Before Abram, I always knew the medical field was filled with holes but I had no idea how many. I had no idea how hard we'd have to fight to get someone to listen to me when we wouldn't stop screaming as a newborn. I had no idea that 3 years later we'd still be fighting for diagnoses and for good decent doctors.
We finally have a wonderful Pediatrician who we love and adore and the best Pharmacist a person could ask for. He's known me for 15 years and has always helped me with choices on what is best for me and mine.
I must admit that I was pretty hurt by the fact that our Neurologist who had been seeing my son since he was 10 months old was unwilling to help us. I am certain that much of his inability to help comes from the fact that his job relies on his compliance with Hospital Policy but it came with great disappointment. It's hard to fathom how someone can tell a parent that there is a medicine that can help your child, encourage you to get it and then yet refuse to sign a Registration Card to prevent you from being prosecuted. It's just disappointing because I thought they really cared. I was wrong. What's even worse is that everyone is more worried about getting sued instead of worrying about what is right. Yet, I have to remember that our Neurologist has to worry about their job and their own family as well. I should not expect him to risk his livelihood for my child. I should however, expect that a Hospital would do what is best.
The last three years have been spent fighting for doctors, for answers, for specialists and then sub-specialists. I feel like I'm always advocating, researching and reading and then re-reading. I had no idea how hard it would be to find a team that would cover all of our bases and make sure that everything is going well. I think we are finally on the right track but only time will tell. Kids with complex medical histories are hard to service and I fear that the changes our Governor has made to his Medicaid will only make things worse in 2016 but I'll just fight for that too.
For now, my focus is on getting the Iowa Law changed so my son can get help. The current CBD Bill in our state isn't enough. There are NO Neurologists in the State of Iowa who are willing to stand up and help a little boy get better on a natural medicine like hemp oil. We NEED a more comprehensive Medical Marijuana Bill put into place so children and adults alike don't have to suffer from seizures, neurological disorders and auto-immune diseases and more.
I will always fight for Abe. It's just unfortunate that it has to be so hard to get the right care for kids who confuse the system. It's hard to get the right care when you know more than a lot of the people you are going to for help in these Hospitals. It's hard to know who really wants to help you and who just wants your money. It's hard to know if I am ever making the right decisions. So I just have to go with my mama gut and fight for what I feel to be right.
I just know that I want what is best for my son. And adding more Pharmas to an already globally delayed child is not the answer. He deserves a quality of life where he can be a kid!! He deserves a try at the very least. He has been on some form of pharmaceutical medication from Day One and it's time to stop.
He deserves to be a kid.
And I hope that someday he'll read these Blog Entries and be happy. But for now, I'd settle for hearing him call me Mama again. The seizures stole that from me too.
The silent majority aren't keepin' quiet anymore.