NEHI update

Maybe one day she'll be permanently tube free!

Today Sophie had her three month check in with her pulmanologist and he gave her a good report! Less crackles in her lungs (very common symptom of her disease) than in the past and breathing well.

He wants to keep her on .5 liter of oxygen 24/7 still, but we can take her off for short periods of time (30 min) for things like swimming etc., depending on how she tolerates it.

We will wait to see what her GI doc says about her weight in May, but we're just going to keep pushing the Pediasure and praying she stays on her own little growth curve. Because she has grown in height recently and is walking around so much now, she is looking VERY skinny at the moment, poor little dear.

But that doesn't seem to slow her down! The doc was really pleased with how active and coordinated she is. Praising the Lord for positive and encouraging feed back!