Five Years Old Now…A Milestone (Feb. 2012)

Eden just celebrated her fifth birthday. Every milestone for Eden definitely causes me to reflect on how far we’ve come. I say we because I truly believe its been a family journey, one where everyone has had to make sacrifices in some big or small way to encourage the success of another.

We now see our surgeon two times a year. Wow, what a difference from going weekly! Our visit in March, 2011 had me a little rattled. There were some discrepancies between the two surgeons as to whether or not Eden had a muscle disorder which was causing a weakness in her muscles. After a year and a half post surgery, she was still using her upper body strength to support her to a stand from a squat position. It terrified me to think that this was a possibility and we began to question whether or not a second opinion was necessary or what else we should be doing for her. After meeting with the many professionals in Eden’s life that are responsible for most of her recovery, and having seen the extent of her capabilities as well as having seen other children with this muscle disorder, they reassured us that this was just not the case. It is scary for a parent to know who to trust when making decisions for the health and well-being of their child when the professionals are at odds with each other. Once again I felt my faith being stretched to trust in a God who had Eden’s best in his hands and knows her future.

Our September appointment of 2011 was much more positive. The surgeon was thrilled with Eden’s progress. She was now able to sit in a criss-cross legged position like all of her other friends at school and get up rather easily from a squat position with no support. Although these may seem like simple tasks to the average child her age, Eden had been working on them for months and I reveled in her face as I watched it light up as she was all too proud to show Dr. Peterson “criss-cross applesauce”. As I asked the doctor if he was pleased at her progress thus far, his response will be etched in my mind forever. He said, ” to be honest with you, every time I see Eden in my waiting room I get butterflies in my stomach because I have no idea what to expect. She was the most difficult case I have seen yet. Whenever I tried to fix something, her muscles did the opposite so I am thrilled with any progress”. I appreciated his honesty that day but couldn’t help but be moved to tears on the drive home as I thought about what he said, feeling like Eden had stumped even the medical field and her journey was like no other and humbled that I as her mother, couldn’t rescue her from it.

We are now preparing to return to our surgeon for our first visit in 2012, on March 7. Eden does a strength and endurance swim class at the children’s centre weekly, has physio bi-weekly, sees an osteo once a month, and will continue to see the massage/physio therapist three times a year. We have been able to celebrate more than her fifth birthday though. Eden played soccer in the summer, began to skate this Fall, is presently in a gymnastics class and just wants to learn how to be a hockey player like her brothers. I love the determination that this girl has been given and her delight in life to not let her limitations slow her down. If you met Eden today and did not know what surgeries and recovery she has been through, I am not sure you would be able to tell that anything was different about her gait.

As I close I have to tell you about Stella. Stella is a little girl we met recently who had to have the same hip surgery as Eden. Thankfully for Stella, she was diagnosed at 18 months ( a whole year earlier than Eden) and had only one side of her hip affected. She would then be put into that hip spica cast that Eden had, from armpits to toes. A mutual friend of ours connected us with Stella’s family and we were able to share a wealth of knowledge with them and walk “a little” in their shoes. I shared with the family my blog which for me was like a prayer answered…dream come true. I wanted this blog to be a help to other families who may have to endure a similar experience, to prepare them for the road ahead and be of some comfort that they are not alone in their feelings. The coolest part was that Eden had a piece to pass on as well. We were able to give Stella the desk that Eden’s Papa made for her. This desk allowed Eden to be active in an upright position doing crafts, having tea parties, colouring and eating with our family at meal times. It changed her world then and now it changed Stella’s. Although Eden had a few tears parting with this desk, she immediately coloured Stella a picture to put inside it and was thrilled to see pictures of Stella having a tea party in her full body cast, sitting at her old desk! Makes me wonder what other ways God will use Eden in her lifetime to affect others because of the journey she has been on:)

Uping the anti…(Sept/Oct/Nov, 2010)

I have been writing this blog in my head for about a month now and haven’t found a block of time to sit down to write it.  I  have realized how much I have missed writing though and know that it is a very healthy outlet for me to process my feelings and thoughts this way.  For that reason, I need to discipline myself to create space to do this so, tonight is the night…where shall I begin?

