Thursday, June 03, 2010

Hear Ye! Hear Ye!

Today we had our Feeding Team/Family review meeting to cover how the boys have been doing over the last two weeks. Given that they had a horrible virus they are eating remarkably well. Their consumption of solids and liquids is up and their compliance is doing dramatically better.

Cameron's compliance with the requests to take bites and sips of milk at 88%, meaning 88% of the time he will willingly open his mouth for a spoon of food or take a sip of a drink. He did lose weight from being sick though not as much as I thought he would, only about 100grams lost total. Now his primary goal will be volume of food consumed. He's demonstrated that he can eat up to 2oz of pureed solids from a spoon and 2oz of milk in one 30minute feeding session without complaint and with no problems.

Evan has gone from immeasurable quantities of food and liquid, and his compliance to requests to eat and drink was at 0 and since we've implemented the "hands down" procedure (where we offer food and if he puts his hands up to block we hold his hands down until he eats the food before giving him his reward). Now his compliance is at 93%, though we do often have to block his hands so that he can't push the food away before it gets to his mouth. Evan, who was the sicker of the two babies, actually gained weight at a rate of about 4grams per day. He has been able to show that he can consume as much as 2oz of milk and almost an ounce of solid purees, though it could be much more if he would stop nipping at just the front of the spoon and open his mouth more. Evan's new goals are also to increase his volume of food consumed by double what he has been willingly taking, as well as getting him to open his mouth more and biting on a crunchy solid food and possibly even chew it. This last goal of biting a crunchy food is a lofty one for now and by the psychologist's opinion will take a very long time for him to achieve, but we feel that he will do it.

If the boys continue on this path we are hoping that by mid July we might be able to cut back on the volume of formula the boys are fed through the feeding tube. We have to see a dramatic improvement though, roughly 4 to 6oz of solids consumed per day (per boy, of course).

During the meeting I asked about the additional speech services the boys are getting there three times a week. I said that I was very happy with how much more language both boys are using to communicate and babble. Cameron is especially talkative and repeats EVERYTHING he hears very well. But I'm particularly concerned with Evan. When he does say words he never ever says them loud, never enunciates any of the sounds. And while I know he can say the word in the correct way I wonder if he's actually hearing it like he should because he can't or won't say it even when I get down on his level and enunciate and try have him repeat it back to me. I'm also concerned that he doesn't always respond when we call his name and I'm not convinced that it's because he doesn't know who I'm talking to or that he's ignoring me, because I know he's looked up at me when I talk to him from a distance and will follow commands (sort of) when I ask him to do something. His pronunciation is not improving either, the word water is pronounced "Wa-er" but he can say words that start with the letter D just fine. My thought is that Evan hears but not well and so that may be part of the reason for his excessive delays with language and communication. I know I'm not supposed to compare the boys, but Cameron and Evan hear and see and do all of the exact same things from the exact same people. They are exposed to all the same opportunities, and Evan even gets more speech services than Cameron. So why isn't he saying more, saying it louder, and saying more words with better enunciation? I have also not worried about it much because he is talking more in general, which is common for kids in intensive feeding therapy programs. Since the hospital the feeding clinic is in is set up for everything possible they can do it for us in the middle of the day without interrupting therapy sessions, provided the doctor is available before we're discharged next week. I think they will only be testing Evan at this point. I don't think they will test Cameron because he's just a chatterbox and is really very observant and quick to pick up new words now. Hopefully they can do it tomorrow.