Learner's Permit

Emma has been spending a lot of time in her power chair now that we have the fancy new minivan to help transport it.  She is getting really good at driving it and I've started to let her drive herself around indoors in areas where there is a lot of room - like Target, hospitals, the mall, etc.  These are harder areas to navigate since there is not as much room for error as there is with the great outdoors and Emma is rising to the challenge.

Here are some videos taken of her driving.

The first one is from April and we were in Target.  You can see she isn't driving much and had a harder time hitting the switches in her head rest to move the chair.  We adjusted the head rest a bit and it helped her get better with driving.

The second and third are of her driving in the hospital hallway while Julia was doing a physical therapy session.  As you can see she is doing much better and is interested in getting up close to things and touching them.  In the one video she stopped at the wall and touched it and the railing.  She is very curious about touching things since she now has the power to do that in her power chair.  I had no idea she wanted to touch so many things or I would have had her touching things before!

I have more videos of her outside but the computer is slow today.  Right now we are at the point where she can drive from the back of our driveway to the front.  This is major progress.  She also has been driving around outside near the kids when they are playing without running them over (mostly....I keep the kill switch close at hand to ensure no casualties!).  The one thing she keeps wanting to do is drive out in the street so we are working on teaching her no street.  It's funny - she is going through the same stages using her power wheelchair that toddlers go through when they start to walk.  They bump into things and learn how to avoid bumping into things.  They try and run in the street and {hopefully} learn not to go in the street.  They run away when parents tell them to come here and Emma is doing all of this.  When it was time to come in the other day and Chris told her to drive to the back of the house Emma drove in the other direction because she didn't want to come in!  And she gets mad when we take control of the chair to move her somewhere she doesn't want to go.  Emma is starting to get the hang of navigating herself in this world and it's so wonderful to see!

Of course, when there are people to be watched she often comes to a dead stop to observe all the going ons but even that is starting to get better, too!

Our new Wheelchair Conversion Van

BIG things are happening in our life.  I feel so very blessed on a daily basis and know that many of the happenings are the result of letting God work His magic.

One BIG thing that happened is we purchased a wheelchair accessible van.  WOWZA!  We have been thinking and wanting one of these vans for a long time now but have not been able to find one that we can afford.  The price tag on these vans are ridiculous for a minivan - up to $65K new and the used ones are typically upwards of $30K.  At that price, we'll take two please!  Ha!

We told pretty much everyone we know that we are on the lookout for a wheelchair van and our wonderful social worker forwarded me information on one that a local family was selling.  It was a fairly new model - 2010 - and had low miles.  It also had the rear entry option that we thought would work best for our family.  There was a lot of details that we had to work out for us to buy this van since we were buying it from a private party, the owner was deceased and it was registered in a different state, but it all came together so nicely in the end.  Let me just say that I have NO doubt that this van was meant to come to Emma.  All along the way of us purchasing this van I could feel my Dad was at work...and Mom, too.  Thanks, Mom!  The owner of the van recently passed away and that is the reason the family was selling it.  I won't get into all the details, but let me say that it became clear to both us and the sellers that my Dad and the original owner met up in heaven and arranged the whole thing.

And now we have a wheelchair accessible van!!!!!!  A van that Emma loves to sit in more than she loves to sit in the driveway and watch all the happenings in the neighborhood - and that is saying a LOT.  This van opens up a lot of opportunities for us with the most exciting one being that we can now take Emma places with her power wheelchair!  As she gets better at driving her chair and is starting to enjoy the bit of independence that it gives her we want to expand her driving capabilities by teaching her to drive in areas with more people (like the mall).  The van also lets us run several errands without having all the lifting involved with getting Emma in and out of her car seat and the chair in and out of the car.

NOTE:  We were just testing how the chair fits in the car in the video above.  We do have a seatbelt for Emma that attaches to the car in addition to her chest harness that is not shown in this video.

Since there are many different styles of wheelchair vans, I'll give a few details on our conversion for families considering which van will work best for them.

• We chose a rear entry.  This seems to work best in our area since:  1.)  All the handicapped spots at the places we go are frequently taken and we need to park in a regular spot and a side entry wouldn't really work for a regular parking space  and 2.)  We go into the city a lot and nearly all the handicapped meters are at the end of a block or before a driveway so no one can legally park behind us making it easy to use a rear entry option

• The second row seating has seats that flip up.  If both seats are flipped up, then you can fit two wheelchairs in the ramp area.  We always have one chair flipped down for Julia and that works great for us.  Emma's manual chair is small so it can go right next to Julia if Emma is transported in her manual chair.  Mostly, Emma likes to travel in her power chair and that is much bigger so it fits in the back section of the van.  At first I didn't like Emma sitting so far back from me but she LOVES driving in the car in her power chair and I've gotten used to it pretty quickly and now don't mind it.  We can also flip down the other chair in the second row and take along a friend or family member for a ride or we can put Emma's car seat there for long trips when we don't want her to travel in her wheelchair.  

