raising a large family in a 2 kid world. Now it is more about the joys of simple living and the blessings of life surrounded by these kiddos.
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world" (NIV)
"Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west." (NIV)
2 Corinthians 12:7-10
"To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me, But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." (NIV)