It's been 6 months

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.

Long Time, No Update

Still not sure what to think of biomed. Tinkering with "screwing it all". HUGE gains with B12 that have seemed to plateau after 1.5 year so we stopped it. Still giving other supplements - multi, ca, zinc, vit c. Still RO water. Still GFCF but thinking about not doing it anymore. Went to autism conference and the DAN drs just weren't that convincing. UGH! Way confused. Neuro dr. was very convincing with the brain inflammation stuff. Temple Rocks!

Continuing with ABA at home and school. She continues to improve all the time. Says "i want" for almost anything. Sometimes she needs prompting or visual cues. Very affectionate with mom, dad, gma. Potty training failure. Almost independant on the computer. Does great with mouse and getting around her favorite disney website. Still doesn't like to be touched when she is in pain. Still sensory crazy. Sleeping is better off B12 but still not perfect. She's still 3, so i'll cut her some slack there. Would prefer to sit in chair and watch bumblebee videos all day and stim. Able to go out to eat a few times. Able to attend church with only once incident. Able to go to brothers soccer game. Doesn't like to go to parties for more than an hour. Gets overwhelmed with lots of people. Still carrying around her figurines - prefers Little Einsteins. Loves school and now tolerates horse therapy.

Mom and Dad go along with life with a few stressful days of screaming. Some days of sadness. Brothers still seem unphased.

Summer 2010

Delaney has been much easier to take places this summer. She does have her moments of crying at night but we Uncle Benny. Yippee!! So much easier to travel now.

Her words are coming along nicely. She started fussing

New supplements

Last night we started new supplements - in addition to fish oil, vitaspectrum, calcium and b12, we are now giving magnesium, zinc and vit c. Still waiting on lab kits to redo some lab tests.

Delaney made it successfully through A's bball game. That was a HUGE milestone. She's also started sitting at the kitchen table. She's so much more affectionate with her dad and grandma's. Grandma J was so happy that Delaney would come to her when she stretched out her arms. Yippee! However, she still pushes me away occasionally and gives hugs where she backs up to you. Still prefers forehead kisses. Follows 2 step directions really well and rarely but occasionally puts 2 words together such as "my sausage" when she dropped it or "help,books" to get books down.

On a great note, the autism bill was passed in the state House of Representatives...now on to the Senate.

Slow and steady wins the race.

Back to Biomed

Just got back from Thoughtful House. Interestingly, I just happen to go on the same day the Dr. Wakefield was found guilty in England. Sounds like he's guilty but whatever. I think he means well. Biomed is just so freakin' confusing and overwhelming. It sounds convincing enough and I think we would regret not doing it. So....we are back to more pee and poop tests and then on to harsher stuff like Flagyl and Diflucan and maybe HBOT. Hope it works. Reading enough recovery stories to keep me going.

As far as ABA, it's been AMAZING. We have 2 wonderful ABA therapists who love Delaney so much. She also started school last month. We definitely think that has made a big difference. She held hands with a friend named Leo. He likes her and she's taking up with him some - so I'm told. Right now, she gets almost 3 hours 1:1 in school and 2-3 hours when she gets home. She started "adapted gymnastics" but I'm not sure we will continue. We are taking a break from OT (except what she gets at school). Hippotherapy starts soon.

Let's start out with her current behaviors that are good. She can follow 2 step commands, uses a lot of single word requests such as "lollipop", "stuck", "car", "bed", "night night", "downstairs", "chocolate" etc. However, she says occasional full random sentences. Very good at saying greeting people with hi and saying bye, bye spontaneously when they leave. Using "thank you" appropriately. She can tell you which show she wants to watch. She's pointing well but does not stretch her arm straight. Just learned to jump on the trampoline with her feet off the ground. She responds almost 100% of the time to her name. She did cuddle on the plane and also at times in our bed. However, I still don't get to hold her too much. She is just starting to look through books.

Now where she still struggles. She constantly repeats shows but sometimes it seems appropriate to what she's doing. She still rocks and bangs her head on the back of chairs and in her pack and play. Usually, she is "chanting" or repeating shows. She prefers to be alone and doesn't like to go to others houses. She still mouths things that are metal and eats books/papers. Lollipops are helping. She leans over chairs/tables before having a BM. Loves and craves deep pressure and swinging. Prefers to hangout in MeeMaw's pack and play rather than hangout with MeeMaw. We don't see a lot of tantrums, thankfully. She is still waking at night. She flaps her arms when excited and still stims on her hands/fingers.

Will send off labs this week and know a plan of action next week. Fun. Fun.

ABA update

Sweet little girl must know mommy has been having a tough week. It's hard to see so many other children D's age at the pool and in the neighborhood. It just magnifies her differences. However, just 6 short weeks into full-time ABA, Delaney just said that she missed me when I got home today and then proceeded to say "I play the drum" when it was her turn!! She also asked "Where are we going?" when we arrived at Reiman Garden's over the 4th of July. It's so weird how she can say such complete and normal sentences in the midst of jibberish. Just so happy to know that she WILL be able to fully communicate someday.

Ups and Downs of Autism

So, today starts off great!! Delaney is throwing a ball back and forth with me. Someone from Rescare came and helped me apply for Medicaid. I'm beyond excited that we would qualify based on her diagnoses (and not finances) and that they would cover ABA (if we can find a therapist that takes medicaid). It's going to be a pain in the arse to apply but sounds worth it. We also get 80 hours every 6 months of respite. YAHOO! THEN, all heck broke lose. Her Speech Therapist came. Delaney just doesn't like to work with the therapists. She screamed and threw a complete fit the whole time. It was awful. She just wanted me. Then she threw another fit refusing the fish oil/vitamin mix. So, I just feel like firing all of the therapists, move to Texas, throw her in a pool and do the therapy myself. Why do we have to put these kids through suffering just to get them progress? I really struggle with it all. Oh, and then just when I'm down in the dumps, she turns her head and looks at her brother when he walks in from school. Of course, he has to say that she's never done that before and he was happy. Up and Down.