All of Capris liver results have come back Her billiruben is back down to normal levels which is great! One of the other tests came back normal and 2 came back elevated. we will go back at the end of October to do another blood draw and test her levels again. If the 2 are still elevated we will test for PFIC. I am trying not to look to much into this until I know if she has it or not. The little that I did see was that if it is bad enough she will need a liver transplant. It also could just be treated with medications. Im hoping that everything will continue to go down and by october we wont need to worry.
Having 3 kids is defiantly a lot different than 2. I feel like I am constantly running yet I am not accomplishing anything. I am so grateful for the kids preschool because it helps remind me to sit and spend one on one time with them every night while we work on homework. All night A asked his dad to go on activities with him. "Maybe just you and me could go to cabbalas, cause thats man stuff" " or maybe we should go fishing so we can catch some catfish again". "How about you and me go work on the boat and the girls can clean the house". He loves his daddy so much. We said we were going to make it a point to do one Daddy-daughter mom-son date (and visa-versa) a month with A and B. Saying is a lot easier than doing. I feel like we are so busy that finding time for anything one on one is hard.
On a brighter note I got Capris stroller in the mail. I am so excited about it. Its made of all metal so it is sturdy enough to hold her oxygen, pulse ox and feeding bag. Plus the seat swivels so i can have her facing me to make sure she is breathing okay. We have always been on a budget so with our other children things like strollers or baby monitors were what is the cheapest i can find that will get the job done. Being able to research and find one that is perfect for Capri was kind of nice. Before we knew about Capris heart my plan was to take kids to preschool then take C with me to the gym and drop her off at the daycare while I worked out for the 2 hours. With her being so medically fragile and not having anyone comfortable watching her the two of us are going to start running. I have never liked to run. After a block I have convinced myself that I am having a heart attack and my lungs are collapsing. then I walk back to the house and try again in a few months. Hopefully our new stroller will give me motivation to keep with it while the older kids are in school.
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