So...January 2010 A had a flare of EE after a round of antibiotics for an ear infection. April 2010 he had a scope which was clear but still pain and trouble swollowing. Bye bye Dr. Bucuvales and off to Dr. Franciosi because EE is his thing and he's taking patients. Dr. F says that A was not correctly diagnosed since he wasn't on anti-reflux meds for 3 months. Off of Flovent for the 1st time in 4 years and onto Prevacid while thinking this is going to be the worst summer ever. However, he did great with no symptoms. Sept 2010 - scope is HORRIBLE. >100 eos and lots of furring or whatever it's called. Definitely diagnosed correctly with EE. Now...to decide whether or not to do Dr. Rothenberg's Flovent study - three more scopes paid by us. Unknown whether he would get placebo or Flovent. Aidan decided to do it. :))) He's such a brave soul. He was lucky and got Flovent and scoped clean after 3 months of 8 puffs. Still clean after 3 months of 4 puffs. Now...we took him back to 2 puffs and no real symptoms. I can still see him trying to swollow foods at times. He also seems to have very little endurance. Mostly, he food jags. But I can't complain since he eats so much better overall. Still not quite "normal" but getting there. Growing steady at 10%. Teeth are taking the biggest beating but dental visits every 3 months are keeping it steady. He has seriously surprised me in his athletic ability. Not the best, but pretty darned good at whatever he wants to do.
D is progressing along as expected. She was recently tested at the Thompson Center using the ADOS test and scored a lovely 16 (otherwise known as "classic autism"). Her worst scores were on repetative and stimming - shcoking, I know. However, in the last 6 months, she is potty trained, responds by saying "yes" or "ok" if asked a ?, or her favorite "don't want to". She is completely independant on the computer or iPad or iPhone. However, we have lost 2 iphones - one in the bath and one in the toilet. I guess daddy thinks that the iPad is more resistant. LOL! She still sleeps horribly. She is awake most nights for 2-6 hours just playing and singing and watching her shows. Trying to get an appt at Thompson Center for sleeping drugs so we can travel with her. 11 days in Florida in November are not sounding pleasant right now. I'd also like to get her an MRI just to make sure everything is all there. Thinking I might want to restart B12? After a brief trial of gluten and milk, we are back to gfcf diet. She had horrible tantrums. I hope I don't second guess myself on that one again. She prefers hanging out in her room when she's not getting therapy or in school. Not sure whether to let her do her thing or push her to be social? Which leads me to my current state of mind, do we just let her be her or do we keep trying to make her one of us???? If only I knew that answer. Maybe in 6 months.......
Can't forget my sweet, sweet B. He was my toughest baby. I could not calm him for anything. He also had the worst tantrums. Now, God gave me the sweetest gift. He is such a lover and tries so hard to please everyone. Just worry that "lover" might get carried away come puberty. He so loves the girls. I wouldn't trade him for nothin'. He is finally thinking sports are okay. His favorites are swimming, tennis and soccer. Soccer went fairly poor last fall, so I keep holding off. Swimming went ok but I imagine it will be better for him next year. Tennis starts tomorrow. Hoping he doesn't giggle his way through it like last year. Surprisingly, he's gotten better at golf and can hit it now. Unfortunately, mommy got too close while trying to help him out and got bonked in the face by the club. Going to leave the golf lessons up to the pros from now on.
So...here's to another 6 months.
Tuesday, July 19, 2011
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