Weight check = 9 lbs. 1.5 ozs.
I felt pretty discouraged after Lilly was denied surgery last Thursday. I honestly don't believe it was because she has Trisomy 18. That hospital has been so open to her. They were happy to do the pulmonary artery band surgery and planned for Lilly to come back for the VSD repair surgery. So I'm believing they truly think the needed surgery is too risky with her new heart problem (left ventricular hypertrophy). But still, we want to seek a second opinion. So I am working on that.
Lilly's local cardiologist was encouraging today. He said Lilly could live with her pulmonary artery band in place for many months to even years. There's one blessing to her growing so slowly.
Lilly's case manager with our local child develoment program came to the house today. She was here almost 2 hours. During that time we went over the program, signed papers, I gave her a history of Lilly, and we came up with a list of goals for Lilly. (Ex. to open her hands, move her neck to both sides, reach for things, etc.) A physical therapist will come do an evaluation soon. Then Lilly should be able to have weekly therapy sessions here at the house. We're really looking forward to that.
Lilly is in my lap right now smiling at me and talking. What's there to be sad about? :)
"For no one is cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to anyone." - Lamentations 3:31-33
That a way to think, Mama. We'll all fight for our girl.
ReplyDeleteRemember Sarah Palin and her Mama Grisly comparison. She is so right!
Yeah, Baby Girl. What's there to be so sad about? God will take care of you. He'll do what he thinks what's best!
ReplyDeleteYour sweet Lily is beautiful. I will be praying for her in general and for specific prayer request. Please keep us posted. I am putting her in my favs to come back each day. Also I will read farther back in her blog as time permits.
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