• The tie downs that came with the car are a belt style.  I have to say they work fine but are a bit annoying for the frequency that we go in and out of the car.  We are a VERY active family.  There are other tie down options that are quicker to use and we think we might change the tie downs in the near future.  Stay tuned.
• Overall, we are highly satisfied with this van configuration so far (click here to see the manufacturer details on the conversion in our van).  There are trade-offs with both side and rear configurations but this conversion seems to work better for us than I anticipated.  Already I've been to several parking lots with no handicapped spots left and the ability to park in a regular space with the rear entry was a big help.  

Side note:  Several weeks ago I threw my back out doing laundry - not that I needed one but it gives me yet another reason to find a reason to hate doing laundry!  It was so bad that I could hardly move for a couple of days.  NOT a good thing to have happen when your job is Mom to a non-mobile cutie pie.  I was seriously scared about what I would do should it not get better quickly.

Thankfully, several trips to the chiropractor and several weeks later my back is doing much better.  I am very aware of how important it is to keep my back in shape for the long haul - Emma is only 6 after all - and plan to add in more strength training at the gym.  This new van has already had a positive effect on my back!

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!  

Endless summer fun

It's unheard of that we would get a 3 week stretch of temperatures in the the 80s in August but it is happening!  So, while we have it we're taking full advantage by hitting a lot of fun outdoor events.  It feels strange to be able to do so many outdoor activities in August.  Emma doesn't tolerate the heat too well so we usually wind up finding indoor fun options in July and August.

We continued our field trip fun week with a tour of the Herr's potato chip factory.  This place is actually farther away from my house than I expected.  And we hit more construction delays and traffic than I expected.  So I wasn't surprised when we showed up at 10:10 for our 9:50 appointment and didn't see any of our friends there.

When we went to the registration desk after much discussion and flipping through papers I found out that my girlfriend had, indeed, changed the tour from Tues. to Wed. due to the crazy rain we had but I somehow missed the message that our tour time was changed as well.  I thought we were too late to enjoy the tour when, in fact, we were about 1.5 hours too early!  What to do, what to do?  I haven't really ever had this problem before as we tend to run on the late side of things.  The factory is in the middle of what appears to me to be nowhere although I'm sure the people that live there would be able to set me straight.  I was banking on that when I asked the girl behind the counter if there is anything to do while we wait.  The one girl was clearly too young so she just laughed at me - I immediately disliked her.  The other girl - God bless her - suggested we check out a park down the road and off we went with a stash of potato chips bought at the factory store.  We found the park easily and were really excited to see that it was actually a HUGE, fantastic park and a great place to visit in and of itself let alone as a time-killer before an appointment.  The girls played and snacked and I snapped a few photos before we headed back for the tour that included a short video, a walk through the pretzel and potato chip operation, and snacks.  We even were able to try hot potato chips right off the production line, which was big hit with all the children.

The park would have been better with our jogging stroller instead of the wheelchair.

I sure would have loved exploring the trails a bit more, but the wheels weren't suitable for it.  Emma didn't mind!

A few of the crew that toured.  The rest headed to the great park before heading home so I missed snapping a complete group photo.

We ended our field trip fun week with a trip to a local garden estate for some Friday fun.  We became members in June and are hoping that the wide paths will be a great place for Emma to practice driving her power wheelchair.  We are ever hopeful even though we are still in appeals on the denial.  Still, it's a great place to explore and since lots of our friends have memberships it's a good meet-up destination.

We have 2 more full weeks of summer vacation.  I wonder what we'll do next???  We have a few more fun adventures planned so stay tuned...

Progress, softball and other updates

We are fully immersed with life!  Is that a fancy way of saying we are busy or what??!!!

Emma has been getting glowing reports from school since Spring Break.  I mean, it is a bit ridiculous how good they are and I'm actually getting calls with the therapists so excited about her progress that they just have to call and tell me rather than write it in her communication notebook.  They really are that excited and I'm actually taking time to bask in the glow of the good reports!  I don't get them too often and I have noticed that they usually come after long breaks from school....so Emma's refusal to do anything that seemed like a bit of physical work during Spring Break seems to be paying off in dividends.  That's my girl!

We are still in tour mode of schools for Emma's kindergarten and likely her elementary school education.  We have a couple more tours and evaluations lined up and then I guess we'll meet with our school district to discuss our thoughts before we as a team decide her placement.  I do think it will be a hard decision, though, with pros and cons to the various placements.  We might even wind up with a hybrid plan since the district seems very open to creating an education placement specifically for Emma that addresses our wants for Emma.  Stay tuned for further details.

