We did hear back from Columbia that Reagan is not a candidate for the NY program unfortunately. Apparently they include electrical stimulation as part of therapy (which we've done before) and they exclude children with epilepsy. I was disappointed to hear this, but at least it makes the decisions for us I guess. They recommended another program in NY but it includes constraint so I'm not sure we will consider it. We have also schedule her next EEG for April. This is a tough decision for us - as you may remember, there may be a point that we decide to try weaning her from the medication to see if she could be seizure free non-medicated. Unfortunately we don't expect to have a clean EEG that will help us know if that will be possible so it will be little bit of Russian roulette. We will repeat the test this year and see how the results look and go from there.
I'm still trying working with Cole on the contacts. Every week I let him hold the lens while I empty the solution and add new. We talk about how it feels and what it would be like on his eye. He's still not convinced he wants to try it so we're waiting for now. I'm starting to get nervous it will dry out but I also don't want to make another appointment and have him refuse it again. So it's just a matter of time and patience...neither of which I have in extra supply.
We did have an amendment meeting for Cole's IEP. The school decided he needs a little more support in the classroom to complete his work so they added more time. They also modified his goals slightly. We had a goal for self advocacy and they think he's doing GREAT at this so we've removed it. That's great to hear! We also got the results of the Assistive Technology Evaluation. This evaluation looks at how he is using technology and what accommodations may be necessary. It outlined several recommendations including 1) a simplified login, 2) differentiated icon shortcuts, 3) magnification software, and 4) modified positioning at the computer (foot rest/chair for better alignment of the monitor and mouse). Although I'm happy these accommodations are being made, I guess I was hoping for some big revelation from the evaluation and we didn't get that so I'm a little disappointed. I'm sure it was in my own mind. I find there are many times on this journey that I've expected black and white and the world is nothing but grey. Like Reagan's EEG - I expected it would tell us if she's having seizures. If she is, we keep the meds. If she's not, keep the meds. Black and white. But "spikes" don't always mean seizures. One font type, one font size, on white, on pink, above, or below. He can see the crucifix hanging above the alter when we sit in the front pew but not the priest. I wish for one day I could see through his eyes so I felt like I was advocating for what he needed.
It was also suggested in the IEP meeting that Cole have a Functional Vision Assessment. This will determine how to present information to optimize what he can see. For example, what font size is best based on things like background color etcetera. It will also determine if they think we should consider braille. Based on feedback from the Developmental Pediatrician, I reached out to the Department of the Blind and they have agreed to participate in this evaluation with his Teacher of the Visually Impaired. It will be done next week so I'm hopeful we will have results in the next month. I will be very curious to see what they say.
And to end on a fun note, two pictures from our fun trip to Great Wolf Lodge! A friend and I decided for the teacher work days to take the kids for one night. They had an absolute blast. Reagan is now tall enough to do all the rides and she did! Cole did all the rides except the Tornado which he just wasn't tall enough for. And let me tell you - I screamed all the way down! It was perfect for Reagan and Hailey to do rides together and Cole and Brayden could do rides together. We definitely want to go back again soon!
