Foto Friday Sunday vol. 10

A bit of this and a bit of that...

Last Saturday's Impromptu Outing started with an early afternoon drive down Pacific Coast Highway. Despite being sunny and warm, it was too windy for Miss Gracie's eyes and trach, so we didn't stop at any of the beaches (much to Preston's dismay). We just meandered and eventually ended up at South Coast Plaza (a very cool, but budget unfriendly shopping mall). We walked around a bit, did some dreamy window shopping and then the rest of the afternoon and evening unfolded as follows...


The boys were first on the carousel (which instead of horses, now has bunnies to ride for Easter)

Next it was the girls' turn


Both kids (and their parents!) loved it! We were so bummed that we only had cell phones with us - - none of the action shots turned out!

Next we headed to dinner, where both kids (John and Preston) were fairly well-behaved!
Gracie, however, was Miss Fast Fingers and reached for everything on the table... including my Margarita! It's the first one I've had in ages and I had to share the salt and lime with my not yet 6 year-old daughter! She really liked it... too funny!

Next we were off to Brookstone to listen to the iPod towers they have blasting as you walk by. Preston insisted on dancing around... so we did. Nothing like dancing in public with a 22 month-old to make you feel young and alive! Miss Gracie was parked right next to the tower with her hand and foot firmly planted on the speaker. She was groovin' to the beat and lovin' it!

Then... the big event... a visit with the Easter Bunny! This was a first for both kids (this would have been terrifying for Gracie just last year) and they had so much fun! We took a family photo that was such a summary of the happiness and fun of the day, that we just had to buy it!

(Clearly this was unplanned, for with the exception of Gracie's outfit, our attire was less than "springy!")

This one of the kids is my favorite... it melts my heart for so many reasons... pride for Gracie and all she's tolerating in a busy day, new experiences, Preston's expression, his little hands on his lap... all so sweet :-).
We topped off the evening with ice cream, which is always a good way to end any day!

Gracie's IEP went very well. It was, without a doubt, the most efficiently run, well-organized IEP she's had to date. I'm excited about her team... they all have experience with DeafBlind students and they've worked together successfully for years. We officially established her placement in the "Multiply Disabled Deaf and Hard of Hearing/Total Communication Class," which allowed the district to post the job for Gracie's Health Aid. We will have another IEP 30 days after she starts school to establish goals for the next year, re-evaluate services, etc. In the meantime, Gracie will attend three days a week for three hours. (Unfortunately, she can't start until her health aid is hired and the medical orders paperwork is completed by both GI and Pulmonology. This is proving to be my next challenge as their sense of urgency is not the same as mine. Since Spring Break is next week, we are shooting for a start date the week of the 20th... FIVE months from her last day of school up north. Ugh.)

Anyway, if she adjusts well and her stamina is good, we will add in the other days and then extend her day by one more hour (the full Kindergarten day is four hours). During her time at school, she will receive:
- Group OT (30 minutes per week, plus consultation)
- Group Speech/Aural Rehabilitation (30 minutes per week, plus consultation)
- Individual Speech/Aural Rehabilitation (30 minutes per week, plus consultation)
- Audiological Services (15 minutes twice per month for testing and amplification monitoring)
- Vision Services (will have a functional vision assessment to determine service and consult recommendation; for first 30 days, the service will be twice per month for 30 minutes)
- Individual PT (30 minutes per month consultation)

- Assistive Technology Services (will be re-visited at 30-day meeting; previously Gracie had an adaptive keyboard - with larger, easier to see keys and a switch to work with at the computer, as well as software to use for various lessons/teaching strategies.)
- Adaptive Physical Education (will participate weekly with the class and the APE instructor will then provide recommendation for assessment and services at the 30-day meeting)

The entire school team will also consult with the OT and PT at the Medical Therapy Unit. Her schedule at that clinic (for now) is OT and PT for 30 minutes back-to-back once a week and combined OT/PT for 30 minutes once a week. The later will be increased to a back-to-back hour eventually.

Speaking of therapy clinic, Gracie was, as previously mentioned, a total ROCKSTAR at her first clinic therapy session last Monday! The moment we entered the PT room (a room she's not yet been in), she signed "up" and "play" and pointed to where she wanted to go! I was so excited that she was excited! She did great, tolerating the activities and following signed instructions with modeling. She was, however, her typical "sneaky" and "cheating" self (said with a smile and heart full of love... not meant as insults!) and tried at every chance to get horizontal! Give her a moment of down time sitting up and she's trying to get down. That's nothing new... and neither is working on it! She cried when I signed that it was time to go! She used to cry when we arrived at places and wanted to go!!! YAY!

We go back this Monday and Thursday.

More Foto Friday...

Faces


This sums up Gracie's Tuesday and most of her nights as of late. Even though she is so upset, there actually are things I love about this picture... her hair that rivals Einstein's :-), she's signing "up" furiously (thus the blurry hand), she had just signed "sit, up" and pointed at that very bench - - this expression of anger was what I got in return for obliging her request!



Spring Training

And last, but certainly not least, our new nephew/cousin...