My Vent, my scream, my frustrations!!!

3 years and 3 months and counting the days till when I have a confirmed diagnosis. I am so tired right now. MRI at age 3 is a hard one to do awake. They wanted to put an IV in him at the Macon Children's Hospital....they are CRAZY. I will get it done in Atlanta. The local Doctor doesn't have access to a hospital where they are capable of doing it the way I want it run, I am ticked he even set it up in Macon with a 3 year old, none of the other parents talked about them just putting an IV in their kids, I was so unprepared for that part, so thank you for sending me a bill for wasting a day of my time, my money, and my energy.

So how does this all work. Doctors, doctors and more doctors and yet none of them meet, none of them speak to each other, they don't even know one another. This not meeting must be the dumbest thing I have ever seen. My son has no study team that figures out more about Hemihypertrophy. I am not sure how many kids in this area have this problem, but good luck finding a doctor that is familiar with it in Warner Robins, Georgia. As far as I know no one knows about this with out reading about it, I guess it is time for me to do something about that. T-shirts for Nate, I donno. June is the not official month for Hemihypertrophy, I'd like to get some t-shirts made up.

 Guess I should start at the beginning of today, I can't even remember what I have written on Nathan's blog, but today was his big day, he finally met the doctor that knows about hemihypertrophy, not sure how many patients she has with this disease, birth defect or what ever you want to call it. My brain is fried. She ordered the test needed to confirm some things that we are guessing at. He'll be sedated with gas and have an MRI and a sonogram done, blood drawn, and I don't know what else done, I asked that they look at his ears while he is knocked out.

On the way home I got a phone call to set up for the sonogram on Nathan's belly for the possible tumors a child with this condition should have run every couple of months, Nathan has had one. Most people have these run every 3 to 4 months from birth and blood drawn for the cancer blood levels (can't remember the name of what is raised....) anyway, it seems as if this is where we start the process of the correct screenings being done and hopefully less wondering if everything is okay with Nathan and more knowing he is healthy. That is the part for Hemihypertrophy.

The MRI will be done on his brain to see his brain and how it functions, think ctscans were also mentioned but the MRI was definitely there because when I mentioned it to the sonogram tech she said, she missed that part on the sheet but it was there on the bottom and to expect another phone call from a the people who can set up both, but that she only could do the sonogram. She mentioned the names of the ladies that would be calling me, so I am waiting on that.