The fall has been a season of “uping the anti” for us in regards to Eden’s recovery.  We have seen amazing progress in Eden through her physio as she has gone from only being able to pull herself across a floor in an army crawl fashion, to being able to ride a tricycle, climb monkey bars and even begin to run.  She has worked hard and we are so proud of how far this determined little girl has come.  Having said that though, Eden still struggles with a limp on her left side.  She doesn’t seem to have a full range of motion in that hip and to compensate for that, she has developed quite an inward step on her left side from the knee down.  So, we made a decision to explore other options on top of the physio twice a week to see if we could help her reach her fullest potential.  Eden now has physio twice a week, gets massaged once a week, sees an osteopath every two weeks, a naturopath once a month and still has meetings with her surgeon in Hamilton every two months.  My life feels organized around appointments!

Ben and I didn’t really know much about an osteopath but we were challenged by a trusted relative to give it a try to see if she could help.  Our first meeting with the osteo happened two weeks ago.  She worked on Eden for an hour, manipulating her bones to reposition them.  She was very gentle with Eden and Eden was so relaxed that she even fell asleep.  We weren’t even sure how much to buy into this but she told us many things that were happening in Eden’s body with her bones not aligning properly that were quite fascinating.  She had a very optimistic view that she could make a difference and so did we (with a hint of skepticism).

The next day was a complete right off for Eden.  She started the morning off in a very grumpy and emotional mood, crying at the drop of a hat.  Then it was time for her physio appointment.  Eden couldn’t do the simple tasks that Anna had requested of her and in fact, burst into tears looking at me with those beautiful blue eyes complaining that it hurt too much.  It took everything in me to fight back the tears.  We couldn’t get through that appointment, she was far too uncomfortable and I was left feeling this awful mom guilt that I had put her through too much.  That evening, I was a wreck, so unsure of what the best was for Eden.  To make it worse, Ben and I weren’t even sure if we were on the same page.  We phoned the osteo explaining what happened and that we did not see evidence of physical change in Eden’s walk.  She wasn’t surprised by the emotion, discomfort and lack of improvement and asked to see her again in two weeks.  Another week went by and suddenly we noticed that Eden did not walk with an instep on her left side anymore.  She still had the limp, but her foot did not swing inward any longer and that was a marker of huge success to us.

I have also taken Eden to see a naturopath.  To be honest, I wanted to find natural ways to support her bones and detox her body from all of the anesthetic, x-ray and cat scan radiation she has had to endure over the past year.  What I didn’t realize was that this would be a full time job to remember to give her 40 drops of this, 1/8 of a teaspoon of that, 1mL of this,  and two drops of that twice a day.  I will admit,  at times it feels a little hokey.  I second guess myself and wonder if its really doing anything for her.  Do I have confidence that I am making the right decisions for Eden?  Not completely,  but I am walking by faith, not leaning on my own understanding and praying for the wisdom to know what she needs, when she needs it.

What has encouraged me the most in this process, is feeling like we have an army supporting us.  I was at Tabor Manor the other week, visiting a few friends of mine and a lady stopped me, introduced herself and told me she has been praying for Eden since the beginning of her first surgery.  She is in her eighties (I think, but she sure doesn’t look it), and has been following this blog!  I found that truly amazing!  She told me that one of her daughters had hip displasia and she could totally relate to what I was going through.  I can’t tell you the comfort I felt from that interaction…knowing that people were traveling this journey with us in so many ways.  So, if you are reading this blog, I truly thank you for being with Eden and our family.  I can’t tell you what that means to me.

Snow White went a little crazy on the lipstick this year!

 

Eden and Anna in Action…(Physio -July, 2010)

It may look like dance class, but Eden is working hard trying to gain strength and flexibility in her hip flexers.

Meet Anna!  Anna has been Eden’s physio therapist since March 2010 at the Niagara Penninsula Children Centre.  I had hesitations at first, wondering if Anna would ever get anywhere with Eden because Eden was so very nervous to have anyone touch her legs.  She told me that the first couple of visits she wouldn’t try too much with her, trying to gain Eden’s trust.  She played a lot of games with her but all of them having a hidden motivation to get her to move in ways she hadn’t before.  I remember Anna asking me what the end goal was when we started because she could barely do anything with Eden.  I was wrecked at the thought that this was possibly it for Eden and felt like Anna had little hope too.  Since those first visits and impressions, Anna has made leaps and bounds with Eden and we have been so pleased.  We are so thankful for her dedication, patience and creativity she has for Eden.  When we started, Eden was still army crawling across these mats unable to put any support on her legs.  I have forgotten how far we’ve come.

