Evaluations

Our morning started with a visit to the speech therapist for James's feeding evaluation. The therapist was the one who had worked with him while he was in the NICU, but we'd never actually met her. But when she started out by saying how she missed James and loved seeing him, I liked her immediately. :)

Her take on the situation is that it's not his bottle skills that are the problem, it's that his tummy hurts, and nobody wants to eat when their belly doesn't feel good. So, the main goal for now is to try to manage the reflux (and any other issues that he might be having, such as gas). She recommended that we try a different, gentler formula (Gentlease). Even though he was doing okay on the Enfacare at the hospital, she said sometimes problems don't show up right away. She checked with the dietician and the GI doc, and they both approved the change. It would be great if this switch helps, because it's an easy solution. If this doesn't work, there are other things to try (different meds, the rice cereal, etc.). It was very reassuring to know that there are lots of different options to try.

After that appointment, the boys had their bloodwork done at the lab. Mattie was getting just a routine test (to make sure he's not anemic, I think), and James was getting his bilirubin, etc., checked. The doctor called in the afternoon with James's results, and his bilirubin had gone down again (yay!) to 2.4, and his sodium was up a little (to 134), which is also good. They'll repeat the labs in two weeks.

We also went to the hospital pharmacy to get some prescription refills. It turns out that getting salt water is complicated even there! The outpatient pharmacist had to call the pediatric pharmacist to double-check how to do it. But it was significantly less expensive than the compounding pharmacy.

We ran into James's surgeon there, too -- he saw us and stopped to say hello and see how James was doing. We see him everywhere these days!

We arrived home about a half-hour before the people for Child Development Services (Early Intervention) came by. Our coordinator was there along with an educational development specialist. They were both really great. The evaluator talked to us about what James was like and what kind of things he was doing, and then got down on the floor with him to look at things like how he was tracking objects with his eyes, what kinds of movements he was doing, how he reacted to being on his tummy, and so on. James had been awake a lot of the morning and was a bit off-schedule with his food, so he was pretty fussy and uncomfortable for the first part of the visit, but then he settled down (and then fell asleep!) He was calm for enough of the time that I think what she saw was reasonably representative of his typical behavior.

Her take was that he's a little bit behind what they would expect for his adjusted age (two and a half months), but that it's not anything more than you would expect given what he's been through. For instance, he's not lifting his head up high when he's on his tummy. Essentially, because of all his medical issues, he hasn't had the opportunity to develop some of those skills yet. She did recommend another evaluation by a physical therapist, though, and that person would decide whether he needs additional PT sessions. The PT will also do an evaluation for Matthew, mainly because the evaluator noticed that he still likes to have his head turned to the right, and they want to make sure that he's not creating any muscle tightness. (I think both of the boys have full range of motion with their necks, but it doesn't hurt to get it checked out.) In the meantime, she recommended lots of tummy time and a couple other things (using toys to encourage him to lift his head while he's on his tummy; using wrist rattles to encourage arm movements). We were happy with that outcome; it was good to hear that there weren't any big issues that we'd missed, and it's also nice that we'll have a chance to get input from the physical therapist.

We had mentioned that the other night, James had startled in response to both Stanley's bark and to Mike banging a pan with a spoon (relatively loud sounds). One of our toys has a little jingle bell inside it, and she jingled it about six inches above his ear. She did this three times, and her impression was that he raised his eyebrows each time when she jingled, so she thinks he is responding to sound (even a relatively quiet one). I was out of the room when she did this, and when she tried to replicate it for me, I don't think he really reacted -- but it's possible that it could have been that he was just used to the jingling by then. So, that's not necessarily diagnostic of anything and I'm not going to put a lot of weight on it, but it at least provides a little room for optimism about the possibilities for his hearing. (The hearing services are a separate program; this evaluation today wasn't really intended for that purpose.)

James has been trying to get his fists in his mouth a lot today, just like Mattie has been. If we're lucky, maybe he'll accept that as a substitute for the pacifier! (His periodic inability to keep the paci in his mouth becomes increasingly less endearing after the umpteenth time of giving it back to him, only to have him pop it out seconds later and cry about it. I'm sure his nurses would agree!)