Well, this was a post that I have been wanting and meaning to share for a long time. As such, a lot has happened over the long while since I first started out to write this post, including some significant ups and down. I even noticed that I referred to it in my last post back in Dec 2016! Well, you have waited long, and God is so worthy of all praise, so here is an update on Hope's walking progress. . .
If you ask Hope what her biggest prayer request is for healing . . . even above her desire to see again . . . she would tell you she deeply desires to walk again! Our girlie has been a "goer" for as long as I can remember. I wondered after her brain injury how she would handle being so limited in her movement. It was hard for me as her mom to have the wisdom to walk her through such extreme loss . . . our gracious God definitely went before us in this regard! For sure there are times where Hope will break down and cry, not just a little, but a lot. . . sobbing really . . . because she clearly remembers the abilities she once had. At 9 years old, she was already giving her dad a "run for his money" when it came to a foot race. So even though I think that the healing of Hope's vision would drastically improve her quality of life and most increase her abilities and independence, she just wants to walk!
So because this has taken me so long to write about, and I don't want you to miss the journey she has been on over the past 1 1/2 years (yes, it's really been that long since I've wanted to write all this!), I will start from the beginning . . . all the way back to Sept 2016 . . . wait a minute, make that June 2016. However, I will make it as brief as I can, and just hit the highlights through Hope's journey to walk, so you can see the great God over it all, who knows her heart's desire, cares intimately for her, and has a plan that He has purposed for her in His goodness and faithfulness, whether she walks independently again or not!
I guess I need to first back up to January 2015 . . . about 5 months after Hope's back fusion surgery and in her Grade 7 school year. We had looked into a power wheelchair for her at the time, and that had initiated a couple visits by a Physical Therapist (PT) from Renfrew in Calgary, to assess her for safety in a power wheelchair at her school. These appointments went okay, but we decided to go with a manual wheelchair instead for the time being. However, upon those visits the PT was concerned about transfers and wanted to come back and visit again. Hope was still having a lot of pain and issues in the slow healing process after the back fusion surgery. These return visits didn't happen for a few reasons, however the next fall (Oct 2015), when Hope was into her Grade 8 school year, suddenly a new PT from Renfrew started coming to the school to follow up with Hope on this concern. By this time, Hope had healed significantly from the back fusion surgery, being over a year post-op, and so the PT looked into a few other areas such as self-propelling her new manual wheelchair (building her bilateral arm strength and coordination) and walking! She only came a handful of times that year, but this was the first physical therapy visits that Hope had received since her time in the Gordon Townsend Rehab School . . . since she left there in Feb 2013! So you can imagine how excited we were for this PT's expertise and help, especially at a time that God knew was a better fit for our girl who was finally healing from so many huge complications and surgeries! This PT actually got Hope onto a treadmill one time at the school and was impressed enough that she considered the possibility that Hope may have some potential to possibly walk. I also believe that she was impressed and deeply touched by the fact that Hope had a dear friend (Mr. Anderson . . . a staff member of the school and and attendee of our church), along with her precious Educational Assistant (EA), Mrs. Kornelson, that were walking with Hope at school, one day a week. They had seen and reported some progress to the PT in their self-made program that year, and I think this, coupled with Hope's expression of her passionate desire to walk, caught the attention and the heart of this sweet PT and her wheels had started to turn as to how to help Hope advance in this desire. Here is a video of Hope walking with her buddy, Mr. Anderson, and her best friend, Mrs. Kornelson . . .
June 2016 marked the end of Hope's Grade 8 school year, and in the final team meeting at the school, this PT referred Hope to a walking or gait clinic at the Alberta Children's Hospital (ACH) in Calgary. We didn't see that PT again, and we know that God lovingly and sovereignly orchestrated those "un-solicited" PT visits . . . and trust me, we had begged for PT options through multiple avenues and multiple times over the years since leaving the Gordon Townsend School. And yet, this PT just showed up that year. I love God's perfect timing and His continual reminder that He is over everything, to the smallest detail. We can't see the big picture, but He can, and He is a master weaver of a masterful and beautiful plan. . . weaving so many threads of people's lives to accomplish so much more than merely giving us what we want . . . far from it . . . that would be tragic to merely get what we want, wouldn't it?!?! What we want could be the worst thing for us! Rather He does what He knows is best for us, in His perfect timing and knowledge of His plan, and it is all for His glory and renown, so that we can become better worshippers of a God who is so worthy and point others to Him and His majesty!
