We woke up in time to get to our appointment with Dr. Hertle at 8:45am. We needed to wipe down our room, vacuum, put all the sheets and towels in the laundry and remove all trash. We let Cole sleep until the last minute, made our donation for the accommodations, packed the car and headed to our appointment. Luckily there was virtually no wait once we arrived in the office. He wore a pair of sun glasses they gave him the previous day since he pupils would remain dilated for several days. As soon as he walks outside he stops and covers his eyes - it is very painful for him. Since he was able to open his eyes the nurse ran through simple tests having him look at letters on the screen again. Although it was much harder than on the day of testing, he was able to answer with about the same size letters. You could tell he got discouraged, but he worked really hard at trying to answer her questions.
Next Dr. Hertle came in and immediately engaged Cole and asked how he was doing. He showed Cole an app on his phone to gauge the shaking in his eyes and the head tilt. He said he sees a lot less shaking but there was still some head tilt. He also said that he did 10 surgeries this week and statistically 1-2 of those will not be successful and may need to be repeated. Unfortunately we may not know this until we have a follow up appointment with him and complete the testing again. We may get some inkling if we don't see any decrease in the shaking, but he is hopeful that we will. He has asked that we return for a visit in 2-6 months. He said to expect the redness to continue for 6-8 weeks but the irritation should lessen significantly by the end of the weekend. Cole is doing a great job telling everyone he meets that he had eye surgery...which is good, because the whites of his eyes are completely red right now. It really takes you off guard when you look at him and you have to double take. I love that he feels comfortable enough to talk about it though because it will help him when he returns to school on Monday.
In addition to repeat testing, he has recommended the contacts for the reasons mentioned in yesterday's post. He wrote a new prescription and suggested we get it filled immediately. We have a regularly scheduled follow up with Cole's regular ophthalmologist on Monday so it's perfect timing. He would also like us to consider giving him Baclofin. He said we should wait 6-8 weeks so that we can get a clear idea of what progress we see with only surgery, but then adding the medication later. He is about to publish an article that studies the progress of 85 patients after a combination of 1) surgery, 2) contacts, and 3) Baclofin. I've spoken with several patients with Nystagmus through a Facebook group who have chosen a combination of these so it is very interesting to learn this new information. Our currently plan is to talk with Cole's ophthalmologist Monday and see if she concurs with these suggestions. We plan to schedule a follow up appointment with Dr. Hertle in November or December and wait to consider medication until after that appointment and retesting. Overall the appointment was very positive and he really gave us a lot of hope for with regards to Cole's long term prognosis. He said that it isn't out of the realm of possibility that he may drive a car one day and he also said he sees no reason for Cole to learn Braille. He said there is no harm in doing so, but that he expects him to be able to learn without it.
After our appointment we made a quick stop for breakfast since we let Cole sleep until just before his appointment then headed back to VA. He was doing very well and we continued to give medication throughout the drive. We had him all snuggled up in his blanket so he could rest. We did stop for lunch and although he ate, he seems to get tired easily. We headed to pick up Reagan from Nana and Pop's house in Leesburg and she was sad to leave. She told us all about her visit there and showed us "her" room. We were so blessed to have them watch her so she didn't have to miss school and so that we could focus on what Cole needed. We headed home, unpacked, and went to pick up Shelby (our dog). The kids were super excited to see her. So thankful our dog trainer and her Weimaraner kept her this week. She has been wiped out since she got home! Needless to say, we had a quick dinner, showers and the kids were in bed.
I will post an update after we meet with the ophthalmologist Monday. I also created a short "before" video to try to capture the shaking and plan to take an "after" video so we can see the difference. I will try posting those once he has healed enough to get a good video. Thanks again to everyone for their prayers! We feel very blessed that surgery went smoothly and we are seeing some improvement already!As I close my post from this week I feel compelled to share feelings from last night that I struggled to express then. Hopefully I can express them now in a way that is understood by all and sensitive enough for those who can related. When we told Cole he was having surgery to help him see better he said, "I see just fine." My purpose for this blog is not only for family and friends, it is for my children as they get older and for others who may travel this journey to feel less alone....less lost. As I lay in bed with Cole last night I couldn't tell when he was awake or asleep because he didn't open his eyes. He would lay still then all of a sudden say something when I thought he was sleeping. He had no sight so he couldn't be entertained with TV or with his iPad. We tried listening to the movie Cars, but it didn't hold his attention very long without the visuals. I asked if he wanted to listen to music and he said no. He listened as Johnny and I conversed asking many clarifying questions because he had no visual cues. "Johnny, can you pass me another one." Cole, "another what?"
Cole asked his dad to get him a Robin toy and dad came back with Batman too. As I opened the package he asked which was which because he had no sight. I ran his fingers over Robin's boots, over Batman's pointy ears and over the buttons down Robin's shirt. I was so intrigued by the difference in my relationship with him by not having sight. It completely changed our conversations. In no way can I say that I understand the perspective of a blind child's parent, but for a very short period of time, I realized how drastically different that parent must be to help their child experience life. I catch myself pointing out sunsets or birds to Reagan and cringe when I realize Cole cannot share in these experiences. Dolphins, boats, and rainbows. I will ask if he can see something and he will say yes as he is looking out the wrong window. I often wonder if he is embarrassed he can't see it? Is he worried I will be disappointed? Obviously I wouldn't be but I find myself torn - do I avoid pointing things out that are so beautiful to prevent these feelings? I share this tonight because I think it creates perspective for all of us. And it makes me realize that instead of avoiding it, I should explain it in a way he can understand - as a parent would for a child who is blind. Do we all do enough to describe the world to our children? Authors do this all the time. That is what makes a good book hard to put down - when you FEEL what the character feels or SEE what the character sees. Last night made me realize we really should do this with everything in life. It is just one more reminder that every experience brings new perspective....
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