Some Answers, More Questions

On Monday 10/9, Julie and I went to see Addison at her 10:00 a.m. feeding. Megan went to the Zoo with her good friend Graeme and his parents Jeff and Jennifer. Because we all want Addison to get strong and healthy as soon as possible, she needs to get all the rest she can. This is usually accomplished with limited ‘touch times’. Julie and I can visit most any time day or night, but don’t get to touch or really talk to our little girl except at her feeding times.

While we were visiting with our little girl, her doctor stopped by to let us know they did have the results from the MRI which was done on Friday. He said that both the spine and brain looked good. He did say there was a tiny spot on the brain that didn’t “light up”, but it was nothing to be concerned about. He did say he wanted a pediatric neurologist to look at the scans for an expert opinion, regardless, THIS WAS GOOD NEWS and AN ANSWER TO MANY PRAYERS. Also during our morning visit, they took a sample of blood to test for myotonic dystrophy. They said it would be 10 days to two weeks before we would know the results.

Later on Monday, Julie and I met Johnny at the NICU to visit Addison. This time the nurses said the doctor wanted to speak to us again – usually we have to ask for him. Doctor Pickins said that Addison’s orthopedic doctor, Herndon, had been by to see her. Dr. Herndon was concerned about Addison’s right leg and ordered new x-rays of her legs (they x-rayed them on Wed when she arrived). They discovered that her right femur was now fractured. The doctors are puzzled by the fractures to her legs, since the other bones in her body seem to be perfectly fine. Dr. Herndon did say he would be back on Tuesday morning to fit Addison with her brace that should stabilize her legs and hips, and allow healing to begin. This should also make her more comfortable.

Just as we were about to leave, we had extended our touch time by 30 minutes or so, Dr. Pickins said the pediatric neurologist was in the NICU and we should wait a little longer. We certainly didn’t mind, as Addison was alert and watching our every move. Dr. Hille was the pediatric neurologist who came to see us. He reviewed the scan for quite a while then asked us to leave for about 10 minutes while he physically evaluated Addison. About 30 – 45 minutes later, he came to get us for his consultation. Dr. Hille confessed to us that he has never seen anything like this before. He said the brain scan looked good, and as far as he could tell the spine looked fine, but he would need to consult with other specialists. Dr Hille said it appeared to him that Addison’s upper body was responding normally for a baby her size and age, but her legs and lower body were not responding. He said he thinks the brittle bones are a result of the lack of movement from her legs and not a specific condition with her bones. He also said he did not think this was a case of myotonic dystrophy. Dr. Hille believes that it appears that her mental capacity is perfectly normal for a newborn, so this is definitely a blessing and encouragement to us. For now, we PRAY THAT THE DOCTORS AND THE SPECIALISTS WILL BE ABLE TO DISCERN WHAT IS CAUSING ADDISON’S LACK OF MOVEMENT OR THAT ADDISON WILL BEGIN TO DISPLAY MOVEMENT IN HER LEGS. Also, we are going to ask for a second opinion to be forwarded to a recommended Pediatric Neurologist in Dallas. WE PRAY THAT THE LOCAL DOCTORS WILL BE SUPPORTIVE AND ASSIST US IN OBTAINING THIS CONSULTATION WITH THE DALLAS NEUROLOGIST.