Visit to the Doctor

Three months ago before Grace went into the hospital the first time her therapist had an idea that maybe Grace has a traumatic brain injury(TBI). This thought came because she just doesn't seem to know what her triggers are. The thought came that because she has struggled with Asthma for so long that there could have been time with out oxygen. Lack of oxygen can cause a TBI, who knew??? Well when her therapist presented this idea I remembered that Grace had an accident when she was one year old. When Grace was one she tried to climb into Brother's booster seat at our kitchen table. Her foot slipped and as she started to fall the booster seat caught her at her neck and the back of her head got caught by the back of the table. It completely asphyxiated Grace. I was in the bathroom when this happened. I found her blue with purple lips and immediately used my CPR training to try to get her to breath again. I was able to get her to take a breath but I couldn't get her to wake up and her breathing was not normal at all. I called 911 and waited for an ambulance. Grace was transported to the ER and was breathing and awake by the time we got there. They admitted Grace to the PICU because she was still very lethargic. After a few hours in the PICU she perked up and started to play. They decided at that point to move her to the pediatric unit for a night of observation. At the time of the accident the doctors warned us that there was no way of knowing if there would be any long term affects from the lack of oxygen. At the time we were just grateful to have our little girl still breathing. Honestly I was grateful to not be planning a funeral. It was really that bad. I refer to this day as the worst day of my mommy life. When I think about it I still tear up. Once I shared this accident with Grace's therapist she said we need to see a neurologist and soon. I called our pediatrician and he agreed that Grace needed to be seen. He made a ton of phone calls and found the bast doctor for Grace to been seen by. As Grace was admitted and working with the first hospital we told them what was going on and they dismissed our concerns. We just kept pushing forward and looking for ward to this appointment. We finally saw the Doctor last week. (I know it took a long time to blog about it!!)

So the thoughts from the doctor were not at all what I was expecting. I have to say first off that I loved the doctor. She was amazing with Grace and so attentive to all of my concerns. She asked a ton of questions not only about the accident but about other aspects of Grace's life. She asked a lot of questions about Grace's birth and she thinks there were some issues from her birth as well. When Grace was born almost 4 weeks early and she was in distress for the two hours before I delivered her. When she was delivered the umbilical cord was wrapped around her neck three times and her body once more. She was not doing very well and need help to breath. The respiratory team was called in and had to work on her for an hour. The doctor thought that this was a significant event as well. Between these two events as well as the breathing issues that came from having asthma that there is something going on in her brain. However she doesn't feel that it is a TBI. She thinks Grace has something called Acquired Brain Injury (ABI). I am not to sure how different this is from TBI, still have lots to figure out. One of our problems with Grace is that she gets what we call stuck on a topic and she can't focus on anything else for a long time. Usually a few hours. The doctor said that is very typical of an ABI. So now where do we go from here? The doctor has said that we need to have a Neuropsychological evaluation done on her. The testing will tell us where her strengths and her weaknesses are. Once we know all of this we can teach her to use her strengths to overcome her weaknesses. As with anything though it is going to take time to get the testing scheduled. That is my next mountain to climb.