We have so much to be thankful for! God has certainly blessed us with an energetic, joy-filled baby girl! 2 months ago, I was just hoping I would have her and God has far exceeded my expectations! This morning we had a visit from one of Amelia's physical therapists and it was a very encouraging visit. She used words like, "...determined, strong, so alert, vocal, sharp, cognitively right on, firing off with vigor!" Wow, I just smiled. Praise the Lord for our Amazing Amelia! To think about the day we brought her home from the hospital and wondering what would come of all the negatives we were left with...I was most concerned about her brain. God has answered so many prayers from so many of you! THANK YOU!!! Never ever doubt He hears each one of those prayers!
We sought out another opinion from another cardiologist. We were referred to him by a friend of a friend...another answer to prayer! He not only worked for many years in a hospital that saw patients with Loeys Dietz Syndrome (LDS), he has spoken with Dr. Dietz a couple times. This was so reassuring! It has been difficult to find any doctors that have even heard of LDS. After the first visit, we felt confident he was really doing what's best for Amelia considering her condition. So, tomorrow we have a follow up appointment with him and an echocardiogram to check the size of the aortic root. Pray for another reassuring visit with good test results!
At that appointment I also plan to discuss a couple things with her doctor that seem somewhat minor, but could be related to the medicine she's taking. She still has trouble sleeping...this is not good....mommy is very tired! :) She also does not travel well at all. She never has, but I was hoping she would have grown out of it by now or get used to it. She cries so hard at least half of the trip there and back...with at least one appointment a week, sometimes more, this has been tough. And, of course, all I can think about is her heart. I know even the small details matter to God, so please pray that Amelia starts getting more sleep at night and starts to also tolerate the car better.
In addition, Amelia's cardiologist also feels it is important to have Elsie and Sam tested to rule out an aortic root dilation. Since Amelia's heart condition is congenital, he said it's possible they could have the same thing. So, they will both be having echocardiograms to rule this out. I am not really worried about this, but it's still a possibility, so please pray their hearts are perfectly healthy! And, also pray that they (especially Sam) tolerate the testing well.
In ending, my niece made a picture for Amelia for her baptism and I just love to look at it. Addison, God is answering your prayers!