Category: Lauren

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In His Hands

Night falls, day breaks; what will this day bring? Can I do this again? My strength is depleting , but life requires so much endurance and I wonder where does my strength come from? As a human being we have a limited supply, there is a fuel tank and there are times when I feel I am running on empty. But then once again that still small voice speaks to me and reminds me that, ‘He is my strength’.Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God, I will strengthen you and help you; I will uphold you with my righteous right hand”. Exodus 15:2 says, “The Lord is my strength and my song, He has given me victory”. Nehemiah 8:10 “Do not grieve, for the joy of the Lord is your strength “.

My life is anything but stress free. I am sure we all have stress in our lives and I am not comparing. I am just sharing my experience, to remind myself and to help others who feel they have no hope. I suffer from depression and have so all my life, I was born with it, genetics plays a big role in my illness. Choice was never an option. Do I become angry and blame everything that ever went wrong on my illness? I can and have but that’s the past, I cannot live there anymore. I now try to live in the moment (notice I said ‘try’, sometimes my human side tries to go back). But Philippians 3:13-14 says, “But one thing I do; forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus”. Is this easy to do? Not at all but in order to survive and live a life that is somewhat ‘normal’ I have no choice. I just pray everyday for His strength, to be mine. And I have to believe that His promises are true.

Everyday I am plagued with my illness, it’s a never ending battle. Would I like to be healed of this illness? Of course I would, there’s nothing I would like more (except for Lauren’s healing). But that’s not God’s will right now for Lauren or me. Does that make me angry, discouraged and question God? Yes it does! But so did the apostle Paul, he pleaded with God to remove his ‘thorn in the flesh’. But God said, ‘no’. He does assure us though of His grace and strength in our sickness and infirmities. 2 Corinthians 12:9-10 says, ‘And He (God) said to me (Paul), ‘My grace is sufficient for you, for my strength is made perfect in weakness’. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me’. ‘For when I am weak, then I am strong’. The dictionary definition of infirmity is ‘a physical or mental weakness’. I guess for me that would be my mental disorder, it’s what makes me feel weak but in reality because of this weakness, Christ’ power rests upon me and therefore I am strong. What an amazing encouragement for those of us who feel weak, beaten down and broken. Our strength is renewed daily through Him who died for us.

So on those days when I feel like a nobody, worthless, hopeless and good for nothing; I am forever reminded of God’s love for me. I don’t measure myself anymore by Society’s standards because if I do, I will surely fail and never measure up. But God loves me just as I am, Jeremiah 31:3 ” I have loved you, with an everlasting love. With unfailing love I have drawn you to myself”. On those days when I don’t love myself, God reminds me that I am His and He loves me with an unconditional, everlasting love. Roman’s 8:38-39 reminds me every day; “For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord”.

Today we have to take Lauren back to the Janeway for her post surgery check up. Here we have our five years old little girl lying in bed with a body cast (for the third time). Does that give me cause to be angry, sad, to question? Yes, of course it does, I wouldn’t be human if I didn’t. I bring her to the Lord in prayer for healing, but that healing never comes. Is that cause to be upset and question God? In my human weakness, yes it is. But I know that God is much greater than I am and He knows what He’s doing, He knows what’s best, even when I feel lost and helpless; He’s still in control. And I have to learn to take it one day at a time and to trust in Him fully. Lauren is in His hands, whatever the future holds; we are all IN HIS HANDS.

Whatever this day may bring, I know I am not alone. My strength comes from Him and Him alone. So be encouraged today; God loves you; you’re IN HIS HANDS!

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Lauren’s Walk of Fame

Daddy’s writing again, he must have something big on his mind (He calls it getting inspired). Mommy, Daddy and Bruddy(Logan) are my biggest fans. They want the absolute best for me, but you see I have Spastic Quadriplegia Cerebral Palsy and that creates a lot of problems for me; especially when it  comes to mobility. But we believe one day mobility won’t be an issue, and my wheelchair won’t be my form of mobility but I will be able to walk on my own.

