I spoke to the neurologist about Logan's discolored urine and received answers to my questions. My question to the neurologist was "Is the brown urine a sign of to much activity or was it that he wasn't getting enough fluids?" I was informed that it was both. Brown urine is a sign of receiving to much activity. The recommendation is not to stop activities that may be tiring to him. He will just need periods of rest. It was also recommended that we push the fluids when the brown urine occurs. In the worst case scenario if the discolored urine would continued and he got his fluids then he would need to be flushed out by IV.
I've been struggling with what is best for Logan. A couple of situations have came up with him saying " I can't do it, I'm tired." Examples are getting up from the floor, going from a laying position to sitting up, and walking. For a long time I thought Logan was just a lazy little guy. That he didn't want to do things on his own. I spoke to the neurologist about these situations. I asked if I should just help him or coach him to do it in a way that is easier for him. It really is my call. It will not damage him if he is coached. Over the years I have always coached him to walk when he said he was tried. Not because I knew that he needed to be coached but because I thought he was being lazy. I'm hoping that in the past me coaching Logan to walk when he said he was tired has kept him doing so well. I believe coaching him at this point is what he needs. If I notice that he is really struggling then at that point I will offer him assistance.
I love that little guy and only want what is best for him. I want him to do what he can on his own for as long as he can. I'm hoping Logan doing what he can on his own will give him a sense of independence. At this point we don't know how long he will be able to have that sense. With Gods grace I'm hopeful it will be for many years to come. Please continue to keep my little man in your prayers he will need all he can get.
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I just found your blog. My husband and I believe that our son, Caleb, (born 6/4/06, so just a few days after your Logan!) has MD. He has a Dr appt on Tuesday and we will start the journey to see if he does in fact have it. I am thoroughly enjoying your blog, but this post in particular spoke to me. For years we too have thought that our little guy was just lazy, always asking to be carried, saying he couldn't do things, etc., and we always tell him to just keep on keeping' on. It brings me hope and encouragement that I'm not the only one (mommy guilt is tearing me up thinking that maybe all these years he really truly has had a physical limitation & I just kept pushing him). You have been there before, but you also think its helped him to stay healthy & continues to help you help him. That is soothing to my heart. Please keep up blogging your journey. Thank you.
ReplyDeleteKalani