4-18-2018. 09:00

Good morning all,

We are into our spring session down at Kennedy Krieger.  So far it has been a trying two days. On our first day, Monday, we sat on I-83 for 25 minutes as there were trees down right before the Shrewsberry exit.  Luckily we allow 1/2 hour for traveling difficulties each day.  We got down to Kennedy just in time and Brian had his latest evaluation with his OT.  She found that his left shoulder and elbow movements were weaker.  His e-stim response was stronger though.  On the Amadeo machine, which measures finger extension and flexion, he had increases with intersecting areas.  In the afternoon, he had his PT evaluation.  His PT found he had ankle proprioception on both sides with 100% correct tries.  She was able to feel twitches in his left hip flexor.  His side to side reach was a little decreased.  She is going to work on improving this with his arms in his lap, which is more difficult.

Brian has been having sporadic abdominal pain for the last several months.  He has also not been sleeping well as the controller on his turning mattress was not turning him in a complete cycle.  We got a new controller two weeks ago so I hope that helps to get his sleeping patterns back in sync.  He says his pain feels like he has done a vigorous abdominal workout.  I wonder if he is getting more internal feeling back that he can now notice the pain.

Brian saw his doctor yesterday before his afternoon PT session.  She thought that Brian looked very tired and was concerned. She ordered some lab tests as well as an abdominal x-ray which were all within normal limits.  Today we are taking him for an abdominal ultra sound.  His doctor also wants sleep studies and another MRI of his neck done.  She is trying to find why he appears so fatigued. I think it might be that he just was not getting good rest through the night because of his mattress.  I hope that is all it is, and now that the mattress is fixed, he will get some rest.  I told his doctor this was good evidence for the insurance company as to why he needed the turning mattress.  Steve does a good job of trying to keep Brian on schedule.  We watch his health very carefully, so we do not need malfunctions in his equipment to negate our efforts.

Steve has also been having trouble with his right knee.  He saw the orthopedist two weeks ago and had 45 ml of fluid removed from the joint.  He has been walking faithfully using a crutch.  For those of you who know him, this is difficult for him to admit that he needs it.  That is the best indicator that he is having some serious pain.  He sees his doctor again today.  His doctor thinks he may have torn his meniscus. If so, he may have to have surgery.

Please keep our family in prayer as we hit a bumpy patch in our journey.   Pray today that Brian’s test results continue to be within normal limits and that he can get some much needed rest.  Please pray that his body continues to heal.  Also, please pray that Steve also will heal, and can continue to give Brian the care he needs.

Love,

Dawn