Today I am lying flat on my back in an hospital bed at the Janeway Children’s Hospital in St.John’s, NL. I have spent a lot of my time here since I was diagnosed at age one but now I am five. Just yesterday I had my third dega osteotomy and as well I had my adductors released (cut). Three surgeries in one.  In children with spastic(tight) muscles, who are unable to walk, the hip joint does not always develop properly. This was the case for me, therefore I had to have this surgery on both my hips to correct the abnormal hip development and prevent further dislocation and prevent or reduce pain in the hip. But unfortunately for me, the first time I had the surgery, the hip became displaced again and the surgery had to be redone. I’m hoping this will be my last osteotomy, because I want to move on to my next plan of attack.

To present, I have made four trips to the Shriners Childrens Hospital in Montreal, for an assessment to determine if I would  be a candidate for the Selective Dorsal Rhizotomy. Which is really my only hope (other then God) of walking, but four of the times it was determined I was, as of yet, not a good candidate. What this surgery entails is; opening up the lower back to separate the ‘rootlets’ in my nervous system, which would ease/release the tightness/ spasticity of the muscles in my legs, which would hopefully allow me to walk or at least some form of mobility. But right now, that’s not happening anytime soon but we are still believing that it will happen sometime in my future. Because I really want to walk.

My next plan of attack after I am fully recuperated and both hips are in good working order; is another trip to Montreal. This visit to the hospital there would be to determine if a baclofen pump would be beneficial and work for me. A three day trial would determine this. If this is successful then a programmable pump and catheter that delivers baclofen  which helps relieve severe spasticity; by supplying the medication directly into the intrathecal  space where fluid flows around the spinal cord, would be surgically inserted inside the skin around the abdomen area. This would supply a steady supply of baclofen to the spine and in turn reduce spasticity. This would be a temporary alternative until I was ready and a good candidate for the rhizotomy surgery.

So it ain’t over yet and we are not giving up. The journey may be long, but our prize is the destination; that being one day I will walk just like Bruddy. And will never ask the question again; ‘why am I in a wheelchair?’ Miracles happen, I’ve already proven that. My strength, resilience, determination, willpower and drive will all help me reach my destination. You just wait and see!

 

 

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Back To School Disaster

Have you ever felt beaten down; well I feel beaten down today. Ever since our child came into the world, we’ve been like any other parent and want nothing but the best for her. But that best is so obstructed by so many different means. And sadly to say, it’s only parents of special children that understand.

Excuse my expression, but it best sums  it  up, “You are damned if you do and you’re damned if you don’t”. I have advocated for disabled children on so many levels, it certainly doesn’t win you any popularity contest. But I’m not in this for the prestige or the social status. In reality, people look at you, as if you are committing a crime. Dare not fight for equal rights, all inclusion, accessibility, policy change or disturb the comfort zone of the ‘normal child’.

I am so amazed at our ‘all informed society”; that kids today don’t know what a wheelchair is. If parents could just take a moment and educate their children that we are all different, even if we don’t have a disability (a one we can’t see anyway). And different is not a bad thing, it’s okay to be different. For those who don’t know how to explain what a wheelchair is, I will do it for you. A wheelchair is a chair that has wheels that allows a person that has legs that don’t work because their brain is damaged and can’t tell their legs to move. Therefore they require a wheelchair to provide mobility (allows them to get from point A to point B) so they can move around independently. Having legs that don’t work is no different then someone having eyes that don’t work properly and therefore they have to wear glasses to see. Or maybe someone has ears that cannot properly hear and thus they have to wear hearing aids in their ears to hear. Because you have a disability doesn’t mean you have a intellectual disability; I’ve met people standing on two legs with very little intellect. It’s not rocket science, it’s simple; diversity is what makes us unique not defected.

