Patches

Well, we are patching Big Al's good eye again. For now.

No one can tell us what kind of vision Allan has or will have in his left eye. We really haven't done a whole lot of patching of his good eye since shortly after his surgery because, well, because it is really, really hard to keep a patch on his eye. He doesn't like it. It irritates him and he pulls it off. And all he really has is time, energy and opportunity.

So we end up getting referred through the system to yet another ophthamologist who is going to make his recommendations about patching. Fine. Unfortunately for him, Momma was full of energy. The appointment was first thing Monday morning and we had all had a good night's sleep.

First of all, we march in and are told to take a seat. Nope. Not going to do it. Put us in a room. Nasty filthy sniffling dirty people are in the waiting room and we are not going to contract Ebola waiting for the eye doctor.

Then we have the assistant who comes in to take the history. Why don't you consult the eight three-ring binders at the hospital? Or, perhaps, the three inch folder that I know you have just right here at the eye clinic. Then we spend a fair amount of time pestering Allan trying to do some sort of gross evaluation of his eyes. And trying to get the iris that has been stretched to contract. I'm pretty sure it isn't going to, but give it your best shot, sport.

Finally, Dr. H comes in. Very nice guy in a retro forest green corduroy blazer. He pesters Allan for a bit. Then decides that pestering me will be more effective.

Dr. H: Are you patching?

Me: (Only in my head: Well, if you check any of the file notes, you will see that the answer is 'no') No.

(Disapproving Look.) (Him, not me.)

Dr. H: Well, it is important to establish the neural pathways by forcing him to use that eye.

Me: Um-hm. Well, the patches don't work because he rips them off. Do you have any suggestions for what we can do to keep him from tearing them off? Reasoning doesn't seem to work. (In a pleasant and inquisitive tone, I swear to God.)

Dr. H: What have you tried?

Me: Well, the patches and extra tape, but it really doesn't work. He just pulls them off.

Dr. H: Have you trying splinting? There are splints that keep children from being able to reach up and pull patches off.

Me: (Disapproving Look. Actually, Look of Are You Batshit Crazy??????) No. No. We haven't tried that and I am not going to. Please explain to me what actual, concrete benefit this child is going to receive from patching. Can you tell me that his vision will improve at all? Incrementally? Considerably? Do you have any idea at all?

Dr. H: Ummmm ... it really has to be done prior to his turning six or the good eye will have taken over entirely. It is only for 2 hours a day.

Me: (In my head: Move to strike as nonresponsive. You have no effing clue as to whether there will be any improvement.) Two hours is about 20 percent of Allan's waking hours. And you can not tell me what, if any, benefit will result, is that correct?

Dr. H: Oh.

Me: On a gross motor level, Allan is at about 12 month level. He is learning to pull up, cruise. He is finally figuring out why he would want to crawl. And you want me to cut, by twenty percent, the time that he has to do that?

(Silence.)

Me: How will we know if patching is helping at all?

Dr. H: Well, as he tolerates the patch more, you will know that the vision has improved.

Me: Or that he has just decided that it isn't worth fighting anymore?

Dr. H: (Silence.) Maybe. I realize it is easy for us to say what you should do and much harder to actually implement it.

Amen. Amen.


(End of scene.)

Please do not get me wrong: Dr. H seems like a nice enough sort of guy. They all do. And every one seems to have the right idea: doing the best they can by Big Al.. Still and all, it is incredibly frustrating to be the nonexperts and yet Jay and I have to be the ones to balance all of this advice. If we did every thing every doctor and therapist recommended, Allan would never have time to be a baby. Which he is. A lively, sweet, beautiful, most excellent baby. He isn't a medical condition. He is Allan.

So -- we have taken to patching again while he is eating. At least part of the time. We have to balance: if his eye isn't ever going to have any significant vision, then why slow him down on crawling and standing and developing those skills?

And, on that note, Allan is doing great. He is really putting it together these days: he can totally see why he needs to roll over and pull up and he spends a lot of time crawling. Backwards, but crawling none-the-less. Miss Julie thinks that the next 2-4 weeks will be a big watershed for Allan and that he will be walking (or cruising) all over the place.

We can't imagine a better Christmas gift.