Changes for our Big Girl!

It's hard to believe we have started the process of ordering Tessa's next manual wheelchair!  This one should last her from now until approximately age 10...that's hard to even think about!

I think she's really going to like this Mauve Pink!

And here it is, the Zippie Iris!

We use the tilting option a lot on Tessa's chair now, so this is a big reason why this should be a great new chair for her!

And the time has come for this bad-boy!  Tessa's in the market for all kinds of new wheels ;)

We've spent a lot of time this summer doing our research to find the perfect-for-our-family accessible van...and this may be the one!

We decided on a manual side-entry for several reasons

We really like the bench-seat in the back for the boys and LOVE the interior room for Tessa in the middle.

Turns out...the Dodge Caravan has the largest interior space available with a side companionvan conversion.

This is a look at the inside of one that we test drove: 

We really like how much room it gave the boys behind Tessa's chair.

We tested out a Toyota as well, and the Dodge by far had the best room for everyone.
(unfortunately, Honda doesn't make a manual side entry- and we have no need for power-so that was out)

The whole gang!

I think Tessa felt like such a big girl getting to ride around in her own chair!

It will be such a blessing to eliminate so many transitions with Tessa and will free us up to go and do a bit more than we do now!

We still have a car to sell, financing details to work out and we haven't finalized anything, but we know if this is meant to be that God will work out all the details and it will come together in His time.

This is the specific conversion: Dodge CompaionVan Se:

https://www.braunability.com/wheelchair-vans/make/Dodge/dodge-companion-van/

Hopefully the next time I'm posting van pictures it will be of Tessa in her wheelchair in our very own van!!  We are so excited that this would finally allow us to transport Tessa in her power chair as well!!  I think Tessa would be so excited to finally get to start using her power chair at school.  The best way for her to continue learning her power chair is opportunity, opportunity, opportunity!  And this would finally allow us, to give that to her!

~Whitney

Other Weekend Updates

Saturday afternoon was beautiful!  

It was the perfect time to get outside and do a little power chair driving/scooter riding

Tessa had fun trying to chase Daddy and Parker on their scooters :)

I think she was wishing for a sun hat or some sunglasses ;)

She keeps me movin!!

We opened up some happy mail from Tessa's IRun4 runner, Amanda!

She sent Tessa her two medals from her last two half marathons

Just love these smiles!!

Shiny medals are very intriguing!

Amanda was SO SWEET to remember Parker's birthday this week!

He'll be 7 on Wednesday and she got him an anwesome Lego shirt and new Lego set!

These three were attempting a Tessa-Sandwich on Saturday evening

L.O.V.E

And today I walked in front of a mirror while we were out shopping and was like "whoa!"

Baby Weston is getting bigger and bigger!

Just a couple of months to go!

Darin was sneaky and took this picture of me and little miss at church during connection class.

She was having a bit of a rough morning and needed some mommy-snuggles.

This is what we call 'squished prego belly'...

Little miss isn't so tiny anymore, but her snuggles are just as delightful ;)

~Whitney

A Little Walking & Driving

Darin got this cute short video of Tessa giving her Kidwalk a try over Spring Break.

cutie patootie :)

We finally had some time to get some videos of Tessa using her power chair inside!  These will have to be provided to Medicaid to prove her functional use of the chair in her natural environment.  They are a little dark, but hopefully you can make out most of it.

Video 1: Tessa maneuvers the chair into the kitchen to get her juice from me

 

Video 2: Tessa drives toward Darin in the living room to pick out a toy

Video 3:  Tessa had been driving up to Darin to get a snack,
but this time she decides to start heading down the hall to her bedroom.

~Whitney

Persevering-Full Speed Ahead

The reason this video is so great is because Tessa is simply amazing!  Her new power chair didn't come with the right technology that would allow us to reverse her toggle (we are waiting on that to be corrected by the vendor).  After a year of practicing in the loaner power chair from the study, we determined that Tessa was most successful by having the chair move forward when she pulled the toggle back and the chair move backward when she toggled forward.  Tessa has more difficulty maintaining the positioning of her hand in a forward motion, so her movement in the chair was much more fluid when we reversed the toggle to where pulling back on it made the chair go forward.

