Thursday, January 29, 2015

Weekly Progress Video #31

Saying Buh-Bye to our Dream Team this week! :( 

Also, I totally meant "That's a wrap for Week 31!" at the end. My brain is too frazzled to remember dates, apparently. 

In this video:
*Off ALL his supplements for upcoming bloodwork
*Momma is SICK....hoping Bu doesn't catch this!
*Dan Marino Walk
*Bu is constipated again...after a long while of NOT
*a plan to reintroduce supplements
*Bu's speech therapist is leaving...TOMORROW.

Monday, January 26, 2015

Terrible, horrible, no good, very bad day.

Just found out that Bu's speech therapist quit, and her last day is this Friday.

Sobbed during the entire drive home. I feel like someone died. I don't know what to do.

I don't "officially" know yet...a fellow mom at the center let me know and told me that the therapist wanted to tell me herself, so not to say anything yet. I just know I'm going to cry again once she tells me and it's for real.

They'll probably put him with a bunch of different people so he can keep his schedule. Or I could request someone in particular, but I don't know who I'd ask for because I'm unfamiliar with all but a couple, and they suck. Plus, asking for someone in particular would probably mean changing his schedule again.

I'm just so sad. He was doing so good with her. She got through to him in a way that no other therapist did, and quicker than even his favorite OT. Plus I finally, after over a year, had my dream team of perfect therapists and perfect scheduling, and now it's back to square one. The only way this could be worse is if it was the OT leaving.

Thursday, January 22, 2015

Weekly Progress Video #30

I have SO MUCH anxiety about a choice I had to make regarding Bu's supplements…here's Week 30!

Cross your fingers, keep us in your thoughts, pray…whatever you can do to send us positive energy and help us get through this next week and the recovery that may follow!

In this video:
*Geneticist appointment...
*Upcoming bloodwork, and having to go supplement-free for 7-10 days
*so social! One of the reasons I'm scared to go off supplements...
*very tired without supplements
*tolerating "Scooby Doo" movies and Rio 2!
*he tried to eat cheese :/
*he said "ok!" and "tete"

Tuesday, January 20, 2015


I always do "Day In The Life" videos every 3 months, since before Bu was diagnosed…it's just something that's fun, and it's always interesting how our day-to-day changes in just a few weeks.

I actually have been so busy lately that's it's been a whole SIX months since our last DITL video! So I thought I'd share the latest one here since it has to do with our supplements, homeschool, etc :)

Thursday, January 15, 2015

Weekly Progress Video #29

New supplement, and a rocky week of sleep…check out Week 29!

In this video:
*my strategy for homeschooling is working out!
*started Niacinamide to help in case he's getting too many methyl donors...
*sleep is being affected by something?
*possibly allergic to watermelon?
*great haircut experience!
*geneticist appointment tomorrow!

Wednesday, January 14, 2015

A bit about our homeschooling...

I wanted to share a bit about our homeschooling, ways I organize tasks, and typical activities for our homeschool sessions.

I got myself a nifty weekly calendar in the Target Dollar Spot at the beginning of the year, and every Saturday I fill each weekday with 5-6 tasks that I hope to get done each day. On Sundays, I collect the materials (in case I need to make or build anything for a sensory activity) and print out any worksheets necessary.

I usually google the topic of the week (currently, one letter and one number a week) and print developmental-age appropriate worksheets that come up. I try to find one dot-a-dot sheet for each concept (Bu LOVES dot-a-dots) and a tracing sheet. If I can't find one I like or want more worksheets than I can find online for free, then I make my own with highlighters or markers. 

I mostly aim to reinforce the concepts he's learning in Occupational Therapy, while using a lot of labeling and trying to engage Bu verbally so we can work on his Speech and Vocabulary at the same time. I know he may not be cognitively ready to recite his ABCs or learn to count, but he has surprised me before with how quickly he picks up certain concepts, particularly relating to patterns, and he can usually point out a letter, shape, or color when asked to identify one out of a group. My main goal is working on his engagement and attention while cementing what he's taught at therapy, and everything else he may pick up is a wonderful bonus. 

The most important part of any therapy or teaching is coming up with a reward system. I find this holds true for most children, but it's particularly important in order to maintain Bu's attention. As it is, I can get him to sit at his table for 15-25 minutes consistently working, without ANY screens on. This is an EXTRAORDINARY change from just a few months ago. My secret is to give Bu several mini-tasks (for example, I may break a sorting activity into 4 segments rather than asking him to sort the whole pile at once) and I stop to reward him at the end of each mini-task. Right now, I keep a bottle of bubbles next to me while we work, so he can see his reward. He knows he doesn't get bubbles until he's done, so he completes a task even when he doesn't really want to. The key is to be consistent. I don't give him his bubbles until he's finished with what I've asked (even if it's with a lot of help, he MUST finish what he starts) but I also don't withhold rewards. Once I say he can have something, he knows he will have it…it's in this way that he can trust that even though he doesn't want to stack that last block, he can be sure that once he does, he will definitely get his bubbles!

Eventually bubbles will no longer hold his interest, so I'm trying to find other ways to reward him. Bu actually tasted his first organic lollipop today after his homeschooling session and he HATED IT! He's not much for sweets…which is just as well, because I'm not much for using food as a reward. I'm just going to have to keep looking for more things that he's willing to work for! 

I hope this has helped, and please feel free to ask any questions you'd like regarding our homeschooling in the comments or by email! 

Wednesday, January 7, 2015

Weekly Progress Video #28

Some new supplements, and back to our old routine. It's week 28!

Click here to see the video directly on YouTube, and please leave me a comment if you have any advice for our upcoming appointment with the geneticist!

**I meant Recommended Daily Allowance ;)

In this video:
*back to our normal therapy schedule after the holidays, kind of shaky
*adjusting supplements to help his sleep
*he's acknowledging his little cousins!!!
*Upcoming geneticist appointment for MTHFR testing
*light switch mastery!

Tuesday, January 6, 2015

Goals, Revisited

A review of the goals we meant to accomplish in the last 6 months, and goals I hope to accomplish for or with Bu in the next 6 months

Any advice or questions are welcome! :)

In this video:
-A review of the July-December 2014 goals and to-dos
-New goals for January-June 2015, including: continue using utensils, successful hearing testing, self care and grooming

Thursday, January 1, 2015


Perfect way to start the year!!!

Bubu's baby cousins are visiting, and one of them slipped and fell. He actually walked over and tried to help lift the baby up off the floor!!! He stood behind his cousin, linked his arms under the baby's, and tried his hardest to pull him to standing. He recognized that his cousin needed help and got involved!!!

I'm sure I don't need to tell you how many of us cried lol