Archive for ‘wheelchair’

February 20, 2013

Back to Shriners {Jovia Update}

Last week Jovie and I loaded her wheelchair into the bus (oh my goodness, what a blessing this bus has been!) and took a girls only road trip to Kentucky to see the folks at Shriners hospital.

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The goal of this appointment was to have our yearly check up with the orthopedic specialists, talk to the prosthetics department about what our local prosthetics clinic wanted to do and to have some adjustments made to her wheelchair.

The drive is about 4.5 – 5 hours depending on traffic and if you stop.   We made it down there in time for dinner and decided to hit up the mall and have dinner at PF Chang after we checked into our hotel.

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The next morning we headed to Shriners.  We met with the wheelchair folks and PT first.   They were all excited to see how well Jovie is now driving her wheelchair.   Some small adjustments were made on various issues that have popped up now that she’s driving it more.  They are going to be moving a few buttons she’s having trouble reaching, removing a couple all together that she doesn’t use, making the seat bigger and removing the foot rest she doesn’t need.   The battery will also be replaced since something is wrong with it and it won’t hold a charge very long.   J. was happy to show off her driving skills and drove around the playroom for a while so we could all watch and chat about how well she’s doing.

After that we headed down to meet with the doctor and the prosthetics clinic.  I was excited for the doctor to see Jovia – especially because she (the doctor) was the one who first told me last year that we should never expect Jovie to stand or walk on her own.   I couldn’t wait for her to see how much she’d changed!   Everyone came into the room together and they were all very excited to see how well she was walking and figuring out how do things.   The doctor didn’t mention her earlier predictions (and neither did I) but I’m so glad she was able to see all that Jovie can do now.

The prostethics folks were eager to chat with us particularly because we were scheduled by our prosthetics clinic here in Ohio to get Jovie fitted for stubbies this week.  We’ve been struggling with the decision of stubbies vs no stubbies for a while now.  Several people have really pushed us to try them (mostly PT’s and prosthetics folks) but at the same time I’ve seen/read about/spoken to adult congenital amputees who were all pushed into prosthetics as a child but never got much use out of them and do not use them.  The prosthetics folks at Shriners helped me decide that we are going to hold off on prosthetics for now.   There is no real benefit for her at this point to have them.  We all agreed that they might in fact harm her walking more than they would help.  She’s doing so amazingly well now that we don’t want to do anything to cause frustration or set her back.  If at some point she decides she wants them for cosmetic reasons or an issue comes up that they become a necessity we will re-evaluate then.

One other exciting thing we learned during that appointment was that there is a woman who lives a few hours away from us who was born with the same amputations as Jovia.  The folks at Shriners said their limbs/body shapes are very similar (almost identical one doctor said) and they were going to try to get us in touch with this young woman.  I’m excited and hopeful about possibly having the chance to connect Jovia with an adult who is “just like her”.   They were telling us about all the things that this young woman does on her own (apparently she is learning to drive!) and I would love for J. to have that connection.  So we’ll see.  :)

Jovia is growing up and changing so much.  She’s almost potty trained now, talking like crazy, walking everywhere, hopping (which is so cute to watch) drawing well with markers/pencils, building towers with blocks (the physical therapists love that!), helping to clean up her toys, eating almost all of her meals on her own, driving her own wheelchair into church and appointments, helping to buckle her own carseat (she can snap the chest strap!) working on climbing up stairs (ohh, so scary for this mama!) and so much more.   She and Mayer have been playing really well together – playing pretend (restaurant is a current favorite), playing with cars, hiding in forts and whispering.  It is so adorable to see their relationship changing and maturing.  She’s recently taken on a “big sister” role with Benjamin too – comforting him when he cries, watching out for him and sounding the alert when he’s into something he isn’t supposed to be (which happens a lot now a days!) and in general acting very motherly towards him.

