For those who know William you will agree that he is one outstanding young man, 7 years old with Down syndrome. - Down syndrome is categorized into three genetic types based on how the extra chromosome 21 material appears in the body’s cells. - Recently, William has gone to Iowa City for several ER visits. William was struggling to breathe. After a number of tests, they determined he needed surgery, and would not know for sure the whole procedure until they "got in there." He went into surgery on Friday May 22. The surgeon pulled joe & Alina in to a consultation room to explain what they found and what needed to be done. - Basically, William has large tonsil tissue growing on the back/base of his tongue that is blocking his airway. The doctor said it becomes even more swollen anytime he gets a cold or inflammation, which makes his breathing obstruction worse. They are having to cauterize and shrink that tissue down to open his airway. - They are also reducing tissue around the torus area behind his nose to help create more space for breathing there as well. - The doctor said this recovery is expected to be more painful than a regular tonsil surgery because anytime he moves his tongue to talk, swallow, eat, or drink, it will be sore. Because of that, they already know he will need to stay multiple nights in the hospital, and they will basically have to play it by ear depending on his breathing, pain control, and hydration. They are still continuing with the GI probe/device study as planned too. Please be praying for Wiliam, the surgeon, and for a safe recovery and easier breathing moving forward. He has been incredibly brave through all of this. - as Alina & Joe tell the story of William's need -- they also found Alina has a congenital heart vessel condition where her aorta curves to the right and has an enlarged abnormal artery -- (Kommerell diverticulum with an aberrant left subclavian artery) which is pressing on her esophagus and causing swallowing and choking symptoms. (Right-sided aortic arch with an aberrant left subclavian artery and Kommerell diverticulum causing dysphagia lusoria.) So while she asks for prayers for William... I ask for prayers for the whole family. It's about community support and care. - meal prep can be very challenging. Let's help this family have some healthy meals -- With consideration, that william may require some specialized meals in the beginning. but this will also help Alina & Joe.
dietary needs: family likes fruits, vegetables, avoid dyes, and artifical colors