I would like to introduce our sweet and beautiful son, Jace. Jace Michael was born on January 30, 2010 in West Allis, Wisconsin. He weighed 8 lbs. 8 oz. and was 21 1/2 inches long. He was delivered at 39 weeks by a repeat scheduled c-section. The first thing that the doctor said right before Jace was about to be delivered was "looks like a blondie!" My husband and I both looked at each other and said, "blonde?" We were pretty surprised at the fact he had blonde hair because neither one of us has blonde hair. In fact, both of us have darker brown hair, and our daughter was born with dark brown hair as well. We just figured since some of my uncles had blonde hair, that he must have inherited it from my side of the family. As time went on, his hair began to turn even lighter in color. It looked almost platinum or steel-colored. My father-in-law's hair was practically white when he was a child, so again, we assumed that he was simply inheriting the color from someone in the family.
Jace was an amazing eater his first few days of life and he never spit-up. A few days after we got home from the hospital, I noticed him not wanting to feed from the bottle as much. He would drink an ounce or so and seemed content with that. Also, it would take nearly an hour for him to drink an ounce. He also seemed to be a much sleepier baby than most.
When Jace was about a month or two old, he would frequently vomit after his feeds. He would vomit a lot, usually his entire feed, sometimes even more than that. He still only wanted to eat about 1-2ozs at each feed. I couldn't figure out why he didn't want to eat more. I became increasingly concerned each day, and I took him to the doctor to make sure that he was gaining adequate weight. He was gaining slowly, but the doctor wasn't concerned because he did gain at each appointment.
When I took him to the doctor for his two month appointment I was told that he was in the 50th percentile for his weight and in the 10th percentile for his height. In fact, he had not grown in his length since he was born. The doctor was convinced that he must have been mis-measured when he was born and that everything was fine. I was extremely concerned because my husband in 6'2" tall and I am 5'10". Also, our daughter has always been off the chart for her height. We just could not figure out what was going on with his lack of growth and feeding difficulties. He still was vomiting often and was placed on Ranitidine (Zantac) for acid reflux. I was told to bring Jace back to the doctor in two weeks to check his weight again. Despite his feeding issues, he continued to gain weight slowly.
I was concerned about Jace everyday. He had another appointment scheduled in two weeks to check his weight again, however, on this day around 12:30-1:00 in the morning, I noticed what appeared to be a seizure. I immediately took him to Children's Hospital of Wisconsin in Milwaukee. His eye was twitching and one of his arms was moving in a rhythmic pattern. The doctors in the Emergency Room noticed these episodes and they ordered an MRI (along with numerous other tests). The physician came back and told me that he had swelling on his brain and that he was going to be moved up to the ICU where he could be monitored more closely. We were completely terrified!
That same day while in the ICU, Jace was hooked up to and EEG machine so that his seizures could be monitored more closely. A neurologist and a metabolic-genetic specialist came to speak with us. The genetic doctor asked about Jace's hair right way. He wanted to know about the color and texture of it. He asked me if it broke off easily. I answered yes and was still confused with where he was going with all these questions about his hair. He and the neurologist spoke with each other throughout the day and later the genetic doctor came back into Jace's room and said that he was quite sure that Jace may have a metabolic disorder. I asked if these types of disorders are curable. He said that some are and some aren't. He also said that they had tested Jace for all the disorders that are curable and that he didn't have any of those. My heart sank. I knew then that Jace most likely had an incurable disease. The very next day, both the geneticist and neurologist came into Jace's room again and said that they were almost certain that Jace has Menke's disease. Once they described the disease to us, we were DEVASTATED!
Jace continued to have seizures while in the ICU. After about four days, the doctors were able to get his seizures under control with the appropriate amounts of medications. Before Jace was discharged from the hospital (he spent 16 days at the hospital) he had a feeding tube (G tube) placed. Thankfully this tube has benefited him. He still vomits often, but he is able to take in a lot more than before.
Jace now sees a hospice nurse once a week and she is great with him. We literally deal with things on a day to day, and often hour by hour basis. We are in the process of setting up other therapies for Jace and look forward to seeing what he will be able to achieve in the coming days. We ALL love you Jacey Pooh!
Posted: January, 2011