Good News and Some "Oh Boy, What's Next" News

It was a week of appointments, some good news and some "oh boy, what's next" news. Jake's first appointment this week was on Monday with a Developmental Ophthalmologist. We knew that he has some left side neglect from the initial aneurysm which included his vision, but we noticed a few things lately that lead us to believe it might be a bigger issue than we thought. It was the first time Jake had ever been to an eye doctor and I could tell he was getting a little unsettled with all the different tests being done. Long story short, we were told Jake has left sided visual field loss in both of his eyes which basically means he is not seeing out of the left half of each both eye. What's good is that he is seeing 20/20 with the vision he has. The doctor said since the vision hadn't come back in six months post injury, it's very unlikely that it will and that it will be permanent. The doctor is referring us to a Rehab Ophthalmologist specialist who works with a lot of brain injury/stroke patients to see if there is any kind of rehab/therapy that can be done to help him compensate. Jake's already started doing some of this on his own out of instinct. Not really the news we were hoping for, but now that we know, we can get him the therapy/help he needs. I did a little research after hearing Jake's diagnosis and found there are several different visual problems that can arise from brain injury and stroke. Three are more impairing than the rest....visual field loss (what Jake has), double vision, and visual/balance disorders. As odd as it sounds, I feel Jake is lucky getting the one he did. 

Then on Tuesday, Jake had his six month post surgery MRI. The only other MRI he had taken was only about 10 minute, so I wasn't prepared for the hour plus he spent in the MRI machine. They wanted to take a thorough set of images both with contrast and without. He was a trooper. I have to admit, I was about to climb out of my skin sitting in that room with all the clicking just holding his hand, I don't know how he stayed calm and still that long. After we were done, we went over to the stroke clinic for his three month post discharge appointment. They had reviewed the scans and said his brain looked good which was great news. They also feel his recovery is coming along really well. We won't have to see them again until May which was also good news. 

While we were there I mentioned what we found out at the Ophthalmologist and was surprised at the strong level of disagreement with the diagnosis. In their experience, they have seen some vision come back after six months and they think the visual issues are just general left sided neglect that will improve over time. They asked that we see one of the Ophthalmologist at Children's instead of the specialist we were referred to since they are more experienced with vision loss in kids. Quite an emotional roller coaster in two days time concerning Jake's vision. While Todd and I are hopeful based on what the stroke clinic said, we are going to wait until we get a second opinion before discounting what we were told Monday.