September 2016 was an exciting month for us! We needed a doctor to sign off on the walking/gait clinic at the hospital, and at our regular appointment in June, Hope's physiatrist (doctor of physical medicine and rehabilitation) had agreed to do this. We were expecting a call from the gait clinic in September, however, instead we found out that Hope was not seen as a candidate for the gait clinic, but they were going to refer her to the Student Led PT Program at the children's hospital. This program allows PT students to get experience assessing and treating pediatric clients with a licensed PT supervising them. What is the saying . . . "beggars can't be choosers!" . . . and so we were thrilled to have "something in the line of PT" for Hope. Would they see what we had seen or maybe hoped for, for so long . . . potential worth pursuing?!?!
The long awaited appointment was towards the end of September. Hope was so excited! This felt like a huge win in and of itself, as back in the Gordon Townsend days of therapy, Hope herself, was half the battle of progress due to her resistance and struggle in working with therapists. We were so excited for her and we were eager in anticipation of what God might desire to do through this opportunity! Hope did fantastic with the male student PT, named Mike, and she loved the supervising PT, named Shauna. She went for a walk around the room and into the hallways and back, using her Rifton walker. She also showed them how she is able to walk up and down a few stairs. They were impressed and scheduled to see her again in a couple weeks.
Following the appointment, Hope had some pretty severe muscle cramping in her legs for several days. However, by the time we went back to the PT, the cramping had resolved itself. Hope saw the PT student one more time before he finished his program. Following that, the very kind supervising PT, Shauna, began to see Hope regularly. Her main objective was to find a walker that was a better fit for Hope than the Rifton, but each time that Hope came in to see Shauna (usually weekly appointments), she was almost DOUBLING the length of time she was able to walk and her coordination and balance were improving as well. Shauna started trying some new things, such as walking on a treadmill. It was hard on Hope, and there was some real pain and fear to overcome, but again, each appointment she was showing significant improvement. Where it was a struggle to go just 60 seconds the first time, she was up to 10 mins within two visits!
Here are two videos of Hope's first time on the treadmill. You can tell how hard it was and the pain she was in, but you can also see the excitement on her face at the very beginning!
The last video is hard to watch and remember the pain she went through early on. She was using a special walking device that is called a Litegait. It had a secure full torso suspended (or hanging) harness system. It gave Hope the confidence to focus on walking and she loved it! However, this Litegait is a $5000 piece of equipment and not covered by any government funding for home use. So Shauna continued to see Hope and assess her for a walking system that could be used at home and would be mostly covered by government funding.
By December 2016, Hope's walking ability had significantly progressed! Not only her ability, but her endurance as well, had significantly improved. . . she was up to walking for almost a full hour and we had to tell her it was time to stop because her appointment was over! She loved to clarify that she could have gone longer! She would still have some pain, but nothing like at the beginning. Here is a video of her walking in the hospital hallway in a Crocodile walker in December 2016. . .
As with most of Hope's brain injury recovery, her journey to walk did face some bumps in the road. Her seizures had improved the summer of 2016 and throughout that fall, but in January 2017, Hope's seizures became more significant again and continued to remain that way through the end of her Grade 9 school year, through June. With the more frequent seizures, her walking abilities not only stopped progressing, but really seemed like they were going backwards. She didn't have the same endurance, coordination, or balance . . . or desire to work hard, as she struggled with the worsening seizures, and the frequent changes in her seizure medication/treatment attempts that came with their own set of side effects.
