Sunday, December 13, 2015

December 9, 2015 -- Goodbye Beast! Hello New World!!!

Hope has a new wheelchair!  We were all so excited for this big day.  Here are some highlights and pictures. . . 

The day has finally come to say adios to the Beast. . . Hope's wheelchair that she has had from the beginning.  Now the Beast was a huge blessing for the first couple years that we had it.  It had many features that met Hope's needs from early on. . . a reclining function, a tray, padded everywhere to prevent injury, positioning belts, and more.  It has gone through quite a bit with us, and kept kicking, or should I say, rolling!  : )  Three and a half years, 5 wheelchair accidents, 6 flights (2 of which damaged the chair), lotsa snow, mud, and dirt, barnyards, a little sister, ha ha!. . . and a whole lotta miles!!!  I wish we had an odometer for that chair. . . it would have been fun to see that number!

Although it served its purpose well for the last 3 1/2 years, Hope had definitely outgrown this chair!  Not so much for her size, as wheelchairs have interchangeable parts that grow with the child, but rather for function reasons.  To sum it up, the Beast was built for keeping Hope IN her chair.  It offered maximum support, as that was what she needed to begin with for sure.  Parts have changed and grown with her but we couldn't get past the fact that this old chair's purpose was to keep Hope IN it!  As a result, it was too tall for Hope to get in and out of by standing. . . she needed to be lifted in and out.  It's purpose was to simply help us get her from here to there, as well as to help a little girl be positioned comfortably whose brain injury had made it impossible for her to do that without assistance, a lot of assistance to begin with!  It was not possible to re-purpose this chair to increase Hope's independence and function without further sacrifices.  So for the last year, we have been looking into options, and even trialed a few wheelchairs, both manual and power options.

In the end, thanks to her daddy's wisdom, we all made the decision to begin with a manual self-propelling wheelchair.  The main reasons were to give Hope the ability to continue to pursue independence, to work on muscle isolation, hand coordination, upper body strength, self initiated standing transfers, and other goals along those lines.  The self-propelling option is the harder of the two, but we felt the better and safer place to start, especially also with her visual impairment.  As she gets used to moving herself slow and steady, we can add in a power wheelchair later that will be less work for longer distances and greater speed.  But in the meantime, Hope has her work cut out for her!!!

Here are some pictures from the big day. . . 

Getting fitted into her new wheelchair!  So thankful for the great staff and vendor that we have the privilege to work with!!!

Hope kept wheeling herself over to the doorway. . . she was so eager to take her new wheels home!  This is her leaving the appointment, finally ready to go!!!

Heading out the door of the appointment room, into the hallway. . . ALL BY HERSELF!!!  What a special moment!!!

Which way to go?  We are so encouraged that although Hope's vision is still so limited, she is so much more engaged with the limited vision that she has and uses it to help her world make better sense!  Here she is deciding which way to go. . .

. . . and here she picks the right way that she needed to go.  I can fully admit that she gets her great sense of direction from her father, NOT her mother!  Ha ha!  : )
Arriving home afterwards was pretty wonderful!  Hope did not want to get out of her chair, which is fantastic!  She has become a bit of a hermit at home, not wanting to be out of her bed, which is most comfortable for her.  But in her new chair, with the ability to self-propel, she cruised all over the house!  She investigated new areas of our home that she has never been to in the last two years of living here!  She found where light switches were, she drove through the kitchen to come and "visit" me, she found what she called "Gabi's special place" in their room and felt around to see what was there, she wheeled to the front door to sit and look out the window and see the Christmas lights outside, and lots of other first time adventures for her that night!  It was simply fantastic!  New wheelchair = usually about $5000 . . . seeing the new world that opens up for her with it = priceless!!!  To think of how far God has brought this girlie!  Even the dear fella who owns the company that sold us the wheelchair, talked about his memories of setting up that first wheelchair for a VERY different little girl.  Over the years, there have been times where he was in tears seeing how far Hope has come from the first time he met her!

Here are a few pictures and a video of Hope's first night at home in her new wheels. . . yet to be named!
Love that determination!

Doing great Hope!  Love that smile. . . that smile says it all!!!

Hope's first place to visit at home was . . . the kitchen!  I was super impressed with her maneuvering skills!  In spite of her impaired vision, she was able to still maneuver in between the island and the table, and proceed to find me in the kitchen!  She followed by helping me finish making lunch, by putting items on her daddy's sandwich!