{Side story!  Yesterday we were sitting in the living room when I heard Jovia say “I help you Benji….” she rolled over to him and put out her arm like we do when we go to help him stand up (he can’t yet stand without holding onto something or someone).  So you have to picture this –  Jovia laying on the floor on her stomach.  Benjamin taking her arm and standing up beside her, but of course he’s all bent over because he’s holding her arm which, even when she reaches it up, is beside his ankle because she’s on her stomach.    At this point Jovie says “come on, Benj” and she tries to roll, while he tries to walk, bent over, beside her.  They fall down.  At this point I jump up, racing to find my camera as they attempt it again.  I can’t find my phone anywhere.  Finally I find it and run back to the living room where the whole thing was over.  It was so adorable and funny and sweet.   If it happens again I will try so hard to get it on video. :) }

We are so proud of our sweet girl!

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November 3, 2012

Concentrating on the “Can Do’s” instead of the “Can Not’s”

An older, grandmotherly type lady approached me at preschool pick up a few weeks ago.   She had been eyeing Jovia as she sat in her stroller, watching the other toddlers as we waiting for the preschoolers to file in for the last story of the day.   She gave me a sad smile and said “Isn’t there anything anyone can do for her?  It just breaks my heart to think about all the things she will never be able to do…”

I was momentarily startled because most people approach us shocked at Jovia’s abilities and how she adapts and figures out how to do the things she wants to do.

But then I remembered, I know how easy it is to take a quick look at Jovie and feel sorry for her, to automatically start imaging what she won’t ever do.

There was a time when I did just that.  Before she came home I spent a lot of time thinking through dozens of different activities in my head and checking off invisible boxes…”can do this”…”can’t do that”.

But not anymore.

We are no longer focusing on what she can’t do….now it’s all about being amazed at what she can.

Jovia has already so far exceeded our expectations (and her doctors and therapists!) that there are few things we dare imagine she won’t be able to do.   Sure, no one expects her to be a concert pianist or run a marathon.   But there are so many things that we are now sure she’ll be able conquer.  Things I never dared to imagine when we first committed to adopt her.  God has blessed Jovia with an amazingly determined spirit.   This girl doesn’t stop trying. 

In the past couple of weeks Jovia has decided to start walking.   Yes, walking.  On her own.  Not holding onto anything.  These are short distances but none-the-less, walking.  We.  Are.  Amazed.   Remember, doctors told us to never expect her to stand alone!

We are currently exploring different options to help her expand her walking abilities.  We are looking for something to help make walking easier so she can walk longer distances.  In particular we are exploring the idea of finding someone to design and build a small walker for her.  We envision something that she can stand in front of and push to walk behind.  Something she can get herself into and out of.  Her wheelchair is WONDERFUL and gives her freedom she’s never had before.   But it isn’t practical for really interacting with other children her age, something she wants to do desperately.   I will keep you all updated when we come up with something.

Thank you all for continuing to cheer Jovia on and pray for us as we navigate these rarely chartered territories.  We continue to look for new and creative ways to help Jovie be as independent as possible.  We are overjoyed with her progress and can’t wait to see what she does next!  It’s like watching miracles unfold one after another in our own home!  :)

 

October 16, 2012

A big, white, 10 passenger miracle…

There is a big, white, 10 passenger miracle sitting in my driveway right now.

Yes, folks.  We have a wheelchair accessible van!!

Let me tell you this story.  I’ll try to do it without crying.   :)

A little over a month ago I got a Facebook message from a fellow adoptive mom and Facebook friend Ashlee.   She and I had met briefly in Uganda and had stayed in touch on FB since that time.   Her message that day basically said – I’d like to raise enough money to buy your family a wheelchair accessible van. 

I was sitting at lunch with my family when I read the message.  I handed the phone to my husband to read and he and I sat there with our mouth hanging open, shocked and overwhelmed that someone would want to do this for us!

Ashlee’s goal was to raise $15,000 by October 15 .   It seemed like so much money in such a short amount of time.    You can read her original blog post about the fundraiser HERE.

Quickly it became clear that hundreds of amazing people were going make this dream  a reality.   We stood in shock as we watched money come pouring in, designated for the “van fund”.  Thousands of dollars were donated by family, friends and complete strangers who wanted to see this happen.   Ashlee hosted an online auction and dozens of people donated goods to be auctioned off.  Other adoptive families, some in the midst of their own fundraising, donated items.   Several stores and merchants donated goods and services.  Photographers, artists, online stores, and more.   Hundreds of people bid on these items and raised thousands of dollars which then went into the van fund.   Someone held a giveaway for a necklace.  Someone else hosted a book party.  People sent me encouraging messages sharing how our kids have touched their hearts and how they were praying for us.   Bloggers blogged about it and hundreds of people shared the fundraiser on Facebook.   It was so incredible and humbling to watch so many people come together to provide this amazing gift to our family. 

