Saturday, November 23, 2013

Halloween and some new gear

I'm behind on just about everything lately (including sending out thank you notes for Emma's birthday  so if you're wondering where they are know I'm working...or at least thinking of working on them), so it's no surprise that I'm behind in posting Halloween photos.

This year Julia decided she wanted to be an Angel and Emma was agreeable to wear the bunny rabbit costume Julia wore when she was in Kindergarten.  They looked so cute together - my Angel and Bunny.  I love how they are still into innocent costumes and I'm hoping they stay that way for another year or two.  

Julia brought her Trick or Treat for Unicef box again this year.  People must have remembered from last year because many people had some change ready to share.  She did much better this year than last year and was so proud that she could help other children by collecting spare change.

We used Emma's iPad to help her navigate Trick or Treating again.  I set up the Yes/No Answers app with two options for Emma:   Trick or Treat and Thank You.  She loved hitting the buttons and our neighbors all seemed thrilled to have her use it.  Julia helped Emma a lot by asking for her candy at the houses where steps were a barrier.  This year Emma kept good tabs on her Trick or Treat bag and was happy when she saw/heard the candy plop in it.

Speaking of candy - we have lots!  The chocolate was the first to go since we all pick at it.  Julia seems to love the lollipops, starburst and skittles the best and with the amount we have she currently has about a year supply so if you are in our neck of the woods and need  a sugar fix come on over!

Halloween was also the day that we picked up Emma's brand new power wheelchair!!!!!!!!  If you've been following along with our story you know we have been in appeals with our insurance company over this chair for about a year.  It was a frustrating process but that's all behind us now because IT'S HERE!!!!  and it was SOOO WORTH THE FIGHT!!!!!  Emma has taken to it wonderfully and is now navigating about our driveway on her own.  We do have a kill switch to keep her from danger but we are using it less and less as she is learning the ropes of safe driving.  I can't believe how quickly she is learning.  She is also going to school in it most days and learning how to navigate it inside school.  She is still very much a beginner but I'm excited about the opportunity for independence this will give Emma.  Already she has found power in her new mobility - using it to follow after her friends and to drive in the wrong direction on purpose when I tell her it's time to go inside the house.

Her chair is an Invacare TDX Spree and the color she chose is Bubble Gum.  She controls it with her head array that is made by ASL.  I think her head array is the curved.  The team wanted to get her a smaller one but I wanted this one because I found it kept her CIs on her head the best.  Trust me, keeping the CI magnet on Emma's head is a full time job some days so when you find something that doesn't knock them off you stick with it!  There are proximity switches in the head array and it's set up to go forward when she leans her head back on the switch, go right when she leans her head on the right switch and left when she leans on the left switch.  There are areas in the headrest that don't have a switch, too, and Emma quickly figured out where she can rest her head when she wants to relax and not move.  It's so amazing and humbling to see how quickly she is learning to navigate in her new chair.

The TDX Spree has the ability to tilt back in space which is how Emma prefers to sit so she can better control the head array.  The seat can also be raised ~5" so she can reach sinks and other places that are at a higher height.  We call her new chair "THE BEAST" because it truly is a beast sitting at about 400 lbs.  It has 4 programs - one is slow for indoor use, and the other 3 are increasingly faster speeds.  Emma LOVES the faster speeds so I usually put her on program 3 which is set at 40% of maximum speed.  I think it equates to almost 3 mph which doesn't sound fast until you realize she isn't the best at controlling herself in it yet.  We are thankful that it has a kill switch for us to remotely stop her from getting into a bad situation (can you believe insurance gave us a lot of hassle over adding this????  I mean, she was 5 years old when we ordered it for crying out loud!!!).

Emma's favorite thing to do in the chair right now is to drive over to people to give them a "High 5".  She really is a very social girl!  I can't believe she has only had this chair for about 3 weeks considering how good she is with it now.  We have to work on her stamina to drive long distances and to stop being such a busybody and resting every-single-time she sees something (which is pretty much everything!) that interests her otherwise it will take us a week to walk around the block!!!  But, I believe that everything will come together in time.

I am so very, very thankful that Emma has her new wheels.  I'm also very thankful that she has already left her mark on it through scrapes, which means to me that she is starting to spread her wings because she is READY!  

2 Comments from readers:

Unknown said...

I always fret about Thank You cards too, but everybody else who knows my situation is much more easy on me than i am on myself (thank God for great friends)and they are content with a verbal "Thank You" and when i try to explain they usually say "do not worry about it, i know how full your plate is". I am so excited for you!!!!! It is so funny to me being on my end of things because Tracy is right behind Emma in almost everything and i get so much insight on the latest gadget from reading your blog! We just received Tracy's gait trainer two weeks ago, SHE chose a "Pony" gait trainer...something completely different than what the therapist and i were thinking! A "Pony" was donated to the therapy center by a family who no longer needed it and Tracy took to it immediately and was trying her hardest to run in it! Last week we went to the school of medicine so Tracy could try out different computers, eye gaze devices, switches, etc. Again, Tracy took to the Tobii eye gaze system with Access language program immediately. Tracy was using the eye gaze and Access faster than the speech pathologist could explain how to use it! The first thing she said, "I want Bye-bye"!LOL! Then she said, "I want water", and "I want to smoosh (Play-Doh)"! Uhhh, there have been so many tears of joy around here lately!We will be looking into getting a mobile wheel chair in about a year maybe. Tracy's wheelchair now is the hot pink and everything is pink, pink, pink so i imagine the next one will be pink also. (My MIL does not understand my girls draw to pink since she only had two boys, no girls...i can't explain either, girls just sometimes like pink). It is so neat to hear about the head control device....that just seems so sci-fi, I never would have imagined! I am so happy for Emma's new found freedom, and she is so lucky to have such a sweet sister and best friend in Julia! Your children are just so precious and adorable and you seem to cherish every moment with them...that just seems so right and perfect...that is what i would tell anybody to do...cherish every moment you have with them, but for you i don't have to say it because it is so plain to see that you already do. Soooo, in your case i will just say "keep up the good work mama".

Unknown said...

Oh, P.S. we had to get some new Dafo leg braces for Tracy because it has been over a year since she got some new ones and because of all the walking she is doing now she was getting blisters. Guess what color she chose? Yep pink! Light pink straps with the hot pink hearts, lips,and X and O all over them, and light pink foam. It is the same as the first ones she had, but she does not remember those. He old ones were CRAZY with purple straps that hat green polka dots on them and a pink and purple swirly tattoo on the plastic, she got a lot of attention with those.