Craniofacial intake clinic

We attended the craniofacial clinic intake appointment today. We started in a group session. Surprisingly, most of the parents there had cleft palate babies and most of them used the Pigeon bottle instead of Haberman like us. The whole thing went from 9am to 1pm. It was excrutiating! Particularly for Wyatt who couldn't focus on eating much the whole time we were there. He also hates to be examined. They mentioned starting an account for orthodontia. I wish they would have allowed some times to encourage the parents to talk to each other. I would have liked to have heard how others were coping. We got a new bottle, a toothbrush and a feeding spoon for later. They also hgave us a binder full of materials to read. One sheet is on introducing solids, which is apparently more challenging in the cleft palate baby.

Next we went in to individual rooms and met with the multi-disciplinary team. First was the social worker. She didn't introduce herself. I only figured it out after she asked a few questions. I told her I was having some trouble coping. I was very worried about Wyatt. I was becoming obsessive about all his issues. I told her about how annoying it is to get counseling services through Kaiser because of the three hour orientation. Kaiser loves an orientation. I got the feeling that I overwhelmed her.

Genetics is interested in him again and wants to do a full genetic evaluation. I asked what the purpose was really, would it tell us something that would require immediate treatment, would it help him qualify for services, or was it a largely academic exercise. The doctor said probably it would not make a difference in his treatment and could be considered academic. The genetic counselor said that it might help him qualify for services if he has a diagnosis. I decided not to make a decision at that point and told them Rus and I needed to discuss it because we aren't on the same page. They were also interested in the y-shaped gluteal crease as a new issue. Although, it isn't new. Good grief.

The nurse (our old friend Peg who visited us in NICU) measured Wyatt's length at 24 inches. Finally something respectable. His weight was only 12lb 3oz, which we hope isn't comparable to Robin's weights otherwise he only gained an ounce since last Wednesday. That can't be! Peg is really impressed with how much Wyatt has changed and how good he looks. To prove how well he is doing, Wyatt had a loud, audible bowel movement and then chuckled to himself. He thinks he is pretty funny.

Speech pathology gave a talk on speech issues with cleft palate children. Some hard consonants will be impossible for him to say like D. Y, W, M and N will be easier. So, I am still mama, Rus is now yaya, grandmas are nanas and grandpas are wawas. There are a whole bunch of sounds and behaviors we are supposed to discourage, like growling. I found it overwhelming. I mean we already have to hold him upright after feeding, do his torticollis exercises, now there are a set of rules regarding his speech. Somewhere in all of that I get to enjoy him right?

The ENT doctor was concerned about his noisy breathing and his potential for re-aspiration. He mentioned having a swallow study done now that the tube was out. We told him Gotschall had suggested as much, but we completely forgot about it. We also told him we thought he wasn't as noisy as before. I am not sure where we left the swallow study. He tried to examine Wyatt's ears, but Wyatt fussed too much. He said that cleft palate babies often have fluid in their ears, but he couldn't tell from his exam. He said often they can tell when the audiologist performs a hearing test and there is a loss of hearing between exams. I am not sure when Wyatt will be re-tested.

We found out that when his palate is repaired he will also have tubes put in his ears. We won't be able to coordinate him having an MRI at the same time, which doesn't surprise us. His surgery will likely be in September, 2009. Dr. Yokoo (the craniofacial surgeon) wants to be careful with him. She gives him 80-90% chance of NOT having a repeat surgery. Sometimes the palate has to be elongated or re-closed later when the patient is five or six. His cleft is V-shaped and only in the soft palate.

The nutritionist came in to talk to us about Wyatt's weight. He is only 5% percentile, which puts him on the chart. She thinks that this is a problem, but actually its progress for him. She also had some suggestions about changing his formula to a colic or soy formula. She wasn't sure it would help, but thought it was worth a try. She, along with one of the nurses, did not think that going to rice cereal was a good idea yet, nor did they think it would make any difference. I am not sure I agree with them. In the materials they gave us, there is a sheet on moving to solid foods and some of the issues.

We saw Dr. Malhotra leaving the area. Thankfully, he didn't see us. I thought about closing the door to the exam room. We also saw Dr. Baker. That guy is a total knucklehead. Luckily, we saw another genetics doctor that I liked much better.

Our next appointment with them will be at 6-9 months.