The place that will be doing the "study" on Lilah's blood is only looking for one thing. Wait a minute here...I don't want them to look for JUST one thing. I want them to test for ...everything. I feel like I am talking and talking and no one is listening. I thought that Aaron and I made ourselves PERFECTLY clear when we said, "we want to know...whatever it is. Please test for everything."
When Lilah was 9 weeks old I begged for a blood test for Lilah to see if there was anything else other than her eyes. Cossio didn't see any reason to test for it, but he did it for my peace of mind. Little did I know that those 9ccs only tested for broad spectrum karyotype. Her karyotype came back..."normal." Normal is something that needs to be removed from the medical dictionaries all together. Really! What is normal anyway? Perfect legs, perfect head, perfect arms, perfect eyes? perfect? Our society has pushed into us all that we must "be" a certain way or "do" a certain thing in order to "fit in." A friend of mine once said, "in Jesus' eyes we are all the "in crowd."
I found out Friday that Lilah will have to have her blood drawn multiple times and sent to multiple places. Are you kidding me? There isn't one place that can test...for everything? So we must send her blood to Wisconsin for one test and then draw more and send it to more places. I hate this for her. I hate that I have tried everything I can and I still feel like its not enough.
Why haven't more Doctors suggested that she have these tests done? Out of all the docs we see...where is the continuity of care?
Have you ever watched that show on the discovery channel where they know there is an issue, but they don't have a "name" for it? So they keep looking and searching and coming to road block after road block and the Mother says, "I just want to know what it is so I can help her".......THAT is me.
I remember the nurse handing Lilah to me and I instantly knew that there was something wrong with her eyes. They kept telling me "no, she's fine"....18 hrs later I learned the truth. I feel like I can't rest until I know it all. What is "it?" How will this affect the rest of her life? Will it just be a "name" and we will finally know....someday...and can take a breath?
Today after Lilah's multiple therapies...blood will be drawn.
Why can't there be one place that tests for it all? Why do we have to put her through it so many times? Is there a way that our "system" could be better and more efficient? Sure seems like there should be a better way....
2 comments:
I have HOPE for YOU and for Lilah! Allow God to work His miracles and continue to be the persistent MOM that you are! YOU'RE doing such a GREAT job, Katie Sharp! Keep up the good work!
I just wanted to say that I know and understand what you're going through and you are already doing all that you can and I know how it feels to feel like you can be doing more.
Post a Comment