Sunday, January 5, 2014

A New Year

I have been reluctant to post much about Bryn's progress, as it keeps flipping from jubilation to extreme disappointment, and we finally decided to ride it out a bit longer before trying to give an update.

The last break, which they had hoped would heal within 3-5 weeks, ended up taking two and a half months to heal. Part was spent casted, the rest just on crutches/in a wheelchair. It was a happy day for Bryn when they finally allowed her to walk again, (again!), on both her legs, however, it was short- lived as within the next 5 days, her leg had swollen up tremendously, her knee the size of a football.

Her physiotherapists were very cautious and nervous that the leg had broken again, but over time it appears that it is the tendons and muscles running down to her knee that have created the problem. She had basically lost all the muscle in her left butt-cheek and hip, which are necessary to help lift the RIGHT leg while walking. Because she couldn't, her bad leg was taking a brutal amount of twisting and force to get her right leg up, and couldn't take it.

So, back onto the despised crutches she went. After time, they put her down to one crutch on her good side. (The physiotherapist told me he had at first presented her with a cane to use instead of one crutch, but the power of her withering glare and her adamant admonishment that she was 13, not 90, quickly shot that idea back into the closet). So, around she has been hobbling with one crutch.

The good news is that they are amazed at how quickly she is progressing in physiotherapy. She accomplished more in one week of appointments than they were anticipating she'd accomplish in months. So once again, I am reminded that her strong and determined personality is a gift (in this situation, anyways), and continues to propel her towards recovery. Today, she is limping part-time with no help, using the crutch when she is tired and unable to walk well. So, that feels like progress.

We just passed our three year anniversary. It seems impossible. Time still feels frozen.  It feels like a bungie cord has been attached to our hearts and though the calendar keeps turning,  the physical pain and issues, keep pulling at us emotionally. So, as much as we try to move forward, it feels as though we fight against the force of being tied to the moment those vehicles collided. Unbelievably, we have in the last three months, had more chunks of glass work themselves out of the children's bodies, including two new large pieces in the back of Lauren's head. How do you untie yourself from that?

I realized this anniversary, which was difficult, that December 28th is not just the day we mourn the loss of our Myron. The loss of a husband, friend, father, brother. It is the day Bryn lost the ability to dance. It is the day Taeryn's brain and personality was changed for life. It is the day that I lost the ability to do the simple tasks around the house, or with my children, because of injury. It is the day we lost our income, our way of life, our schedule, our hobbies, the children's peace...the list goes on and on. There is a lot to mourn from that one moment in time.

Just before Christmas, Bryn spent a night in an incredible amount of pain. She called me from downstairs at 3:00 a.m. because she couldn't stand it anymore. It has been a few months since it has been this bad. We spent so many nights trying to make it through to the next morning, nights when nothing stopped how badly it hurt. This was one of those nights. I finally crawled into bed and just held her; there was again, nothing more I could do. I began to pray that God would relieve her pain, but we have prayed that so many times in the past and still had to endure. Finally, in silence, I desperately began asking, over and over, to give me her pain. Let me take it Lord, I cried. I cannot bear to watch her endure another moment, let me do it. Let me do it for her. I'm begging you.

After a few minutes of this internal plea, Bryn whispered, "I think it's getting better." And finally slept.

I was so grateful. As I finally got back into my own bed and lay there, God's love for us flooded me; it truly overwhelmed my heart and my mind as I felt the truth of a God, who after enduring the suffering of His children reaping the rewards of sin on this earth, finally had to cry out, "Let Me take it! Let Me endure it! I cannot stand another moment of their pain. I need to take their pain!" And He did.

Our pain is temporary. Thank God, it is temporary, even when it appears unrelenting. Even when we feel tied to our circumstances. Even when He asks us to endure and we don't know why.

I pray that whatever we encounter this year, whatever we are momentarily tied to, be it difficult or full of joy, we somehow are able to glimpse the heart of Jesus in the midst of it. That we might learn one more thing about Him; about His love for us. I know so little of a God so big. But His love...His love I know.




