*update*

After Delilahs horrible pulm appointment Monday my week just wasn't going so great. Scott and I decided that we need to decide how to treat her on our own as we are getting nowhere with her drs. She was put on so many meds at once I was unsure at this point what was actually working. I had a hunch that the erythromycin (the antibiotic) that we were giving her 4 times a day was part of the problem because after taking it she would arch her back more and squirm around like her tummy hurt and just scream, cry and fuss all day. On Wed I decided not to give her any and on Thurs she was the happiest she has been in weeks! I didn't give her any Thurs or Fri and it was great! She didn't scream all day, she slept better, didn't squirm as much. It now makes me think what other meds is she taking that are hurting more than they are helping. I also took her off all solids as I have heard that orange baby foods are more acidic and make reflux worse. Im going to wean off the other meds then slowly reintroduce them to see if she does better with or without them. We have decided to do the pH probe and her pulm is supposed to set it up and let us know when it is. I called her on Tues and haven't heard from her since. ugh. I also decided after researching things a bit more to make an appt with a pediatric GI dr to evaluate her reflux and get a second opinion from another ped Pulmonologist. We go see GI Aug 20 and Pulm Sept 6.

I took her to her physical therapy appt on Friday and it actually went really well. Her head has reshaped nicely and is now only a 5 mm difference from right side of her forehead to her left. And her flat spot almost isn't noticeable. She has come so far with this! She now has full range of motion with her neck and the muscles are getting stronger. Her PT was very impressed :) She did talk to me about her apnea/cyanosis and reflux and thinks i really do need a second opinion from a pediatric Pulm and to see GI. I told her about the appointments we have had recently and she was as upset as i was that they are not taking this seriously. She completely sees what i see and knows there is an issue. During her 1 hr therapy session she had 3 choking spells and spit up close to 10 times, and not just a little bit! She is honestly surprised that we haven't had a consult with a surgeon to have a nissen and g tube placed (this is where they place a feeding tube into her stomach and it has a "button" on the outside of her stomach where you hook her up to a feeding pump and feed her that way, she would get nothing by mouth anymore). She is very concerned about the constant damage to her lungs due to aspiration. We want to exhaust ALL options and do any and all tests before agreeing to a nissen. I think with the right medication combo to treat the reflux we can avoid further aspiration. Its just finding that perfect combo of meds. I'm trying my hardest to figure it out (and keep my sanity while doing so) and will keep fighting until we get the answers we need. I have a great online support group who get me through each day as well as many family and friends who are a huge help!