"walking clothes"

Max has recently taken quite an interest in his clothes. He has a few favorite shirts that he insists on changing into when at home...and he prefers to have no shoes, socks or bottoms on. Love that he has decided what feels best for him. And he has also decided on particular "outfits" for certain activities. This is his chosen one for going on walks....he has chosen it three times in a row. Phineas and Ferb shirt and tiger striped pajama pants. Too funny!  

the schedule master

Max is really interested in his schedule recently. It's so wonderful that he's understanding the power of knowing the activities of his day /week and expressing what he wants. Very exciting!

This weekend Max decided that since Gina had stopped by, they should go and visit their friend Aspasia. So he wrote in "Sia"...and sure enough that is where he took Gina on their walk.

chocolate balls

Max LOVES anything chocolate...but of course I don't want to give him chocolate 24/7. AND he also has limited textures that he will eat so when I found this recipe last year, I had a feeling it would be a win win! Healthy, yummy and easy!

He soooooo enjoys these "chocolate balls" (aka known as "Magic 5 Snack Bites by Kris Carr - http://kriscarr.com/recipe/magic-5-snack-bites/).

Last night, he not only requested them using his AAC (making great progress with it lately...very exciting!) but copied my silly "chocolate ball dance" that I was doing to make him laugh as we made them. (Earlier he voluntarily got out of his chair to dance with me...first time ever!)

Too funny/amazing/adorable and just had to share (please excuse my obnoxious singing voice...but I'll embarrass myself any day for this kiddo)!...here is a snippet of the dance! Enjoy! (And by the way, try out the recipe...so good AND healthy!) YAY!

animal sounds

 

Max hasn't wanted to do animal sounds for years...and now (with some bribery), he will. LOVE! :) I always am so thrilled to hear his sweet little voice.

 

 

BAHA surgery

When Max was three months old, he was fitted with BTE (behind the ear) hearing aids. They worked ok but two issues:

1) They didn't stay in very well due to his ear formation (quite common with individuals with CHARGE)
2) His hearing loss continued to worsen and needed something more powerful. 

Two years ago, we switched to the BAHA, which works via bone conduction, and have been using dual processors on a softband. It's been great, and we have been eagerly awaiting the FDA approval of the cool new BAHA Attract (which uses a magnet instead of the abutment). However, we met with Max's ENT surgeon on Monday and have decided instead to go with the BAHA Connect (see below). Because of his level of hearing loss, he needs the strongest and most direct route for sound.

The first surgery (currently being scheduled) will be to implant the titanium fixture behind the ear. It will take approximately 4-6 months for the implanted portion to become osseointegrated to the bone of the skull. Once osseointegration is completed, he will have another surgery for the abutment component.

While surgery and recovery is certainly never easy, I am very excited about giving Max even more direct route to sound. In addition to the clarity of this implanted processor, two other bonuses are:

1) He won't have to wear the softband any more.

2) There is new wireless technology for this processor, which will make accessibility to ipads, televisions, phones easier.

This has been a long process to find the best hearing solution for him, but it should be worth it!

http://www.cochlear.com/wps/wcm/connect/intl/home/discover/baha-bone-conduction-implants/baha-connect-system/baha-connect-system