Again this week, that ugly word came up again, policy, don’t get me wrong policy is great if it works; whether it’s our health care system, education system or legal system. But trying to adapt and adjust a five year old little girl with CEREBRAL PALSY into the school system that is bombarded by policy. WE can’t do this because that’s our policy, we can’t do that because that’s our policy; then to hell with policy. If it’s not working, and obviously it’s not, then it’s time for some change or a little tweaking. If this little girl is forced into an environment that she sees as frightening, scary and overwhelming and CP just intensifies these emotions. Then certainly our school system can adapt and adjust to a little change in policy to accommodate a little child, for what’s best for her; not the system. After all aren’t we living in an all inclusive society? So let’s protect our children, not the system. And for that to be done in “a nurturing, supportive, INCLUSIVE environment where all children are challenged and valued”. This week my thoughts have been challenged and disturbed to the cop out in order to save one from having to deal with conflicts to ‘policy’.

In order for this little girl to adjust properly, due to her CP, requires her to do it gradually with a parent or someone she is totally comfortable with, present to reassure her that this is a safe environment. This will only happen when she is introduced on HER terms; not the schools, not the unfamiliar team and certainly not the policy. Once she is eased into the environment, the parent can gradually exit the building and she can become the independent, intelligent and happy child that we know she was and is. If the school is not willing to make these adjustments, then this little girl will be having a very short school year. And only those who can help are the ones who right now strictly enforce policy that obviously requires leniency in practice.

For the protection of the school and child; names have been withheld.

 

 

 

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Lauren’s Eye Surgery. A Curve in the Road.

Early mornings and I don’t agree, my brain is in a fog and my body just doesn’t want to move. The clock alarms at five-thirty am, but I just went to sleep, but I better get my butt out of bed. Today we have to go to the Janeway for Lauren’s eye surgery.

We take Lauren out of the bed; body, bones and pajamas. Wrap her in a blanket and settle her into her car seat. Uncle Dale comes up to stay with Logan, I’m sure they’ll have a day of adventures. And then its off we go for the adventure of our day. It’s like we’re on auto pilot, we just do it. Not like this is the first time but if we stop to think about what we are doing; we might fall apart. Before long we arrive at the hospital and head for the surgical floor, where Lauren is prepped for surgery and dressed in a royal hospital gown. Now we’re in the waiting area, dreading our next move and passing her over to the team of medical professionals. This makes us feel like such horrible parents, but we know we have to do what’s best for Lauren.So now we wait and wait some more…

A nurse arrives to take Lauren to the OR, Lauren screams in fear. The saying, ‘ignorance is bliss’ doesn’t work for Lauren; she knows exactly what’s going on, she’s been down this road many times before. And she knows that she will not return the way that she went in but she knows that at least she won’t have a body cast. That was one of her concerns prior to arriving at the hospital.

After approximately an hour, her surgeon comes out to us with the good news that the surgery went fine. Relief floods your body like water in a pool. The next few days will be very uncomfortable for Lauren, but that’s to be expected. She is so resilient, strong and courageous; a fighter like none other. I have learned so much from her, she is my inspiration.

Wish I could say, that’s it for surgeries and visits to the Janeway but I believe we have only begun. The doctor that diagnosed Lauren, four years ago, knew what he was talking about when he said, ‘she has a long, hard road ahead of her.’ Little did we know just how long that road would be. Just for an example; while we were sitting in the waiting room today, the phone rang and it was the orthopedic department with an appointment for Lauren’s third hip surgery; on September 12th, just two weeks away and she’ll be in a body cast again! Her eyes will not be fully healed and she’ll embark upon yet another surgery. With no end in sight, maybe just a curve in the road.

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And That’s Suppose To Be Okay?

Some well meaning people say, “It will get easier with time”, and I thank them because I know they mean well. Will we ever grow to accept Cerebral Palsy and all the limitations that it imposes on Lauren’s life? Today it’s best you say nothing. I will feel exactly what I feel and that’s not pretty.

Lauren calls me from her bedroom, where she spends way too much time but there are days when that’s where she’s most comfortable and free of pain from not sitting. And that’s suppose to be okay? When I arrive at her bedroom she says, “Daddy will you help me ride my bike today?” What am I suppose to say; no you can’t do that? Through a broken heart and tear stained eyes, I tell her we will try. And she’s fine with that. You’re probably thinking, you shouldn’t let Lauren see your tears, that might upset her. Well, I wish she could see my tears but you see, Lauren is vision impaired and she can’t see my tears. So we are talking face to face and  Daddy is one broken man. Broken because I realize also that she can’t see my liquid ink flowing down my cheeks. They’re invisible to her. And that’s suppose to be okay?

