Tuesday, August 15, 2006

8/11/06 Update

Hello all, another update on our litle prince. We visited Children's on 8/10/06 and have the following updates:

  1. Orthopedics: The orthopedic surgeon did not feel Caleb's hips popping out of socket when he rotated them, very good sign. Therefore, Brian and I are allowed to remove the harness every couple days to give Caleb a bath. We go back in two weeks to check and see if the hips are still in socket. The doctor did tell us that they can just as easily slip out as they slip in. So we are keeping our fingers crossed.
  2. Craniofacial: More good news...the cleft of the palate continues to move and the cleft of the lips seems smaller. Caleb also got fitted for the nose piece that was added to the mouthpiece that will lift the nostril while at the same time press down on the higher side of the palate. In addition, Caleb is gaining weight nicely, the doctors don't seem as concerned anymore regarding his weight. He weighed 8lbs. 10ozs. at this last visit which means he gained 9 ounces in a week.
  3. Bloodwork/Genetics: Caleb's blood had to be taken again (inconclusive previous results) for chromosome testing and for VCFS. The chromosome testing is being done to see if something genetic caused all the issues (heart, cleft, brain, etc.). In addition VCFS, Velocardiofacial syndrome, also known as Sphrintzen syndrome, is the syndrome most commonly associated with cleft lip and palate. Aside from cleft palate, there are up to 184 other anomalies commonly associated with VCFS, including heart defects, unique facial characteristics (elongated face, almond-shaped eyes, small ears, wide nose), speech and feeding problems, middle ear infections, and learning difficulties. Not all anomalies are present in the child, nor is any one anomaly present in all cases. The features with which the child is born do not get progressively worse over time. The results of the bloodwork usually take 3-4 weeks. We will go over these results with genetics during our appointment with them.
Caleb's acid reflux still seems to be bugging him somewhat, still spitting up and uncomfortable when you lay him flat, so we will talk about that with the pediatrician on 8/15.

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