She now weighs 8 lbs. 1 oz., which means she gained over a pound in 2 weeks since her last appointment. Way to go Leah! Some days Leah's been able to get sleep, and other's are still leaving her "Sleepless in Sherwood"~ as the moment she falls asleep, a seizure wakes her up.
We are so excited to announce, that in answer to our prayers for some respite, we have been approved for 3 nights a week of private duty nursing. This should begin next week! We also will be seeing a new Pediatric Neurologist tomorrow to see if there's anything additional we could be doing to help manage Leah's seizures.
We are getting much more comfortable juggling Leah's various medications, using the pump feeding system, replacing Nasal Gastro feeding tubes (well, Luke is anyways!), and pronoucning big, long medical terms.
It seems like Leah will get some time in the spotlight between her upcoming concert, a brief article in the June 4 edition of the Oregonian's Washington County Weekly, and we just got a call from Koin 6 news, to tape a short piece about Leah. We are awestruck, that all of these opportunities to share Leah's story, and the mighty work of God, have come to us as we are home focusing on caring for little Leah. We are praying for God to be glorified through all of these various opportunities to speak of how He is the author of Leah's life, and how He is providing our family the grace and strength and support from all of you, to face this challenge head on!
My prayer from day one of our diagnosis during pregnancy, is that as we walked this bittersweet road with Leah, God's goodness would be the most prominent part of our story. And that through our pain and trials, God would bring us and others closer to Himself.
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