A revival of the lost blog.

It has been an extremely long time since I have blogged about anything. I've thought about it and thought that maybe I would start a new blog because this one makes my heart hurt at times when I think about it. But the truth is, this blog still fits.


So many changes have happened. I had to look back on my very last post to see where I had left off. In the last one, it had been 11 weeks since Dinky passed. Now it has been 18 months. How is it possible to have gone this long without looking back? The only reason I landed here was because a Facebook memory popped up from when he and I were in BCCH and and been meeting with people to discuss a G-Tube and the Keto diet. How has it been 2 years already since that happened? Time seems to speed right up.

Tink has finished pre-school so she's heading into Kindie in the fall. R2D2 is in his very last weeks of 4th grade. Summer vacation will be a long one.  G  is so active and busy I just don't even know how to handle it sometimes.

Yes. G. It turns out that a few months after Dinky passed we found out we were expecting a rainbow baby and boy did that throw  us for a spin. It was stressful and the pregnancy was so full of worry but at the same time I now feel like our family is almost 100% complete. It would be better if Dinky were here but if he was, G wouldn't be. It had been discussed and we had both agreed that there were going to be 0 babies after Dinky because he required so much care that it would be impossible.

Turns out Dinky had plans for us and sent us G. He was born 11/25/16 at 8lbs 12 oz. A healthy baby boy. It was amazing. I mean labour itself sucked but it was over with fairly quick. So G is almost 7 months. And he can, at this point in time: crawl on all 4s, pull to stand on everything, walk along furniture, push boxes and toys to walk places.. he is so busy and so active.

Life is still trucking along. Even if we don't have Dinky here with us. Yes. It is sad. But I don't feel such a deep black hole of grief every time I think about him. I'm not sure if that is a good thing or a bad one. G has been a heart healer. Even if it drives me crazy that he's always on the go, always needing to be pulled from places. I do however wish he could just sit still for a few minutes!

That's all for now. I must go rescue him from the corner.

11 weeks.

I don't know where the time has gone. I find it really hard to believe that it has been 11 weeks already since our sweetest little boy passed. It doesn't make sense to me. I cannot fathom just how exactly we have been able to...not only survive, but slowly starting to figure out how to live again.

Dinky wouldn't want us to be sad all the time. That wasn't his life and that wasn't how we lived when he was still here Earth side with us. We had our sad moments but our lives were not sad. Sad situations, yes, but it was never ... sad. How could we continue to live in the sheer sadness, Dinky wouldn't want that. He wouldn't want us to cry all the time.

I still cry. I cry a lot. I cry over the smallest things. And that's a good thing. Tears are healing. I have been slowly, very slowly moving things from all over the house and into his room. Which makes me cry. Every time I put something else into his room the tears call. Not hard and fast, but that gut wrenching slow cry.

Tink calls everything small Phoenix sized. It's starting to drive us NUTS. Phoenix blueberries, french fries, oranges, squirrels, rocks...everything small is Phoenix. It's batty. She's also obsessed with a baby sister. All the time she's constantly asking for and chattering about baby sisters. Baby baby baby. Silly child. You're killing us.

I've started crafting a lot more and I have found some pretty neat new things to try so I cannot wait to order some more supplies for something totally different. I just need the money for it. Which is fine, I'm planning them for Christmas gifts so if I start now I can save for them.

I can't write any more. I just needed to write... something.

Birthday, memorial, eulogy..

R2D2 is now 9. It's hard to sit here and wonder where the time has gone. How has it been 9 years already since my life took a turn for the better. Where have the years gone? How is it possible that the little boy that was born with the help of induction has turned into someone that is in grade 3?! He was born 10 days late at 7lbs and 14oz. My little spitfire baby has all grown up on me.

We held his birthday party for his friends at the local bowling alley. It was a chaotic mess but everyone had fun so that's all that matters. However, we won't be doing that again next year. Maybe next year we will try the swimming pool again as it's hard to have so many older kids in the house and keeping them entertained. Where we live it seems like people have forgotten about things to do for the kids. Now that the movie theater is on the verge of closing, we have lost out on that one small thing to do. All we have left is the bowling alley and the swimming pool. I sometimes miss the things that big city living provides. The oppertunities for the families with kids. The shopping. The options.

