Follow up with Dr. Ellis yesterday.
Elliot's esotropia (a form of strabismus) has worsened since last week's visit. This tendency of one eye to act independently, causing his brain to discount the input from the wandering eye rendering it useless over time has been an issue for a few years...we tried glasses, then surgery (for that issue as well as another), and it seems that something has changed.
We've noticed increased wandering in the eye over the last month.
It's this recent change over a short period as observed by his opthamologist that has me wondering-
1. Is this related to the Hep A vax Elliot had for the Honduras trip? Other CMV moms have reported changes in their children's health post-vax (seizures). This has never been our experience. Nor do most children get Hep A vax, it's a precautionary measure for the trip.
2. Is this related to a flare up of the CMV? Elliot slept terribly last night, threw up his sushi after dinner, and is not at his best right now. Is the same reactivation of CMV that is causing the vomiting also causing other parts of his body to react differently? Is it possible that this change in his eye sight is a temporary weakness (like the one we've always noticed when he's tired)?
And so, we're back to getting glasses. Elliot is at risk for losing his eyesight, which I think was always the case. But I'm feeling angry, and tired about this right now. And quite guilty.
Should I have researched Hep A/vax in greater detail with the CMV community and made a different choice? I feel the burden of being the family researcher, and I'm not very consistent about it. Kevin will never do this kind of thing, something that I both love and hate. Last night, struggling with my feelings, I thought, Might it be my fault that Elliot loses his eyes? Fuck. I feel a tremendous amount of responsibility, and like most of this, we'll never know what's causing the change in his eyes, so I'll add this to my guilt cocktail.
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4 comments:
Oh Emmy, I'm so sorry. It is a huge burden you carry--not Elliot, of course, but the choices you have to make on his behalf. If you do no research then you'll feel guilty for being "irresponsible," and if you continue to search dilligently for answers and guidance then you will always, necessarily, doubt your choices in the face of obstacles or setbacks. But what can you do except make the most informed choice you can? If you spend all of your parenting energy on researching options for Elliot's care, you will rob yourself and him of what both of you really need--to enjoy the heck of out each other. You are such a wonderful mother. You're my idol, honestly. Elliot and Ana and Oliver are so, so, so lucky.
I am sorry you're struggling with al of these feelings.
love you.
Add me to the love train....You are my Mommy Sensei, and like any good mom, you question your decisions. Please don't question this one, because you did the natural, most protective thing by vaccinating him. Imagine if you hadn't, but had vaccinated Ana, you would be worried during the trip, and would be questioning that decision. His little eyes have always been sensitive, and he was already having a few increased health challenges (excessive vomiting, etc.) so try not to connect the two. (Even though it's hard not too) One look at Elliot's smile and I KNOW he will be fine. You did the right thing by vacc. him, and you're doing the right thing by treating concerns as they come along, as well as taking a few precautionary measures for those beautiful bright eyes!
Ditto on all of the above and I saw Holly's comment on FB abotu the vaccine. Hopefully, that's enough reassurance for you to scratch that vaccination shot off your guilty list. While you're at it, scratch about 95% of the items on there off, b/c I think we are all way to hard on ourselves sometimes.
The reality is you & Kevin are the best thing for Elliot. So, no matter where his health challenges fall, he's best off with you and your love & joy.
Hoping your family vacation is warm and wonderful and gives you the break you deserve.
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