Julia has been enjoying her first softball season.  When asked if she wanted to go on a special lunch cruise on the river she declined in favor of her softball game that is scheduled at the same time.  She has been practicing a lot and it is paying off.  Sunday she had her first hit at bat and then had another hit as an RBI.  Way to go, Julia!  At tonight's game she had another two hits out of three at bats and her confidence in her abilities is gaining with each game.  We are excited to see how the season unfold for her and her team.  Tonight they had their first win and the girls were fired up over winning.  I just love all the energy they have and wish I could bottle a bit for me.

At school Julia attended an assembly for a movie about a child in a wheelchair and his friend who could walk.  Julia didn't mention it to me until the school told me about it and so I asked her to tell me about the movie.  She told me it was about a boy in a wheelchair who didn't have a ramp to get outside his house and play in the yard so when his friend came over to ask him to play he couldn't.  The friend then got some wood and built a ramp so the child in the wheelchair could leave the porch and wheel down to the yard to play.  Julia liked that the friend helped but didn't really comment on the wheelchair.  I took this opportunity to ask her some questions about what she thought about having a sister in a wheelchair.  She told me that she doesn't think Emma minds using a wheelchair and I agreed with her.  She then told me she loves having a sister in a wheelchair because Emma wins lots of prizes and she  shares them with the family.  I didn't understand this so Julia told me that Emma gets to go to lots of amusement parks, special rides on the Blimp, tickets to Disney on Ice and that it's just great because she always lets Julia go with her!  So there you have it - I'm so glad I asked ;-)

As for us, well, Chris is glad to be back at work in his normal routine after a week long stint at jury duty and I've been doing a lot of spring cleaning and still have a long ways to go.  It keeps getting cut short because of all the insurance calls (appeals in progress for the powerchair denials...), kindergarten legwork and visits along with the never ending sea of paperwork that I try and fit into the few days a week where I have a few hours without children around.  Plus I'm trying to purge a lot of our possessions and it just isn't going as easy as I thought because it seems I have a proclivity to want to hang on to things that I'm not longer using for "just in case."  Maybe it's time to watch an episode of Hoarders to kick me into high gear?  Knowing that we will eventually move again keeps me from moving this task to the bottom of my to do list where I would like it.

It is with sadness that I tell you sweet Gavin earned his angel wings.  RIP our little superhero.  Our prayers are with your family.

Look Ma, no hands!

Emma's doing really well with driving her power wheelchair now that she is able to control it with head switches.  The head switches have been on loan for a couple of months and I *think* we need to give them back this month, but I'm hoping her team will see the video below and let us keep them a bit longer because Emma loves to drive her chair!  (Note:  Yes, I know she is missing a show in the video. I also know her feet are not strapped down.  There is a good reason for both, I'm just choosing not to tell it here....)



A few key things you can see in this video show just how skilled Emma is getting at driving her chair.

• She wants to touch our car so badly that she moves her chair so she can touch the car, adjusting her driving a bit to get closer to touch it, without driving into or bumping into our car.  So cool!  
• When she hits the lawn chair and Chris tells her to stop she pulls her head forward, which stops her motion.  
• She doesn't have a reverse option yet and has learned to turn herself around in a circle so she can then drive forwards to areas that were previously behind her.  
• With the boxes, too, you can see that she stops before she hits them (for the most part;  we had been playing a game of knock the boxes over before I took the video) except for when we tell her to plow the boxes over.  
• She is getting really good at knowing when to stop and fine tuning her driving and this has all been since we've had the head switches so she's acquired these skills in about 8 weeks with only practicing on fair weather days when we can do it outside.  

The power chair Emma is using (on loan for as long as necessary from a very generous friend!) has battery and drive motor issues that causes it to pull to one side and are, apparently, expensive to fix.  That plus the need to purchase head switches resulted in the wheelchair clinic recommending we buy a whole new system for Emma because it will have a similar cost but include all the warranties.  Sold!  The challenge is she received a manual chair in March 2012 so they are trying to space out the request for the power chair to have the best chance of insurance approving it.  I plan to set up an appointment at the clinic to order one in January.  Fingers crossed insurance approves it without much fight.  Can't you just see Emma running around the neighborhood, school, and the mall in her own chair?  I can!  I really can!  And I find that idea so exciting!

And while Emma is starting to make some real gains in her communication and is demonstrating great joy and skill at using her head-controlled power chair, my heart is feeling a bit confused these days.  The change we are seeing from her is incredibly significant and makes my heart swell with hope and joy.  Each and every one of these gains has taken years to get them and are a cause for real celebration.

Yet, we have some friends that aren't so lucky.  Friends that are struggling with their children this holiday season.  Friends whose children may never gain the skill set Emma is starting to achieve.  Friends whose children once had the skill sets whose children are in a decline with very precarious health.  We say prayers for them every night.

So, it feels a bit bittersweet sometimes to share all Emma's accomplishments here knowing that some reading this blog are on a different road.  This season we are praying that those families receive a Christmas miracle of their own to celebrate.

