Friday, January 28, 2011

I Have to Admit It's Getting Better, It's Getting Better All The Time

I've been singing that Beatles song to myself a bit this week. Like a little pop-mantra. That and 'Ooo child, things are gonna get easier.  Ooo-oo things will get brighter.'  Pop music for the tough times in life.  And it's been working.  That and the fact that things really are getting better.

Myffy did her first day of ABA last Saturday and has done it everyday since, just like Lu, and she's doing awesome.  It's tough.  She's always wanted to get up into Lu's chair because Lu got so much attention in the chair, but now that she's really there and has to stay and do work, well, it doesn't seem quite as exciting anymore.  But she has had a lot of success and it's so cute to see her clapping and cheering for herself along with everyone else when she matches objects or imitates gestures. Go Myffy go!  Go Myffy go!

I'm also really excited about the new Lineagen Genetic testing kit that I just received in the mail.  My original intention was just to test Myffy, but after talking to a genetic counselor on the phone for awhile we decided to test Lu first since she has the confirmed diagnosis and see what comes up for her.  Only about 20% of the test groups with a confirmed diagnosis of Autism test positive for the exact chromosomal abnormalities targeted by this test, so it's far from a sure thing, but considering our family history, Lu is a good candidate.  If something shows up for her, then we'll test Myffy for the same thing.  So we'll see how that goes.  The point of doing the testing is to be able to get Myffy services earlier than Lu did witihout needing to demonstrate as much of a delay.  Because the thing is that Myffy is really quite advanced for her age.  She has a relatively large vocabulary and a lot of skills. In order to be eligible for the program that Lu is now benefitting from Myffy would need to either demonstrage a 50% delay for her age (which I don't think she has at the moment) or have an established condition, like chromosomal abnormality (Downs Syndrome for example or the Fragile X category of Autism) that puts her into an At Risk category for Developmental Delay.

Myffy went to the pediatrician this past week for her slightly late 15 month well check (she was sick last time we went in so it couldn't really be a well check then) and to get an AZEIP referral.  That's Arizona Early Intervention Program.  We started that process with Lu around this time last year.  Which now seems so very long ago.  So next week we have Myffy's allergy appointment Tuesday morning, her appointment with Lu's diagnosing psychologist Tuesday afternoon while Lu is in school, and the AZEIP intake appointment Wednesday afternoon, with therapy for both girls everyday all around those appointments.  Stew is doing a two day parent training session at SARRC (that's the Southwest Autism Research and Resource Center) in Phoenix on Monday and Tuesday and will pick up samples of all the amino acid liquid diet options from the nutritionist at Phoenix Children's Hopsital while he's there.  When he gets back we're planning to spend a week or so trying to get Lu on whichever drink is her favorite, and then the next week will start the elimination diet.  We saw Lu's GI this past Tuesday when we were finally able to snag an appointment someone else cancelled and went over all the EE options in greater detail. And as we talked it over with her, it all seemed much more manageable than I orignally thought.  And in a way Lu's been making it seem easier this week by refusing toast and milk on her own.  It does seem like they bother her when she eats them.  I'm worried about her losing weight and slipping backwards right now, but if she doesn't even want to eat the things she's not supposed to eat, what else can we do but move forward with this?
And so, forward we go.  Things can only get better.

1 comment:

Colleen said...

Jen, I am SOOOO glad things are looking brighter. You guys are in our thoughts and prayers always. Lots of love.