Well, God is clearly trying to keep us dependent on Him and we're thankful that He is the omniscient (all-knowing) One! When we think we've become comfortable with Tanner's future, God reminds us that ultimately, we don't need to know what the future brings, because He does!
Today we went for a follow-up appointment with Dr. Matalon (the geneticist) in Texas City. We went expecting very little and assumed that we would leave with no new information. We explained to him some of the changes we've seen in Tanner over the last 6-12 months. Changes that include worsening balance, worsening fine mother skills, tremors, cognitive decline, increased headaches/migraines, increased weakness and intermittent blurriness in one eye. After discussing our concerns, he has decided to refer Tanner for some additional evaluations. He'd like some new bloodwork to be done that may identify additional genetic abnormalities. He's also recommending a neurosurgery and cardiology evaluation. To our surprise, he's not completely convinced that Tanner has leukodystrophy. But, if it's not, then the challenge becomes determining what is the cause of all of these problems.
So, as usual, we left with a lot more questions than answers but, we are hopeful that the neurosurgeon can help find some solutions for the headaches.
So, how do we feel about all of this? Confused, sad, hopeful and peaceful. A better description comes from the song "I will Rise" by Chris Tomlin. "There's a peace I've come to know, though my heart and flesh may fail. There's an anchor for my soul, I can say, it is well. Jesus has overcome, and the grave is overwhelmed, the victory is won, He is risen from the dead."
With tears, we can continue to praise God for bringing Tanner into our lives and allowing us to glorify Him through these struggles.
We would appreciate your prayers as we make these new appointments, for wisdom in making decisions and sorting through this new information. Also, for us to be accepting of whatever comes as well as for us to be patient and comforting to Tanner as he struggles daily with pain and headaches. Thank you for your continued love and support for our family.