So I want to explain what has been going on with Levi regarding his health- not for pity, but instead for informative use since people tend to hear through the grapevine about his condition, which I would like to clear up. He has a very rare autoimmune disease called Dermatomyositis, which affects 1 in 3 million. Yup thats my miracle kid-very rare! It makes him sun-sensitive making him red, as well as making his muscles weak which gradually gets worse until treated. We discovered this disease about a month ago after seeing 3 specialists at UCLA (which his main doctor now is amazing!!!) when we saw that Levi was becoming weaker each week and had a hard time climbing stairs (this really started about a year ago). We finally had to ask for a wheelchair just for events like the harvest festival and doctor appointments, making it much easier on us so we dont have to carry him long distances. So for treatment- he needs 6 months of steroids and 18 months of oral chemotherapy, along with physical therapy a few times a week. After starting meds and physical therapy, he will slowly start feeling and acting better. At the end of 18 months the meds should take it away which means he will be in remission, but will have to be monitored the rest of his life since it can come back. I am still working at Olive Knolls, and he will still be attending. Next year he starts kindergarten at Olive Knolls which will be great so I can monitor him and be a few steps away. Yay! Again, this is NOT for pity, just to clear it up for those who have heard a bit of it. So please do not leave any type of negative comments because I have the ability to delete them haha! What you can do instead is pray for us all, especially Levi of course. Thank you!
Posted on: Sun, 02 Nov 2014 23:48:09 +0000
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