Wednesday, November 13, 2013

A Step Sideways

Our appointment with the surgeon last Wednesday felt rather like...a step sideways. If Bryn could step. Which she can't. At least not to the left. The leg is still broken but other areas that hadn't filled in yet have shown some improvement. They decided to remove the cast in order to help her knee which has such limited mobility in it, that every day it remains frozen makes our physiotherapists groan with frustration. She is to remain off of the leg for another four weeks, in hopes that the break will heal.

We are doing a lot of waiting. It was good news that it hadn't worsened (unlike the time before), but somehow it still didn't feel like good news. When you are holding your breath for five weeks (after holding it for 8 months), being told to hold it for four more weeks feels...discouraging.

The reality of how fragile her leg is hit her hard shortly after. One day we were all walking into a store. One of the kids was jumping and misjudged the distance in front of them, stumbled and accidentally banged into Bryn who was on her crutches, having just had the cast off. The impact sent Bryn's crutches flying out of her reach and knocked her off balance. No one could react quickly enough to grab her, but thanks to her amazing flexibility and balance, she managed to do some kind of strange hopping-manoeuvre that I still can't understand was possible and kept herself upright, with her bad leg in the air. The sibling was, of course, absolutely mortified at their mistake. Bryn burst into tears and we all had to stop to gather our composure and reassure ourselves that she was okay. It feels as though the slightest mistake, one misstep, and everything shatters.

Life is feeling that way. I imagine that everyone, at times, feels that way. One wrong move, and everything could be gone. One misstep, and it will all fall apart. I make the mistake of feeling like it is all on my shoulders. I make the mistake of believing that it is all based upon the decisions or opinions of other people. I am trying to find the strength to remember that it is not their, but rather His, opinion that will dictate our direction; that this is His story and we are merely characters in it. But characters who are loved. And that maybe a step sideways for us, could be a giant step somewhere else for Him and His plot line. I don't know if I'll like the book, but I know the writer...and He can (I feel somewhere inside of me) be trusted to make the story beautiful in the end.


Wednesday, October 30, 2013

A Widening Gap

Bryn's last visit back to the surgeon showed that her leg was worse. The break is not healing but widening, and the new growth is extremely fragile. Her leg is barely holding together and the surgeon is worried. Very worried.

They've now casted her from hip to toe in a heavy plaster cast (why they decided against the body cast they wouldn't say...I'm at the point where I want them to wrap her entirely in plaster and glue her to a bed). That was two weeks ago. Next week, November 6th, we go back to see what the options will be. Hopefully, prayerfully, the leg will get its act together and begin healing. I don't want to think what the other options are.

Bryn is doing incredibly well emotionally. She is so positive and matter-of-fact. And we give great thanks that she is not in pain, that makes a world of difference.

So, if there are those that would fervently pray with us this week for good news, we ask for this leg to be made whole again; for healing; for the chance to dance again. And for the strength and faith to continue believing that as He has shown us in the past, He will continue to go before us and lay the groundwork so there is a foundation for us to stand on, no matter what it is we need to face; and that He will do it with His enduring love and mercy.

On a completely different note:

Karson came to me yesterday with this news:

K: "Mom, there's a cat in the pool!"
G: "What do you mean?"
K: "There's a cat in the pool. And it's floating...like this!" (imitates a floating cat)
G: "NO! You're kidding, right?"
K  "Mom! I'm not, kidding! It's floating in the pool (repeats the imitation) and I think its dead. It must have drowned. Come and see!"
G:  "No, I can't look. I can't. That's horrible. Somebody's poor cat died in our pool! How are we going to get it out?"
K: "Well, Bryn's sitting out there. She's got a stick."
G: "Oh good! She's getting it out then?"
K: "No. She poking it so it'll turn around the other way. She wants a better picture of it."

Sigh.

I couldn't even bring myself to go look at it, never mind try fishing it out (what kind of cat falls into an above ground pool?). So, I called my friend who was working an hour away and asked if he could stop on his way home after his very long day of work and fish a dead animal out of our ice cold swimming pool, which to the credit of his very kind nature, he did.  Then I had to go tell the neighbours that poor Brutus has drowned. He had been missing for four days.

Karson made the astute observation that having been in a freezing cold pool for four days, a fluffy cat was not longer fluffy.

I am the worst neighbour ever.




Wednesday, October 2, 2013

NO!