For his actual birthday, we just held a dinner here for him. But this year it was special because we had family from out of town here to spend it with us. Great grandparents, grandparents, uncles...they were here to welcome him into his 9th year of life. But they weren't here just for his birthday. The memorial for Dinky was being held the following day.

It was a good service from what I can remember. It seems like so long ago now. A lifetime ago. Everyone that came made the day just that little bit better by their show of support and love for us. I wrote the eulogy which was helpful and healing in a way, but it was hard. I couldn't find the words to write so I turned to the trusty wine and was able to just let things flow quickly. Typing while crying a waterfall was hard. The memorial was touching. Our good and dear friend read the eulogy for us as I knew there was no way that I would be able to get the words out. I couldn't even sit in my chair a few minutes before the service started without crying. It was an emotional day. It was allowed to be. I'm glad it was because it was soothing in a way. To be able to freely pour out all of those broken emotions, to know that everyone else around us was pouring out their broken feelings...because in that moment we were all one with the sorrow and the loss of our sweetest little Dinky. His aunties wrote and read something for him and us as well. It was touching.

I'm glad that the service is over and done with. Now we can start to  move on (for as much as we can move on). I don't want to say that we have closed the page on that chapter of our lives, because we will never be able to fully do that, but we at least can go into the next chapter. Losing a child is devistating. Some days I want to pretend that it never happened, that it was all just a dream until I see the small box on our window sill, his picture, his framed footprints. We all miss him so much that it just doesn't seem fair. How can it be fair. It's not fair. I selfishly want my baby back. I want his cuddles. The laughter. The love. I want it back so badly. But it's selfish because his life, while so full of love, was so hard for him. As a human being, I am glad he's at peace. As his mother? Ugh.

We also, on top of everything else, got a puppy the day after the memorial. It's a fun adventure to have a puppy as it's something that I have never experienced before.

I'm tired of writing right now so I shall leave a copy of the eulogy that I wrote here.

I would like to begin by thanking everyone for being here today, our family is touched that you all are here to show support for us during these trying times. We are also grateful that you are here to pay your respects to our son Phoenix, or as we called him, Dinky.

There is nothing more heartbreaking than the death of a child. It seems to go against nature that a parent should have to say that final goodbye to someone so young. As you all know, Phoenix was a complicated child even before birth. But that didn't mean that we didn't relish in the joy that he was going to bring us. It wasn't long after birth that things started to become more complex with him. Life for our sweet boy wasn't easy. And it wasn't always kind. But every day he proved to us time and time again that he was strong. And he was alive. Even as physically restricted as he was, he worked so hard for every small thing that he did. Not much came easy for him if it involved physical strength. His little body just couldn't handle the things that a "typical" child could.

However, laughter came easily. It didn't take much to get Phoenix to laugh. The sound of the lawnmower or the chainsaw would have him in stitches. A sneeze from someone. One of us parents scolding one of the bigger kids. It didn't matter because he thought everything was hilarious. Trying to roll away during diaper changes turned into a great game for him to play and all I can say is I'm glad we don't have carpet to deal with!

Love also came easily to him. Everyone that met him loved him. With his big eyes and charming personality, you couldn't help but lose a little piece of yourself to him. The strength and determination that he showed every single day was such an amazing thing to see. We couldn't rush him into doing anything as the only time that he went by was Phoenix time. But that was fine. That taught us that we needed to slow down, to embrace and enjoy the smaller things. To take the time to discover that it really was, and is, the small things in life that matter the most. Phoenix loved his older siblings so much and there was nothing as amazing as watching them all interact with each other.

Although his life was filled with the complications of epilepsy and physical limitations, Phoenix gave everything his all. When the days were good, they were so great. All the laughter, all of us encouraging him to practice some new small skill that he had, the smiles, the life in his eyes. Yet not every day was good. In fact he had more bad days than not. To watch your child, or any child, struggle with anything is hard. But to watch them deal with uncontrolled epilepsy was heartbreaking. Knowing that there was nothing you could do for them to help make it go away is possibly one of the worst feelings out there. It was physically and emotionally draining for us, him, and anyone that had direct contact to watch. But he never gave up. Phoenix proved time and time and time again that it wasn't going to keep him down. For every good day, we had five bad ones. Which only meant that when those good days happened, we never took them for granted.