But today Lauren and I will take the dog for a ‘walk’. Lauren will always ask if it’s raining today, because she knows if it’s raining we won’t go. It’s not raining, so its a nice day to go for a walk. Lauren in her wheelchair, holding the leash, that’s attached to her chair but she doesn’t know that because she wants to hold the leash by ‘herself’. So off we go for our walk…. And that’s suppose to be okay? That’s easy for you to say because you are not the one pushing the wheelchair.

I’m not being angry at anyone, I’m just stating a fact that it’s not okay. It’s not okay that Lauren can’t ride her bike, it’s not okay that Lauren can’t see my tears, it’s not okay that Lauren really can’t ‘walk’ the dog, it’s not okay! And I feel justified in saying, it’s not okay!

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Lauren’s Unending Pain

I guess Lauren as hit another bump in the road, there’s been plenty. From the time she was diagnosed , at age one, with Cerebral Palsy, there has been one bump right after the other. Life as certainly not been kind to this little girl; certainly not fair. The challenges that come with Cerebral Palsy have been too many to count. You might say will look on the bright side; well I’m looking but not seeing a lot of brightness at the moment. There is nothing pretty about Cerebral Palsy and if she were your child, you would probably understand our frustrations and helplessness.

Now don’t get me wrong, Lauren is one of the most beautiful children you could meet, she is an angel personified. She awakes in the morning and I say, “how can you look so beautiful the first thing in the morning?” She gives me a smile no matter what. Her intelligence goes far beyond my own, well in that case she doesn’t have far to go lol, so let’s say Mommy’s. We are so thankful for the many positive qualities that Lauren possesses.

But we cannot overlook the obstacles, when it comes to her health, that she has to endure. The castings, surgeries, physio, etc. that she has had to tolerate, is more then an adult could ever endure. But she is brave, strong, and courageous, yet we cannot turn our hearts away from the not being able to walk, not being able to sleep alone, the seizures, the cries and screams of pain and fear. Those are the things you can’t overlook and ignore and only see the good. Because with this illness comes the not so nice side.

Lauren was scheduled (so we thought) for her third femoral and acetabulum osteotomy, this time on her right hip. The surgery was booked for tomorrow (August 9) but after we finally got someone to answer the phone (after calling for two weeks), we were told there would be no surgery and they couldn’t give us a time when it would be done.

Now please understand my anger and frustration with the Janeway Hospital. It’s bad enough that we experienced this same crisis on her last surgery and now for it to happen a second time, is beyond belief. Here we have a little girl who just recuperated from one hip surgery and spent weeks in a body cast, And from today, to the day her cast came off, Lauren as screamed in pain every time she is moved. So her summer as not been what you would call playful and enjoyable.

For the past few weeks , the haunting thoughts of having the next surgery performed, plagued our thoughts. How could we do this again and live through the horrors? But we were willing to do it because it was what Lauren needed done so desperately to help ease some of the pain that is not going away without this surgery. Then to be told so politely that the surgery was not taking place, just devastated us. How can she go any longer, enduring this inhumane pain but according to our Health Care; that’s the way it is in the summer. In the SUMMER??? The season should not dictate available health care for our children. She’ll have to suffer a while longer until it’s convenient for someone to come back from holidays. If this were a dog that was in pain and we were withholding from taking her to a vet; we would be charged with animal cruelty and be aired on the 6:00 News. But in this case it’s a child and our hands are tied.

We are Lauren’s advocates right now; and we speak on her behalf but right now Lauren is going to speak for herself:

‘I can’t walk, my legs won’t work”

“But I want to walk like Bruddy”

“Am I having a cast this time?”

“Why did the Doctor have to cut me?”

“What did he cut me with?”

“My leg hurts”.

“Could you rub my leg and make it better”.

“I’m afraid”.

These are some of the questions and statements that Lauren as said over the past few months. Could you please help her and answer some of her questions because we just don’t know what to say anymore. 