 

Busy Days!

This is a busy time of year for everyone and we are no exception.  We are having so much fun and have some wonderful things happening that I need to take a bit of time to capture some of it.  

Julia is finishing up her first year of school.  Kindergarten was really good for her academically and socially.  I am amazed daily at how much she has matured and am overjoyed that she still maintains her super sweet personality that (to me) defines my sweet Julia.  This year she started reading and writing words, sentences and books.  She has a collection of books she wrote and illustrated at school and we were invited to a special event at her school called Meet the Authors.  She was looking forward to this day for weeks and when it finally arrived she was jumping around on her bed with excitement.  No problem waking her up that morning!  She has quite a collection of books, including My Mom, My Sister, My Fish, Dogs, The Chicks and Unicorns.  Her next book she plans to write it My Dad.  Phew!  Glad she didn't forget about dear old Dad!!!!!  We also have a journal she started the beginning of school with entries throughout the year and we can really see the amazing progress she has made with her writing.  It's quite impressive to see it all there in one journal and it is something I will put away in her keepsake binder.  

I was also able to attend the kindergarten Spring field trip to Hopkins Pond.  I missed the trips there in the Fall and Winter and Julia (and me!) was really hoping I could make it in the Spring.  It was a great day and the children had so much fun with the nature walk, picnic lunch and playtime.  It melted my heart that Julia wanted to hold my hand and walk all around with me instead of running off with her friends.  This is a great age and I know it won't last long so I'm going to soak up as much of the Mommy/Daughter time as I can!  After lunch the free play merged into a giant game of Duck Duck Goose and it was so nice to hear the children cheering for the Goose!  I have to say that the Quaker values taught in her school is a great match for Julia's personality and values and it's nice to see them in action.

Emma is doing some exciting things with the Eco2 with eyegaze system.  She is consistently using her eye gaze to choose milk or food during meals and also lets us know when she is all done.  She is also having a lot of fun using the Old McDonald page we programmed into it along with the Colors.  I use both of those pages for games or songs we sing and today we used it for our puzzled and Emma was especially engaged in using the eye gaze system to participated in the game with me.  This is VERY exciting to me!  We started filling out all the paperwork to have her insurance buy her one of these devices.  I am crossing my fingers that it doesn't take too long but since it is such an expensive piece of equipment it might take a while to get it approved.

We also attached some switches to her power wheelchair.  The company ASL loaned us the switches for a 20 day trial period and they have been wonderful to work with so far.  Emma's PTs are thrilled with the support they received to order the trial period equipment.  We were also glad that Emma's wheelchair vendor, National Seating and Mobility, came out right away to program the switches in her chair so we were able to start using the chair with the switches at the beginning of the trial period.  We have it set up with proximity switches that Emma activates by have a body part in close proximity to the switch.  The head rest has a "forward" proximity switch in it so Emma can move forward by placing her head back onto the headrest.  We also have a switch for left and right that we velcro to her tray table to determine the best placement for her to activate them.  I hope to have a video of her using the power chair with the switches soon.  Right now we are mostly working on her moving forward and introducing the left and right switches slowly since Emma is typically only interested in using the right/left switches to spin around in circles.  With practice I really believe that Emma will be able to work the switches to gain some independent mobility - how exciting!

Driving Lessons - 4 year old style!

Navigating the world of power mobility for Emma is a bit of a puzzle to me.  I'm not sure why it feels so complicated for us since it seems like it comes together for other people much easier, but we are plowing forward with our complicated journey of power mobility.

Our main challenges:

• Emma's school PT is not skilled in power mobility so we are working on it during sessions at a satellite campus for the local children's hospital.
• Emma is lucky to have a powerchair to use thanks to a generous friend who passed it on to us.  It fits her great but we are looking to explore alternative driving options outside of the joystick.  Since Emma didn't purchase the chair there isn't any medical company really supporting this effort.
• Her private PT asked the main campus hospital and the durable medical equipment (DME) company to ask about switches for the powerchair.  The local hospital can help us purchase some but don't have any to loan out.  We would like to test out options to see what we should purchase.  The DME company is not getting back to her on it.  I asked the DME and it seems they likely don't have loaner items for us to test out before we order.  So Emma is still using the joystick while we figure out a better way for her to learn to drive.
• We don't have an easy way to transport the powerchair, so for now we are leaving it at the satellite campus in a special closet and Emma uses it during her 2 sessions/week.  That is working ok for now but we eventually plan to move it home once we get some switches to help her drive.

When Emma first stared learning to drive the powerchair she didn't hold onto the joystick for long periods and when she did hold on she went around in circles because her arm tone kicked in and pulled her arm toward her body (see this post for an early video of Emma in her powerchair).  Emma loved going around in circles!  But that will not give her independent mobility so we removed the joystick from the chair arm, adjusted one driving program to exclude reverse, and mounted it with velcro to a tray and placed it in the center of Emma's lap.  

