Wow! What a long day! Let me start off by saying that it snowed in Denver today AND that I still loved Denver. With that said, here's the run down of today's appointments.
11am - 1pm Dr Sujansky the geneticist. We all loved her. She's an old German woman that reminded me of Dr Ruth LOL. She doesn't think Wyatt has Sticklers - she thinks he has a different collogen mutation called Spondyloepiphyseal dysplacia or SED (dwarfism). She measured Wyatt and me and thinks I have a mild form and said she needs a full skeletal of Wyatt to get more info on him. This wasn't a shock to us as this mutation had already been mentioned. She said she wanted the third opinion from the Opthalmologist and that the one we've been referred to at Denver Children's also has a genetics background. So this saga goes on.
1pm Social Worker. This was basically a nice introduction and overview of how the team likes to do things and what we could expect. Her role was to make sure any specific issues we felt we were having were going to be addressed by the team.
2pm Met with TWO surgeons. We have our choice of which one we prefer. I LOVE the fact that they have this option. Eric and I liked both surgeons and it will be hard to choose! Don't you love that problem?! Dr. Ketch is a plastic surgeon and said he'd do the palate repair between 12 - 18 months. He said Wyatt would have to be off his bottle and would have to wear the arm restraints for 3 weeks after surgery. The second surgeon, Dr Allan, is also an ear, nose and throat specialist. He said he would do the surgery around 11 - 12 months and that it would be O.K. to use the Haberman after surgery and that Wyatt would wear his restraints for 2 weeks. I think I am leaning towards Dr. Allan becuase he spent a lot of time with us and didn't seem to be in a hurry. He also checked Wyatt's ears and his tubes are fine and he said we didn't need to meet with the ENT in the Springs. So I can cancel an appointment - yay! Oh - both surgeons said that Wyatt will need 1 surgery to repair the palate and a possible second surgery at around 5yrs old for speech correction. This is all exactly what we were told in Birmingham so we were very happy that there were no radical changes.
We discussed Wyatt's feeding issues and how he doesn't like the corn oil in his formula and how the fortefied formula seems to be constipating him. Wyatt lost weight for the first time. The cleft team pediatrician said that we have to go back to our pediatrician in the Springs next week, rather than 3 weeks from now for a weight check. If things don't improve we will need to consider a feeding tube again. This time we would do an NG feeding tube, which is one we'd insert once a day, every day and not a nice option. I'm feeling guilty about not pumping becuase the milk wasn't constipating him.
We then saw:
*An audiologist who wants to do a hearing test at 9 months old.
*A speech therapist who suggests a minimum of monthly sessions after Wyatt's repair.
*An occupational therapist who gve us 4 new Habeman bottles (yippee!) and watched us feed Wyatt. She was happy with our technique. She gave us the new bottles because the old ones have too fast of a flow and don't encourage Wyatt to suck. She also said we should set up a regular monthly appointment with someone in the Springs to follow with Wyatt's progress.
*A dentist who said that Wyatt will need to see a dentist every 6 months when the time comes.
I think that's everyone. We liked all of the team - what a relief! I guess we have to take a few days to soak in everything and decide how to proceed.