Aralyn had an MRI in Dallas today. She's had 2 before and both times we were told the same thing. She has hydrocephalus(fluid on the brain) and 3 parts of her brain didn't develop. Pretty textbook diagnosis. Today we met with her Neurosurgeon, Dr. Weprin. When we first met a few months ago he asked what I wanted from him as Aralyn's doctor. My answer was pretty standard. Honest, upfront, informative. I got all three today. A didn't have problems during the procedure so I assumed the hardest part was over. Little did I know. Dr. Weprin came into the room with A's results and a counselor. Talk about knowing something's not right. None of Aralyn's brain is formed properly, several parts of her brain have "cell masses" attatched to them, and there is more fluid than expected. Those 3 things don't sound all that bad but when you break it down, it's horrible. Aralyn's corpus callosum is nonexistent. It never developed and it never will. The part of her brain that retains knowledge/information is extremely underdeveloped and covered with extra cells which keeps it from working properly. I could go through every part of her brain that is affected but it would be a never ending list. All major parts of her brain are damaged, underdeveloped, or not developed at all. Today we were given a reality check. Aralyn's brain cannot support her body. As she gains weight her body will start shutting down. I was told that because of her brain deformity and the severity of it A will never walk, talk, sit, crawl, eat on her own, be able to control her bowels, maintain good oxygen levels, etc. Dr. Weprin gave us a clear picture of what to expect but I won't go into detail on that because I have a hard time thinking about it. He did say that it can be compared to a patient with brain cancer. Aralyn is expected to suffer and experience a lot of pain. That is where it is hardest. She is so pure, sinfree, and precious. I know that once she is Home she will have a perfect brain and will never feel pain again, but until then all we can do is pray. Dr. Weprin said that the first signs of this process is the inability to maintain oxygen and vomitting and she is already struggling with both of those. I don't pray for her to be healed, I pray for her to be comfortable. God will heal her when the time is right. Thank you to each one of you who have let Aralyn into your heart and continued to pray for her. Her journey did not begin with her first breath and it will not end with her last. She was loaned to me for a reason and one day I will know why. Please feel free to send me a message at AralynFaithvsTrisomy8@gmail.com if you would like to know more.
Blessings!
No comments:
Post a Comment