Feeling pretty tired tonight, but couldn't go to bed without sharing the good reports we received today. Amelia's aortic root is still dilated and has not decreased in size, but it is not growing either and considering Amelia has almost doubled in size from her birth weight, this is great news! Amelia even had some big smiles for her doctor! However, he wanted to be sure we understood it is still very large, but we're hopeful the medication will continue to keep it stable until she's able to have surgery, hopefully when she's older (like in her 20s even). At this point, he will keep increasing the Losartan every 2-3 weeks until we reach a dose that's recommended for patients with Loeys Dietz Syndrome. She will also continue on the beta blocker. We will see him again in a couple months and do another echocardiogram of her heart at that time. Pray the good news continues!
Tomorrow Amelia has her weekly physical and occupational therapy; pray she tolerates it well!
After we got home from the appointment today and Nels went back to work, the kids were playing downstairs, Amelia and I danced to "Praise the Lord" by the Imperials. If you get a chance to listen to this song, it's an oldie, but goodie! I love to just sing it at the top of my lungs because Satan is not going to win this one!
"This is the day the Lord has made; let us rejoice and be glad in it!" Psalm 118:24
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!
So, since my last post...
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!