Phoenix taught us to slow down. To live life to the fullest. To love hard. To find strength even when it felt like there was nothing left. Dig just a little bit deeper. Find silver linings in every dismal situation. He taught us that every little thing is something to be thankful for. And even though we only had him for less than 16 months before he gained his angel wings, we made sure that he was loved. And that he knew he was loved. Every single day. There will not be a day that doesn't go by that Phoenix isn't in our hearts. We all loved Phoenix, one way or another. Family. Friends. Doctors. Therapists and support workers. He brought us all together even while we were trying to figure him out.

I miss you Dinky. We all do. Thank you for teaching us and letting us all love you for the time that you were here with us. Your memories will be cherished for the rest of our lives. You've left a gaping hole in our lives that will never be filled.

And as Robert Munsch said: "I'll love you forever, I'll like you for always, As long as I'm living, my baby you'll be.”

Month one

At this time exactly one month ago I was sitting on a chair with you in my arms crying the heart broken tears of a mother that has lost a child, a part of their heart and soul. You were wrapped up in your Hugginz blanket and I stroked your hair, your face, your eyebrows as I tried to imprint every last thing about you in my mind. In my heart. I kissed your soft blonde hair, your chubby cheeks, trying to shower you with as much love as possible. Even though you were no longer Earth side I know you were still with us, watching us love the body that was left behind.

Our lives changed exactly one month ago. You left us and it's not fair. Nothing about your life was fair or easy for you. But your strong determination gave us proof that you were imperfectly perfect. I still find it really hard sometimes in the evening when I open the fridge and notice that your medications aren't there. That I do not have to spend 20 minutes a night making up formula for your feedings for the next 24 hours. That I don't have to crush pills and draw out medications to try and help you get over whatever illness you had, the seizure medications that never worked out perfectly for longer then a few weeks.

Your daddy finished the box that will now be your home and it's beautiful. You're tucked inside its wooden walls that have been infused with love (and possibly some of his tears) sitting on the kitchen table. Some of your ashes are in a plastic baggie (we're sorry for that but daddy will be making something soon!) and stored in the extra Cody bear that we got for you. You're always with us darling. You were a part of our family and you forever will be. I kiss you every morning as I whisper a good morning Phoenix just like I kiss you every evening as I head to bed with a I love you Phoenix, good night.

Sleep is hard. For the first week it came easily. I would just lay in bed with the Cody bear that you so very much loved clutched tightly to my chest and close my eyes. I would quickly slip into slumber. But now I find it hard to get there. I lay in bed and my mind races non-stop. A continued loop of what-if. What could be different. What would you be doing right now. How do I deal with this giant gaping hole in my heart. I try not to slip into that dark place, the one that my mind can easily fall into. That place where I know he misses us-He's scared and all alone-Was there ever a time that I could have hugged him/loved him more/harder-He should have had more hugs and kisses. It's not a good place to go and I hate it. I know you aren't alone. We loved you so much and so hard that if love could heal you, you would still be here walking around and causing the same kind of troubles that your older sister got into when she was your age. You never went a day without love. I need to remember that, but sometimes it's just so hard.

We're almost done with planning your memorial/celebration of life. That's going to be so hard. Time passes so, so quickly and I hate it. We had 15 months and 18 days with you. It's not fair. It wasn't enough time. It's what we got but it just wasn't enough. How many more hugs and kisses could you have had? I never wanted to co-sleep, yet you spent more time in our bed then not. I don't regret it. I miss the smell of your hair as your head was up on my chest nestled close. I miss you. I miss you so much that sometimes I feel like throwing up. There is still a small pile of your clothes in the living room I just can't figure out how to add them to the rest of your stuff that's behind the closed door to your room. Your rocker is still beside the cough with one of your Lulujo blankets, your duck and your head pillow. I'm not sure how long that will stay there for, but it's there. You loved that chair.

