hover over thumbnails to see pictures of Michael
Michael’s story begins on May 25, 2004. He was born in the evening and was a much awaited addition to our family. Older brother Sean was thrilled with Michael’s arrival. Although in retrospect, there were signs from the beginning that something was wrong, we didn’t realize it then. Michael started home with a skin rash. We would later learn that the rash was Michael’s body reacting to invaders.
Michael spent much of his first months sick. He was too ill to play and simply wanted to be held. By the time Michael turned one, he had been seen by many doctors and early intervention specialists. The resulting information gave us something with which to work. Michael was diagnosed with an immune deficiency, asthma, GERD, speech delay, gross and fine motor delays, sensory integration issues and a few more. He had ear tubes placed and a tongue-tie released. We changed our view of Michael’s world. The next year was spent with home-based therapy for Michael’s delays, lots of trips to Boston, and several changes in our routines to help keep our home free from extra germs.
Michael learned to walk and talk and made good progress in the areas of concern. Michael spent a year on prophylactic antibiotics, which seemed to reduce the number and degree of infections. The daily use of these caused an artificially low, white blood count and it was stopped. Michael developed a “typical kid” skin infection which became grossly infected and needed strong medicine. It was hard to tell which was worse, the big, blistering sores or the reaction to the medicine. After some time, the sores healed and left their marks on Michael’s torso.
During Michael’s third year of life, he spent more time at home, sick, than at day care. His year was marked with one infection or virus after another. By March we had spent more time with doctors than we had with some family members. Michael had attended daycare only two days in that month. When April came and his health did not improve, we were feeling desperate for answers and solutions.
It wasn’t until May, when Michael was getting worse again, and now limping, that he was placed into the hospital for a week. Things needed to be tested and observed. Strange as it sounds, this is when Michael discovered that he liked chocolate milk and could drink it without issues. This is where and when our “Mikey” found a way to gain weight and smile. The Chocolate Milk Diet was born during this time.
Our biggest decision of the week was to start Michael on IVIG treatments. With treatment, Michael’s body would finally start to fight some of these invaders. By the end of the school year in June, Michael had had another IVIG treatment and a “looking good” description from all doctors. His IVIG treatments were now done at home, which turned into a negative experience. With much hesitation, we gave Michael anti-anxiety medication before the IV placement. This was somewhat helpful. The bottom line was: Michael had poor venous access. In December 2008, Michael had his last IVIG treatment at the hospital and did well. The following week we switched to subcutaneous infusions.
Michael receives SCIG treatment every week. It takes us about 2 ½ hours total time. Michael gets site reactions, but otherwise he does well. Michael had been part of our decision making process – as much as a 4 year old can be. He knows he does not want to have an IV placed at home again. He also knows that the “pokey tubes” aren’t really that bad. Michael no longer needs any anxiety medication for his treatments. We are making progress in all areas.
Next year, Michael will attend full-day kindergarten. The school is getting set up for their first ever PIDD student. We appreciate all their help and forward thinking. We are fortunate to have good friends and family around to help when Michael is feeling run-down or sick. Thank you for caring.