For starters Ami has had a cough for 3 weeks. It isn't all the time, and it's dry with no other symptoms. Dr. Moore told us not to really worry about it unless it gets worse. Well Tuesday he got worse. First he started acting like he was going to throw everything up, then he stopped eating, then the fever came. So we took him to urgent care. Which I hate doing because any time a new doctor sees him we have to explain his disease, and every thing under the sun that we are doing to treat it. So we take him in and get "the lecture." The interstitial lung disease lecture... Why do you think he has this disease, who diagnosed it, who is treating him for it, blah blah blah. I wanted so much to yell at this doctor when he asked who told you he has interstitial lung disease, how about a specialist, a lung biopsy, several chest xrays, CT scans and a PFT you ass. But I didn't and just explained every thing to him. Ami got a chest xray again to rule out pneumonia. The doctor said this xray looked better than the past 3 he's had so that was exciting to hear. He gave us an antibiotic just in case he had some kind of infection in his airways but he did not have pneumonia. Well that night the vomiting began. It continued the next day and today also.
Today was his 15 month check up with Dr. Moore. He has lost weight since the last time he went in. She thought his lungs sounded better than they ever have. She referred us to a nutritionist because she believes he maybe missing something from his diet. She also told us to give him back his bottle for the Pediasure, since he won't drink it out of anything else. She told us if he doesn't gain more weight then we will have to put in a feeding tube. She also referred us to an ENT to talk about getting his tongue clipped. We will be going back in 2 weeks for a weigh in and to up date her since we will have seen Dr. Carlile, that's his pulmonologist.
December is going to be a very busy month for us. He still goes to speech weekly, physical therapy monthly, synagis shots monthly, he sees the pulmonologist, the ENT, a nutritionist, he has a WIC appointment, and weigh ins again. Plus Christmas, provided everyone is well.
The holidays are here, and they are just as stressful on us as we expected. We all vividly remember last year, and are praying we don't have a repeat this year. I am excited for Christmas though. Ami will kind of know what's going on and be a little excited about it all. It was nice to be able to go to Thanksgiving. I was glad that everyone was well, except for Trent ;(
I can't believe how big Ami is getting. He walks every where. He says new words everyday. He actually plays with toys instead of cause and effect situations. He challenges himself. He is remembering situations and events.He is growing up way too fast. Time sure does fly when you're having fun.
