Week Six Lucas Gene Therapy

4/18/21 Sunday - Practiced Soccer in a nearby parking lot!

4/19/21 Monday - Remote Video Capture

Worked on filming some of the skills I need to film as part of the study. I have an app that they supplied me with that I’m required to stay on top of. The first round of videos was due this week. I filmed his eye movement, sitting, standing, walking, communicating and extra skills.

4/20/21 Tuesday 

We visited the river walk and saw two snakes, about 20 turtles, butterflies, a few geese, ducks and 4 deer all during that single walk! 

Hard to see since I am zoomed in, but tons of cute turtles

4/21/21 Wednesday - Blood Work

Went to St. Peter's for blood work today. We were there for four hours because the first time they took the blood, most of it clotted right away, so most of it wasn't a good sample. Then we tried again with a finger stick to get the rest of the blood we needed. I was glad that was the only thing we needed to do at the hospital this week!

4/23/2021 Friday - Parking Lot

This afternoon we went over to a nearby church parking lot to draw with chalk. Lucas was much more interested in just exploring the environment. He collected rocks, sticks, bark pieces, pulled weeds, put the chalk in and out of the stroller and just walked around. We literally stayed there for an hour and 40 minutes and he was as happy as can be! It was wild! (I was a bit bored, but realized that it is super calming to do nothing but stare at sticks and rocks for hours)

New skill: While we were there we walked over to a line of trees and I said “Tree” and then he said “Tree!” (Tee) something kind of like tree. 

4/24/2021 Saturday - Lake Papaianni

Nice quiet day again - went to a lake this afternoon that wasn’t too far away. It had a nice walking path and we saw a boy scout catch a fish! It was very exciting. :)  The New Jersey Transit train went running nearby multiple times while we were there. 

I am enthralled with how into rocks, sticks and little things Lucas is. He stares intently at the ground, scanning until he finds something he likes, picks it up, holds it in his little fist for a while, continues collecting until both hands are full, until he finds the next shiny rock, bright leaf or acorn and the process starts all over again. 

New Word: Lovie (Yuvie - something like that) Stick - tried to say stick today :) Has also been working on saying Laya (yaya or something)

4/25/2021 Sunday

Lucas took two good naps today because he stayed up later than usual last night. He's staying up a little later again tonight because of the extra nap, so we’ll see what happens. :) 

During Lucas’ nap I watched a nice video on the Church of Jesus Christ YouTube channel that inspired me to write a new song - so I worked on that for a little while today. Very fun for me. 

New Skills: Lucas tried a new word today: Duck. He also successfully stepped down from the sidewalk curb. He was practicing that skill today.

It was nice to have an uneventful week! Only one more week before we get to go home!!! I think Lucas has adapted to living here and just thinks we live in a hotel room now. ha ha