2020 11 05

2020 11 05 Rehabilitation Day 14

545am morn medicine time view from Alexs window

Alex is in a rehabilitation facility. Every day we make the attempts to be more alert, a little more awake and a little stronger. Every morning our prayer is focused on making today a better day than yesterday.  Every day is focused on making our morning prayer come true.  Every day is a challenge and thus far no day has been easy. Every day is busy and within all of the business, every day we strive for at least one or two things that we can consider a success. 

It is heart breaking to see any child, who was once a firecracker, be laid out and so extremely frustrated with the inability to talk, sit, stand, walk, run nor ride a bicycle.

Alexs medications have not yet controlled his seizures and at this moment it appears as though this entire surgery and these last three months haven't done anything progressive.  

He is strong, he is here and the rest of us adjust his game plan hourly with hopes to get him up and running. Alex is on a lot of medications, requires therapist for speech, communication, moving his arms, moving his legs, etc.  At this moment Alex is out of the hospital environment and in a rehabilitation facility that could be fun while being extremely productive. Unfortunately he is extremely frustrated at everything and everyone. He wants to do the simple normal stuff that he once did but mentally and physically can not. His inability to communicate leads to his frustration.  

Last Thursday he was able to stand a few times a day, sit a little at a time, and that was all.

Today Friday he is taking about 20 steps with assistance, beating a drum every now and then and trying real hard to speak.  He has sat up in bed on his own and he has asked for "mario kart" and has whispered the word "chocolate" .

Currently the kid is fighting real hard.  He is tough, but these seizures, the medications, and his inability to move or communicate are kicking his ass.  The meds make him sleepy and aggravated etc.  He is often wiped out, aggravated or sleeping during scheduled sessions.  We have adjusted and continue to adjust feed schedules, medications and medication schedules etc.

We have a strong team of Neurologists, Neurosurgeons, Doctors, Attendings, Nurse Practitioners, Nurses, PT therapists, OT therapists, SLP therapists, etc.   We need to get these seizures under control so that little man can function and so that all of the therapists can succeed in getting Alex back to being Alex . Last week he was a bit happier than he is at the moment. Last weekend he took his first steps with assistance. Last weekend he mouthed a few words in song. Last weekend Alex smiled and showed a little happy. I pray to see a little happy Alex this weekend.

Monday we return to Boston Childrens for an mri that will tell if 2 infections are gone or under control. We pray for the good news of no more infections. When we get that good news, Alex may then come off of I.V. antibiotics, his I.V. lines can come out and he may feel a lot less constrained.

We seem to be in the right place for now. We have teams of professionals aligned and able to work with Alex when he is mentally physically and emotionally ready to cooperate.  It has been a long dark road behind us. He have a long hard road ahead but we see there is hope.