We just returned from our meeting with the neurologist at Gillette and I am nothing but ANGRY!
We questioned going through with this procedure. Why? What will it bring us to benefit Roa? Will we get answers that are helpful? Will it show us different methods in our attempts at helping his motor development? Why are we putting him through sediation and spending large amounts of time and energy and money on this procedure?
Doctors, therapists, nurses...all told us, "An MRI is a good thing to do to have in his file." It is a good thing to get a picture of his brain so we know what is going on."
Once again, I question.... WHY?
If this picture of his brain is taken, will you tell us about the wonderful medical advancements of today and HOW YOU CAN HELP MY SON?
Will you tell me of new procedures, trial operations, advances in therapeutic studies? Will you tell me of NEW literature you have read on cerebral palsy and how we can CHANGE motor patterns with brain stimulation?
We are in the year 2010. You, doctor of neurology for one of the best children's hospitals in the midwest, can sit there.... read the brain scan and say, "We can see that there isn't enough brain matter in the left side of his brain that is affecting motor skills on his right side and overall patterns in general."
This most likely happened before birth as a result of an injury. You are going alot of different therapies, that is good. He is such a handsome young man!"
WHAT can you tell us to HELP us, Wise Doctor, Giver of Hope?
"Based on what I see, he will have difficulty moving on his own and if he doesn't acquire the skills to move on his own, you may some day look at a wheelchair. If the brain injury doesn't allow him to motorically form words, the therapists can help you determine the use of a communication aids."
Seriously?? That is why we put our hearts and hopes and dreams on the line? For that little slap of doubt and dash of dreams? Honestly, I think that this doctor is a nice, little old man, who looks at what he learned in 1961 and had not advanced past it.
DO NOT LIMIT MY SON! We will continue on our path, showing how much we believe in our Roa and give him EVERY new therapy that is out there. We will continue to research and strive to uncover the NEW things that science can bring. Do not tell us that we don't know if this or that is working because it is still in the research stage. BRING ME TO THE RESEARCH. Let us be a part of it. Do not limit Roa's future.
Nothing but angry....
HE IS OUR SON!
Sorry to hear that your visit was frustrating to say the least. Glad that it hasnt dashed your spirits but seems to have only fueled your passion to give your son everything in your power. That is why I so enjoy following your blog. You are a warrior mamma! If there is a new therapy out there to help our kiddos, I know you will find it. Thank you for sharing with all of us.
ReplyDeleteJennifer, I hear you. You've got every right to be frustrated. And you have every right to believe in your amazing son. Keep on keeping on my friend.
ReplyDeleteJennifer--
ReplyDeleteYou a great writer. Your words are full of emotion that will be a change agent not only for your child but for others. You have the ability to be an advocate for many families!!