Tuesday, April 1, 2014

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!

Thursday, February 6, 2014

Dreaming of Sun

I have the most incredible husband.  There are many reasons I can say this, but today I'm saying it because in a couple of weeks he is going to take me away from all this snow and ice to a tropical beach for a few days to celebrate my {recent milestone} birthday.  Just the two of us.  Just the two of us.

Newly engaged and without a care in the world! 
This time away will be so good for us!  We can sleep late, eat what others cook, swim with the fish (or to the wet bar!), and relax on a beach.  We can reconnect with each other without a million interruptions, reflect on our last 10+ years together and dream about what our next 50 might hold.  My hope is that we come back refreshed and ready to take on the controlled chaos of our daily life.

We are so lucky that we are able to get away.  It's not easy to find sitters for my girls;  our household isn't easy to drop into days.  For a few hours it's pretty easy, but when it stretches into a couple of days it gets trickier.  There are things to learn for Emma - how to work the CIs and talker, how to prepare her drinks and food, how to use the various chairs and potty seat, tips for going out and about.  And then there is the matter of how to work our TV remotes :-)  None of these are hard but they aren't always intuitive - especially the TV!

I'm planning on pulling together a how-to binder for the house complete with pictures.  If I forget anything I'm sure Julia will be able to fill in the blanks.  Sometimes I think Julia could run this household - maybe that's typical of first born children?  Regardless, I'll feel better once it's done and will be able to relax easier on the beach with a fruity frozen concoction.

Julia is excited to have guests come and stay at our house and is happily anticipating her own adventures while we're away.  Past experience makes me think Emma isn't as excited about our getaway but she should roll with it fairly well.  The amount of time we will be gone should be just enough to recharge but not too long that I'll spend my time missing my babies.

Here's to warm weather, sandy beaches, and some alone time with my favorite man!

Thursday, January 30, 2014

AAC Update: Emma and her Eco2 with EcoPoint

Our journey continues with Emma's AAC device.  Here are some other posts I've talked about what we are doing with her talker if you want to get caught up.  NOTE:  Emma also has a Yes/No response and low tech ways of communicating but for the purpose of this post I'm only focusing on her use of the high tech eye gaze device.  

Emma is now 100% eye gaze again with her device.  She decided that her hands weren't helping her talk like she wanted and agreed to look at the device again.  This is a big decision on her part because we can't make her look at the device and you can't navigate it with your eye gaze if you don't look at the device.  I consider this a great milestone for Emma.  

When we received her talker we had a long discussion and decided to set it up for 60 1-hit Unity.  That basically means it could show up to 60 icons at a time on the screen.  Emma had some success with it but not enough.  I saw her struggle with it and it was frustrating to her and me but I didn't really know what to do about it.  Then we met up with another little girl in our area who is about the same age as Emma and uses a device (a MyTobii) to talk.  She was saying all kids of things with her talker and actively engaged in conversation.  It took my breath away!  After talking with her Mom for a while I decided to change Emma's device to 45 1-hit Unity so there would be up to 45 icons on the screen at one time and they would be larger than the 60.  The less icons, the larger the size of them.  Her device can do anywhere from 45 - 144 icons at a time on the screen.  My plan was to dial the number of icons back and make the bigger and more easily accessible for Emma and see what happened.

The 45 set-up had things laid out a bit differently than the 60 set-up so I spent a Saturday night changing up the icons to more closely match the 60 set-up.  Emma had a lot of the locations memorized and I didn't want to confuse her with having the screen look very different.  Plus I figured I'd like them in similar spots because if she moves back to 60 Unity it would be an easier transition.  The 45 set-up seems to definitely make a different for Emma.  It seems easier for her to actually activate the icon she intends.  You could see her try so hard to activate it on the 60 Unity and get frustrated because she would activate an adjacent icon.  

With the 45 Unity, Emma seems more relaxed and happier to interact with the machine.  It seems easier for her, she is having more success in telling us what she needs, and she is stringing more words together.  She is also using it during working sessions with her SLP at school and has even initiated some interactions with people on her talker.  This is huge since she typically wouldn't use her device at school no matter how much her team encouraged her.  

