Brae's Story

To type Brae's story out is no small task. I will hit some highlights and milestones and some I will feel in details that we didn't know until years later but now I can tell them as they happened.

Brae was almost 28 weeks when he came into the world. First thing the doctor said was we will be moving him to NICU and he would be on a ventilator probably 4-6 weeks. A week later he was weaning off the vent onto oxygen. He came home at 7 weeks. Weeks earlier than they had first predicted. He weighed 5 pounds the day I brought him home.

It is hard to pinpoint the exact point when we knew something was wrong. We now know that he had a rare rare reaction to his MMR vacination. We know that Brae's body actually seems to collect metals instead of dumping them on his own. Enviromental metals, etc.

At 27 months we were seeing a speech therapist, occupational therapist and physical therapist. One day the physical therapist told me she had him on the swing and he did a very weird thing with staring and then slumping that she had never seen him do and that he was really out of it. 3 weeks later we would have our first grand mal seizure. Matt was out of town in Pennsylvania and I will never forget the trip to Little Rock. At this point we had no clue what was going on. This would start a pattern that would go on for years without being helped by medication, etc.

At 3 1/2 during an MRI a mass was discovered it was benign but had to be removed using a gamma knife procedure. This too became a pattern. It was not until he was almost 6 that the high metal count was determined and they found that it may be the cause of the masses forming.

Brae is now 9 and I know I have skipped A LOT but know that we are still in a cycle of not knowing a lot about his condition. We know that it is very rare. We know that he has improvments and set backs all the time. We know that when we think we have it beat it rares up again. We know that he has a seizure disorder but not diagnosed as epileptic. We know that he has masses and must undergo radiation. We do not know why.

I remember one visit with a new doctor when Braden was 7. The doctor met with me before meeting Brae and was asking me questions like is he potty trained, etc. I was looking at the doc like he had a 3rd head and saying yes. The doctor told me that I needed to let him know what Braden was really capable of. I told him I was. The doctor then informed me that a child with as much white mass (dead areas) on the brain as Brae has would not be able to function as I have described. 20 minutes later after meeting Brae I got an apology and the doctor got to see a child that did not conform to his medical textbook. This is also a pattern we have....amazing doctors...and not conforming to textbooks.

As Brae's parents we don't stick to one thing either. Why try to force the square peg into the round hole. We use a mixture of mainstream and natural meds, we have both natural doctors, and medical doctors, chiropractors, nutrionalists, etc. We have found that just main stream was not enough and we do not feel that natural would be enough so we blend and so far that is what is working the best. We pray and try our best to listen to the direction the Lord wants us to go as we know that no odds would be defied without him.

Defying Odds

Defying odds.

Those words describe Brae like no other words can.

I have documented in the past Brae's medical and then quit. This time I plan to stick with it so one day he can look back and see just how many odds he has defied.