This has worked out well.  She is now able to hold onto the joystick for extended periods while going relatively straight.  At first she would only go for about 10 feet but now she can drive it for about 200 feet.  Quite an accomplishment!  Here are some videos of her driving her chair down a very long hallway last week.  

Things we'd like to try to help Emma drive and steer the chair better:

1. A head switch behind her head that will allow her to move forward when pushed and will stop when she brings her head forward.  Her head control has really improved with her new manual wheelchair and we both think that she has enough control to use her head in this fashion.  AWESOME!
2. A switch for left and a switch for right that she can activate with her hand.  That way we will start with forward, left, and right to teach her how to drive.  As she gets better we could explore more freedom of motion - perhaps with a joystick that includes a guide or a different handle for Emma to get a better fit for her motor skills.

So how are we going to make this happen?  One thing I'm going to explore is making an appointment at the wheelchair clinic Emma uses to try out the different options.  The wheelchair person there knows Emma, has some switches on powerchairs available, and I totally trust her recommendations.  Ideally, we'll get Emma in the clinic for a few hours to test out the options and then move forward on either borrowing or buying the best fit! 

The other thing that is happening is I plan to take Emma to the Abilities Expo next week and talk with various switch/power mobility vendors to see what we can do.  Having so many vendors under one roof will be the ideal opportunity to help us move forward on getting Emma what she needs to continue on her journey to power mobility.  

If anyone has any suggestions that might help us, please comment below!  Thanks!

I love days when things just come together

Some days things go really well.  From the time you wake up until the time you go to bed everything works out great.  The thing is, though, is that those days are so...very...infrequent.

Most days I rush around trying to check off 2 items of my to do list.  Yes, you read right - 2 items from a to do list that is at least a couple of pages long.  The reason I have it set at 2 is because I think 3 is reaching too high most days.  Experience tells me that I just as often as not hit the 2 items so I see no reason to mess with a 50/50 record by upping it to 3!

Today, however, is one of those magical days when great things happen even though I'm not checking anything off my to do list.  It almost makes me want to stop the day now because I'm not sure it could get much better as the day goes on, but boy would it be fantastic if it did!  And I have a feeling it will....today is just one of those great magical days where a lot of things come together on the same day.

Emma went to school in her pull-up today.  Not a diaper, a pull-up.  This is a very big deal in our world.  She also went to school with a spare change of clothes just in case.  And guess what?
She came home in her pull-up!  She used the potty at school and did not require a diaper change.  Her aide left me a message telling me how proud she is of Emma.  I like her new aide, and now I like her even more for her kind message with italics and smiley face.  I like smiley faces :-)  Emma does not come by smiley faces or stickers for good work all that easily.

When Emma was settled in the house I looked in her notebook and read how great she is doing with a quick response on her listening check each morning and that the team is now introducing her eye gaze device for her to select the LING (listening) sounds.  She even picked one correctly with her eye gaze device on the first try.  In her notebook I also saw a note that our trial of the eye gaze device was extended until Feb. 22!  That gives us almost another month to see what Emma does with it, which is really helpful in our decision making process of what device to purchase.  She is just warming up to knowing how to use it - and at the age of 4 it still amazes me how quickly she catches on to all the technology we show her! - so handing it back next week would not really give us an accurate trial of the device.

On Martin Luther King, Jr. day we stopped by Emma's hospital to drop off her non-working loaner power wheelchair.  Chris had the day off and was able to help me get it there because it is hard to load/unload it from the car when it has power and even harder when there is no power.  It hasn't worked since we moved and I've really been itching to get Emma back to working on learning to drive a power chair to give her a taste of increased independence.  I was thinking about the chair today and received a call from her hospital that it is all ready for her!  The battery was just too low that it wouldn't charge.  It is now charged and ready for Emma to drive it about.  I'm planning to pick it up on Monday so we can have it for her PT evaluation scheduled next Tuesday.  Emma needs extra PT in addition to what she has at school and one thing I want them to work on is driving a power chair.  The timing of the fixed power chair is just perfect.

Today I haven't checked anything off my to do list and yet it's already been a great day.  I think I'll save my to do list which includes calls to make appointments, insurance referrals, getting insurance to cover some of Emma's essentials, etc. for Monday.  Today is a great day and I want to just enjoy it while it lasts for they don't come around that often and when they do they are meant to be savored.

Week 1 of Summer Vacation

This week was the first week of summer vacation for the girls.  No school.  No schedules.  LOTS of Mommy time, sleeping in, eating snacks, playing with friends.  It is a week off that they so very much deserved after their great efforts at school this year.  I also like to think that I deserved it, too :-)

Our summer will be jam packed this year.  The girls are both going to do a bit of summer camp - Emma will attend as part of the extended school year, Julia will attend camp at her preschool.  I tried to convince her to try the Y camp, but she loves the one at her preschool because she just loves the bus rides to field trips, the amazing water play area, and the weekly visitors so we decided to honor her wishes and let her go to that camp.  We also have a great family vacation planned and will move before the start of the school year so this summer is going to be b.u.s.y!