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Lauren’s Wish

It’s summer; warm refreshing days, long evenings, free time to play, children running, jumping, skipping, swimming. Enjoying all that life has to offer with no expectations, just pure freedom.  And for children that’s exactly what it should be. They deserve nothing but the best, free of the responsibilities and cares that we as adults have to undertake as part of life.

For a few children this is not necessarily the case. The things that most parents just take for granted ( I’m not blaming them) we pray everyday for Lauren. Cerebral Palsy as stolen so much from her. But we try so desperately to give her a life of hope, normalcy, play and to explore the world as she sees it.

The older Lauren gets the more we realize that Lauren as so many obstacles to overcome, not just from her illness but also from society as a whole.  From getting from point A to point B requires our assistance. Accessibility will always be a struggle, because not everywhere you go is wheelchair accessible. I have been an advocate, on Lauren’s behalf, to make our space in this world a little more accessible. Surprisingly enough and sadly, not everyone are too anxious to conform to accessibility. Then we are experiencing the ugliness of inclusion; not always do we find people/organizations with open arms to include Lauren as an equal member of society. Sometimes being all inclusive turns out to be quite the opposite.  But again, I will be Lauren’s advocate and make sure that she feels included. Just  because her legs aren’t working and she as to use a wheelchair; makes her no different then if a child is wearing eyeglasses to see or hearing aids to hear. All inclusive means just that; ALL inclusive, none left out.

We are not in denial, everyday is a constant reminder of Lauren’s challenges but that doesn’t mean we don’t want the best for her but in order for that to happen we may have to overcome many obstacles, challenges, struggles, stigma, ignorance and false hopes. We still have days when we wish Cerebral Palsy would just go away and leave us alone. To let Lauren just live a ‘normal’ life. We understand that everyone has their own struggles, hurts and pain but I’m writing about Lauren’s today. Sometimes I wonder will we ever get to a point of acceptance; I don’t think so, not as of today anyway.

Lauren’s last words before falling to sleep last night was, “I wish I could walk like Bruddy.” What do you say? How do you say it? Lauren ‘may’ never walk like Bruddy. We have already been told that Lauren will always need the assistance of a wheelchair, walker and aids. Do we accept the expertise advice of the medical field? To be honest, I don’t know anymore!

If we don’t, we have one option left. And that would be a miracle from God Himself. Would that be possible? I pray it would be. Yesterday the statement was going over and over in my head, ‘If Jesus could do it then; He can do it now.’ Well, here she is Lord, she’s all yours. If you want her to walk, do your work! But if not, please help us to accept your will and please carry her over the many bumpy roads she is going to come in contact with. At those times may you carry her…..

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Are the Roads Bumpy Today?

I know sometimes it seems like my blog is all about my own illness and sometimes that’s probably true because I feel I can talk about myself and it doesn’t bother me too much. I try desperately to update and fill you in on Lauren’s journey with her cerebral palsy. But to be honest; I often put it off because at times it is just too painful to write about. An innocent angel that doesn’t deserve what life has put in her path. The last time I shared was on May 16th, when Lauren had her osteotomy on her left hip. And then she was in a spica cast for 6 weeks; we did all survive but it was rough going. Lauren has had more then her share of pain and challenges. And then  there’s Logan who’s caught in between all this chaos. But he’s such a great, big brother; they just adore each other.

Just when we thought it couldn’t get any worse; on June 26th she had the cast removed. We were certainly not prepared for the horrific pain that Lauren would have to endure. For weeks, every time she moved she would go into a rage of screaming in pain and fear. This was especially difficult for Logan as well, he didn’t like for his little sister to be in so much pain.

It’s now July 8th and Lauren is still having pain and pretty much confined to her bed where she fines most relief from pain. She is very limited now to what she can do; she does sit up in her chair for approximately 45 minutes but then she wants to go back to bed. And riding in the van is very uncomfortable and painful, especially on a bumpy road and most of our roads are fairly rough. I was putting her in the van today and she said, ‘are the roads bumpy today?’.

