Here is what we have been up to! It has been a long time since i updated so I will be as brief as possible! We came home Friday, July 8th. Jack slept the whole day and night. When he finally woke he studied the house. It was like he knew he belonged here. We spent the whole weekend just holding and loving on him! No more needles, exams or thermometers. Monday we had our first pediatric and cardiology appointment. He passed both with flying colors! Tuesday he had a follow up hearing screen. He passed the newborn but they wanted to be sure he could hear because downs children are high risk for hearing problems. He failed. I seriously thought I was going to be sick. I just didn't want anything else stacked against Jack. They told us we would be referred to an ENT for further testing. Wednesday we went to a GI doctor Dr. Bonnett (our pediatrician) referred us to watch Jack from a nutritional standpoint. In the office Jack had a dirty diaper that had blood in it! I was happy it happened there and not at home. So I they send me with a sample over to the children's hospital at Richland for some labs. They called me later that day to tell me Jack had colitis from antibiotics they had given him before the G tube surgery. He had to have another antibiotic to treat it. Thursday Dr. Bonnett's nurse called me to tell me they wanted to see Jack on Monday. MUSC had tested his amino acids 3 separate times and they were all abnormal. Monday Dr. Bonnett sent off the test for his amino acids. I began researching amino acid disorders, which Jackson had told me not to, and was terrified. I decided just to try not to worry and wait for the results. That Thursday I noticed Jack had developed thrush so we headed back to the doctor's office. Monday we had another appointment with Dr. Bonnett. He upped his reflux meds because Jack has the worst reflux I have ever seen. He turns red, then purple, while gagging and then it shoots out of every hole in his little face. It is terrible. That evening my phone rang and it was Dr. Bonnett. He asked me to come to his office the next day. Jack's amino acids were still abnormal. Dr. Bonnett said he may have maple syrup urine disease. MSUD is a life threatening metabolic disorder. Jack would alway be on a special diet and when he became sick he would more than likely have to be hospitalized to have IV fluids. MSUD can cause swelling of the brain, coma and death. Tuesday, after battling a flat tire, I went in, and then down to the children's hospital again for the tests. We were told the tests would take 2 weeks. I can find so many beautiful things about all of Jacks other disorders, but not MSUD.
Today we went in for his two month check up. He is doing great and weighs 11 pounds, 1 ounce! We got back the results for the MSUD blood test and they were all normal! Praise the Lord! Now we are waiting on the urine results. We also went to see the ENT today and Jack can hear just fine! The doctor said he doesn't anticipate that Jack will have any hearing difficulty!
So that has been our lives in a nut shell. Other than all our scares he has gotten lots of love and play! He is such a joy and I can't wait to watch him grow! We are so fortunate to know many wonderful photographers! The have helped me lose the feeling that I missed out on so many good pictures since he was born!
Ashley Uhl Photography
Ashley Uhl Photography
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