Today we met with the plastic surgeon and he seemed very optimistic and thought that we could fix Samuel's lip in about 10 weeks and his palate in about 8 months, which is normal for babies. We also met with the geneticist from Denver Children's who wanted to see Samuel. He thinks that he may have Goldenhar association, but it is not know which genes form incorrectly with GA, so there is no test for it. They make the diagnosis based off of Samuel's features - all chromosome and gene tests have come back normal.
Samuel is also getting a feeding tube placed into his stomach tomorrow at 11 am and they are also doing a procedure that will prevent acid reflux. We also asked the surgeon to perform a circumcision while he's on anesthesia. If all goes well, Samuel could be home in 1-2 weeks. There is a lot of preparations and learning that we need to do on our end, so please keep that in your prayers.
Our biggest concern is Samuel's brain. The doctors seem concerned about the amount of brain that has formed and our prayer is that it continues to grow and adapt with the pressure relieved over the next couple months. (Babies brain continue to grow over the first months of their life) Please keep this in your prayers, God has given us the technology to fix many things, but only God can make his brain grow the way we'd like it to. The doctors seem to prepare us for the worst case scenario, but the geneticist told us today that Samuel has an amazing will to live, and we believe that same spirit will keep him fighting. Thanks for your thoughts and prayers.
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Hi Kristy,
When we first met with our son's pediatric neurologist and asked about his abnormal MRI and what we could expect in the future, she looked us straight in the eye and vehemently stated, "We know next to nothing about the human brain. We always look at the child, not the scan, to predict the future." She then went on to tell us that she has patients with severely abnormal MRIs who are developmentally on target, and patients with perfect MRIs who are extremely delayed for no apparent reason.
I'd say, looking at what a trooper your little Samuel has already shown himself to be, that his brain will maximize every opportunity it gets. Please know that we will continue to keep your family in our thoughts and prayers, and will continue to cheer "Go, Samuel, Go!" from our little corner of the blogosphere.
May peace be with you.
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." Romans 15:13 NLT
Jeff and Kristy, know that God himself holds little Samuel (and the whole family) in the very palms of His hands. Praise God for miracles!
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