Today, July 10th, Lauren saw her surgeon again. He wanted to do the other hip next week but couldn’t get it worked out, so he is now hoping for the following week. How are we going to put her through all of this again? Oh my God, life is so unfair. No matter how many tears that fall, it doesn’t change a thing. No matter how many prayers we pray, the reality of the torture, pain and tears don’t go away.

The continuous, never ending surgery after surgery consumes every ounce of strength we have. Days when you feel you have nothing left to give but you have to go on. So much depends on us, so much responsibility, so much care. Lord, how do we do this again and again? My faith cries out to you today, please help! We cannot do this alone; a power, a strength greater than ourselves has to intervene. Please help us to trust in you. Our ship is sinking in this storm of life; please wake up, don’t you care that we perish?

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Two Shoes

Today is Church day, a day of rest; not in our case. Lauren dictates the mood of the morning, and so would I if I were in a body cast. Her bath now consist of a bed bath and her hair being washed in the kitchen sink by lying her on the counter and her head in the sink. You do what you have to do, it definitely takes two of us to accomplish this task.

Her bed bath doesn’t go all that smoothly; pain, hurt, and discomfort seems to be the order of the morning. This is a timely procedure, with her popping tears from her eyes as big as raindrops. And you are holding back tears because you know if you start, they will never stop. None of this makes any sense and life seems so unfair, for a little child to have to suffer so.

Then its time to put on her Sunday best and top it off with her princess shoes. But then she realizes; I only have one shoe on and I have two feet. She can’t understand the concept that one cast practically covers her foot, while the other foot is totally exposed. So she cries all the way to church because she only has one shoe.

I explain to her that we can’t go into the Church with her screaming and if she doesn’t calm down, we’ll have to go back home. So she seems to understand and stops crying. By this time I am so frustrated, heartbroken and helpless; I don’t know how I’m going to go inside and pretend that we are having an amazing morning. And put on my ‘expected’ Christian smile and worship.

I make it to the doors, with my my anxiety through the roof, and without turning around  and making a run for home; I enter the Church. I’m already  late and that doesn’t go over well with me, my anxiety requires me to be there ten minutes before church starts. But not this morning.

I wheel us into our usual spot and take a breath; a big, deep breath. I lean over and she quietly says, ‘I want two shoes’. Now I can’t hold back the tears anymore, I am totally overwhelmed with the situation and life.  Right at that moment it was more then I could bare. So I thought, what do I do? I was at the end of my resources and I felt Lauren’s doctor’s were playing Russian  roulette with Lauren’s mobility. As a family we could not take anymore, nor could we do anymore.

I decided there and then; well if we can’t , Jesus can. I had to believe that. He was our only resort, our only hope. Quoting Pastor Isaiah, ‘So when we are at the end; Jesus is at the beginning’ (something like that). So without any hesitation, I brought my little girl to Jesus and I have to believe that He met us there at the front of that Church; I laid her on the altar (not literally), I gave her back to God. Me with my broken heart and broken mind and Lauren in desperate need of a touch from the Master. I pictured Him taking Lauren up in His arms and saying, ‘It’s going to be alright my child’. I prayed so earnestly for God’s intervention in our lives because without Him, we were falling apart. Our family was torn apart by life’s trials and only He could fix it.

Eventually Lauren will get to wear two shoes, but not only wear them but walk in them. If I don’t see it here on earth, I will see it in Heaven; we will cross the finish line one way or another. But we will win!

Isaiah 35:6 ‘Then will the lame leap like a deer, and the mute tongue shout for joy. Water will gush forth in the wildness and streams in the desert.’

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Lauren’s Incredible Journey Through Surgery

Having a child with  special needs, opens your world to an whole new perspective on life. A world that is challenging, demanding, empowering, loving and hopeful. There are definitely many ups and many downs, each one bringing with it a flood of various emotions. With Cerebral Palsy every day is a new day, each day a new challenge, you never know what’s waiting around the next corner.

That’s what brings us here today at the Janeway Children’s Hospital. Lauren was admitted yesterday and her surgery is scheduled for 11 O’clock AM. Lauren will be having both a femoral and acetabulum osteotomy on her left hip.

