Maddie Update

Today was her big pulmonologist appointment at Rainbow's Baby & Children's

Hospital. She was less than thrilled about the somewhat more Baby decor. But anyhow, she toughed it out. She had a chest x-ray, breathing test (that she hated), and (Emily I know you'll love this ) a 16 count allergy test done. As she endeared the allergy test, she kept telling herself if little Evan can endure this and not scratch so can I. Her ONE spot that was unbearable was the one control spot. She tested negative on all other allergies. She needed above an 80 on the breathing test, she "scored" (for lack of a better word) an 118. A 118 and that was her not understanding what the tech was trying to tell her the first two times. The tech was geared more to younger kids, and was very HAPPY. This drove Maddie nuts, don't ask me why. She is being weened off of the steroids over the next week, and within the next three weeks will be completely off all of her meds for the big exercise on the treadmill and take the same breathing test. They need her to be medication free for this test. The need to see exactly what is going on, and diagnosis and treat her accordingly. A cardiologist will also be overseeing this test to check on her heart during an attack, and see if her body responds appropriately to exercise. (It almost makes me wish he would check mine out to see if my body responds to exercise the correct way, because I know as a chubby girl I have felt many times that I'm dieing during exercise. Wouldn't it be nice to have a cardiologist on standby just in case?) Anyway, the pulmonologist thinks there is a possibly that it may not be asthma and may be a problem with the vocal cords closing. Here all this time it isn't so much that she is wheezing, but the stridor sound that is so noticeable. (Stridor sound different than wheezing) The vocal cord thing is somewhat rare and is usually from high intense sports (ex basketball), along with some other factors. Madeline could almost narrow it down exactly when she needed her inhaler, and what would usually cause an attack. The doctor is taking it one step at a time though and eliminating things one at a time. She will also be seeing a endocrinologist. She will be taking a more intense thyroid test along with checking on additional hormones. (Long story to go along with that later) Overall it was a good visit. It helps me realize that what I've been saying all along about her not having asthma may actually be right. There is something about a mother's instinct that is strong and shouldn't be ignored. The doctor also told me it was an excellent thing that I didn't double those steroids to 640mcg, because it would be so much harder to ween her off. If anyone is keeping score that is mom 2 doc 0.