Justin’s speech is 100% intelligible now. It’s not perfect but everything he says is understandable so that’s fantastic. We have breathing exercises he has to do at home along with pages upon pages of words for him to practice. Right now it’s more a matter of breathing at the correct times during sentences that he struggles with. His voice is sounding more like it used to and overall he’s doing so much better with his speech.

His vision is improving as well, his left eye moves too far while tracking so we’ve been working on that. It moves past the object he needs to look at so he has to look back to the right. He has vision charts to work on this at home. 

Occupational therapy did tests again this week to check his coordination and strength. There are measurable improvements in both areas. One of tests require him to pick up a single block and move it over a divider then drop it into the other side of the box, he went from picking up 8 with his left hand and 13 with his right, to being able to pickup and move 18 with his left and 22 with his right. Strength wise his right hand was initially at 108 pounds and his left was right at 100, this time his right was 109 pounds and his left was 140! His OT said now they will focus on strength in his right arm/hand and coordination in the left to try to equal them out. They have focused so much on the left hand/arm that the right is falling behind now. 

Physical Therapy is going great, we are working on ways to make walking at home easier for him and I both so we don’t need so many people to help him. Initially we had three people helping him, one on each side and one following with the wheelchair. Now he can walk with just me helping him and someone following with his wheelchair in case he needs to quickly sit down. Our biggest struggle is synching our foot steps so I’m not kicking his feet when I take a step behind him. I have to be right up against him with one arm around the front of him and the other on his back so my steps have to be perfect. It’s hard because his steps still aren’t “normal” steps so I have to continually watch where his foot is before moving mine ,while also watching in front of us. 

He’s been using the Lokomat (robot legs) once a week in Physical Therapy for an hour and it is helping. His steps and strides are exactly like they should be during this time. It helps the brain rewire the signals required for correct walking.

We had our first family meeting with all his therapists and the rehab day program nurse on August 25th. We decided to extend his therapy from September 16th through October 14th. Then we will take a few months off while he works on everything at home and go back again for regular outpatient therapy in January. He’ll go for a couple months then have a couple month break again and repeat. This will allow him to have the highest level of recovery. 

Tuesday he has his appointment to pick up his hearing aides. He’s pretty excited to hear better again. September 15th he has his sleep study, it was supposed to be in August but he was sick so we had to reschedule. His respiratory team at Madonna donated a CPAP to him so he had one right away but he still needed the sleep study so insurance would cover a new one and supplies. Later in September he has a follow up with his primary care doctor and will also have a follow up with his pulmonologist after the sleep study. We went to see his nephrologist in August; we drove clear to Lincoln for them to tell us she was out with covid and they had called all her patients, they apparently forgot to call us so that was slightly annoying. He goes in October now for his follow up with her. His follow up with his urologist went well, he has to have a CT every 6 months for 5-6 years to make sure the cancer doesn’t come back and check for new growths. This CT was clear so he doesn’t need to follow up with oncology at this time! 

Last Sunday we had a birthday party for Justin and I and my little brother as well. All three of our birthdays are pretty close together so everyone came out to our house and we had a barbecue and cake to celebrate. Birthdays seem to mean a little more after everything we’ve been through so far this year ❤️