With all the craziness planned for the next few months I wanted to start the summer off with us doing fun things together - not spending too much time in the car or hanging out at home play dates where I don't get to see the girls much because they are off playing with the other kids.  I wanted to make their first week of summer vacation our own to create lasting memories.  The kind of memories that will get me through the initial adjustment when Julia starts full time, full week kindergarten (*sniff, sniff*).

We spent the week together packed with lots of local FUN!  Monday we went to Emma's two therapy sessions at the hospital - the only therapy sessions she actually had this week - and decided to pack our picnic lunch and hit the Can Do park afterwards.  We met some friends there and enjoyed the great weather, the swings and slides.  Tuesday we went bowling, a favorite activity that is so wonderfully inclusive for people in wheelchairs!, with some friends followed with lunch at IHOP and an evening trip to Rita's Water Ice for Emma's school fundraiser.

Wednesday we took advantage of the $1 movies and saw Kitt Kittredge American Girl.  Both girls loved it and sat captivated through the entire movie while eating lots of snacks!  We had a picnic lunch in their bedroom that included some great music on the iPad and LOTS of laughter. The best part of the week was on Wednesday night when Roy Halladay hosted our {hospital} support group, Chronically Cool Families, in his VIP Box Suite!  He donated tickets, Philly Phanatic dolls, food, drinks, time on the field, t-shirts.  Wow!  We are so very honored that he would think of creating such a great evening for our families!  He had planned to meet with our group, but it was a double header that day and he was pitching in the game so we got to meet Mike Stutes who was just so sweet with the kids.  Take a look at some of the photos from the evening.

Thursday morning the girls slept in since we were out late at the game.  We decided to have a lazy day at our friend's development's pool.  It was a bit chilly, but we swam a bit and then the girls played and ate poolside.  We had a leisurely afternoon followed by a game of hide-and-seek in the evening.  The girls LOVE to play hide and seek and we often make it a family game.  Emma is not so great at it, though, always giving away our hiding spot by giggling loudly and uncontrollably.  I think this is her favorite game.  I think it is Julia's favorite, too, especially when us girls hide together while Chris finds us.  She is all giggles, too, but hers are much softer than Emma.

We wrapped up the week with a photo shoot at Kiddie Kandids and I'm happy that the photos of the girls together and Emma alone turned out great (Julia always takes a good photo, so I don't worry about her photo shoots at all).  Emma tends to smile and look at the camera much better when I'm not behind the camera so I do like to get some professional shots every now and again to supplement my photos.  She sees me too often and finds no reason to pay any attention to me regardless if I am acting like a goof to get a good photo of her!  We rounded out the day with a trip to a mobility company to discuss options for transporting a power wheelchair with our Toyota Sienna.  Let's just say that we are not really prepared for the huge changes a power chair would make in our life so it's a good thing that we are easing into the power chair for Emma.  Actually, she's more easing into it than we are - she has to demonstrate that she can stop and go relatively *on command* to get it approved by insurance and we still have a lot of practice ahead of us to make that happen.

What a great week!  I just love spending time and doing fun things with my girls!  We try so hard to manage Emma's many appointments so they don't get in the way of us living our life like a typical family.  Many weeks we are successful and I still never take those weeks for granted.  This is one of those weeks that will carry me through the recently *few and far between* weeks of endless appointments.

Life is good.  God is great!  We are enormously blessed.

Ability Expo Recap

We went to an Ability Expo in New Jersey recently.  Holy Smokes!  When I went to the website to add the link I realized the expo was a month ago.  Time is really flying by!

Attending the expo was a great experience for us!  Equally great was that we left Julia for a day with the grandparents and so we could "play" with all the cool items without catering to her boredom schedule.  Since Emma loves people watching she was game for staying as long as we wanted and was thrilled to try out various equipment.  For the first part of the day we had Emma's iPad hooked up to her chair with the articulating mounting arm from RJ Cooper and it generated a lot of interest and we eventually moved it to the car after lunch so we could move at a quicker pace through the Expo.  We were pleasantly surprised at how easy it was to chit chat with some great parents of young children and it was fun to compare equipment, notes, experiences from the different areas on the East Coast.  Meeting so many other parents is something I don't think we really expected but we really enjoyed.

The highlight for Emma was when she tried out a tricycle at the Freedom Concepts booth.  We were so surprised to have her actually start to pedal the bike on her own!  She pedaled twice and smiled the entire time.  The bike needed a couple options that they didn't have there and the representative took down the measurements and configuration she would need to send us a price quote.  We received the quote last week (Yikes!  They are expensive!) and we are working on getting some funding to buy it for Emma.  How cool would it be for Emma to have a bike to ride?  Just SOOOO cool in this Mommy's opinion!  We'll keep you posted.