Eden calls the centre “Anna’s house” and we use to get tears when we mentioned going there but progress has been made from those days.  I take Eden twice a week for one hour to see Anna.  They do lots of creative play together which Eden usually enjoys.  She has ridden tricycles, used tread mills, steps up blocks, rolls on balls, plays bean bag basketball, pops bubbles with different limbs, walks on bridges, climbs ladders and stairs, picks out toys from sandboxes with her feet…only to mention a few of the creative things Anna does with her.  The last part of the hour though is the stretching part where Eden literally loses her marbles.  That has never been an easy experience for her (or Anna) but necessary.  So we grin and bare that part and start all over again next time.

Two weeks ago when we went for our regular visit to Anna’s house, she asked me if it would be okay if she came along to one of our Hamilton appointments with Dr. Peterson.  I was blown away because it was something I had always wanted her to participate in but thought it would be way too much to ask.  She cleared an entire afternoon in her schedule to meet Eden’s surgeon last Thursday.  They were able to talk medical talk and get the full story on all of her surgeries.   She wanted to know the best way she could support Eden.  It was awesome and I was again so thankful that we have professionals in our lives that care so much about Eden’s recovery.  Here are some more pics of Eden and Anna in action.

Eden on the tread mill.

A little pose for the camera!

A high step to get up for Eden but proud of her accomplishment!

You can always tell when Eden is concentrating...the tongue is hanging out!

Baby step progress and baby stretches…(June/July, 2010)

The C.T. scan went very well.  Better than both Ben and I expected.  Of course it works out that way when dad takes her…ugghh!  Apparently she stayed completely still, long enough for them to get the picture they needed.  The follow-up visit for results was to be the next day, however, I received a personal house call from our surgeon who told us not to bother coming up to Hamilton that day because her C.T. scan looked great.  A relief indeed, but what did great mean?  Well, what it did tell us was that her bones were in tact, nothing was out of place.  What it didn’t tell us though was whether or not there are issues with her muscles or a lack of blood flow through her bones.  I still had unanswered questions.

People (thinking only of Eden’s best, I have no doubt), have been asking whether or not I have tried taking Eden to the chiropractor, massage therapist, tried this technique or that one, or perhaps to baby yoga?  Suddenly I began to feel very overwhelmed wondering if I am the reason why her recovery hasn’t been moving along faster.  Feeling solely responsible for her recovery and very guilty that I didn’t have more time to spend just on her, I cried many of times with a pain in my heart, fearing that I had failed her and wishing circumstances were different.  While taking Eden to physio twice a week, setting aside time to do her stretches three times a day and caring for three other children has been a challenge, I was still haunted by the question, was there more I should be doing?  I couldn’t wait to have another Hamilton appointment so that the surgeon could guide me more thoroughly.

The visit to follow was a good visit.  Her surgeon reassured me that he sees progress with Eden and he was happy with it, or at least not unhappy.  Then he said, “you know, I see hips all the time in surgery and everytime I am in the O.R. I can’t help but think of Eden”.  At that moment I had to hold back the tears feeling like God gave me a gift knowing exactly what I needed to hear and when I needed to hear it.  Doctor Peterson totally cared about our Eden and her recovery and suddenly I didn’t feel all alone in this.  The surgeon then reassured me to continue doing whatever we were doing with her and if there were things we wanted to try, that was totally up to us.  At this point though, she was progressing and he didn’t want to mess with that by doing anything too intrusive in case her muscles backfired on us again.  I agreed and left feeling some relief.

Eden has been great, putting up with her stretches with us as best she can.  At times we get some nervous giggles during stretches and others we get, “this is just awful mommy, I want to go and live at Charlotte’s house” (but I am sure we will hear that once or twice in her lifetime)!  I have had a few rough physio appointments with her lately when she has refused to participate and ended in a blubbering mess (both her and I), but thankfully those visits are more rare.  The other day though I found Eden playing quietly in the living room.  She had her doll on the couch and she was doing her stretches on her.  She was so gentle with her voice to her baby and so calm and I thought you know somewhere in that little brain of hers she understands that we are doing those stretches for her good…and I had peace about it.

