We had a follow up appointment for Cole today with Dr. Jeffery. Reagan also had a new patient visit because she had questionable results on her vision exam at her 3 year appointment with the pediatrician in May.
Reagan's appointment went very well and she passed with flying colors! Only the mom of a baby with brain damage is excited when she hears, "Her optic nerves are bright pink and plump." We are very relieved to know that her eyesight is good and we don't need to bring her back for several years.
Dr. Jeffery was also very pleased with Cole's progress. She said he is using both eyes very well and she recommended we stop patching! This was a big surprise and we are very happy patching is behind us even if it is temporary. She wants to see us again in 6 months to check his progress. As with many appointments during the 3 year journey with our children, however, I then got kicked in the stomach. A blow I should have been prepared for, but wasn't.
I asked Dr. Jeffery to help me understand why Cole is running into things, walking off curbs and why he holds the iPad three inches from his face. She said we need to remember that he has a lot of issues with his eyes. Hopefully I will relay the explanation clearly...
Cole has two different problems - 1) he has structural issues with the eyes and 2) he has damage in the visual center of the brain. The shaking in his eyes (nystagmus) is the outward sign that the eyes and brain are having trouble communicating. If your eye is longer or shorter than what it should be, a corrective lens can change the refraction to adjust the image and ensure it lands on the retina. Thus, glasses adjust where the image lands after it is received and therefore help with the structural issue.
The reason Cole's issues are so complicated is because he also has brain damage from the brain bleed (IVH). This isn't new information, but I have to admit that I didn't fully understand the dynamics between the structural and neural connections until today. Cole can point out images in his environment, he is learning new words everyday and we have been so happy with his progress. He knows several of his alphabet letters, he knows almost all his shapes including hexagon, pentagon and trapezoid. So today was a sobering reminder that we have a very large hill in front of us.
Glasses will help the image get to the retina but once the image is sent to the optic nerve (which we know is damaged because it is a pale pink) the brain has trouble processing that image. Dr. Jeffery said Cole will probably never have better than 20/70 sight. She expects he will need special services at school to help him in the classroom - whether that means just sitting in the front row, bigger printed textbooks or possibly more significant support requirements. She said we probably won't know the true extent of his issues until he can start communicating with us (hopefully by his 3 yr birthday). The vision requirement to drive is 20/40. Whether his lenses will be able to get him to that minimum level is yet to be determined.
It is hard to share how it feels to be told your child may not be able to drive. Ask any parent who has a preteen how many times he asks how long until he gets his permit. You would think after everything we have been through that I wouldn't be surprised by this news. And that after thinking he may be blind, that just knowing he smiles when he sees me pick him up should be satisfying enough. So perhaps I'm looking a gift horse in the mouth....perhaps I'm counting my blessings and I should just be happy that I have any to count at all. But I can't imagine how not being able to drive changes everything in your life. How do you get to work? This controls where you can live to have public transportation. How do you take a girl on a date? Don't get me wrong - I know we are so blessed to have Cole to love and hold. Not a day goes by that I don't remind myself how lucky we are. But with every bit of progress we see I want more. I feel selfish wanting him to be ok but I know that is the dream every mom has. My heart is heavy tonight as we are reminded to be thankful for every bit of progress that Cole makes. This appointment has reinforced my interest in getting his Child Find assessment to learn what vision services are available. We have an appointment with Early Intervention next Tuesday and we will discuss it then. It is a lengthy process and he won't be able to start school until next Fall, but at least it helps his mom and dad feel like they are able to do something to help him. The feeling of helplessness came the day he was born and I couldn't hold him. The first day he was hungry and I couldn't feed him. And even though today I can hold him and feed him every day, that feeling of not being able to help him seems just as challenging...
You feel what you feel and there is nothing wrong with that! You are allowed to be frustrated, mad, sad, whatever. That doesn't mean you aren't grateful for your blessings. You haven't been canonized a saint yet, have you? Go ahead and be human!
ReplyDeleteSo happy to hear that Reagan's optic nerves looks good. And Cole has 14 years before you have to worry about him driving. Perhaps science and technology will have created some solutions by then. I am certainly not trying to dismiss your very real feelings and concerns. You have every right to dream big and do everything you can to make those wishes for your children come true. Never settle. Keep on fightin' girlfriend and I'll keep on prayin'!