Katie Update

Quickie update. Talked briefly with her pediatrician who is convinced that this is nothing to worry about. Perfectly normal. Logical spot for screws to have been placed. If the areas seem to be getting more pronounced, I should call her surgeon on Monday. But even from last night to today, I can see that they’re a little less pronounced, so I’m not going to worry and let it ride for the moment.

However, I will be calling the neurosurgeon on Monday, anyway, because it dawned on me that I called a MONTH ago to schedule her follow up and they still haven’t called me back. GRRR.

Once we have that one scheduled, I have to schedule her pediatrician appointment and then her follow up eye appointment to check and see what’s going on with the strabismus that was identified last July. For a child who hates doctors with a fiery passion, she sure is going to see a lot of them.

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Katie’s Adventure — Trip #3

This was the big one. That’s what both the cranio-facial surgeon and the neurosurgeon said. This is the one that helps us figure out what we need to do and how we need to do it. Who is this miracle doctor? The pediatric Ophthalmologist, henceforward known as Dr. W.

First off, this visit was weird because is was supposed to take place eight days from now, but we received a call a week ago saying it needed to be rescheduled and could we do August 5th. Well, this is, supposedly, the visit that determines what surgery Katie needs so I was reluctant to wait that long. So, we found the first available appointment at any of Dr. W’s offices and took it. That appointment was for Tuesday. As in two days ago.

Now, I know quite a bit about ophthalmologists and what to expect in a normal exam. However, I’ve never witnessed an exam with someone who is pre-verbal. Let’s say it’s enlightening. This was the first visit where we did a lot of time in the waiting room. We also received a strong reality check. As dreadful and traumatic as this is, it is nothing compared to what some kids are going through. For example, the young boy, I’d estimate him at 4, maybe, who was on a vent and brought in by ambulance. Any time I wish for Ben to be a little less active, I’m going to picture that young boy and remember how very lucky we are that Ben is healthy and able to run around. I’m also going to remember that while what Katie is dealing with is traumatic for us — it’s fixable. It’s not going to determine a life course for her or change the choices we can make for her (or that she can make for herself). For that, I am profoundly grateful.

At any rate, long time in the waiting room. She needed a diaper change, so P took her. They had a changing station in the men’s room — big score. P gets very irritated at the number of places that don’t. And yes, I know, I have a keeper. While they were in there, Katie was called. When I approached, the tech called me Katie. I said, no, she’s getting a diaper change, she’ll be out with her daddy in just a minute. The tech checked her chart again and then said, wait, and disappeared. Turns out, she didn’t really Katie is 7 1/2 months old.

We waited another few minutes and then went back to an exam room. The tech did a quick tracking test with a light and then announced they were putting drops in her eyes. Poor kid. P was holding her, so he stretched her out and held her still. Drop one went in pretty easy, but then she was wise to them and screwed her eyes shut. They got the second eye done with Katie crying like her heart would break. She started pushing away from P and reaching for me, so I took her and quieted her down. Then we waited for twenty minutes for the drops to work.

We went back and it was determined that she needed a bit more dilation, which they did. We waited another few minutes and Dr. W came in. Finally, she explained to us WHY she is the go/no go person for Katie’s surgery. Her job is to determine how the optic nerve is developing. If it were abnormal or the channel that holds it was abnormal, then the surgery would have to be done in a different way. As she started the exam, she said she didn’t expect to find anything else because initial tests suggested that Katie’s sight was normal and that she tracked well.

The good news is that the nerve is healthy and normal and its channel is healthy and normal. So, from that angle, Katie is approved to go forward with her surgery.

Unfortunately, she discovered that Katie has a fairly significant astigmatism in her right eye. This doesn’t come as a surprise to us given that I have a significant astigmatism in my right eye. The thing is that in someone Katie’s age it is almost a guarantee for developing “lazy eye” or strabismus. She will want to see Katie in six months and determine a course of treatment. Absolute best case is that it clears up on its own, but given that she has a parent with astigmatism that seems unlikely. The more likely scenario seems to involve patches and glasses. Worst case scenario would be surgery on the eye itself. So, we have more things to consider and deal with as things continue.

The good news is that the surgery can proceed without any of the craziness that would have resulted if the nerves weren’t developing normally. I’m going to grab onto that with both hands.