Eden doing her stretches on her doll.

That's the one she hates the most!

Nothing short of a MIRACLE…(May 2010)

Nana and Papa bought Eden a bike to work her legs...she loves it!

On Sunday May 2, I was challenged to pray with faith that could move a mountain, to believe that God can heal, to believe that God WOULD heal…to pray right in that moment with confidence.  To be honest, I was scared.  What if I prayed for Eden’s legs to be healed so she could walk again and God denied me this?  Would my beliefs be challenged…would I doubt God, His existance…did I have enough faith or any at all?  Fear is what keeps us from moving forward in whatever challenges life brings.  So, laying aside fear…I prayed, right then, right there, with confidence.

Monday May 3, Eden began to walk…some would say coincidence, I say miracle!  The kids started it all.  Ben and I were in the kitchen and we heard, “now Eden, walk over to me, I’ll catch you”.  Upon entering the living room, there she was with a grin from ear to ear, in her crippled little stance, walking clear across the room in to the arms of her brothers.  Applause, laughter, cheering along with strict instruction from the boys to not hold on to anything, Eden was being encouraged to walk as far as she could.  As Ben scrambled for the video camera, we managed to capture the scene.  At one point Ben asked Eden, “who taught you how to do that?”, and she replied, “Charis did” (her younger sister by 24 months).  We laughed and I thought to myself, truly everyone has been playing a part in her recovery!

Weeks have gone by and Eden has been choosing to walk places on her own rather than scooting across the ground on her belly.  We have been celebrating that victory and perhaps that is the very thing that gives us strength  to continue with her stretches as she screams, cries and sweats through them three times a day.  Unfortunately though, there is still concern with the stiffness in her hip area that causes an inability for her to be able to straighten up her body when she walks.  She has a very pronounced “S” curve in her spine when she walks as compensation for being unable to lengthen her hip flexer muscles.

Our next visit to the surgeon was shared with a moment of celebration (as he witnessed her progression of walking) to confusion (as her crippled stance puzzled him).  Once again Eden was a mystery.  The next step he said, is to make sure nothing is going on in her bones that we can’t see causing her movement to be limited.  He talked about the possibility of a lack of blood flow through the bones, a cartilage build up that is not allowing the bones to move or that her bones are slipping (which he already ruled out according to her x-rays).  If we rule out bone options then we know its the muscle we are dealing with.  He then suggested that if it is primarily muscle, we are looking at a 6months to a year of physio and possible botox injections that will loosen the muscle.  My heart sank thinking, when will it end?

Today is the day of her cat scan to find out if anything is going on in her bones that we can’t see.  Eden will be terrified.  Although the scan does not hurt, she has so much fear in new hospital situations that I can just picture them having to pin her down to go through with it.  I asked Ben if he could make time in his work calendar to take her.  I couldn’t bare the thought of being the parent once again that had to look at the fear in her eyes and tell her she will be okay while she begged to be rescued.  It makes me feel like I am failing her when I can’t and it is the most helpless of all feelings.  Although it plays on Ben too, he can separate the emotion of it at the time and definitely has a way of speaking to her that can keep her calm and distracted when she needs it most. Hoping it works for them today.

As for Eden, she remains determined and teaches me great lessons of perseverance everyday.  I have the privilege of walking my kids to and from school everyday and so yesterday was like no other.  The girls in the stroller and the boys walking beside.  On the way back from dropping Sammy off at school,  Eden insisted that she walk home.  I thought to myself, I guess I should be encouraging walking as much as possible and I am sure she will be tired in about 3 minutes so why not.  We live three blocks from the school and wouldn’t you know it, Eden walked the whole way home!  She made up a sign that whenever she put her hands on her hips, that meant I was suppose to wait for her…(she cracks me up).  As I kept looking back at her though, my eyes would well up with tears.  They were proud tears.  My heart was in awe as I thought, here is a little girl who keeps on fighting.  I kept asking her, “Eden, would you like to get in the wagon now”, her reply, “no thank you”.  Even when her crippled walk made it hard for her to keep herself balanced let alone to keep up a normal pace she was determined to finish the course set before her.   The walk is about 5 minutes.  That day, it took us about 25 minutes but it was the most beautiful 25 minutes of my day.

