Roger must be unique in that he has been to cleft clinics in 3 different states: Colorado, Massachusetts, and now North Dakota. Colorado's cleft clinic may have been the nicest as they had all the parents and kids sit around a conference table and offered sandwhiches and snacks. It was a great way to meet the other parents and learn what their kids have gone through. In Massachusetts, I was exhausted before I even got there as it was so stressful to drive there and park. Once you got there, you were there all day. One time, Roger (a toddler at the time) and I were there for 6 hours. I got to know one mother there as we both happened to go to the same clinic twice in row (a rarity - you usually don't see the same people twice.) And now, a cleft clinic in North Dakota (which I didn't even know existed until Roger's speech teacher told me about it.) North Dakota's clinic was different in that it was free -- no co-pays! And, it was much faster. We didn't sit for long before our name was called again. It was about a 3 hour visit.
He passed his hearing test with flying colors. The doctors think he says the "K" sound really well. They kind of disagree with what the doctors in Boston want to do. But, I have come to learn that every plastic surgeon has a different opinion. They all agreed, though, that he needs an expander, which he is getting in place this Friday. They weren't sure that a bone graft this early was wise, although they said they knew that the practice of waiting was changing. They understood wanting to fix the nose earlier rather than later so that Roger would not have to go his entire childhood with a "different" looking nose.
In April, we will head to Boston, and they will evaluate how the expander is doing. They will decide at this point whether or not a pharygeal flap surgery is necessary (the doctors in Bismarck did not think he needed it.)
All I can say is that I couldn't be happier with how cooperative Roger is through all of this. It seems to be a perfect window of time to get all of this done.
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