Wednesday, April 6, 2011

{Hot Pink Wheelchair}

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Last week we went down to DuPont and picked up Angela's very first wheelchair.  Since Angela joined our family we have been using Gavin's old KidKart to give her proper seating and support.  The KidKart worked great for her but number one, I just felt Angela needed her own wheelchair and number two, it could be difficult at times using Gavin's chair for obvious reasons.  So we decided to get her, her very first wheels.  At first I was so excited.  After we left the first initial fitting I was feeling great, it seemed like this chair was going to be amazing -- then we picked it up.

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On the positive side this chair, which is a totally customized Invacare chair, gives her amazing support.  It's just enough without over doing it, forcing her to do a little work in holding herself up.  Angela is extremely hypotonic or floppy throughout her core and this chair has really great lateral support for her.  It is a solid steel frame which means that it hold positions very well and does allow for a lot of give, which is what we needed.  I also love that we could pick out the color.  We ordered bubblegum pink but we got purple -- I know, so trivial, but still I really wanted hot pink.  We still call it hot pink anyway. 

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The downside to this chair is that is a beast. My body is so sore from maneuvering this crazy thing around.  In all honestly this chair is just as difficult as the 300lb power chair we had with Gavin.  Although it is not as heavy it is still very heavy and I cannot lift it by myself.  Thankfully we do have a wheelchair accssable van but it is kinda bootleg.  The floor is not lowered -- it just has a new floor with tie downs and a ramp.  Therefore -- it has a more than ideal ramp incline.  This chair is so difficult to get into the van -- but we insist on keeping our crazy lifestyle and again we will just deal with it. The chair feels huge.  It's probably not as big as what it feels like, but I still think the design is kinda poor.  At times I feel like my little 19lb peanut is like three feet away and surrounded by jungle of steel -- but again, I'm sure that's a bit of a stretch away from reality.

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On a totally different note, we took Angela for an evaluation to begin the IEP process and figure out what exactly we are going to do once she ages out of the birth to 3 program.  We are not sending Angela to school.  We are firm on this for many reason.  The evaluation was amazing -- in fact I was so worried about a few different things and once I left the evaluation they proved all my worries totally false.  I felt like as soon as we walked in the room the group of therapist saw potential.  I actually at one point had to shoot down one of their ideas and say, "I don't think she is there yet."  The PT told me that she thought she was really in there, which was one of my major concerns.  Many times Angela kinda shuts down when many voices are present.  She just wants to listen to you and try to figure you out by the sound of your voice and doesn't really physically show that she is really thinking.   The PT's comment made me smile from ear to ear.  Angela is my child and I want people to see what amazing potential and spirit she has inside.  

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I went into the meeting with a boxing gloves on ready to fight for Angela, but later found out there was no need to fight.  They seemed to see they spark that Mommie and Daddy see, which was just totally awesome! I seriously can't wait to see where God takes this little one in a few years.  She has so many things going against her but little by little I can see how each one of those obstacles can totally be overcome.

I really believe that she is an amazing miracle waiting to happen, but then again i guess that miracle is has already begun!

12 comments:

Kristina said...

Love that the IEP pre-meeting went well! It's so nice to have a team that is positive, upbeat, and sees potential in your little girl!

About the chair....sorry it's a bit of a beast. It took us a while to get comfortable with Emma's chair, but it still feels like she is far away from me when I push it. Many times I walk beside Emma and push it from the side - that way we are walking "side by side". I usually even hold Emma's hand when I do that. Makes me happy inside!

Karen Owens said...

@Kristina that's what bother's me most about the chair -- I can't push it with one hand and walk beside her. I seriously think I sprained my wrist trying to do that. Oh well. I guess I'm figuring it out. :)

TusaRebecca said...

The chair looks pink in the pictures! No joke about the beastliness of the thing. Yikes! All that really matters is that Angela is loved. By you and all of us too! I can't wait to hear about her progress.

Karen Owens said...

@TusaRebecca -- It's looks a little more pink because of my photo processing. It is pink just not the shade I was hoping for -- I know that sound stupid but it's kinda like buying a fancy dress and they ship it to you in the wrong shade :)

Anonymous said...

So glad that the IEP went well! Our little one has a Zippie wheelchair - I haven't a clue how heavy it is, but it is heavy! I am rocking some new arm muscles between carrying our girl and heave hoeing the wheelchair into the back of our van. I know that someday we will have a wheelchair accessible van (hope sooner versus later), but in the meantime I hope my back holds out - we are a very active family too!

Dannette

Karen Owens said...

@Dannette We were so lucky that before Gavin died our community had a huge yard sale and raised enough money for the modifications on our van. We have a 2001 Ford WindStar and to make the needed modifications (without lowering the floor) was around 4 grand. Ugh. We would have never been able to afford it otherwise.

We are looking to get something better but the cost is really overwhelming!

Nicole said...

We had the same experience with the same Invacare chair for Tyra. It is the tilt-in-space mechanism that adds so much distance and weight. Knowing that we would have to 'live' with this chair for the next 3-5 years I required the vendor to exchange the frame for something that was more appropriate to our lifestyle. Boy, was this not a popular request. They tried to convince me that this tilt-in-space system was the be all end all. We ended up using the same seating and putting it on the Zippie Quickie tilt-in-space (not the Iris). Loved it! Held up fine and people saw Tyra first rather than the gianormous chair. At the end of the day as you know it is about what works in your family and for your child regardless of the difficulties it may pose on providers. Something to think about. Especially for as young as Angela is and with the visual impairment having all the 'extra' distance between her and her peers/environment would certainly justify requiring the vendor to exchange the frame. (plus you could get the color you really wanted *)

Anonymous said...

That is a beast! Hugs!


Katie

PS - What mount is that for the iPad?

meghan said...

Love the wheel chair. I was wondering what type of Carseat she would be in?
Could you please tell me?

Karen Owens said...

@Nicole -- good to know. I'm not sure I have the energy to fight but we'll see. I think I just might be getting used to it.

Karen Owens said...

@Katie -- the mount is from www.RJCooper.com It is the articulating arm.

Karen Owens said...

@Meghan Angela sits in her wheelchair in the van. We have a wheelchair accessible vehicle -- not the best but it works for now.