…and let us run with perseverance the race marked out for us…  (Heb. 12:1)

Old routines and New Beginnings…(April, 2010)

It has been an entire month since we have seen the surgeon in Hamilton.  I had been anticipating this appointment for awhile, hoping that he would see some progress in Eden to affirm that we are moving in the right direction.  People ask often how she is doing and my report has been the same for the past month.  “She is doing good, but her progression toward recovery has been a lot longer than I expected”, I would reply.  Seeing her everyday I tend to see only baby step improvements but her therapist who sees her twice a week, sees more which encourages all of us…what will her surgeon have to say?

If you have been following my blog you know that Eden begins her appointments with an x-ray and no matter how many times we do this, it still gets messy.  I have come to realize that when trying to cope with situations she does not like, Eden begins to sing a melody at the top of her lungs in a sing song kind of a scream.  Humourous I am sure to many but to her mother who is the one usually holding her down while a sweet young x-ray technician (who hasn’t laid a finger on her), just wants to take her picture, it becomes a little embarassing.  ” Rain rain go away, come again another day” while tagging on “Nan, nan, a, boo, boo” isn’t exactly something you would like to clarify for the technician when she asks, “what is she saying?”  Once again though, I am taught that hard lesson of humility as I am forced to watch my little girl make a strong effort to escape her present reality and realize, its not about me at all.

The surgeon gave her a green light on movement of any sort.  Her x-rays are still beautiful with the bones in place.  “If she wants to start running, let her go”, he says to me.  While I watch her struggle just to take baby steps around the hospital bed, holding on for stability with crooked posture and stiff movements, I try to hold back the look of shock on my face as I silently question when that day will come when she would be free to run again.  I questioned him about muscle disease or nerve damage as he remained confused with the stiffness in her range of motion.  He said it would be so very rare for her to experience muscle disease in one localized area without it affecting other areas like her arms or feet.  At this point to test Eden for those things would mean sedating her for an MRI or needles down her legs to rule out nerve damage.  We both agreed that it would be far too traumatic for her.  He concluded a six month to a year prognosis with continued physio support, massage etc. for recovery and figured that the stiffness was due to the tightening of the hip capsule and the amount of scar tissue from surgery.  He seemed very hopeful that we were on our way to recovery.

We started pool therapy at the Niagara Peninsula Children’s Center this month.  Our first session was intense for her and me.  I waited with my bathing suit underneath my clothes in the “sauna-like” pool room just in case I would need to go in with Eden if she refused to go into the arms of the therapist.  We thought that maybe being in a class with other children would be motivating to Eden but being handed off to someone else in a new situation could be a nightmare.  It was.  They began by putting her into a lifejacket and she lost her marbles.  Screaming “mommy, mommy, mommy, I want my mommy” at the top of her lungs, I was torn with what to do next wondering if I was more of a hinderance to her by staying or a failure to her by leaving.  I tried to remain strong and tell her that she was fine but when I saw a little boy with down syndrome holding his ears, his eyes welling up with tears as he was terrified at the noise coming out of the new girl in his class, it took everything in me to hold back from jumping in to rescue her.  The teacher was phenomenal, speaking softly in Eden’s ear and steering her away from eye contact with me.  At one point she asked Eden “which colour do you like, red, blue, or green?”, and Eden replied at the top of her lungs, “I don’t like that one and I don’t like that one and I don’t like that one!”  “Oh Lord, if only she were able to relax, this would be so much easier on her”, I prayed as my eyes began to well up with tears.  After 25 minutes of screaming, Eden finally turned off.  She became calm and did what she was asked to do and I would even venture to say, she liked it.  Our second class during the following week was nothing like the first.  Of course I bribed her with a treat if there was no screaming or crying, however, she went in a little apprehensively but warmed up quickly and enjoyed the activities.

Wiped out from doing her stretches..(Eden that is).