It has been a little frustrating for her in her new chair because every time she reaches up to pull the toggle back, she goes backwards...and that is not at all what she expects to happen.  We weren't sure how much we'd put her in the chair before they were able to come back out and update the technology, but we've been doing pretty good with a hand-over-hand approach.  As long as Tessa keeps her hand on my hand, on the toggle, then I help her drive.  The only independence she has had in her new chair has been going backwards and in circles, because the concept is different than what she's been used to.

Well, last night she showed us!  Our little whipper-snapper found the ability to maintain her hand on the toggle in a forward motion and went full speed ahead!  I could barely get my phone out fast enough to start getting video after she took off.  She was also on the second to highest speed...so I was having to jog next to her to keep her on video!

It is always amazing to me, that even though Tessa's expressive language is somewhat limited, there is no doubt that she is so in tune to everything around her!  She picked up on what she needed to do in her new chair after just a few days of practicing.  We didn't want to force her to learn a new way to drive her chair, because we knew it could be adjusted to the way that she was used to, we would just have to be patient until they got the right stuff ordered.  This is why I had decided to just help her with hand-over-hand, in the meantime.  I absolutely love it that my little girl knows how to persevere!  The design of her new power chair is not what she expected.  She has experienced many moments of frustration when she was unable to get the chair to do what she wanted it to do.  She has been patiently allowing her mommy to help her drive.  She persevered through the disappointment, frustration and moments of dependency and they all led up to a moment full of so much joy ~ success, accomplishment and independence!

The most delightful lessons I learn in my life are the ones the Lord teaches me through my daughter.  It is the most blessed way to be pointed back to Him and to gain a better understanding of what He calls on us for, as His children.

~Whitney

This and That

Tessa had a 3 month follow up with her eye doctor on Wednesday.  I thought we would just be chatting about how things were going with the 2-hour-a-day patching schedule and to see if her right eye had strengthened at all....

but we didn't end up leaving until after we ordered these... 

Both of Tessa's eyes are measuring about 2.75 of astigmatism, so we will now journey down this road.  I'm obviously not thrilled about adding another thing to our list of 'things' for Tessa, but if it helps...I will turn my frown up-side-down!

This picture made my day...she knows she is something special in her new big chair!

We loved getting to spend some time with Grandma and Grandpa!

And since we have all our years to come to get settled in the new house...for now, we play!

and we play hard!

These two little ducks are so fun!

Saturday morning fun!

I'm back at work today...but I got this by text earlier...it looks like they are still enjoying themselves ;)

~Whitney

New Wheels!!!

Well, we moved all weekend and on Monday afternoon Tessa's new power chair was delivered!

There's lots to post about, but for now I'll have to keep it short and sweet.  

We are exhausted, but so humbled by God's many blessings in our lives.

I am amazed at how the Lord loves us and provides for us so specifically.  It could not have been a better 'ending' to an exhausting move than to have Tessa's new wheels delivered to our new accessible home! 

The first thing that popped in my head when I saw it was 'the purple beast'!  Tessa's new chair is magnificently huge :)  And once again, there was instant recognition of this new gift of freedom and independence for her.  

Tessa's new chair has the elevated seat option, and when fully elevated, she is almost at eye level!  It is amazing and we are so excited to have a home she can explore and take off in!  I helped her drive it to her bathroom and was able to go all the way in, up to her sink and then completely turn it around to get out of the bathroom.  Amazing, simply amazing.

Lots more pictures and videos to come!

~Whitney

Giggles of Accomplishment - Never Gets Old!

Still trying to get Tessa's very own power chair ordered.  They have requested video of her using the one from the study...and I've watched it over and over again since emailing it on.

Absolutely love this!

Her giggles of accomplishment will get me through today!

~Whitney

PWC Progression

Well, on Monday afternoon, Tessa had her final Power Wheelchair Evaluation for the study she has been in for the last year.  To say I am grateful for what the study has provided our sweet girl, would be an incredible understatement.  I can't imagine what life would be like had we not had this amazing opportunity.  

Ms. Lorrie came out on Monday afternoon to perform her final evaluation and we were finally able to tell her which group of the study Tessa was in!  Lorrie performed the original evaluation in September of last year, then one at the 6 month mark and this final and third one, at the 1 year mark.  We have had to keep it a secret which group Tessa got in...the control group, or the group that got a chair.  Lorrie has done each evaluation based solely on the progression of Tessa's overall capabilities regardless of the study groups.  At the very end of the appointment Monday, after all the paperwork had been completed, Lorrie said "Ok, what group was Tessa in??....I'm pretty sure she got a chair!"  It was so fun to finally be able to talk about it!  Lorrie could remember back to a year ago and how limited Tessa's mobility was in her arms and hands...the changes in this area alone, were almost enough to convince Lorrie that she had been learning how to drive a chair over the last year!

