Snapshot of Life in Paterson, NJ

Today marks the end of week TWO for feeding "bootcamp". We are gently closing the door on yesterday and throwing away the key.  Although the list of things we are working on is quite long, we are trying to savor the good moments and not focus so much on the discouraging ones.  So far this week, the doctors and therapists here at St. Joseph's have changed the game plan slightly-they are an excellent team.  We started the week with a ratio of one dry spoon to every two spoons dipped in juice.  Happily, he did this without gagging or retching too badly. He is learning to swallow folks! We slowly added a little bit of pureed sweet potatoes (Next week I've requested pureed pizza and ice cream to entice the lil guy!) to the juice this past Wednesday and he is opening wide, sometimes closing down and sometimes even swallowing the food.  Do I still fantasize about him eating solids and table foods? Absolutely. But I know the reality is we will at least be getting LJ to swallow some purees by the time we come home. I know that he is going to persevere. The big wean from his g-tube will come some day- just not magically overnight. From that day on we will all live happily ever after!

The other big change has been the dosing of his meds in order to make his GI System more comfortable.  Instead of 15 mg prevacid for his severe reflux issues administered once in the morning and again before bedtime we are now giving him the full 30 mg Prevacid first thing in the morning.  The doctor also prescribed Cyproheptadine as a gastric motility (this helps move anything he eats through his GI track at a more typical rate) agent twice a day once before he naps and again at bedtime (he used to get Erythromycin about 7 or 8 months ago but he developed an allergy to it over time; Reglan is another drug they use but it is known to cause seizures so that is out). I had been under the impression that there weren't any other drugs to help LJ on this front...until now. Additionally, we have reduced the volume of his g-tube feeds to 160 cc's (they had reached up to 210 cc's each feeding) which means we now have to feed him 7 times a day to get him to the same place. Strangely, he lost 1 pound over the first week.  It was baffling everybody. Stress? I wish I'd lose weight that way because this hasn't been a picnic! But we think we've devised a new plan so he will get the extra calories he needs. And as of today he was almost back up (11 oz) to his starting weight.

And lastly we had a visit with a pediatric ENT here followed by a pediatric hearing test. I am sure I am going to have to battle insurance on this one since the hospital is "out of network" and had "only approved the Center for Pediatric Feeding and Swallowing". The key here though is pediatric audiology. The first hearing test was an OAE Tympanogram on Tuesday. LJ's Aunt Joanne and Uncle Jeff were here to keep us company that day. Boy was it nice to have family there to talk with. We also had company from my Aunt Jill on Wednesday. It is so validating and comforting to get fresh eyes looking at the progress being made here! (Thank you. Seeing LJ through your eyes has really helped reinforce my belief in Lewis.) We knew he would fail the OAE on his left ear because he has a lot of fluid for the test at home. But he failed the OAE on his right ear- the one without any fluid in it so another un-sedated BAER test was ordered for Thursday morning to get more insight. The second BAER test went soooooo v. smoothly. The equipment was newer technology than what was used in the past  & LJ slept through the entire test-electrodes and all. We were all finished in an hour. Nobody is sure why, luckily though the right ear passed the BAER so perhaps whatever it was has resolved itself. The left ear is still a problem.

We are still worried about LJ's hearing, though a lot more confident in our decision to go through with PE Tubes surgery. It would be great if we could take care of this here at St. Joe's. The only problem is wrangling with insurance. That and it would take away from his Feeding Program since he most likely would need recovery time. My motto this week: We're gonna laugh more and cry less...and that's for LJ too not just me:D

















"Eating is our earliest metaphor, preceding our conciousness of gender difference, race, nationality and religion. We eat before we talk."
              - Margaret Atwood

I will post a video later this weekend of one of the feeding therapy sessions from this week so that you can all applaud all LJ's efforts! We miss Nate terribly and can't wait to have a nice family weekend!