8/17/06 Update

Once again we have an update and it is good news!!!!
We went to Children's yesterday to get Caleb's mouthpiece and nosepiece adjusted, the palate and the nose seem to be molding nicely. The doctor's are really happy with the progress. In addition, while we were there they let us know that Caleb's chromosome test came back normal AND the test for the VCFS came back negative. This is all great news!!!! We are very excited. We will talk about the results in greater detail when we meet with the geneticist next month.

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.

8/7/06 Update

Picture - Caleb and Daddy at story time.

Caleb is responding well to story time. He is following voices and keeping his eyes open. Great signs in regards to his brain development.

8/7/06 Update

Picture - Caleb in his carseat ready to go to the Urologist and show them nothing is wrong.

Today we visited the Urologist at Children's. All seems good!!! Caleb will go through one more ultrasound to double check the ultrasound performed after birth at Allegheny Hospital.

8-1-06 Update

Pictures: Left - Caleb showing off his mouthpiece. Below - Caleb sleeping in the chair at the craniofacial office after getting his mouthpiece adjusted.

Well another update for the little one

We went to the Orthopedic Surgeon and one hip is in and one hip is in but popping out. The hip that is popping has the Orthopedic Surgeon somewhat concerned. Therefore, Caleb has to stay in his harness for another week 24/7. . . Needless to say those onesies get thrown out when he goes to his weekly checkup and gets a bath and a harness check. The hip will be checked again on 8/10 to see if it is any better. After the ultrasound we will see the orthopedic surgeon to get the results so I will submit a new post once we know anything.

Caleb also had his mouthpiece adjusted again (showing it off in the picture), the palate is moving nicely.

Caleb is already eating cereal to help his acid reflux. He is dealing with that well and not spitting up as much and gaining weight better.