A couple of weeks ago, Fergus, George, and I visited the Delta Gamma Center for vision assessment. The assessor, Jo, is fantastic and Gus loved her immediately. Each time she talked to him, he looked at her and smiled. The evaluation lasted for over 2 hours and at the end, Gus was responding faster to the visual stimulation. I asked her what he could see and she said told me what he likes to look at. He apparently doesn't have any areas of vision that are completely gone. He can see colors, not just black and white and shadows. He prefers shiny, noisy, moving objects. Mylar is one of his favorites. Jo kindly gave him a few things to take home and he loves all of them but his favorite is a blue Mylar balloon. His ability to respond to the balloon and to control his arms to get the balloon (not with his hand yet) has improved over the past few weeks and has really encouraged us. His response to other toys has been much slower.
The weekend that followed, we visited friends in Memphis. We had a great time and Gus seemed a little sleepy, but not much out of sorts. On the way home, Sunday night, we noticed he was more upset than usual and I assumed he was teething and a bit tired from visiting. Monday morning I noticed he had chicken pox. I was hoping he wouldn't get them until he was a few years older. George and Rose also contracted them but theirs lasted for just a few days. Gus got a really bad case. For the last 2 1/2 weeks it seemed as if Gus had slid back developmentally at least a few months: he 'postured' (uncontrollable tightening of the muscles throughout the entire body) just as he had done in the hospital, even had a day of 'storming' (where he gets really upset and can't calm down regardless of what we do), and was unable to sleep for the first week (except for small naps of 15-20 minutes every few hours). It was very overwhelming to see him like this again. We were a bit shaken. I felt like I was grasping in the dark and finding nothing to hold on to. This past weekend, after the chicken pox was officially over, improvements started to happen. God heard my prayers. Each day since then, Gus has done better and better, although he is still regressed from where he was before the chicken pox. His 'tone' (when the muscles tighten too much) is still a little too much and he sweats a lot (not from heat but lack of control from his brain). When happy, he has returned to smiling a lot, with extreme ticklishness and responding well to any praise.
Today we saw the doctor overseeing Gus' therapies. He reassured me that this is very normal behaviour and that in the next week, we should see many more improvements.
We didn't want to take any pictures while Gus was in the worst of the chicken pox so here's the latest of him:
Thanks to the generosity of my sister Mary, we have the ability to update now at home and we can now access email. Thank you for your continued support even through my lack of consistent updating. Your prayers and support are holding us up.
His muscles, since the chicken pox (and a huge growth spurt) have been harder for him to control so he fights everything a lot more, even if he doesn't want to fight it. We might need to increase some of the medicine that calms those muscles down so that he can have more control. Here are the latest pictures of him.
Please continue to pray for Gus. He has a hard time sleeping again and continues to lose control of his body temperature (sweats a lot, over heats, or gets really cold regardless of air temperature).