 Bryn's leg broke.

She has been out of the frame for one month, almost to the day, and we don't know for sure what happened, but x-rays show a piece of bone has broken off and a crack has opened horizontally just above the knee. Because of the location, she cannot be casted without a spica cast (both legs, partial body cast), and a leg cast would put too much pressure on the fracture and break it more, so she will have to go without a cast making the risk for a complete shatter high if she slips or knocks it. So, she will be back in the wheelchair for the next four weeks, all physiotherapy has stopped, and we are feeling...kind of sick to our stomachs, truth be told.

One minute, Bryn is terrified of shattering it completely, then brazenly refusing to let it stop her the next. It is like trying to keep up with a split personality. I can relate though. One hour I am resolute and thinking, "Well, we just keep trying!", the next hour I find myself crying. Oh, I was so hoping it would just go smoothly!


Wednesday, September 4, 2013

OFF

The procedure to remove the Ilizarov frame went smoothly. I took a look at her latest x-ray...her femur looks a bit "swiss cheese-like", what with the missing "shark bite" and now six large holes where the rods had been. How she will function without it snapping is inconceivable to me, but that is not in my hands.

They got her pain under control fairly quickly and this morning she is limping around with no crutches. And regular pants on too! No more velcro seams!

I am having a difficult time reconciling in my head that this stage is done. No nostalgia, nor any sense of sadness. Just some disbelief, I suppose. Wow, it's off! It kind of reminds me of Thanksgiving dinner. You spend a week planning the menu, cook all day long, take the pains of setting the table just so, getting everything right...then people sit down and within 30 minutes, everyone's full and pushing away their plates. Every year, I am struck with how much work went into providing 30 or so minutes of feasting (added time to sit groaning rubbing your belly of course!).  The turkey is annihilated, serving bowls are empty, gravy sits congealing, what were glistening plates now sit out of place, stained with the hard work of readying a banquet.

The frame came off within 40 minutes. All those months of waiting and working to make her body ready, then enduring the seven months of wearing it and all that entailed...and off it came, quickly, pieces lying in a heap somewhere within the walls of the hospital. It feels a little like Thanksgiving dinner...surreal that in less than an hour, it disappeared, just vanished. I'm a little out of sorts today, I think, trying to wrap my head around that. I think I am afraid that we will discover that something is still to surprise us, overlooked, like a side-dish that was left in the oven and forgotten to be placed on the table with the rest of the food. But I want to believe that she is done the worst of it. So I will ask for the faith to believe that and to enjoy the satisfaction of what has been accomplished.

I'm next. I see the surgeon in two weeks to find out what can be done to repair the damage in my shoulder and neck. It intimidates me, being out of commission. I don't know how that is supposed to work, not being able to function at full capacity, but somehow it will. Tendons need to be stitched back onto bones, ligaments repaired...I am not looking forward to it nor the long months of recovering the use of my arm afterwards, but I keep thinking of Bryn, of all the kids, of what they've gone through and how they've been so brave and fought so hard. They will inspire me to keep trying, just like they've been doing for the past two years.

And so, its off! Yea, its off! They will continue to track her until she is fully grown and we pray that the leg will keep up with her growth and that this will never have to be repeated.

It's off!

Wednesday, August 28, 2013

Hooray!

This morning we made our regular trip into BC Children's Hospital to meet with Bryn's "team". Only this time, we came home with great news: The Ilizarov frame will finally be surgically removed on Tuesday, September 3! That is the first day of school, and to my amazement, Bryn asked if they could move it instead to the 10th so she wouldn't miss orientation! The surgeon told her that he was leaving the country after the 3rd...so did she want the 3rd or sometime in October?

Well, when you put it that way...the 3rd, please.

Tomorrow, it will be 7 months since the surgery to put it on. She has had 11 infections, three hospitalizations, countless hours of physiotherapy and more pain then I can relate, but she did it! She made it through, and we are so happy to leave this stage behind.

There remains another year of physiotherapy to work on her frozen knee and shrivelled muscles and ligaments. Because they are removing the frame well before the bone is completely filled in, it is fragile. Jumping, running or a fall could snap it, so she will have to be extra cautious. I think not being able to dance yet might be even harder, now that she feels free of the steel, but the reality is that dancing and true freedom are still a ways away.



