New Wheels - A Big Step 🦽

On April 27th we took possession of Natalee's beautiful, custom ordered sparkly pink wheelchair.  

I'll start this blog post with a heartfelt thank you to everyone who acted in love to help us secure her chair when insurance said no thank you.  We'll be forever grateful and you'll be remembered every time we use it.  

I'd be lying if I said that the chair doesn't come with a whole range of emotions.  Relief that she has it when she needs it.  Also uncertainty in knowing how much to let her use it versus encouraging long range mobility and strength building.  A bit of sadness that this day has come, but also excitement that we can do trips again without having to worry about how to get through them and without her paying for them physically for days afterwards.

We are planning to use the chair just for times when a lot of walking is necessary.  For example, we went to the tulip festival yesterday and we walked for 4 hours.  Natalee did walk some of it, but she got tired and began hurting, so she was able to rest, while we continued on.  It was nice that we didn't all need to stop or cut our day short, or encourage her to keep going when she was hurting. (She had also had hippotherapy before we went, so she'd worked pretty hard prior to our adventure.) 

So many people look at Natalee and simply don't understand why she needs this type of help when she looks so "normal." (man, do I dislike that word)  If you could feel her muscles in her calves, especially her right side....It's kind of like a constant charlie horse, but the tension travels all the way down her leg into her foot.  Her leaf spring AFO does help, but she's just so tight.  I try to imagine walking and playing like she does all day, and those instances help me know the chair was right.

We considered getting a cheaper $500-2K chair just off Amazon, but in the end we felt like the durability and benefit of being able to grow with her made the custom chair the best for our situation.  Children have growth spurts.  Children are also hard on things (no matter how careful we may be).  The equipment specialist said when she grows, to call.  We can buy a new sling for the chair if we need width, he can raise the height, adjust the arms, the legs, etc.  He also made it so the arms swing back or completely off, and tilted her wheels in slightly so that she can propel herself.  This is very important to her mobility and independence.  Likewise, the footrests fold, swing, and come completely off.  

We're prayerful that this chair leads to many new adventures and beautiful memories for our resilient girl!