Kai and i spent a few days in Boston again this week. Tuesday was our first appointment at Perkins School for the blind and of course wednesday was chemo. We spent tuesday night at Ashley and Joes (thanks for always being there for us!) so we didnt have to drive in and out twice.
Our appointment at Perkins was great. Linda, Kais visual aid that comes to the house, met us for the appointment. We were there for Kai’s first visual field test.
He is seen by opthomolgy at CHB every 6 weeks, but they do not do a visual field so this was somthing new. The test pretty much confirmed what we allready knew, Kai has low vision. His right eye is worse, but he has loss in both eyes. I have felt his right eye has been getting worse but since this was his first visual field test they could not confirm that.
Dr. Mayer had me put on a pair of glasses that were tapped off to show me what she thinks Kai sees. It was a lot of loss, but it was also what i had suspected, so i really appreciated being able to see that.
We also talked about Kai’ weakness on the right side of his body and Dr. Mayer feels part of it is neglect due to the vission loss. She was confident that the neglect can be corrected with therapy!
We talked a lot this week about the therapy services Kai is getting and we are all in agreement that we need to add more therapy time for him. We will be meeting with PT through early intervention next week and Linda, will be coming more often as well. I am looking forward to learning more ways i can help him learn and grow.
Our day at the clinic this week was a long one. Kai was due for his monthly dose of antibiotics which adds just over an hour to our day. We also discovered his ear infection is coming back so he got another dose of IV antibiotics for that and we will continue with antibiotics at home for the next 10 days.
He also gets pre-medicated with benadryl before his monthly antibiotic so he was really groggy all day. Poor kid had LOTS of meds running through his veins.
He delt with it all very well but this morning he woke up at 4 and vomited. He has really eaten much and vomited again this afternoon. Thursdays have been getting worse and worse lately. Hopefully he will be feeling a little better by tomorrow.