For those who are interested: Over time, we slowly had separated the two pieces of bone until there was a 4 cm gap. Then the bone needed to fill in. The first x-ray is from June 12, 4.5 months into the frame. It shows that the back of the bone had filled in, but what they call a "shark bite", or a missing section of bone, was left around the front side.  The second x-ray is from today. It shows that the missing section is beginning to fill in, but as you can see, a significant section of bone is still missing and needs to grow. Until it fills in, she will be at risk for another break.

So, just like I'd say, countless times, to her when she was a toddler: Please handle it carefully and  DON'T BREAK IT!

I think I am going to be a bit of a basket-case until I see an x-ray that shows a solid bone.

So, six more days of lugging this thing around, and then off it goes. Hooray!


Thursday, July 11, 2013

Dancing Towards The Goal

It scares me how fast technology is changing. Just trying to figure out how to add a post is difficult because they keep changing the layout and I can never find the "new post" button. To be fair, I am not the quickest component in the motherboard of life (I don't even know if that makes sense). I often find myself a step or two behind the latest wave of technology, a detriment that appears to be directly connected to the eye-rolling of my children. The worst time was back when I found out Myron had an email account (if I wrote about this already, I apologize!).

We didn't have a computer at home yet and I happened to overhear Myron on the phone. He was giving out his email address. I didn't even know he HAD an email address! I was so excited. If I knew his address, I could give it out as well and get emails brought home via Myron from work. I pounced on him as soon as he got off the phone, demanding the address so I too could benefit. He gave it, _____@hotmail.com.

I proceeded to rip a strip off of my poor husband.

"WHAT?" I snarled (really, I was snarling). "That is the most ridiculous email address I've ever heard. What are you thinking??? This is your professional email address, what will your boss think?! You can't call yourself a "hot male"! What IS WRONG WITH YOU!"

I remember he stood there with his mouth hanging open...remembered how to use it again and did so to explain that "hot mail" was the name of the SERVER, and NOT his own personal email signature. He then laughed for ten minutes while I apologized over and over for my rip-roaring tongue lashing and it became a new best-dumb-Gillian moment for quite some time.

These past few months have proven to be another example of trying to keep up to a situation that seems to always be three steps ahead of my abilities. The see-sawing of Bryn's progression towards a healthy leg has been confusing and frankly exhausting. For all of us.

The worst thing have been the infections, because when they take hold, not even morphine can control the pain. She had a reprieve for about 6 weeks without one and suddenly it took hold again and we are on our third round of antibiotics.

But the bone is growing. Slowly. The leg is becoming stronger and we know we are getting closer. There just seems to be so much to keep up with. We have to measure the distances between the frame rings every night to make sure the bone isn't compressing too much when she walks. At first, we completely forgot and the inside of the bone had compressed 9mm which sent us into minor hysterics. I was sure we had wrecked her leg, that we'd have to start all over again...until the surgical team assured me everything was fine, we just needed to lengthen it 9mm and keep it there. Phew!

Then we got the strangest call. Bryn got a call on her phone from the hospital confirming her surgical date. She was so excited thinking that they were ready to take the frame off! It was from the offices of Dr. K Brown (our doctor is Ken Brown) but as they were asking her some details, she noticed that the call-display was the Burnaby hospital, not BCCH. Somehow, a different Dr. K Brown had accidentally dialled her number thinking they were contacting their own patient who was waiting for surgery. I thought, how is that possible? What are the odds that a different doctor with the same name had a patient who was also waiting for surgery and they accidentally called the wrong number to a cell phone she had gotten just two days before?? Bizarre. The odds for that must be astronomical.

Anyways...

We are hanging in there. Her knee has been swelling to the size of a cantaloupe and bleeding out the sides, which isn't fun. She has so many bad days and the whole experience has been so much more difficult than we could have imagined, but she's handling it. And at times, even surmounting it.

This is a picture she took on a good day. She misses dancing so much and we all look forward to the day when she can dance again. I love this picture. It speaks off determination and strength (and a touch of flexibility!) as she dances in her own way towards the goal.


And not to toot my own horn, but I even managed to upload this picture completely on my own!