We started looking at vans several weeks ago.  We didn’t have all the money we needed yet but it was clear that God was doing something miraculous.  We quickly found three vans that sounded great.   The first one, our favorite, unfortunately turned out to be a scam.  But the second one, our second favorite, wasn’t a scam at all and as we learned more about it, we decided that this van was IT.    The perfect van for our family.

I told Ashlee we’d found THE van and she put out a final push to get the last remaining amount of money needed.  We didn’t need the full $15,000 that we had originally planned, we only needed $10,000 to pay for the van, the cost of getting it here and the repairs it needed.  We were about a thousand dollars short.

The van was in Iowa so as soon as I knew we had enough money to get there and buy the van I booked a plane ticket and flew to Iowa!

While I was there, the rest of the funds needed were donated and our van was fully funded!!!

Another Facebook friend/adoptive mama and her husband picked me up from the airport and drove me an hour away to check out the van.  I’m so grateful for their help while I was there!   Thank you Evans family!  The van was everything we hoped it would be so…. I bought it!!

After doing paperwork at the BMV the van was ours and I headed home!   It was a long 2 day drive home by myself.   I had never driven a vehicle quite this big before so I was driving slowly and carefully.   :)

When I finally got home the kids were ECSTATIC.

The next day we took it to church for the first time.  Loading up the wheelchair with the electric lift was so exciting.  It was SO fast and easy compared to the way we had been loading it in our minivan with those aluminum ramps!   That afternoon we took our first road trip, this time back to the airport to pick up my moms van that I had left parked there.

The van is just great.   It has room for eight plus the wheelchair.   If the wheelchair isn’t in the van then we have room for ten!  It is a hightop and I can actually stand in it, which is so cool for buckling kids in.  The electric ramp is on the back (so it doesn’t block the door where the kids get in and out) and works GREAT.  The kids are just in love with it and so are we!

We are SO SO grateful for everyone who helped make this dream a reality.  For Ashlee, who spearheaded the whole thing (while preparing to have her FIFTH child!), for all the amazing folks who gave items to the auction, for everyone who donated money, purchased things from the auction and book sale, held giveaways, sent encouraging notes, prayed for us and shared our story.   I still can hardly believe it happened!   This is going to make our lives so much easier and we are overjoyed with this beautiful gift.   Thank you, thank you, thank you!!!!!

June 23, 2012

It’s here!

We got home late last night with the new wheelchair!  

Jovia absolutely loves it.  She practiced for about half an hour yesterday at the hospital and then drove around a bit this morning in the house.  She did really great and drove it through the living room, down the hall, to her room and through the kitchen with only a little bit of help and only bumped the walls a few times. (I have a feeling our walls will never be the same!)   We’re going to have to be careful of everyone’s toes and Benja will definitely have to be up off the floor whenever she’s moving.   I hope we can take it out soon to some place with a lot more room so she can practice more.  We still haven’t gotten a ramp for the car so we’re trying to find one ASAP.   We’re so excited for her and can’t believe how quickly she’s figuring out how to control it.  She’s such an amazing little girl!

June 22, 2012

Wheelchair day is here!

Tomorrow is Jovia’s big day!

Her Permobil K450 is in Kentucky waiting for us to go get it!!!  Her first wheelchair!!
(this is not her actual chair pictured below – but it should look just like this) 

For some reason I was feeling a bit emotional this evening as I thought about going to get that chair.  I’m really not sure why.  I’m absolutely overjoyed for Jovia and the independence this will bring her.  I suppose I’m just a little nervous about how to “do life” with this gigantic thing.  This chair, and the ones to come, are going to be part of all of our lives from this point on.  Exciting and just a tiny bit nerve wracking.   :)  I know soon it will be just another step in our routine and I’ve got a feeling it will feel normal pretty quickly!

Prayers appreciated as Jovia adapts to this new experience.   I know this is going to be such an amazing blessing to her life and I can’t wait to watch her independence grow as she learns to use her wheelchair!