We made the trip back down to Florida for the month for another round of hyperbaric oxygen and neurofeedback. It has been an adventure so far, to say the least. 

Once again, luke was in an accident after an evening of fishing. Thankfully everyone was ok but it may have taken a couple of years off of my life. Our wheel chair van is less ok and not drivable. We are waiting to hear how long it will take to get it fixed as we can’t drive home to rochester until we have it back! Thankfully insurance should cover it. Guess if we have have to be stuck anywhere, Florida is not the worst place to be stuck during the winter. Luke continues to have a sense of humor about it all. He seems to think that it’s hilarious that we were sitting still at a stop sign, minding our own business, and hit out of no where. We also were able to meet some very kind firefighters and paramedics who went above and beyond to try to get us (and Luke’s wheel chair)

home after the accident and did a lot to shield Luke and mackenna from the chaos of an accident scene at rush hour in south Florida! 

Luke hasn’t been feeling great for a few weeks which has been a little more challenging to deal with since we are away from home and all of his normal health care providers. He’s been dealing with an upper respiratory infection which is tough for him- coughing is a challenge for Luke. He was re started on another seizure medication due to breakthrough seizures. It was a med that he has been on before but since restarting it he is pretty out of it. Definitely not as alert as he was. I am struggling between wanting seizure control and wanting Luke to be as alert as he can be. 

On to the good things! Luke had a brain map (quantitative eeg) when he got down here, to compare his brain activity to March of last year. There was significant improvement! Luke’s brain activity is not normal by any means and there is extensive brain damage but all areas of his brain look better than before and there are small areas that have normal activity now. The neuropsychologist was so excited that he wants to write Luke up as a case report to show the significant changes that have occurred since we started Luke on these treatments.

 I have had mixed emotions since I saw his brain map results. On one hand, it is amazing that more than 2 years after the injury, Luke’s brain is still healing and changing. It also means that all of the things we have been doing are helping! On the other hand, changes in a test result are great, but what does that really mean for Luke since we haven’t seen big functional changes so far? We are hoping that luke will start to have some functional improvements that will reflect the brain map. His doctors says that it can take many months to a year to see clinical changes after the brain activity improves. The brain map did show that Luke likely has high anxiety now which is probably due to his increasing awareness of his “condition”. My biggest fear is that Luke will improve just enough to be aware of his limitations and be distressed, but not improve enough to ever functionally do anything for himself again. I hate that he probably feels anxious and distressed but can’t verbalize it or tell me what bothers him. I want so badly to give him some independence and control.

Another positive - Luke has been able to get in with a pediatric physical therapy office here that is amazing!! They are such a blessing and it makes me want to move to Florida just so he can work with these talented individuals regularly. They have started working with Luke using whole body vibration which has been shown to reduce spasticity in kids with brain injuries, build healthy bone (which Luke really needs!), and improve head and trunk support. I have searched rochester for this equipment and have yet to find it available (if anyone knows of a pediatric therapy facility using the Galileo vibration plate let me know!) so we were thrilled to be able to try it with Luke. He has responded well to it so far and today was able to hold his head by himself for almost a minute while sitting on the vibration plate! These therapists have been so good at looking at what Luke CAN do, and working on ways to build on it versus focusing on what he can’t do. 

We hope everyone is well and appreciate all of the support!