Updates on Emily's tests

Let me first start by apologizing that this post will be long. Let me back up a few months and catch everyone up. Emily got pneumonia on Thanksgiving, in December, and January. We took her to Children's Hospital to see her pulmonologist Dr W. He didn't like the fact that she had been on the steroids that often, she looked like crap, with dark circles under her eyes and dark fingernails. So he ordered a bunch of tests for the next few weeks.

The first test was a barium swallow test at the cildrens hospital. We went last Friday. The test showed that Emily has Dysphagia. It is a swallowing disorder. Out of 12 swallows Emily penetrated into her lungs 6 times, with 1 aspiration. What that means is when she swallows juice, milk or water the liquid will enter her lungs and come right back out, but every now and then she will suck it into her lungs, causing pneumonia if enough liquid is swallowed. To fix this Emily has been put on Hydra Aid, a beverage thickener for all of her liquids. This gel ( it looks like hair gel) comes in a packet that looks like ketchup packets. It has no taste or smell, just makes her drinks look like watered down honey. It is really gross, but Emily has been a great sport and doesn't seem to bother her. Childrens hospital also wants to start doing therapy on her throat mussels that she is not using properly. The therapy is called Vital Stimulation. The will put pads on her mussels in her neck and then send electric waves to the mussel to stimulate it. This will be done for 7 weeks 5 days a week at childrens hospital. Thank goodness there was a 6 month wait for the therapy, childrens hospital is 38 miles from my house and trying to work around the kids school schedule is almost impossible.

On Feb 22. she will be seeing a GI doctor. They are worried that she may have some reflux that is causing damage to her voice box and throat, which may be causing the Dysphagia. After we go on the 22nd Dr W. and the GI doctor will schedule a lung biopsy and the Gi doctor while she is out for the biopsy he will go into her stomach and look around. The reason for her lung biopsy is that when xrays are taken of Emily they all look alike, healthy or sick. She has a spot on her lower left lung that is dark. We are hoping that it is fluid that can be removed during the surgery, however if it is scar tissue or damage due to the liquid in her lungs, she will have to be put on a oxygen supplement. I will update on the 22nd what the GI recommends.

Other news in our home, Michael had his 15th birthday. Emily and Nick moved bedrooms. Emily is so happy to be upstairs, she has slept every night for 2 weeks in her own bed. This is a big deal in our house, Emily has slept in my room every night for 2 years. It was starting to get old. Nick is in love to be downstairs aways from all of us. Nick's birthday is coming up at the end of the month, he will be 13. When did I get so old that I now have 2 teenagers in my house. Yikes.
We still have no dates as to when Don will be going back to Oregon. It is looking like anytime between April-July. Hopefully sooner than later. I would love to have him home for beginning of the new school year and football season. Only time will tell what will happen with his trip.