We have changed the design and layout of the site. You can still see Cooper’s pictures by clicking the Cooper’s Photo Gallery link under Links.

As for the other pictures that were on the site…those are gone for now. We may add them on another site or put them back up later, but right now it’s all about Cooper =)

Today we started our meetings with the Sutter Craniofacial Panel. We met with a pediatric speech-language pathologist, a pediatric nurse, a pediatric nutritionist, a social worker, and a geneticist. We will eventually go back and meet with a panel of doctors who will then get together and discuss Coopers case.

The meetings went really well…the speech pathologist was pleased with Coopers development, the nutritionist was impressed that we had given him breast milk this long, and the geneticist helped give us a clear diagnosis for Cooper. The speech pathologist also said that the troubles he had with nursing were most likely directly related to his condition. He does have moderate Microtia and mild Hemifacial Microsomia and she classified his conditions as Ocular-Auricular-Vertebral Spectrum (OAVS). He does not have most of the conditions related to OAVS but she said that his conditions would still fall under this classification. The cause of OAVS is not known, but the geneticist assured us that it should not be a concern for us for our future children; there is less that a 2% chance that we would have another child with these conditions. We feel like we finally know what we are dealing with and can begin to move forward.

We will monitor his development closely to make sure that the hearing loss in his right ear does not have a negative impact. His kidneys are functioning well and we will have a follow up ultrasound in 1 year. We are waiting for a 3rd opinion on his skin tags, but hopefully those can be removed in the next 4-6 months.

Today was another very long day. We arrived for our Urology appointment at 3:45pm only to be told that we went to the wrong place. Apparently, the doctor has 2 locations, but nobody ever told us that, so we just went to the place we had gone before…

So, at 4:30pm we arrived at location #2 and then had to wait in a very small waiting room with about 14 people until 6:00pm when we were finally called in.

The renal scan results showed that Cooper has a normal left kidney and a smaller right pelvic kidney. The right kidney is actually on the left side of his body and is lower than his left one. They also were able to determine that the right kidney has 26% of normal function. The VCUG results indicated that Cooper does not have bladder reflux, which is very good news.

Dr. Shapiro, who is highly regarded in the area, told us that despite the abnormal right kidney, Cooper should have no problems with his kidney function. Many people live with only one kidney, so we do not have anything to worry about!

Cooper’s first laugh came while he was on the changing table and Shannon was saying, “I’mmmm going to get ‘cha…”, over and over.

Today was a long day at the hospital. Cooper had 2 different test done for his kidneys, the first was a diuretic renal scan and the second was a voiding cystourethrogram (VCUG). He had to have an IV and a catheter, he actually did ok when they put in the catheter, but he screamed his head off while they were putting in the IV.

For the diuretic renal scan, he had to be swaddled up in a blanket and then taped to a table like a mummy for 40 minutes while the scan was in progress…needless to say it was not very fun.

It felt good to get the tests over with and now we will have to wait until next Tuesday to find out the results.

That’s right…we are using cloth diapers. We have been using disposables until he was big enough to wear cloth ones. We use a cloth diaper, secured by a snappi, and then put a cover on to keep stuff from leaking =)

We purchased most of our cloth diaper supplies from EarthBaby.com.

Cooper flashed us his first smile today…

Cooper has begun to follow movements with his eyes. We have some pictures that we move from side to side in front of his face and he follows them intently as they move.