We miss you buddy. We will miss you for the rest of our lives. I promise that we're happy and that we all love each other, that we all miss you and wish you were here with us. It's not easy without you. It wasn't always easy with you either, but we loved you. We learned to adjust to whatever was happening with you. It became a new routine, the new normal for our family. Every time you and I went to BCCH something new happened or changed. So our lives were constantly learning a new normal. We adapted and adjusted. We loved. We cherished. We laughed. God, how we laughed at your crazy antics and goofy streak. If you had grown up with us, I just know you would have been the clown, no matter what life threw at you. You laughed. You were so proud of everything. WE were so proud of everything that you could do. We were sad also at the things that you couldn't do, but we were proud of you. 

Learning this new normal is hard. It's ugly. It's soul-crushingly awful sometimes. It's not that your siblings are any more or less crazier than normal. It's not that me and daddy aren't getting along. It's just you're not here. I know you're with us in spirit, looking down on us. But it's not the same. Nothing will ever be the same. And that's something that we need to learn. Nothing. Is. The. Same. But like the previous months before, we will learn. We will adapt. We will survive. Because we are strong. We love. We care.

Time keeps moving on but you left a mark on so many peoples lives. People all over. Family. Friends. Strangers. Doctors. Therapists. Support workers. Ambulance workers. Daddy's co-workers. A little mark on so many people. Not many can boast that knowledge. I hope you're proud of all that you accomplished during your time Earth side my darling. I hope that you know that you are loved. Every day. And that we're happy (some of the time). And that we're learning to be without you here with us.

I found this quote not long after you gained your angel wings: "...In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night..."  I love that quote. It fills me with a sense of peace and comfort. Because that's where you are my darling; laughing down at us from your bright perch in the stars. Laugh hard buddy. Laugh. Play. Dance. Do everything that your little body just couldn't do while you were here.

I promise you, my sweet little boy. We will be happy again. And you will NEVER be forgotten. And that we will be alright (maybe not today or even next week) but we will be alright. 

I never thought that I would be sitting here, staring at the keyboard, wondering just how to get all these things that are in the depths of my being out. I never once thought that my witty quips and random thoughts would fail to come pouring out from my fingertips with the scary ease of someone that really doesn't care about what people think.

But I can't do that. Not right now. Not today. Maybe not even 100 years from now.  Our life has been uprooted. Our once steady tree that we called family has turned sick. It's become blighted with disease and has caused a limb to fall off, leaving us broken.  As we stare at the spot that once was whole and hearty, even if it wasn't healthy, it was a part of us.

And it's gone. It was stolen from us. Taken.

Days seems to be at this weird impasse where they move quickly yet so agonizingly slow at the same time it's like an Olympic runner slogging through maple syrup. Every day is so different. Yet so exactly the same. Every day revolves around functioning. It revolves around eating, playing, cooking, cleaning, breathing. It revolves around being. It revolves around grieving. It revolves around that choking feeling where you have something lodged so firmly in your throat that you cannot clear it. It revolves around a tight chest, shortness of breath, unimaginable pain exploding in the extreme depths of your soul. It revolves around trying to figure out just where the sliver of silver lining will be in your day. It revolves around loss. Of tears. Of anxiety. Of the intangible questions. Doubt. Fear. Worry. It revolves around trying to figure out this new person that has taken over your body. It revolves around trying to figure out how to become whole again when such an important piece of you has been taken away.

Our life has shattered. I feel like there's something in me all the time that is just broken. I'm constantly fighting back tears. And when they do come they're the kind that fall slowly. They're the tears of extreme heart break and loss. Wet, silent reminders of things that have passed. Wet, silent reminders that I am alive, that I will endure. I will never be perfectly whole again. I will always have a damaged piece that will never fit quite right. Like that leftover puzzle piece that wasn't made quite right so that there's a perfectly imperfect blemish on an otherwise good picture. Others might not notice it, but it's there.

Our sweetest Dinky is gone. And it hurts. He slipped into his angel wings at 10:03 am, Sunday, December 13th 2015. 10 days before my 30th birthday. 11 days before his 16th month mark. 12 days before Christmas. And about 1000 years before we were ready.

No one is ever ready to say goodbye to their child. No one ever wants too. But it happens. Every day around the world someone is kissing their child for the last time and I will never, never forget that his very last kiss on this Earth, with his physical body, was the one that we gave him as he was taken from us. His heart wasn't beating, He had become stiff. Cold. But that was my last kiss to him. To the top of his downy soft blonde hair. Maybe one day I will write about the events surrounding his passing. It might help in some obscure therapeutic way.