Today I talked to Emma's PT about the tricycle and found out the hospital has the exact trike configuration that Emma would need.  When I told him how serious we were about trying to get one for Emma he brought out the bike for her to try out.  I was shocked he never mentioned the tricycle to us before and he said that it never occurred to him since we are working on so many things with Emma and he only gets her one day a week.  Hmmm.  Emma surprised everyone by pedaling around the therapy area for about 25 minutes and fussed excessively when her PT tried to move her to another activity that we decided to let her ride for another 5 minutes.  We had to help steer the bike an sometimes line it up a bit so her foot was at the "top" of the cycle so she could pedal but Emma did 85% of the work in cycling around and it blew almost everyone in the therapy area (they all know Emma well!) away.  Her PT even said he got goose bumps on how good she did.  That's my girl!  And because I'm sure you want to see it for yourself, here is a short video from today.  Enjoy!



There were loads of cars and vans in all kinds of configurations to accommodate a wide range of equipment.  We looked at the converted vans and decided that we aren't really ready to take that leap right now.  Our minivan is paid off and we want to get a lot more mileage out of it before we get a new one.  Besides, the power chair that Emma has is only a loaner for now and I'm not sure when we'll have to give it up.  Emma's progress with the chair isn't going as quickly as I imagined and we are still quite a bit away from meeting the criteria of moving in a set direction and stopping when directed that is required for our insurance to consider buying a power chair.  We learned about a lift that would help us transport a power chair and still use part of our third row seating.  We are going to take a look at one in the showroom sometime soon.  If anyone has any experiences with these lifts let me know the pros and cons!

We looked at a special tomato jogging stroller that was super easy to push.  Emma will need the special tomato liners for the jogger and that takes the price up a bit.  We are considering this jogger but want to try some other joggers first.  I think we might be able to use a Bob Revolution jogger for a couple of years and there is a good resale market on them for when we need to move to the bigger jogger.

We also looked at manual chairs and power chairs.  Emma tested out two power chairs - the C300 from Permobil and a sit to stand chair from Mobility 4 Kids.  Emma seemed to perk up quite a bit when the sit to stand chair was moved to the stand position and she could motor around.  Since there were a LOT of people and booths around the Expo we did not let Emma drive without help.  Although she would like laugh and laugh if she ran someone over, I can guarantee you that she would be the only one laughing :-)  It was just a quick test in this chair, but it made me wonder why other companies aren't making sit to stand power chairs?  Here is a brief video of her testing out the chair and driving in the stand position.



If you have an Ability Expo coming to your area I highly recommend spending a bit of time checking everything out.  It's so rare to have all this equipment and experts under the same roof and to compile all the testing and information we had in one day would likely take us ages through our local hospital or durable medical equipment provider.

Power Chair Testing

Emma is one lucky girl!  Besides the obvious reasons......she now has a TDX Spree power wheelchair on loan to her so we can give her a lot of hands-on time learning to drive a power chair.  For better or worse, it seems that this is what we need to do to convince our wheelchair clinic and the insurance company that she is ready to get one of her own.

The chair came with a left handle control, but I spent a couple of hours this week moving the control to the right so that she can drive it better since she is right side dominant.  We also spent time loading and unloading the chair from the car using a suitcase ramp (loaned to us with the chair!) and it became VERY clear to us why most people would want to retrofit their car once they are set on using a power chair.  I'll just say that we're going to take ample advantage of any nice weather outside to give Emma a chance to learn driving in our driveway rather than doing all the lessons at the local mall!

True to form, Emma did not disappoint us with her desire to get moving.  I'm pretty sure she has made the connection that the chair moves when she moves the joystick.  Getting her to control the movement of the chair - especially going forward which requires her to push the joystick up, a movement that is difficult for Emma - will likely take some time.  Then there is the learning of not to knock into things, people, drive down stairs, etc.  

I'm super excited about the possibilities available to Emma with power mobility!  

Here is a video I took of Emma yesterday.  It is the first time she was in the chair since I moved the control to her right side and I think she did an excellent job.  You can see the chair is a pretty good fit, but I'm trying to make an apt. with our wheelchair clinic to get it fitted for Emma and hope that will allow her to be even more successful at driving.  Way to go, Emma!

And now for some more Cerebral Palsy facts:

Cerebral Palsy is one of the most common congenital (existing before birth or at birth) disorders of childhood.  About 500,000 children and adults of all ages in the United States have the condition.

