Milestones for McKenna

It took nearly five years, but a few weeks ago McKenna finally went underwater. Showers, swimming pools, baths are all very difficult for McKenna. She hates the water on her face and cries when we wash it. She started poring the water on her face from a cup in the bath, all by herself. And then within a week she decided she wanted to put her face underwater. It was only for a second or two, but she did it, and she was so proud of herself she kept doing it. She went to school the next day and told her teacher, Ms Jennifer, and didn't get the overreactive super excited response she was hoping for. Most people don't understand the difficulties McKenna faces or how far she has come. But for our family, we are so excited and proud of McKenna to reach this milestone. McKenna went to the foot doctor last week and they are switching her from her SMO braces to chipmunk orthotics. Due to the huge financial difference between the braces and orthotics, and because of how much easier the orthotics are to put on, we are really hoping that they will be enough supper to help correct her extremely flat feet. McKenna has had a slight wean from her tube feed. We usually give her one and a half boxes of formula and about three weeks ago we decreased her to on box. She seems to be handling it well. No huge appetite increase, but doesn't appear to have lost any weight and has actually gained a few ounces. We will keep her at this quantity for at least another month if not longer. We will be talking to her pediatrician this week for their five year check up and will be able to discuss with them at that point aha the best steps for McKenna would be to help continue tube decreases.