At home we are responsible to stretch Eden three times a day.  I definitely get to it twice a day but three times is hard and I often feel the guilties of that.  She usually screams her song, and yells, “I love you but I don’t like you” and gets herself quite worked up.  That’s okay, I understand what she means.  It is an ordeal for all of us and we long for the day when we can do without her stretches.  As for the other kids, they have been great.  Celebrating with Eden when they see her taking baby steps and teaching her how to get around her physical limitations to engage in play with them, they all have a part to play in her journey.  The other day Sam wanted to play basketball on the driveway and wanted Eden to play with him.  So, we began to think creatively about a way in which she could participate.  I dragged the wagon in front of the net and she sat comfortably dangling her legs.  Sam then took it from there, carefully teaching her how to shoot a basketball.  When she shot and made her first basket, his arms went straight up in the air, hooting and hollering.  He was her biggest fan as she accomplished the goal they were working on together.  It was one of those moments a mom just doesn’t want to miss, and reaps all the benefits that motherhood has to offer when she is fortunate enough to catch it.  We need these moments to keep going…

Sammy beginning the basketball lesson.

The victory dance!

Coaching with hand signals too!

The heart of the determined one (March 5-19)

A few days home from the hospital, I had to take Eden to her first physio appointment.  I was anxious to get this part of the recovery started for her to see some promising results from all of these surgeries.  Quite the opposite came true when we arrived.  Unfortunately due to what Eden has experienced being in and out of the hospital with the outcome usually including her legs bound in a full body cast or brace, she has developed a fear of anyone unfamiliar who approaches her.  Needless to say this physiotherapist was no different.  With whimpers of fear and a voice of hostility Eden began to express just exactly where she wanted this woman to go…AWAY.  She didn’t stand a chance with Eden.  After many questions and some assessment, (never mind Eden being in total distress), she asked me what the goal was from the surgeon.  “Is he looking for a full range of motion here?” she questioned.  My heart sank as I stared at her with a look of shock, I am sure.  “The goal here is to have Eden walking again with really no other option”, I replied.  She continued to hum and haw over the kind of treatment Eden would need and her availability for it.  As I left that building and got into the van, the flood gates of emotion opened up and for the first time in this moment of weakness I doubted whether or not Eden would ever walk again on her own.

One of the suggestions the physio gave to us to try with Eden at home was to see if she would get on a riding toy to begin to strengthen some of her muscles.  So, I brought one into our living room and it was then that I realized Eden could not open her legs wide enough to straddle the toy.  Her muscles had indeed tightened in the opposite direction now not allowing her to separate her legs much at all.  We met with the surgeon on the day we were going to take the kids to Virginia on vacation for the March Break.  Again with the look of confusion on his face, he wondered why Eden’s muscles were seizing so quickly.  The x-ray proved that the bones have healed beautifully and are in the proper place so he concluded that this road to recovery for Eden would be a slow process over the next three to six months of physio twice a week and pool therapy to loosen and strengthen the muscles to function again.

Eden enjoying the swings.

We left that afternoon on a car ride to Virginia and had a fabulous week.  Watching Eden swing on the swings moving her legs from the knee down, swimming as we supported her in the water and even playing skeeball in the arcade was awesome.  She was having a blast and begged us for more everyday.  Being home this last week and observing how Eden gets around the house, the way she interacts with her siblings and her motivation to be so independent as she makes her way up and down the stairs, has made me realize that she does not see her limitations as the rest of the world does.  Nothing stops this little girl from living her life to the full.  I close with this;  the other day I was upstairs changing Charis in her room when I realized that Eden was no longer beside me.  I called for her and asked her where she was.  She replied, “I am in the bathroom washing my hands mommy”.  I couldn’t figure out how she would be able to do that on her own so I ran out of the room with a slight panic in my heart wondering how she managed this.  Sure enough there she was leaning against the counter, standing in her crooked stance on top of a two step stool enjoying the independence of washing her own hands.  That may not sound like a huge accomplishment but to us it was something to celebrate.  For me it gave me hope to believe in miracles once again, to not doubt the impossible and to trust that with her gifted spirit of determination, Eden will get places no matter what the limitations may be.

Washing her hands, all by herself!

Playing the games in the arcade with daddy.

Wiggling up the stairs.