Tuesday, December 30, 2014

Weekly Progress Video #27

The last video of 2014! Thanks so much to everyone that has been a part of our journey so far…you have no idea how much you've helped, if only to help me maintain my sanity so I can keep pushing on! :)



Here's to a wonderful 2015!


In this video:
*Our third neurologist visit, one year since official diagnosis
*Had a good Christmas!
*I jinxed myself on his great sleep

Friday, December 26, 2014

Bubu's OT Progress

I recently received the third Occupational Therapy Evaluation Report. The first was his initial evaluation to set his goals for therapy. This one and the previous one are updates to those initial findings and progress on the goals set.

As promised, I made a video giving a rundown on the initial report and the progress made since, plus goals still in process.



Please click here if you cannot see the video above. And feel free to comment if you have a question regarding evaluations, what to expect, etc.


Tuesday, December 23, 2014

Weekly Progress Video #26

A VERY short video about the last few days…



I'll be back on Friday with a video on his OT reevaluation. I hope everyone has a great holiday and a great rest of the week! :)


In this video:
*Momma is sick!
*Doing great with the yes/no PECS
*learned to open doors!
*great sleep in spite of cold
*last week of 3 session days
*sporadic therapy appointments due to the holiday and our own appointments

Monday, December 22, 2014

Bubu at Disney World

We recently went to Disney World for the first time since Bu was officially diagnosed…and certainly for the first time since we've gotten to know about Bu's specific needs! Here is some information about the accommodations we were able to receive, and ways we helped Bu enjoy his trip.




Here's some stuff you should know to clarify what's said in the video:

1) Bu is 3 years old, he's on the GFCFSF diet, and he's on the autism spectrum. He doesn't speak (yet), is very sensory seeking (except for touch/tactile), and has hypotonia, which is low muscle tone. He is getting better with all of these things, but he cannot stand or walk for very long without getting fatigued, so he is carried or strolled more than a typical kid his age.

2) Bu gets his supplements several times a day in his "juice", which is typically a homemade, organic fruit-and-veggie puree mixed with water. This is why I personally bring organic baby food pouches or jars/tubs with us to the parks.

3) I took the supplements in "pill organizers" to the park, which was then put in my backpack. If we'd have stayed longer, I might have taken our refrigerated supplements with us and kept them at the hotel. When they would have NEEDED to come with us (such as, after checkout on the last day), I would have taken a separate lunchbox and filled it with ice at the hotel to keep it cool. I also would have added more ice at the parks (asking for free cups of water with lots of ice at any counter service restaurant!).

4) Bu is VERY picky about his chips, which is why I made a point to bring a big bag for each day into the park. At Animal Kingdom (I didn't notice at any other park), they had a booth that sold gluten free and vegan foods, which would have been great for Bu provided I also found a soy-free choice…but a SMALL bag of chips (which wasn't the kind Bu even likes) was SEVEN DOLLARS. Crazy.



Please comment or email me with any questions and I can either answer based on my experience, or I can find out for you. We have annual passes so if there's something in particular that can only be answered at the parks, let me know and I'll do my best to ask or find out next time we go!




Saturday, December 20, 2014

One year...

1) today makes one year since Bu got diagnosed with autism

2) this morning, he found his PEC card and brought it to me so I could ask him if he wanted water, and he could "say" yes

3) I just tried to trick him into accidentally "telling" me he wanted to stay inside, but he immediately caught on and appropriately gestured "yes" and "no" to end up in the bounce house. He's showing me that he understands most things he hears, and he's just been waiting for a way to reply to us.

I can't believe how far my guy has come, and I'm so excited to see what he's up to a year from now. 

Thursday, December 18, 2014

Weekly Progress Video #25



We had a great time this past weekend at Disney World! I'll be back on Monday with a video detailing our experience. In the meantime, please check out the video below (or click here if it isn't loading) to see what else we were up to this past week!

In this video:
*Disney World!
*Re-evaluations, PT details
*New therapy schedule
*Reconsidering ABA
*Brushing and Sensory Diet update
*Naps and good sleep! Still a bit sick…
*Supplements that were affected by our Disney trip
*Speech re-evaluation, YES/NO PECS
*Upcoming Neuro appointment


Saturday, December 13, 2014

A few of our favorite things...

Just thought I'd share...this has been one of Bu's favorite sensory "toys" this past year. It provides awesome vestibular input.


I've seen these exact swings go for $150-200 in special needs stores, but ikea sells them for $35 total. We spent an extra $10 on special hardware to hang it outside, but the price can't be compared! 


We've had it for almost a year now, and it's still in perfect shape, except for a teeny smoothie stain ;)

Wednesday, December 10, 2014

Weekly Progress Video #24

Boy, has this week been up and down! How is everyone else doing?



Please check the video out HERE if it isn't visible above.

In this video:
*not-favorite PT, not a great time
*he LOVES watching me play Tsum-Tsums!
*Sick :(
*Epsom salt baths for detox
*5HTP = turns out you should NOT cycle off it!
*Wilbarger Brushing Protocol, Sensory diet schedule
*Very irritable, very up-and-down moods, lots of anxiety and perseverations
*More playful, making up games

Have a great weekend, everybody!


Thursday, December 4, 2014

Weekly Progress Video #23




If you can't see the video above, click HERE to watch it on YouTube.

Hope everyone had a great holiday! :)



In this video:
*Sensory activity progress
*1 year in therapy!
*Thanksgiving
*ONE nap this week!
*lots of nighttime diaper leaks
*sleep update, not a fun wake-up
*Meastro Bu on the xylophone!
*fine motor activity: beading on shoelaces
*knocked on door to be let out of his room
*started TMG, considering tapering him off 5HTP
*The Weighted Compression vest is here!