Henry Update

Henry had three appointments in Rochester last Tuesday. One with ENT (ear, nose and throat), one with the Speech Pathology Dept at Strong Hospital and the last with Dr. Girotto, his cleft doctor.

The first appointment with ENT was to discuss placing tubes in Hank's ears immediately prior to his palate repair surgery in Feb/March (date unconfirmed, but that's the ballpark). This is a customary procedure and from what i've read, oftentimes, tubes have already been placed in cleft kids ears by now due to complications with ear infections and fluid buildup. Normal cleft children can have trouble with ear infections due to the physiology of the ear canal of babies - the canal is not fully developed and often runs horizontal instead of slightly angled as in adulthood. Surprisingly, and to my great relief, Henry has managed to keep very clear and healthy ear canals this whole time, which means little concern for hearing damage. WOO HOO! This consult was rather short and uneventful. The ENT surgeon will simply slip in between anesthesia and Dr. Girotto on surgery day and place the tubes in his ears. They will naturally fall out between 12-18 mos.

The second appointment was the biggest of the three. We met with the Speech Pathology dept at Strong to give Hank a "Swallow Test." This test sits Henry in a seat with an x-ray that runs along the side. He is given various foods with barium and his swallowing reflex is observed. The point is to see if Henry has the potential and danger of aspirating what he eats due to the cleft in his palate. Non-cleft challenged kids who have developmental delays and eating complications can also aspirate. Aspirating means that he could take his food into his lungs, which can be very dangerous, leading to pneumonia and sickness. The good news is that Henry DOES NOT aspirate. The "bad" news, to no one's surprise, is that he does not swallow easily or correctly due to his never eating by mouth. He does not know how to do it. While this is an instinct at birth for babies while nursing, if it is taken away early, the instinct can be lost. But not forever! And that is what we're working on. The final conclusion is that it is SAFE for us to begin 'tastes' with Henry. That means we literally dip the spoon into a jar of applesauce or into thickened formula (with rice cereal) and simply get his mouth and tongue used to something new. The act of putting the spoon into his mouth, the act of him tasting a food, EVERYTHING about eating in general. We are also going to work on getting him used to having (slightly thickened) liquid come into his mouth via cup. The concensus is to just bypass the bottle altogether due to his age and his aversion to it in the first place. I am in agreement with all of this and eager to work with my little guy to hopefully eat normally someday. The ULTIMATE GOAL, someday, sometime, is to get rid of the G-Tube. But this is not a race, by any means.

The final appointment was with Dr. Girotto to basically check in with him on my appointments' outcomes and to tentatively schedule and plan for Hank's palate repair. Originally Dr. G thought late January with a follow-up refined surgery for his lips a month or two later. Now he is thinking of a later date, Feb or March, for BOTH at the same time. That is, given anesthesia's approval that Henry can be under for that long (a total of about 5 hrs). If not, two separate surgeries.

OTHERWISE, Henry is doing quite well. He's always a touch congested, it seems, but nothing alarming or concerning. His PT and Speech therapies in the home, through Early Intervention, continue to go smoothly with little strides and advancements. Each therapy comes two times a week (i've heard that some children this age can only 'handle' once a week, but Hank is easy breezy). He is getting stronger in his Bumbo seat, which means he's only getting closer to sitting up on his own or possibly pushing up on his belly. When he has 'belly time' now, he does not use his arms at all, only his neck, and that is for only a little while. Henry occasionally rolls over from his back to his side, or vice-versa... those little legs of his are always kickin and moving. He creates quite the racket while chillin' in his bouncy seat - downright LOUD! We love it.

I've reminisced often lately of Henry's first four months of life, in and out of hospitals. How seemingly fragile he was, and so easily weakened and compromised. Flatlines and active talk of pacemakers. And now, i look at him, and think how much stronger he's gotten. He's gaining weight slowly (at slightly 15 lbs), but we recently upped the amount of food he gets throughout his day and I'm eager to see the results of this change.

.... And the smiling and laughing!!! All the time with smiles and his gravely, breathy giggles. There is truly nothing better than watching your kids giggle with abandon, not a care in the world, only being happy and enjoying it. Laugh it up, Hank... you've got the world in front of you for the taking. I can't wait to see all that you do. xoxo