Another reason I feel so good is because Edward has been eating like freakin Kobayashi! Just this past Saturday, Edward has decided that he will eat 60-70 ml every three hours! Prior to Saturday, it was a struggle to get 60ml in him at every feeding and I would feed him ALL day long. In a two week period he only gained 2 oz. I told him I was going to have to put the feeding tube back in and that was when he straightened up his act! What a good boy. (We are seriously blessed that he doesn't have any real feeding issues!)
And we were able to secure a house! I am so excited. I get to play house for real. It has a huge backyard and lots of square-footage! Praise the Lord, seriously.
Today was the start of a stressful week. I had a cranial facial appointment for Edward, which was the start of many appointments for the week. My doc said that Edward does have scoliosis. Which seriously sucks. We know he has kyphosis, which would make him hunch forward, and lordosis, which is an increased lower back curve. It just sucks hearing that. It is just something else we have to monitor.
I don't know, I feel like I am where I was meant to be. I was made to be a mom to a baby with...FSS. I think Jesus has prepared me all my life for this. As hard as that has been for me to accept, I feel good about it and am ready to take it on with a good attitude. (Long time coming, right!) I have been able to hold my head high with pride when I look into Edward's eyes, knowing we were made for each other. MFEO. It is not to say that my heart doesn't hurt for him when I think about all the suckiness that is arthrogryposis. I just love him to death.
I am so blessed to have such great family and friends who have helped us and have prayed for us. I have really felt the love. Seriously, I know Jesus has answered prayers. Thank you.
Keep praying for him, as surgery is bearing its ugly head on Thursday.
P.s. On Saturday, Edward's right leg cast literally fell right off! Silly boy.
|foot csat fell off!|