Here are some things Emma has done since we changed the device, although she isn't very consistent about it.  I think that will come in time and for now I'm happy to see her start to tell me more about what is going on in her mind.  
  • She has started to chat more.  She will often use it for several back and forth conversations.
  • She will use it to get our attention.  If we walk away to do something or are in another room and she wants us she will say something.  If she wants a drink and I'm preparing it she will select over and over and over again the same icon saying Drink Drink Drink Drink Drink similar from what you hear with impatient children!  It's quite funny to me and always makes me smile :-)
  • At dinner one night she leaned over to the table and tried to grab her bottle but couldn't reach it.  She used her device to say the following in under 30 seconds without me modeling what to say first.  It still blows me away that she said this so quickly and appropriately:  "you help drink you get drink get".  I got her message loud and clear - she wanted me to help her get her drink.
  • Someone came up to her in the hallway at school to give her a marshmallow snowman treat.  Her aide told the person Emma doesn't eat them and Emma immediately said on her talker "don't eat" and gave the person a smile before starting to drive herself away down the hall in her power chair to her Kindergarten classroom.  Her aide was so happy to tell me about that and I was thrilled to hear it.  
  • Today when Emma came home from school I asked her how school was and she said "good".  After she told me she wanted a drink I walked over to the fridge to get it and she thought I was taking too long so she said "I want my    ".  I returned around the time she said my so I finished her sentence with You want your drink?  and Emma smiled big to indicate yes, that is exactly what she wanted.  
All this has happened over the last month after a very long stretch of Emma refusing to use her device.  I'm hopeful that Emma will continue to grow and use her device consistently enough to tell us how she feels (especially important to me because when cries I don't know what's wrong or if she is hurting), what she needs, what she wants, how her day went, who she played with, etc.  

Emma has a long way to go before I would consider her conversational in a social setting but I am convinced she will get there and I think it will be sooner rather than later.  Especially since we're going to set up some play dates with her friend with the talker.  Emma was VERY motivated to use her talker after her interaction with her friend.  We are also hoping to send her to the summer session at a local school that specializes in augmentative communication devices and power mobility to help prepare her to hit the ground running in 1st grade.  

Initially Emma's school team was unsure about moving her to the 45 Unity.  They think (as do I!) that Emma is very smart and that 60 Unity will give her a lot more opportunities to speak with less effort.  I was happy to hear they think she is capable of the 60 Unity cognitively but I brought up the observations I've made around her use of 45 vs. 60 and that she needs to get some early and consistent success with the device to help her engage more.  Since Emma doesn't use the device as good at school it was important for them to know what changes I saw at home until she starts to demonstrate the same things at school.  We also talked about her diagnosis of cortical vision impairment since she received the device and we had her vision therapist weigh in on 45 vs. 60 icons in light of her most recent Ophthalmologist report.  Given all this we decided to keep her on 45 1-hit Unity.  

The daily reports over the last two weeks have been really good.  All her therapists report that she is more actively engaged and focused.  She is making a lot of progress in all things and not just communication.  She is doing well at Kid Writing which is something I thought would be super hard for her.  She is doing well with simple addition and subtraction.  She is distinguishing between singular and plural words with >90% accuracy - something that is VERY difficult for someone hearing with cochlear implants.  She is walking longer distances in her KidWalk indoors (she loves to walk outdoors but not as much indoors) and driving longer distances in her power chair.  Emma is just full on right now.  I know from past experience that these periods of rapid progress are often followed by periods of sustaining before she kicks into another period of progress again.  

Wednesday, January 29, 2014

2014: Thank goodness you arrived!

I've been a bit quiet here lately and it's not for lack of things to write but rather that I've been focusing on other things at the current moment.

