My oldest daughter took today's pictures of Lilly and called them "gift wrapped by God." Complete with a bow on top. She certainly is a gift from God! :)Yesterday one of Lilly's doctor's called to tell us that Lilly's sleep study revealed that Lilly has obstructive apnea. We don't know what is causing the obstruction so she will have to undergo some further testing with a pulmonologist in a couple weeks. We are praying that whatever it is, it will be an easy fix and won't require more paraphernalia. (ex. oxygen during sleep)
"Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end." - Ecclesiastes 3:11
Good job tabby rose! love your photos and your captions...
ReplyDeleteok, Tabby. this is worse than Thorn wearing doggie clothes with bunny ears. Lilly is a good sport.
ReplyDeleteBut she definitely is our Present, isn't she?
Pray for Caleb. He is having reactions from the shots he has to get to prevent RSV.
Love,Shisshy
This is Brad. We wish the diagnosis were different, but I am now becoming more and more confident that this is one of the biggest problems with Trisomy 18. With the right machine settings, she will probably sleep nicely. Make sure you follow our progress with Faith to see if the jaw distraction is something that can help Lilly. We will continue to update you as to how much this helps Faith. I am confident it will get her off of the BIPAP machine entirely; although the doctors don't promise anything. Just so you know, Faith has very high settings of 18 over 12 on the BIPAP which is an extra push pressure of 18 with a low sustained pressure of 12. We are so happy that you had this diagnosed before Lilly has to go through the things Faith has endured. You will need to have Lilly's jaw checked. It looks a lot like Faith's jaw, but maybe not quite as severe...I'm gonna bet that's the culprit causing the obstruction.
ReplyDeleteI love these pictures T. - You did a great job! It looks like fun playing in the wrapping paper!
ReplyDeleteBy the way, here's a prayer for the whole thing...balanced chromosomes for Lilly. He flung the stars into existence so He can balance her chromosomes. We will be praying.
ReplyDelete