If Bad News Occurred In An Uninhabited Forest, Could It Get Worse?

If no news is good news, what I wouldn't give to have no news for a change.

So we got back from our visit at Children's with Ophthamology and ENT. The Reader's Digest version: Ethan has severe astigmatism in his right eye due to the presence of the dermoid. Starting from around 2-3 years of age, he will need glasses and patching to correct this and prevent the onset of amblyopia (a word you do *not* want to hear). The good news is that his eyes and vision are otherwise fine. His left eye is perfectly fine. The right eye, apart from the astigmatism is fine. The ophthamologist says that the dermoid is unlikely to change moving forward and whatever damage it was going to do: it's already done. His opinion is that while this is not good news by any stretch of the imagination, it is 'typical' for children such as Ethan suffering from Cranialfacial Microsomia: it is typical for children with CFM to have dermoids of this size, it is typical for dermoids of this size to cause astigmatism, and it is typical for the astigmatism to be of this severity.

There is no need to take any corrective action until about 2-3 years as his vision is still developing and that any difficiency in visual acuity from the astigmatism is outweighed (and will be until about 2-3 years of age) by the normal difficiency in visual accuity that is due to his age (i.e. his vision won't be developed enough until age 2-3 for the astigmatism to be noticed). As a side note: if no corrective action were to be taken at all, amblyopia wouldn't set in until probably around age 5 or so, so it is not of any immediate concern (hence no action until age 2-3).

Ophthamology also believes that in light of the above, the dermoid removal is purely optional and cosmetic (if we left it in, it wouldn't make the astigmatism worse or cause any other problems, and if we remove it, it won't make the astigmatism go away). However, if we wish to have it excised, he recommends postponing it until at *least* one year of age if not later as the surgery is extremely difficult before one year of age. Moreover, it is currently impossible to judge the depth of the dermoid and as such, impossible to know how it will look after surgery: they cannot *completely* excise it - what they do is shave off the top. So this leaves some of the dermoid behind which means that there will still be some opacity in the region of where the dermoid currently resides. How opaque it will be depends on how much is left behind which depends on how thick the dermoid is (which they won't know until pre-op which is at least 8 months away currently). Regardless, he did say it would "look much better".

ENT didn't reveal much. There is some inflamation of the tissues above the vocal chords. This may be due to reflux, it may be due to the presence of the NG tube, or it may be due to a combination of both. This result is pretty much congruent with what we expected after coming out of last week's visit and recommendation of the ph probe. I suppose the good news here is that they didn't see anything out of the ordinary or abnormal.

We discussed the possibility of having his frenulum clipped to allow for more tongue movement (this has been OTPT's recommendation all along) and they (ENT) recommend to do it while under general anesthesia during his upcoming macrostomia repair (they felt that there might be some bleeding and hence couple of stitches may be required and hence it wouldn't be something to be done in clinic). They also recommended moving his (more comprehensive) hearing test up from 8 months or so to within the next 1-2 months.

We are still awaiting scheduling of the ph probe. We hope to have word on this within the next 24-48 hours. With the holidays upcoming, we expect it won't be scheduled until January.

We also have an upcoming (regular) appointment with CranialFacial in January.

-bob