Monday 1/31 - A Busy Morning!
-Ethan had his visit with his hearing specialist, Julie. It was a good visit, Ethan likes playing with her. She mentioned that she wishes that he was making more sounds, so did the speech language pathologist when she visited, but we're working on it. Ethan wears his hearing aids usually 8 to 12 hours a day which is helping him hear all the sounds around him, we read to him, and we talk to him all the time.
-Ethan also had his visit visit from his new vision specialist, Joni. Luckily Julie was able to stick around for part of the meeting which was very helpful. Joni was very excited about how much Ethan is using his vision (she often sees children who are completely blind). When we come back from seeing the eye specialists in Iowa next month, she'll be able to better specialize a plan for Ethan. I'm excited about getting Joni on board with Ethan's therapies. Plus, Joni sees another little one who has the same disorder as Ethan - so between our two little ones she's going to become a PBD vision expert.
Tuesday 2/1 - The Snow Begins!!!
Everything in Central IL came to a halt! Jeff came home early on Tuesday, and didn't go in on Wednesday - we were snowed in!
Thursday 2/3 - To Springfield we go!
Today we visited Ethan's geneticist and audiologist. Dr. Schneider, the geneticist, had not seen Ethan since he was a month old - was he surprised at how big Ethan had gotten. At the audiologist they retested Ethan's left ear - seems stable at the moment, and made new earmolds. We'll be going back in a few weeks to retest Ethan's right ear and to pick up the new earmolds.
Today was Jeff and I's 5 year wedding anniversary so Ethan got to spend time with Grandma and Grandpa Marshall while we went out to dinner.
Next week will be busy...
We have visits from the developmental therapist, dietitian, and the dept. of specialized care for children (DSCC).
-Please pray that Ethan will continue to reach important developmental milestones (our PT believes he's on a similar gross motor development milestone time-line as kids with Down Syndrome - so we've got a book that has lots of activities we can do with Ethan to help encourage him to reach his milestones).
-Please pray that Jeff and I will continue to grow closer to God and one another as we ask not why but "How will God be glorified?" We have not stopped praying for a miraculous healing - we know that God is capable. We have talked a lot recently about the biblical story of Shadrach, Meshach and Abendego (see the Old Testament book of Daniel) and how they prayed for God to deliver them from the King and and knew that God could, but at the same time they knew that even if God didn't save them, that they would not turn away from their faith. We continue to pray for healing. 1 Thessalonians 5:17 says to, "pray without ceasing," and that is what we ask you to join us in doing. But we are determined to be faithful like Shadrach, Meshach and Abendego, no matter what the outcome because we know that if Ethan is not healed in this world he will be healed at the throne of God. We are holding on to the promise of Isaiah 53:5 "But He (Jesus) was pierced for our transgressions, He (Jesus) was crushed for our iniquities; the punishment that brought us peace was on Him (Jesus), and by His (Jesus') wounds we are healed."
-Please continue to pray for all families impacted by PBDs.
-Please continue to pray for baby Ellie in England and her family. In addition to caring for sweet Ellie they are working doing fund-raising for the hospital so that future families will benefit. You can follow Ellie at http://littlemissellieprince.blogspot.com
-Please pray for success of the new non-profit organization, The Global Foundation for Peroxisomal Disorders (www.thegfpd.org) and continued success of the Zellweger Baby Support Network (www.zbsn.org) as we fight to find treatments and support families impacted by this disorder.
-Please pray that more families will chose to donate their newborns umbilical cord blood - this can be used to help treat many diseases and used for ethical research. Our family is particularly proud of a family member choosing to have her son's umbilical cord blood donated for Zellweger research.
Find out more at: www.marrow.org