Lauren was just taken into the OR and won’t be back until at least 4 O’clock, that makes it over a four hour surgery. You have no idea how we are feeling at this very moment, there are no words to describe it. Now we have to wait, there is nothing in our control. Her life is now in the doctor’s hands and we have to surrender her care to them. But I have to believe that there is a greater power at work here and He will take good care of her and bring her back to us.

It was a very long day, longer then expected really. She got back to Special Care around 6:30pm. Not all that responsive, not wanting to wake up, very weak. But that is all to be expected.

All day Thursday she slept most of the day. Her hemoglobin was down but they wanted to wait and see if she could build it up herself. The following morning it went down again so they had no choice but to give her a blood transfusion. Hoping this will help with getting some strength back and make her feel a little better. The neurologist is coming in soon. Her speech is very different, slurred sort of, could be meds but they want to make sure. So far now that’s the update; now we just wait again.

Neurologist confirmed that it’s her seizure medication plus all the pain medication, that’s making her over medicated and thus the slurred speech. So now she as to stay at the hospital until that’s clarified. We thought we were going to get out today (Friday) but that’s not going to happen. Hopefully tomorrow things will get better.

Well, tomorrow is here (Sat. May 19) and things are looking a little better. Lauren had pain through the night and still has slurred speech this morning. They done blood work again to see what her hemoglobin levels are; hopefully they are increasing. She’s still lying on her back and  hasn’t been out of bed or sat up yet. She could really break your heart if you let it.

Logan as been a real trooper through all of this, he’s spent most of his days at the hospital with us. He is Sissy’s biggest fan and was very upset when she came up from the OR. He couldn’t understand why Sissy wasn’t talking to him, that was a first.

It’s Lauren’s fourth day in the hospital and she’s doing a lot better. She sat in the chair and went for a ride in her wheelchair. She still has pain and spasms but it’s mostly controlled by medication. Taking her home is going to be the hardest, getting accustomed to her being in a spica cast is certainly going to be a challenge.

Lauren is getting back to her fiesty self, thank God. She’s ready to exit this place and get home. It’s Monday (she came in on Tuesday) and it looks like we are going home. Scary and excited at the same time. She requires so much care and lifting; we know it’s going to be rough but we will do it.

Once she’s home, let the healing process begin. Because once she’s recovered from this surgery (around 3 weeks) it’s back in for more surgery on her right hip. Oh my, I don’t know how we are going to put her through this again; this will be her third hip surgery. It sounds so cruel and it is but it as to be done. It’s all part of a plan to help release some of Lauren’s spasticity so she can be a little more comfortable and help with some mobility. All of this seems so unfair, so cruel, so senseless and there’s not a thing we can do about it; helpless.

Once both hips are back in socket and she is fully recovered from both hip surgeries; it’s then we are off to the Children’s Shriner’s Hospital in Montreal. It’s there she will have a baclofen pump trial; to see if the baclofen will help to release some of her spasticity. Baclofen is a medication used to treat spasticity. If the trial works then she will have a surgery where a puck-like device will be inserted under the skin of her belly, called a baclofen pump and a tube going directly to the spine with a constant supply of baclofen when needed. Then the pump will need to be refilled every six weeks and the pump itself replaced every seven months. Which will have to be done surgically each time. Hopefully the baclofen pump will work for her. If not we are running out of options.

The only thing left would be the rhizotomy surgery on her spine. Which she is not a candidate for right now. This surgery is very invasive; they go into the spine and cut certain of the nerves that controls the spasticity to certain muscles and permanently release some of her spasticity. This is the surgery that we feel as her parents, would benefit her the most. It would give her some form of mobility and comfort; long term. Unfortunately, we are not the ones making that decision.

All of this seems so overwhelming as parents; and it really is. Everyday is long, tiring and unpredictable but we do what we have to do. Life is so different now, we have to trust in an higher power for strength because we could never do this in our own strength. I wish I could take Lauren’s CP away, she is so bright, funny, strong, courageous, beautiful and deserves to walk. Sometimes life is just not fair!