Oct 31 - Inner Ear MRI

Second time under general anesthesia within barely a week. The procedure was scheduled for 9:00am.

Oct 27 - More Labs

Both CBC and LFT. Aren't there enough needles in Max' life already?

Oct 24 - Hearing Aid Fitting

Today had two appointments. The first with Dr. S, his infectious disease physician.

Second, he went to the Callier Center to be fitted for hearing aids. The technician took molds of both of his ear. Although most likely zero on a pain scale, he did not like the procedure, not one little bit.

Oct 23 - Retinal Scan at Hospital

Oct 21 - Speech Therapy

Speech therapy with Dr. B.

Oct 15 - Vitreoretinal Followup

Today was the followup for Max' Vitreoretinal specialist Dr. C. We have scheduled his retinal scan procedure at the hospital for next Thursday.

Oct 14 - Two Appointments

The first appointment today was with Dr. A, Max' GI physician. The follow up for the G-button surgery went well. Everything looks good from a GI perspective. Max' weight and head size are progressing normally.

The second appointment wasn't as easy. Max got the first in a series of injections to prevent RSV, a rather nasty lung infection that can be quite serious for infants with pre-existing pulmonary issues. Because of the expense (>$2000 per injection), the series of shots must be approved by insurance first, and is only approved for those babies at high risk. This shot must also be given in deep muscle tissue in the thigh; another unpleasant procedure for both Max and parents.

Oct 8 - CMV Retinitis Specialist

Today Max saw Dr. C. The exam was more traumatic than I'd anticipated for an eye exam. It involved placing Max in a straitjacket-like garment to limit his movement and holding his eyes open with a metal wire device. It reminded of the scene from Clockwork Orange. Needless to say, the screams that Max produced were quite difficult to endure.

The verdict is that we need Max to have a full retinal scan for a definitive diagnosis. This procedure must be done in a hospital under general anesthesia.

Oct 7 - Ophthalmologist Appointment

Today was Max' appointment with his pediatric ophthalmologist from the NICU. Originally Dr. L had given Max a clean pass on his eyes back in late spring while he was still in critical condition. At that time, the prognosis was that it would be highly unlikely for any further ophthalmological issue to develop since he made it to that point unscathed.

Unfortunately, today he detected scarring on both of Max' retinae. Dr. L was unsure of the significance or diagnosis, so referred us to someone who specializes in CMV Retinitis. If the damage is being caused by an active viral outbreak, then there may be a real risk to vision which is time sensitive.

Even though the specialist is very busy, she fit us into the schedule for tomorrow!! That's both good and bad news. Good, because it's a time-sensitive issue and we're getting in right away. Bad, because it's usually not a good sign when a specialist clears time in their busy schedule to see you.

Oct 2 - Ophthalmologist Appointment

Melanie has been concerned about Max' eyes twitching and a potential issue with nystagmus and a neurological problem. She set up an appointment with his pediatric ophthalmologist that he hadn't seen since the NICU.