Shauna continued to work with Hope through that time, every 1-2 weeks. This was an incredible answer to prayer, as not only did Shauna keep up on Hope's journey to walk, but she also worked with her on transfers, standing, sit to stand, squatting, and even helped us trouble shoot several other complications that arose on the journey. One of these was her right foot that suddenly started to turn out to the side. It put a tremendous amount of stress on her hip joint where the leg was twisting from. Shauna brainstormed lots of options to try to help Hope's leg straighten. None of us are quite sure how, but eventually Hope's hip did quit twisting out to the right, but then it continued from the knee down and caused even more pain and strain on her knee joint. Her shins would also ache from the strain on them. She was determined to keep walking and we worked with her on trying to intentionally keep thinking about straightening that foot with each and every step. It was extremely labor-intensive and exhausting. Again, we're not sure when it changed . . . it was a really slow and gradual change, but eventually the pain went away and although she still has a tendency to slightly rotate to the right, it is much improved and doesn't result in the same level of pain. Praising God for His grace!
Hope has continued to have seizures, but they have lessened a bit beginning the summer of 2017. With that, her progress has started to pick up again. I started working with her this past summer on taking steps without holding on to anything . . . including ME! In the past, this was an absolute "no way" for Hope! Not only would she lose her balance and confidence, but the fear would be so intense that she would immediately just fall in any direction! We knew that her vision impairment was one of the biggest elements of her fear . . . she couldn't see and that made it incredibly hard to find her balance as well as to take a step in faith when you couldn't see what you might grab on to if you started to feel off balance. Try walking with your eyes closed some time . . . you'll see how it affects your balance! When Hope is afraid, her muscles do the opposite of what she wants and often revert to some of her past involuntary muscle movements, such as the right leg that lifts up, and leaves her like a one-legged flamingo . . . soon to be followed by a fall! Knowing that half of her battle was her vision helped us to know how to encourage and help her to work towards taking a step of faith . . . quite literally!
We started with having Hope stand and then practice continuing to stand and keep her balance as we took our hands away. We figured that if she had learned to balance when sitting, it made sense that she could learn to balance while standing. It helped to have someone behind her and someone in front of her for extra encouragement and security that she wasn't going to fall. To begin with, Hope would fall to the front, back, or side after a couple seconds. Each time we practiced, we timed her and we tried to encourage her to take a wide stance and then try to go for a few seconds longer than the last time. For a kid that LOVES to set records, we should have known that would have been gold. It didn't take long before Hope could stand for long periods of time without holding onto anything and keep her balance. This was a huge step forward in her journey to walk, as it increased her balance AND it increased her confidence! I still remember when Hope showed the PT, Shauna, for the first time how long she could stand on her own . . . she went for over 5 minutes and then our new joke became that we would have to start pushing her over now, cause she would just go on and on and on! A joke that received a VERY large grin from our excited girlie of yet another milestone achieved!
Then came taking steps without holding onto someone. This is still a work in progress, but Hope loves to set records and her current record is 12 steps!!! This may not sound like much, but it is incredible when you think back to where Hope came from. We came across some old videos of Hope walking. They made us smile . . . first of all, because we laughed at ourselves and the "blind" hope that we ran on back then, that our Hope would walk again some day! When you see these old videos, you will laugh alongside us and wonder what it was that we saw that made us think she would do it . . . maybe just the grace of God to keep us filled with hope, taking one day at a time, loving our determined little girl, and trusting in His ability to do the impossible!!! We also smile because we are reminded that our God is able to do just that . . . the impossible! Take a look and smile with us . . .
Hope's PT, Shauna, has become one of Hope's favorite people, and continues to be such an incredible blessing to Hope! She is a fantastic cheerleader as well as creative and skilled PT! We don't see her as often anymore, but whenever we encounter a new pain, or need some new ideas, or help with a specific goal, Shauna is willing to see Hope and help us with the next step in her journey. Shauna has been a true answer to prayer! Probably an answer to prayers that many of you have specifically prayed for our girlie!!!
