Tuesday, May 18, 2010

Issues and no answers

Been a little while since I updated last. Not sure where to start.

Emily is still having issues, but no answers. She had an appointment with the lung doctor in Cincy, and they are very pleased with her lung progress...so much that she does not have to go back there anymore. She is to follow up as planned in Louisville with pulmonology next month. Cincy doctor did reccomend we get Emily an echocardiogram due to all the swelling (to rule out pulmonary hypertension), and that thankfully came out okay. That is great except Emily is still puffy, weight fluctuates 3-6 pounds up and down, her left arm and leg at times are much larger than her right, and at times the veins in her neck stick way out and visibly "pound" (and she whines and complains that this really hurts when they are doing this). At other times, she doesn't look too bad. What we have found that what helps somewhat is wearing oxygen most of the time (her weight holds steady at 47-48 pounds on oxygen, but it jumps to 51-53 after being off for more than a few hours. When her weight goes up is when she starts breathing harder, whining a lot, complaining of the neck pain, etc. That seems to be when her arm, leg, face, and belly puff up too. Why this is happening, we don't know. This is very frustrating for us, especially as we don't feel like anyone seems to care to find the cause. I think the doctors have written it off as "side effects of medication," but I would think it would have gotten better by now. I do find comfort in the fact that at least she is doing so well, other than these "minor" complaints.

Otherwise she is doing great! She finished out her wrestling season with a Freestyle State Championship...very exciting! We are not signing her up for any additional sports right now until we feel more comfortable with whatever is going on with her health. We also have her follow-up bronchoscopy on hold for the same reason. I'm not about to rock the boat!

She continues to go to school and is doing very well. She has developed a lot of pre-reading and math skills and is even trying to spell out easy words. Not bad for a kid who has only been talking 16 months! We went to parent teacher conferences and her teacher is pleased with her. Emily will not be going to kindergarten next year due to her late birthday (missed the cut-off), but that's probably for the best anyway. She has missed a LOT of school this year, and I am not sure how "real" school will deal with that, and frankly, we're not too anxious to find out. :)

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