After a long fun weekend, we packed up and headed to Birmingham for not so much fun. Asher was scheduled to meet with the neurosurgeon at Children’s for the first time. He was tired of being in the car, and I was nervous. I had some idea of what we would hear, but I was surprised, too.
Children’s is an awesome facility. The lay out is set for kids to feel comfortable in their surroundings. They even had clowns on hand for face painting. While I filled out paperwork, Steve and Asher walked around to check it all out. Ash even got balloons painted on his leg! If it wasn’t for all the yucky doctors, it would be a fantastic place to visit.
The neurosurgeon was a very nice man. He took a look at the MRI, studied Asher’s head, and told us the news. He saw nothing that concerned him with his MRI. Yes, the cyst was a category 1 or 2 (which is small), and yes the water around the brain was there, but the amount was not enough for any concern. Great news! However, when I asked if these things would be causing him developmental issues, he said no. It may be a genetic disorder. “WHAT?” Asher has a ridge on his forehead where his skull didn’t grow together correctly. This plus the developmental issues point to genetic problems. He called a colleague to tell him what to order for the blood tests. He also ordered an X-ray to study Asher’s skull to make sure there were no other problems.
We waited for the genetic doctor to fax over a list of possible disorders. When the fax finally arrived, there was one disorder. One disorder with a 5 page synopsis of the disorder. It is called GA-1. It is a metabolic genetic disorder which prohibits the body from turning Gluteric Acid into energy. Most of the symptoms Asher has could be explained by this. However, we will not know the outcome of the blood tests for another month. If the test comes back positive for this disorder, we will have to implement a lifestyle change that will follow him throughout his life. It could be very dangerous.
Basically, we don’t know anything. I just want them to find out what is going on with my precious fella and FIX IT!!!! I’ve spent a majority of my life putting doctors on a pedestal, but now I understand why they call medical doctors “Practitioners”. They are just really smart people who are trying to figure it out. I’m not blaming the doctors. They are doing the best they know how. I’m just impatient. I want to know what I can do to help my boy. Right now, Steve and I are fumbling through all of the medical mumbo-jumbo in hopes to help find the needle in the haystack. It has been a horrible journey. This road continues before us.
Some would be so bold to say, “Just trust the Lord”. To this I respond, “Well…of course I do!”. However, I am human. In this state of being, I am a sinner. Therefore, I generally fail more than fly. Trust in the Lord only comes from the Lord. In and of myself, I tend to be more like Job than Jesus. Just being honest here…please don’t crucify me.
I want to thank everyone for their prayers. Many of you have asked what is going on, and I am certainly willing to discuss it. To be honest, though, it is easier to write it down. Every time I talk about it, my frustration goes out the roof. I love you all. I just want my boy to be well. My heart is trying very hard to not shatter on a daily basis.