I was looking back through pictures of Tessa in her chair over the last year.  The most striking thing that I realized almost immediately, were the changes in the expressions on Tessa's face over time.  The first 2 pictures were from the very beginning of the study, in 2011, when she first got her chair...and the last 3, most recently in 2012.  I know we all gain a little character and personality the older we get....but I guarantee you, the progression in Tessa has not just been in her ability to drive a power wheelchair...her progression has been in her discovery of life, freedom, fun and independence!

09/2011

 11/2011

 06/2012

 09/2012

 10/2012

They say a picture speaks a thousand words....I can't help but grin from ear to ear at what the progression of these pictures says to me.  I have the cutest, funniest, happiest, spunkiest little girl in the world and I just love it that the Lord is maker of this journey, cause I would not have wanted to miss something like THIS!   

~Whitney

Video Palooza!

Power Chair Adventures 6/28/2012

Excellent driving skills 6/28/2012

Tessa Giggles-Daddy playing with the blinds 7/2/2012

Parker & Daddy Entertaining Tessa with Songs & Motions! 7/23/2012

Part 1: I'm a Little Tea Pot

Part 2: Twinkle Twinkle

Parker's best attempt at dancing with his sister ;) 8/2/2012

Sweet Good Mornings after turning her CIs on 8/13/2012

Tessa's first time to pick her bottle up off the table and take a drink

all by herself!  8/17/2012

Pesky little fly! 9/4/2012

Morning Changing Table Giggles 9/2012

Cooler weather = lots more power chair time! 9/2012

Sweet Talking from My Sweet Little Girl 9/2012

Impressive Use of Her Arms and Hands!!!  9/8/2012

This is all a first for Tessa and she did it over and over again!

Hooray for new discoveries and new abilities!

Part 1: Trying to get her ribbon wand 

Part 2: Working really hard at getting her ribbon wand

Part 3: getting some jammies down off the storage tub

Part 4: still working hard at reaching up and then passing to Daddy

Part 5: the super impressive double-pass!!

This video-explosion-post is a testament to how ridiculously busy things have been around here!  But I just can't stand to not try and catch up from time to time, regardless of presentation ;)  I've spent some time looking back at pictures and videos from this time last year, and it's hard to believe how much things have changed.  Little Miss has been driving her chair for a year now and I truly believe that so much of her progress over the last year has been a direct result of the freedom, independence and confidence she gained from that little motorized chair!

~Whitney

Better News Video

NewsOK posted the story too and Tessa is in the video several times.  Even daddy made it in!

Here's the link:

http://newsok.com/feed/university-of-oklahoma-researcher-discusses-mobility-study-for-toddlers-with-disabilities/article/3691473?custom_click=pod_headline_news  

~Whitney

Tessa In The News!

They did a story on the news last night about the OU Power Wheelchair study that Tessa is in!  They came out a couple of weeks ago and shot some video of her and she got a very brief, but precious, 5 seconds in the story.  The little girl they did the story on is precious too! 

Hearing this story makes me realize all over again how incredibly fortunate we have been to be a part of this study.  There is no doubt Tessa's life has been changed dramatically from this experience!

Watch for her between 43 and 48 seconds.
Don't blink...you might miss it ;)

Here's the video link:

KOKH FOX 25 :: Top Stories - Kids Get Mobile With Wheelchairs

~Whitney

Evolving Wish List ;)

Who knew my wish list might ever include something like this!
That's what I call fancy!

I had no idea such a thing existed...talk about handicap-in-style!

http://handicapaids.net/

http://www.autofind.com/dealer/details/26769.passenger/5FNRL5H61CB001166/

I can just picture Miss Tessa driving her little power chair right up into something like this one day!  Yes she's only two, and no, it's not quite time for something like this, but I'm all about preparing, planning and praying for opportunities of freedom and independence!

...a mama can dream ;)

~Whitney

Here's a video of how they build these vans...it's fascinating to me...knowing how something like this could really change Tessa's life one day.
http://handicapaids.net/how-its-built-accessible-minivan-conversion