I miss his face. The smell of him. His laughing eyes. The happiness. The perfectly imperfect person that he was. He was the very definition of strength to us. We are not glad that he is gone. No one can ever be glad that their child has passed. But we are thankful that he is now at peace. His life Earth side was so, so hard for him but he gave it his all every day in any way that he could.

His last moments Earth side were surrounded by so much heartbreaking love that it still makes me short of breath. We were blessed that we had those moments with him. To tell him that it was okay, that we loved him so much, that he had been so strong, that he was so strong, that he was so so loved. That it was okay for him to go. We sung to him as we held him. We wept the tears that only those that have dealt with loss know. Dinky slipped into his angel wings to you are my sunshine. And he was. He was such the brightest little sunshine.

And when he slipped into his angel wings he took that light with him into the sky, into the stars. That's where he is now. And it gives a sense of comfort, if not peace, to know that he's up there watching us. Shining brightly.

Whole. Healthy. Physically able to run and jump and play and swim and swing. He's whole in the stars. He's healthy and that is such lovely thing to know and to think about. And he knows that he is and will be forever loved, every single day. I just wish that I had more. More time. More love. More hugs and kisses and cuddles and laughs. More smell. More laughs. Just more of everything. He will never grow up here. He will never know his second birthday. Or Christmas. We will never know of the things that he would learn to do. Never know if he would take his first steps, learn to say words. But we know that he was loved. And there was never a day that he doubted it. And for that, I'm thankful.

Even when it feels like my heart is being ripped out of my chest about 100 times a day. Even when it feels like I cannot breathe. That I'm drowning in what seems like my own personal ocean of hell. A fellow mum in one of my groups knows this pain. She knows exactly what we are going through and she said that her husband said that grief is like the ocean.

And it is. Sometimes there are good days. Calm, steady days. And sometimes there are the bad days. The ones that suck you under. And sometimes I fight to get back up as quickly as possible, even if it leaves me exhausted. Sometimes I just let it take me because I know full well that eventually it will pass and I can break surface again.

All I know is that what doesn't kill you makes you stronger. Life ever gives you more than you can handle. And that I am so extremely blessed to have the strength of my family and friends. Of my husband. Of my children. My parents. In-laws. Friends. Neighbours. I know that one day I will be able to find strength in myself again as well. Because that's what we do.

We are not victims of child loss.

We are survivors. Even if that means we have to figure out how to find our feet again. We are survivors because I refuse to give up, because we refuse to give up. Divided we falter and fall. Together we can rise up and become whole, never perfect and forever we will be scarred. But the wounds will stop bleeding one day, and one day there will be a scar. And one day the mention of his name won't be a giant kick to my soul. But not this day. And not tomorrow. But one day.

We miss you so much Dinky, our sweet little boy. We love you so, so much. Rest easy, dance and dream and play. Kiss us from the clouds. Our sweetest little Prince of the Stars, you'll always know how much we love you.

A step away from the norm.

This is not going to be a typical blog about the progresses of our life around the house. Instead I'm going to blog about something that happened recently that I found to be a bit disturbing. For those that know me, know that I do not like nor tolerate mass blanket statements, regardless the topic. Nothing in life is so set in stone. Nothing in life is so black and white. Everything has a hundred shades of grey.

The other night I commented on a post that I felt to be wrong. And I was shamed for my beliefs in my views. A statement was made that my child is the way that he is because of something that I did/ate during pregnancy. That his epilepsy could be cured with more natural means. That we are so dependant upon pharmacuitcals that I was blinded by anything else and of course I was defending big pharma companies because my narrow vision refused to allow me to see anything else.

A medical "professional" expressed her views in a way that was just shallow and tragic. I calmly replied to the post with exactly what our situation was. Why we were on pharmas, why we believed in them. Because it if wasn't for pharmas, we wouldn't have Dinky. Epilepsy is not something someone can cure. Once you're epileptic, you're ALWAYS epileptic. Much like once you're an addict ALWAYS an addict. I had informed these people that the use of CBD oil is an option that is now easily accessable if you know the right avenues to get it. Yes, people all over turn to pharmas a lot more quickly than they should be. Yes, there are more natural methods out there to help curb health problems. Yes, there is a link towards clean eating and taking care of yourself that will help solve health issues. I know this. But there are those out there, millions upon millions of people that depend on big pharma companies to live.

