Luke had his appointment at Shands in Gainesville, Florida this week. We met with the doctor and a genetic counselor. I had a notebook with me complete with all needed information and family health histories as well as pictures. The doctor did not tell us anything we didn't already know. Luke has obvious neurological issues, but looks completely normal otherwise. They took blood while we were there. They are going to do a more in-depth look at chromosomes. It will take two weeks to get results. (Another week and a half to wait). The trip was quite emotionally draining for me. I wanted answers. I am just going to have to be patient and wait.
Luke also had an appointment with a Rhumatologist today. They took blood also. The doctor wants to see if there are any allergies present. They are also testing for immune system difficiencies. We have a week to two weeks to wait for that.
The next step is an appointment with his new neurologist on April 7th. The Genetics doctor wants an MRI of Luke's brain. This will show if there is any atrophy. It will also show the effects of the seizures on Luke's brain.
So, more testing for Luke. I hate that he has to go through so much, but I do feel that we need answers as soon as possible. I want to make sure we can do all we can to help him.
Friday, March 27, 2009
Monday, March 9, 2009
Anxiety
Luke's genetic study is coming up in a few weeks. I can't say that I am feeling peaceful about it- I wish I could. I just so badly want some answers. This study could give answers, but the again, it may lead to more questions.
It is so hard to relate to Luke. Sometimes he is right there with us and other times he is in his own world. Tonight, for the most part, he was in his own world. I wanted and needed to hold him but the only time he would give me was when he was drinking his bottle.
I am so torn. Some people tell me that, because I am a woman of faith, I shouldn't worry, fear, grieve, or feel sad over the situation with my son. Others tell me it is ok to let myself feel the pain of this. Who is right? Who is wrong? I am conflicted. I worry. I fear. I definitely feel the pain of this situation... even though I try to keep a positive attitude about this.
Truth be told, I have never felt so much pain. This is my son... my flesh and blood. There is something wrong and I can't fix it. There is a high probability that, by the time it is all said and done, he will have a list of diagnosis' and disabilities. I so much want to have a real relationship with him. I want him to call my name. I want him to crawl... and walk!
I just want to feel ok with all this...
It is so hard to relate to Luke. Sometimes he is right there with us and other times he is in his own world. Tonight, for the most part, he was in his own world. I wanted and needed to hold him but the only time he would give me was when he was drinking his bottle.
I am so torn. Some people tell me that, because I am a woman of faith, I shouldn't worry, fear, grieve, or feel sad over the situation with my son. Others tell me it is ok to let myself feel the pain of this. Who is right? Who is wrong? I am conflicted. I worry. I fear. I definitely feel the pain of this situation... even though I try to keep a positive attitude about this.
Truth be told, I have never felt so much pain. This is my son... my flesh and blood. There is something wrong and I can't fix it. There is a high probability that, by the time it is all said and done, he will have a list of diagnosis' and disabilities. I so much want to have a real relationship with him. I want him to call my name. I want him to crawl... and walk!
I just want to feel ok with all this...
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