This year started off well - we spent New Year's Eve night at a hotel downtown.  Chris and Julia made a pit-stop at the lobby Starbucks to fuel up for the night and we wandered over to Reading Terminal Market to look around and see the Christmas train display.  Then we walked to Franklin Square Park for the family New Year's Eve celebration that started around 4pm with some light shows, a dance party and playground fun and culminated in a 6pm firework spectacular.  We were able to meet up with Julia's friend and her family there and the girls were thrilled to see each other over the "long" Christmas break.  Afterwards we went to the hotel, ate a very underwhelming take out meal and hit the indoor pool (which was colder than I would have liked!).  On the bright side our room was amazing and the beds were super comfy.

We were not thrilled with 2013 - it was a sad year for us with losing my Dad and Finnegan and were more than happy to say good riddance to 2013 and ring in 2014.  Speaking of New Year's Eve:  In true 2013 fashion it had to go out with a thud.  Our room was on the 19th floor of the hotel.  I stayed with the girls to try and get them to sleep because Emma is NOT a fan of sleeping in hotel rooms and Chris was hanging out at the lobby bar for a drink.  I finally got the girls off to sleep and started to doze off myself when the fire alarm sounded.  It kept going off for about 20 minutes.  Thankfully (?), both girls slept through it.  Chris was in the lobby and they wouldn't let him up to the room - obviously - considering every elevator has a sign posted on it not to be used in case of fire.  I was a bit panicked about the thought of carrying Emma down 19 flights of stairs in the middle of the frigid night with a scared Julia in tow.  I stayed in the room hoping it was a false alarm since it occurred too close to midnight for me to believe it wasn't a drunk partier pulling the alarm.  The talking, flashing hotel fire alarm said to stay put they were checking it out and then about 45 minutes later they said it was a false alarm.  Chris was keeping me posted (via text) of the fire department activity in the lobby and after everything was cleared Chris came back to the room just in case anything happened again he would be there to help.  Thankfully it all ended well and we had a good sleep after that.

On New Year's day we could see some of the Mummer's Parade outside our hotel room window so we decided to go and watch a bit before we left.  It was fun to be a part of the parade and Emma loved every minute of it while Julia was ready to go home almost immediately.   These two girls crack me up and couldn't be more opposites.  They balance each other out so well and make life so fun.  How blessed we are!

Here's to a Happy 2014!

Sunday, December 29, 2013

End of year family photos

Behind a camera lens I feel at home.  But in front of a camera?  Not a bit.  It just doesn't feel natural to me to be in front of the camera.  In order to ensure the girls know I was not only "taking" their photos but also there "participating" in the everyday and events that I found worth photographing, I've made an effort to make sure I'm in more photos in 2013 than in years past.  And I'm glad I did!

Sometimes the photos were taken by others or by Julia who is showing quite a bit of interest and promise in photography.  Other times I just put the camera on self-timer and had it snap away.  If Emma was in any of those self-timer shots she would go into fits of laughter.  I love when she has fits of laughter so I did that lots!

Christmas morning we took our annual photo after the opening of the presents.  It's a little top centered (because I had limited time for the girls to stay put before playing with their new presents) but I love it.  I love seeing the progression year over year of the girls under the tree and am glad Chris and I are in the photo.  Taking our family "fresh off opening presents moment" photo is a Christmas morning tradition I treasure.

This year we had our family photo taken at a photo studio.  It's been a few years since we had our family portrait taken and it felt like the time was right.  The girls had a lot of fun, but BOY is it stressful getting everyone up and ready and to the studio to have the photo taken.  Now I remember why it had been so many years between photos :-)

And this year I had our Christmas card include a photo of all of us together.  Here is the photo from that card.  I tried to scan the card and post here but it doesn't come out nicely so you are getting the card photo and just imagine the peace, love & joy message printed across it.

And there is a snapshot of how my efforts of documenting our family presence this Christmas season worked out.  I think it's going well and I expect to continue my efforts into 2014.  Life goes by so very quickly and it's nice to see photos of us all together throughout the years.  Plus, I'm not getting any younger and might as well get photos in before all my wrinkles start to show :-)