Today we I have an exciting update to share about Kyson. (Pretty long post sorry!) This has been a big week and I got a good call today from the geneticist. About 2 weeks, I started apply an essential oil on Kyson that is for DNA health and repair while I prayed over him. The results have been amazing. He is now eating like crazy. For the last, 4 days it seems like he cant get enough food. It still feels surreal to watch him eat. The small seizure like episodes that have happened at least daily since he was born are no more. He hasnt had an episode for at least a few days. I wasnt really watching for it because I didnt expect that to get better. We still need to get him drinking from a cup but his swallow seems to have improved significantly. We had a slight set back about 2 weeks ago when his reflux (which was controlled by several medications) returned. We had a new medication compounded at custom pharmacy. He has been on that for about a week and the reflux seems to have improved. I got some essential oils to help with the reflux today and Im excited to see if they continue to provide more help in hopes that he will be able to go off medication eventually. His neurologist warned us that when he started to eat constipation would be an issue and he was right. We are trying some oils and prunes and hope he will feel better soon! He has been pretty miserable today. He tried to stand up on Sunday and his overall muscle tone seems to have significantly improved. He is getting fitted with a walker tomorrow and we are so excited to see him be able to get around! Today we received a call that his micro-array results came back. This is the first of 3 genetic tests. This is the one that really tells us the least. It looks to see if he has any added or deleted DNA. They found a small deletion on his Y chromosome but they still deemed his results as relatively normal. The next two tests are the big ones. They will likely provide the real answers or rule out the real answer that we hope he doesnt have. One should be back in February and the other will be back by the end of March. God continues to provide all we need. Its a one day at a time season but I really believe this is how God intended us to live. Walking close to Him and allowing Him to be in total control. We have grown so much. I have never been more present with my kids or felt more secure of myself as I do now. I guess this is one of the benefits of having my world turned upside down. Divinely, standing on my knees so close to my darkest fear isnt nearly as scary as it once was. The peace God has provided and the joy in all the little things has been such a gift. God is good and mighty to save. #kysonstrong
Posted on: Thu, 22 Jan 2015 00:50:26 +0000
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