Ben is now 14 months old, and has been doing well overall. Now that the older two have not been at school, he hasn’t had so much as a cold recently.
He is still completely tube fed. He gets 4 bolus feeds during the day of about 3 ounces each (he doesn’t tolerate larger volumes very well), and is fed continuously overnight as well. We are still transitioning him from infant formula to Nutren Jr (a pediatric formula), and right now it’s at a 60/40 mix. Our pediatrician has basically said that we can handle the transition ourselves, since we can tell what Ben will tolerate. He is definitely gaining weight. His MIC-KEY button is getting a little snug, and I think we will need to visit the surgeon’s office to have the nurse fit him with a slightly longer button. We have had no problems with granulation tissue or leakage for months.
The transition to oral feeds has hit a snag – about a month ago, Ben suddenly became very resistant to having ANYTHING in his mouth. Our occupational therapist advised us to back off for awhile. She noticed that when we started with him with some infant massage while lying on the floor, he was less resistant to having things put in his mouth. So that’s what we’ve been doing, and so far we have been seeing some definite signs of progress. Now he tolerates fingers and small amounts of food in his mouth, but not the spoon yet. I guess we will have to keep working with him and be patient.
Now that he can roll from side to side and wiggle around, he has been more eager to be on the floor, even during his feeds. Sometimes we find him all wrapped up in his tubing! His Nissen is holding up well – he shows no sign of reflux even when he is fed in this position.
If you call him by name and tell him hello, and you wave at him he waves back…with the little right arm! It’s so cute. At first I wasn’t sure if he was doing it deliberately, but now I am. He has discovered that he can reach his feet. He also does what looks like abdominal crunches. I guess he really, really wants to sit himself up. He used to hate physical therapy, but now he LOVES it, because he gets to roll, sit and stand, all the things he wishes he could do for himself. I know he will, one day.
He still wears hearing aids during the day, unless his parents are remiss and forget to put them in. So far he hasn’t minded having them in.
He is very entertained by his brothers, and enjoys having them home from school this summer (although he doesn’t look too happy in the photo above). They enjoy playing with him and bothering him to no end. They climb into his crib every morning to greet him. I can’t count the number of times I say, “Leave Ben alone! Get off him!” in a day, but really I’m glad that they love him so much. They will do anything to make him laugh.
Ben coos, blows raspberries and smiles a lot. He has the neatest giggle, and when he’s really happy, he smiles audibly. He doesn’t cry without a good reason. And best of all, he still sleeps through the night! Now there’s a lesson he can teach the older two!