Do I wish there were more natural treatments for Dinky? All the time. Do I wish that our life didn't have to revolve around pill crushing? The formula making? The hospital living? The therapies? All. The. Damned. Time. But if wishes were pennies, we would be so, so rich. Wishing for things to change doesn't mean they will. Wishing for things to be different turns into a big cycle of loathing. Of fear. Of worry. Of what-ifs. I do not have time for that. If I were to spend every moment of every day wishing for things to be different, I would miss out on so many of the things that Dinky CAN do. I would miss out on all the things that ARE Dinky.

Yes. Big pharma companies could and should fund natural approaches so that not everyone needs to rely and depend on them. Yes, it is because of big pharma companies that there are all kinds of problems with drug-resistant strains of everything. Yes. I know this. I am not an idiot regardless of what some people think. I do not agree with prescribing a pill for every single cough or rash. I do agree that holistic methods should be taught in school and used in conjunction to "traditional" means of medicine. For a lot of conventional medications there are more natural treatments. I know this. I am not an idiot.

If turning vegan and clean eating would solve the massive world health crisis, I support that. I am not against a natural remedy when it works. My older children get more holistic approaches when they're ill. However, that has no place in Dinky's life. I pointed all of these facts out in a calm and educated manner. Yet I was belittled. I had asked a couple of times for suggestions for more natural approaches towards helping seizure management. My pleas were ignored. You would think that if you have some kind of information or suggestion to help ease some of the troubles that my littlest is dealing with, they would be suggested. But no, I was attacked.

I was told that I took a statement and blew it out of proportion. That I took offense to a statement were none was to be had.

My views on certain things differ from others. I am okay with that. I never shame anyone for their views on anything. Because I am human. And I have compassion. But these people would not take me seriously. Why?

Because I am a meat eater. I am a murderer. My children are growing up in a home without compassion. I am no better than a racist. Because I eat meat. Therefore I am the worlds worst person, because I eat and enjoy animal flesh, I must be uneducated to the plight and suffering of animals that die. Of the animals that are abused and mistreated in the name of commercial farming.

Now, let's get one thing straight. I enjoy meat. I DO NOT agree with animal abuse. No animal should suffer. But because I eat meat, I agree wtih animal abuse. Because I eat meat, I'm part of what's wrong with the world. Because I eat meat, I lack compassion and empathy. I have no heart.

***(I will take this moment to apologize right now because I try not to cuss in my blog)***

FUCK. THAT. SHIT.
No one has any right to judge my compassion (or lack there of) if they have no actual part in our lives. No one has any right to judge my empathy (or lack there of) if they have no idea what we deal with. Every. Single. Day. No one has any right, period, to judge me for the choices we make as a family unit. Of the choices I make for myself. My family. No one has any right to judge ANYONE because of their views. Yet it happens. All the time. Every single day there are people out there judged because they view things differently. Because they believe in something different.

Guess what.

I do not care what you believe in. You believe in something. You believe in God (whatever flavour you believe in, good for you!). You believe in animal rights. Hooray for you! You believe in the purple sock wearing-cheese eating-burping pig from Saturn? Okay I think that might be a little strange, but SO WHAT! I don't care.

However, I do have a problem with zealots. They're everywhere. Those people that believe in one thing so hard that the whole world has to be wrong. They'll kill for their beliefs. They'll die for them. They will spend hours every single day fighting those that think differently. That believe differently. That feel differently. That eat differently. They'll judge swiftly. They'll judge harshly. They'll act out in terroristic ways. They have no problem murdering. Of hurting. They do not listen.

That I do have a problem with.

Vegans that reach Hitler level of crazy have no sense of compassion towards humans. It's like they reserve all their compassion towards animals and forget how to act like decent, respectful humans. That pisses me off. Everyone has a story. Everyone has the moral right to choose what they feel works for them. Regardless of how you disagree with their choice, you are no better than anyone else.

Comparing someone that eats meat to being a racist? Please.