Present day!!! Hope just received a new Crocodile walker of her own a few days ago! She immediately spent more than a half hour standing in it. It is more lightweight and compact to make it easier to use. Our hope is that she will be able to use it somewhat at home, although it is hard to have enough room to maneuver around freely. Now that we have it, we'll need to start working with it and see what we can figure out. It might also be helpful to find a place that she can take the walker and practice longer distance walking minus the obstacle course at home! Unlike
the old Rifton walker, Hope could fall over in this walker and she
needs to lift the walker to turn corners, so she must have a certain
amount of balance to use it safely. We will be supervising her until
she shows the ability to be independent with the walker.
A few other new milestones have come along with the strides in walking, and I'd love to just tack those on here quick for you to marvel at God's goodness, and to share in the joy we all feel as Hope gains little steps of independence, which are HUGE!!! Shauna, PT shared with us that she was in a conversation with the fella that owns the company we purchase Hope's medical equipment from. They were discussing what equipment would be a good fit for Hope based on what Shauna saw Hope capable of. He asked about her ability to stand up out of her wheelchair, to which Shauna replied that she did not believe that Hope would be able to do that. The very next appointment with Shauna, what do you think Hope was excited to share with her wonderful PT friend! Yep, I'm pretty sure you guessed it . . . she had stood out of her wheelchair all by herself! It was actually quite the story. We had just got home from church and Hope was parked in the entry way where her wheelchair sits when the wheels are wet and covered in snow. We then will walk with her into the house to her bed or her recliner chair while the wheelchair dries. Trevor and Gabi were outside shoveling snow. I was putting something away in our bedroom, when I heard Hope call for me. Thinking she was just wanting me to come walk her somewhere, I called back to let her know I was busy but would be there in a minute. I heard her call for her dad and sister, and then again for me in a sort of stressed voice. I started to panic, dropped what I had, and came running, thinking that she was having a seizure. Then I really started to panic as I rounded the corner to find her standing by herself in front of her wheelchair . . . a little amazed at herself that she had done it! To say she was thrilled would be an understatement . . . and telling Shauna at her next appointment was precious as Shauna relayed her conversation with the equipment fella just a few days earlier, as well as her lack of surprise that Hope's prayers had been answered yet again! Hope did have a couple falls continuing to practice standing out of a chair on her own, and she is a bit more cautious now as a result, but the ability is there. And with the addition of a standing pole that is next to her bed, and switching to a half rail on her bed, she can now transfer herself from her wheelchair to her bed, ALL BY HERSELF!!! She doesn't even need someone there supervising anymore! Hope can also sit herself up at the edge of her bed, and she can stand herself up and keep her balance, then sit back down again.
She is still working on transferring herself from sitting at her bedside into her wheelchair without assistance, but we are going to keep working at it. She is also eager to start trying to stand up from her bedside using her walker and then try to walk to the bathroom or living room using the walker. Some new goals to work at and see what God has for her!
Here are a few videos of Hope doing some of these new milestones for you to see, enjoy, and praise God for His work in her life . . .
Well, you made it to the end . . . and you must truly love our girl and our family to get all the way to the end of yet another long and detailed update from me! I hope though, that sharing some of the details of the journey have created an awe in your heart and mind for the God over Hope's journey to walk! Our girl has worked hard and endured much pain and frustration, and we have had amazing people surrounding her and supporting/helping her, but that's not the ultimate reason that this girl is still making progress over 6 years post brain injury . . . we know that full well! God has a plan for our Hope, it is a good plan, it is a plan that brings Him glory and accomplishes His purposes . . . His Kingdom purposes . . . what matters for eternity! We don't know if that plan includes walking independently again . . . or as Hope would say, RUNNING, cause if she ever walks again, running would be the next logical goal! We know that ABOVE the hope to walk again, Hope and her family desire to see souls come to saving knowledge of Jesus Christ . . . nothing would give us greater joy! So please continue to pray for the precious souls that interact with Hope's journey, especially her journey to walk! We were told a long time ago, that Hope would never walk, and that may be or it may not be . . . we love that we can trust the writing of her story to such a faithful and powerful God, who will work all things to His glory and for His good purposes!
Thank you for praying for Hope, including her ongoing desire and journey to walk! You are so very loved, dear ones!!!