Updates...it's been a long time!

So since Maddie has pulled up, she's been cruising all over the place, I feel that she'll be walking by her 2 year birthday!! She's also able to understand simple commands: bang, splash, hit, stop, no, Maddie, roll-it, high five, raise your hands, roll the ball, and point to her nose/head/tummy when asked where they are. She can sign her version of all done, and wave hi/bye. We are starting to introduce american sign language (AML) to her as it's slightly different from baby sign language and much more comprehensive. Even her teachers work with the class to learn AML, which is so helpful and supportive.

In January Maddie had 2 ear infections which brings her to +7 in the past year, I don't have the exact number. It took a month to see the ENT, and then it's another 3 months before they can perform her tubes surgery so hopefully there will be a cancellation and no ear infections! That surgery is scheduled for April.

Also due to switching to Matt's insurance, Maddie can get physical therapy weekly and she's also started speech and feeding therapy weekly, however the recommendation is for it to be 2 x's a week. We have to appeal with HR to cover 104 sessions for 26 weeks, but most likely it will be 208 for the year, hopefully they will accept that request. I mean, she doesn't speak and only verbalizes ma-ma, da-da, ha, ga, and la but indiscriminately. At least we started with the sign language early and have a way for her to communicate with us, so I feel this is quite important.

We have also been approved to visit a developmental pediatrician at Kennedy Krieger Institute which is a comprehensive hospital that has various multi-diciplinary programs to evaluate and treat the child as an individual, not just the separate conditions that are present. They have a short term intensive physical therapy program that I'd like to pursue, but we'll see what the doctor says. If anything, he will confirm that we are doing everything we can for her. I have a number of questions, but my main concern is that we aren't as aggressive with her in terms of therapy.

Originally our appointment was scheduled for June, but I called the office and she moved it to March, thanks Chanelle!!! So we will be in Baltimore for 2 days and will see the developmental pediatrician who has extensive experience working with disabled children and developmentally disabled and children with genetic issues. We also are going to see one of their physical therapists for an evaluation. It will be interesting to see what they say.

Finally, Maddie's eyes are good more than 50% of the time and with patching and growth may become stronger, so our optometrist doesn't want to perform surgery which could impact the progress that has already been done. So we will continue to have checkups and at age 3 evaluate the need for surgery, which she anticipates. So that's only next year, which I can't believe!

One more thing, Maddie definitely has an opinion. She will let you know when she's unhappy which typically consists of rolling-it (her sign for all done), high screeching, and the latest is clawing at my face and pulling my hair. I try to move out of her way, but when she first started it I didn't expect it so came to work with scratches on my face!! I'm not sure my co-workers believed my story! =)

That's all for now, when Maddie doesn't have a cold or ear infection, she makes great progress. Those really slow down her progress. We also got a handi-capped parking permit for Maddie, it's not always easy to carry a 30 lb child and all her stuff so this has come in handy and if the government won't/can't help us, at least we can get a good parking spot!!!