Sweet sister love in the form of a hitching a ride from a newly self-propelling big sister!  Exciting times indeed!!!  : )

Love these two sisters and the fun they have together!  Gabi was thoroughly enjoying her ride on big sister's lap, including a fun "I'm flying" pose!!!  : )

Hope enjoyed the functionality of her new wheelchair that allows her to now sit AT the table.  Her old wheelchair was too tall and did not fit under the table.  She took this opportunity at the table to help her mom make some oatmeal raisin cookies for her wonderful TA's birthday celebration the next day!

Gabi was soooooo excited for a turn in the wheelchair!  She finally got one when Hope spent a little time snuggling with mom on the couch.  Gabs was thrilled!!!

Notice Gabi is trying to mimic her big sis in every way. . . including wearing her shoes, and having the seat belt on!  Such a sweet little sister!!!
 A little video of her maneuvering skills. . . 

So because this post has taken me a few days to finish, an update on where things are at with her new chair. . . 

Hope continues to love the increased independence she is able to have with this chair.  I've gone to reach for her at times when chatting with someone, to find that she's already on her way!  She is doing fantastic at this early point with maneuvering, and with her visual impairment, this is quite something.  She is slow, but she has the strength to even go over lips on the floor, such as when entering/exiting an elevator.  Hope had a little bit of practice when we rented a self-propelling chair this summer for a month, while our wheelchair accessible van was being repaired.  Now that she has this for daily use, and this one is custom made for her, we expect her to improve even more!  She is having some struggles though, and so I'll share those with you, so that you can cover these concerns in prayer.

The first struggle is simply PAIN!  She is using so many muscles in ways that she has not used for FOUR years!  So her muscles hurt.  The worst pain right now is actually her thighs.  Strange you might think, but because of how upright she is in this new chair and how much she still has involuntary muscle movement (especially of her right leg when she is working hard with her arms to propel herself), she is sliding forward in her seat.  To push her hips back again, which she must do frequently now, she pushes on the foot rest with her legs, while pushing on the side arms with her hands, and tries to scoot her hips back in the seat.  This is a lot of muscle work that she is not used to doing so often.  Another source of pain is in her ankles due to wearing footwear all the time now and a better positioning of her feet/ankles, which her body is still trying to resist, as well as stretching ligaments, tendons, and muscles that are not used to their new postion.  Also the upright position puts more stress on her neck, and less ability to rest her head while in the chair, also resulting in sore shoulder and neck muscles.  So pain is really a big deal for her, yet again.  It is hard to push her knowing that pain is going to be an issue, at least for a while as she adjusts to this new chair, but we know that we must.  We are reminding her that the pain is evidence of her muscles that were ignored now being used, and this is good!  But she gets tired and sore, and even this reminder doesn't comfort her as much as we would like.  So please pray for us to be good encouragers and have wise balance in challenging her, as well as for Hope to trust the Lord through this transition and turn to Him for her strength to be up for the hard task, and His comfort to endure the pain!

We are also having a few minor glitches with the new chair, but as minor as they are, they frustrate the process for Hope when things don't work.  So please pray for us to figure out solutions with the wheelchair clinic, especially before things shut down for the holidays.  We were not able to keep Hope's old wheelchair (the Beast). . . the rule with the government assistance to purchase the chair, is that you need to have it for 5 years before you are allowed to keep it permanently.  So we had to return it, as it had only been 3 1/2 years.  Hope does not have any option now for another chair for a while, so we need to work with her to make this chair work, pushing through the difficulty of the transition.  The joy she gets from her increased independence is definitely a help with this!  As are your prayers, also. . . so thank you, as always, for the tremendous support you are on this journey with Hope!  Your continued concern, love, and prayers, are an incredible encouragement to all of us!  Another transition for sure, with pain and struggles still ahead, but we trust the Lord and have great hope for where He will yet take our sweet Hope.  So, goodbye Beast!  Hello new world of increasing independence and exciting opportunities for growth, always by the immense grace and enabling power of our awesome God, all to His glorious praise!

A last goodbye picture with The Beast!  : )
Thank you for continuing to join us on this God-appointed journey!  He is always good and you are always loved, dear ones!!!

1 comment:

  1. Hope you're so beautiful. Showed your video to Emily (6yrs) We're always learning to display the word "perseverance" you are a great example to so many countless people of all ages you dont even realize. Including your precious sister and the bond you have. You're gonna need some professional motorcycle gloves're working those hands of yours! We will pray for you at homeschool. Thank you for keeping us updated. Lots of love through our Lord and Savior, from California, the Crawfords