Anna is always all smiles. Even during her most recent hospitalization. She has been having some serious issues with her gut though. She would pass loose stools, blood, mucus, and daily complain of belly pain, sometimes all day long, asking to be carried. She was struggling. Her behavior would be affected as well. This has been going on for almost a year, with it worsening, until it culminated into this hospitalization. Best guess being that it is multiple food allergies, but the number of foods that she could eat without causing problems became less and less. As a result, she ended up on tube feedings. Despite her needing a colonoscopy and having a nasogastric tube placed, she really shined the light in the hospital. The nurses and doctors adored her. She loves people so much. She loves food and for a girl who can’t eat much of anything, it was heartbreaking to see her happily playing with her lovely fake food items! It has been a rough roller coaster ride of 2 steps forward and 1 step back with her health. So even with her smiles, I realize that her chronic medical issues are just a stark reminder of the fact that her Down Syndrome affects every cell in her body. It’s not easy and there are many challenges that she and our families have to face. It can at times feel like a constant battle. In fact, this hospitalization was difficult because although she was on the most hypoallergenic formula known to mankind, she was still reacting. It didn’t make sense at all. It was not in the textbook and didn’t follow at all what the doctors were expecting. I found myself extremely frustrated as I tried to prove to others what I was seeing and how yes, the completely unheard of, unexpected was indeed happening to Anna. This was not an imagined thing. Of all people, I wanted to find a good, permanent solution, but there are none- no quick fixes. I found myself also frustrated as I desperately look for answers, any way to help my daughter. We are making some progress and Anna is still a big mystery, we are trying to figure out, so for now, day by day, slow and steady, although there are set-backs, slow improvements overall, I’ll just have to accept for now, as I continue to search for clues and answers on how to help our dearest Anna.
Raquel