Tuesday, January 13, 2015

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!


Wednesday, October 15, 2014

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!


Monday, October 6, 2014


I have been researching the idea of medications for Max to help with some of his OCD and anxiety issues. He has always had them to some degree but they seem to be intensifying and interrupting his life more and more.

We have been doing ABA for 10-20 hours per week, which includes several behavior programs. Now it seems like it might be time for additional support.

Today was our first meeting with the doctor, and on Wednesday he meets with Max. My friend came with me to share his observations too, which was really helpful.

While I was hesitant this summer, I am now convinced I want to try this and see what happens. If the medication could provide some relief...some calmness...to my little boy's brain and body, I would be so relieved, excited...to the moon joyful!

pumpkin patch

Yesterday was an absolutely GORGEOUS day here...perfect for an afternoon at Bellewood Acres. We enjoyed yummy cocktails while Max loved his little cider doughnuts...all in this beautiful scenery and warm sun.
Max wasn't feeling too great but still was slightly interested in exploring. All in all...a delightful afternoon!