There are 3 types of CP:  

1.)  Spastic - causes stiffness and movement difficulties (this is the type Emma has)

2.)  Athetoid - leads to involuntary and uncontrolled movements

3.)  Ataxic - causes a disturbed sense of balance and depth perception

Power Wheels

It's very evident that Emma wants to keep up with her peers - she wants to go where they go.  We were lucky enough to get a KidWalk gait trainer for her in late November and I'm thrilled to report that she is starting to take a few steps independently in the KidWalk.  Everything she is doing makes me believe in my heart that she will walk one day.  Lately, though, I've come to the realization that day is a bit farther out into the future and will not likely be her main mode of mobility.

I've been in conversations with Emma's PT for about 2 years now around power mobility for her.  It all started with a research study at the local university that is studying the impact of power mobility on very young children with motor delays.  They have even demonstrated that children younger than 1 year old can benefit from power mobility if they are unable to get around independently.  I spoke with the researchers and they felt Emma would be a great candidate for power mobility.  Emma's PT agreed to start tsting Emma's power chair readiness with the Cooper Car.  You can see a video of her in it here.

Recently I've stepped up the conversation around a power chair for Emma.  It's obvious to me that Emma will not learn how to function a power chair by spending 10 minutes in the Cooper Car each week.  She is not learning stop because when she can only go for 10 minutes a week I think there is ZERO reason for her to want to Stop when we say so.  I really think she needs a lot of time with a power chair to learn the Stop/Go concept and demonstrate that she is ready for one so we can get the insurance to cover the chair.

I discussed this with some friends and the offered to let Emma test out the power chair they had for their son.  We met at the hospital because the halls and the space there are great for testing out power chairs.  Emma fit perfectly in the chair and seemed quite pleased to be sitting in it.  The controls were on the left side which is the worse of Emma's two arms, but she still had a lot of fun moving the chair around in circles.  I was able to get her to move up and down the hallway with minimal assistance.  While looking at the set-up, Emma might do even better with a different joystick set-up and possibly have the chair move forward when she pulls the handle back and go backwards when she pushes forward.  But, overall, Emma did much better than I expected.

I don't have great videos of Emma testing the chair out because I was monitoring the kill switch (it shuts the chair down when I push the button) in case Emma drove a bit crazy and I was trying to help her out and take the video with my iPhone.  Here is a brief video of Emma going in circles in the chair.



Emma will get a chance to give the power chair a more thorough test over the next couple of months because our friends are generous enough to lend it to her for testing.  I'm looking forward to seeing how she progresses in the power chair and deciding if now is the time to start the process of getting her one.

The one thing I do have to say is a power chair will require an adjustment to our lifestyle.  We will need to map out handicap access to all our favorite places because you cannot just pick up a power chair to go over a curb.  We will also have to determine the best way to transport the chair (minivan access in our future?) and a host of other issues.  But for now we're taking it one step at a time and looking forward to the possibilities for independence the power chair could give Emma while we continue to work with the gait trainer and her crawling.

Cooper Car driving

The Cooper Car that we were using with Emma to help get her ready for a power wheelchair is back in action!  Thanks to the fabulous John at our wheelchair clinic who fixed the car for the children to drive!

It has been a couple of months since Emma last drove the car.  She had been pretty consistent at getting the car moving and was starting to slow down/stop on occasion before it broke.  I took some video of her driving the car this week when she got a chance to get back in the driver's seat and I have to say she did really good for not driving a couple of months.  

We used a different switch that doesn't work as well as the one we have at home - you can see in the video that she is attempting to hit the switch and isn't always successful.  We borrowed a switch that works with only the slightest touch from the Assistive Technology department and that seemed to work much better for Emma, but I didn't capture that one on video since we only used it for a very brief time.  

Emma still likes to go and has very little desire to stop - even when she is about to bump into walls or her therapist!  We're working on that ☺ but for now we are glad that the car is back in action and Emma will get more time to practice with the car and move her one step further towards getting a power chair of her own.

Power Mobility

Since Emma is not able to move on her own yet we have decided to start thinking of getting her a power wheelchair.  Her physical therapists are starting her on a Cooper Car that was converted for use with switches.  To start we are only using the forward switch.  This means that we plugged a switch into the car that moves the car forward when pushed.  Eventually you can have switches for forward, reverse, right and left or a joystick for those directions or any other number of options but we are starting with forward to keep it simple before we make it complicated.

Here is a video of Emma on her first day of trying out the Cooper Car at the end of June 2010.

Not bad for her first try!   In the beginning she kept looking behind her to see who was pushing her before she realized that the car moved by her touching the switch.

Since then Emma is much more accurate on pushing the switch to go forward when we tell her to go, but she has not really demonstrated her desire to take her hand off the switch when we tell her to stop - you know, so she won't run into a wall or any people!  She is starting to slow down more and does stop occasionally, but it will take time to teach her the stop concept since she is just so excited that she can now move on her own and has very little desire to stop.  Plus, she only gets to power around in this car for about an hour a month which makes for a long learning process.  

I'm excited to see where this leads!  Stay tuned.