We read every google article we found about this condition and we knew exactly what was coming and what to do. We were prepared! Seizures, development delays, brain development issues... The list was endless. We were scared but definitely knew what we were in for.
On June 4, Owen had an MRI to check the status of the Sturge weber syndrome and check his brain in general as well. We awaited the bad news that we were sure was headed our way. A week later, I got the best call I could have ever dreamed of hearing. My son does not have Sturge weber syndrome. My son does not have any brain abnormalities. My son is perfectly on task and developing at advanced rates. Music to my ears. Believe what you want about it but I'm nothing less than certain that this was an act of God. We had tons and tons of prayers going up for our sweet boy.
What I will inform you of though, is that sometimes babies are said to not have this condition and then later on, it makes itself known. We are hoping and praying this is not the case but we will not know for years to come.
Thanks everyone for your unending love, prayers, and support. We wouldn't know what to do without it.
Owen is still healing from his latest laser surgery but I think it looks spectacular. I am so excited to see how it looks in the end! I am so thankful for the technology to be able to treat port wine stains.
Owen will go for his glaucoma and vision checkup Wednesday June 19 and we are hoping for great results there also!
I'm so happy for your whole family. That is wonderful news! My sweet baby girl was just diagnosed with Sturge-Weber at 11 weeks. I'm hoping and praying that her seizures can be managed and that God will bless her life.
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