If I'm racist because I eat meat... doesn't that make Hitler level Vegans... ISIS?

They act no better than them. It's disgusting. I eat meat. They eat plants. I don't care. Save the world. They're entitled to their opinions. I think they're bat-fart crazy in the way they go about it. If you believe in something, educate. If you want people to learn, educate. Do not judge. Provide facts and ideas.

And my whole blog post got turned on itself.

But don't you know that Dinky's problems would be solved by clean eating. By natural means of medication and care?

My whole point is this:

I believe in what I want to believe in. I believe that pharma companies can and do help people. I believe that the pharma companies can and should fund natural treatments. I do believe that.

But I also believe in and know for a fact that if we did not have access to pharama companies, my child would be DEAD. So I am thankful for pharma companies. I am thankful for those that turn to natural remedies. I am thankful for the activists that push so hard to get medications. I am thankful for the activists that fight long and hard to get natural treatments easily accessable to people. I am thankful for the support of friends and family that stand with us in our choices for Dinky and for our family. I guess I have to be thankful for the crazy zealots as well. Because without them I wouldn't realize how normal I am.

That being said: If anyone has decides to get all Hitler crazy in what they believe in, please, calmly exit my life. I do not have time to deal with another round of crazy.

It's been a while since I last posted a blog. I know I constantly say that and it's true. Trying to get into the habit of updating this blog is harder than it seems. I had almost 2 weeks in BCCH with Dinky and I thought about doing it then but ... I got caught up into the wonderful trap that is known as Netflix.

In the last month lots has changed. We did a video confrence with our neurologist and her team and it was decided that indeed the Ketogenic diet would be our next step in trying to gain seizure control. So we were admitted into BCCH on October 25th. The day after Tink's 3rd birthday. I cannot believe she's already 3! Time has passed so quickly that it's almost terrifying. We are part of a program that covers almost all of Dinky's medical needs so they were able to provide us with a flight down to Vancouver. When we got there we were brought to a semi-private room (hooray no baby room!!) and while Dinky and I settled into a hospital room once again, our wonderful nurses explained what would be happening over the course of the next while.

Dinky had to fast for 12 hours to make sure that all of his regular formula was out of his body. Blood work had to happen to check for all kinds of vitamin and mineral levels. We had to do blood sugar checks every 6 hours for 72 hours after starting the Keto formula.

Monday morning brought on the formula changes. For the first little while he seemed to tolerate things really well. They started at a 1:1 ratio. Tuesday we moved up to a 2:1 ratio and finally started getting ketones! Ketones are the byproduct of fat in your body. This was a good thing. Wednesday we moved up to a 3:1 ratio and there things started to get tricky. Dinky was throwing up often and he was listless, tired, grumpy...all around just plain awful. So the team came by on Thursday morning just after a case of really bad puking and told me that they had ordered a chest x-ray to see if he had aspirated anything into his lungs. Now because the Keto diet is so high in fat if aspiration happens it's almost instant pneumonia. They also decided to change out his G-tube to a G/J tube. Chest x-ray came back perfectly fine but the risks were just too high. They checked his blood as well and that showed that he was so far into ketosis that his numbers were higher than they would like to see. So he got a 30ml shot of juice to see if that would level him out a little.

Friday morning the tube change happened. The G-tube feeds directly into his stomach. The G/J mickey has 2 ports. G goes into his stomach and that is to be used for medications and the J goes into his small intestine, totally bypassing the stomach. The only problem with that is that he has to be fed 24/7 at a really slow rate.

We had a hard time getting him out of ketosis, even with another 3 30ml shots of juice. The weekend was uneventful.

Monday morning we started Keto again. This time it was decided to go up in half steps to see if he tolerates it better. So Monday was 1:1. Tuesday was 1.5:1 and Wednesday was 2:1. Blood work was done on Wednesday to see if we needed to go up another half step or if Dinky's ketone levels were fine. And they were! We stayed at the 2:1 ratio. We were discharged on Friday morning to come home!

Husby was asble to get his last week of holidays moved so that he could stay home with the big kids for a week. To be honest I was really, really nervous about leaving them alone but he proved me wrong. As he always does! I need to stop underestimating him, or I just need to stop being such a worry-pants.

So that's what happened in a really small nut shell.

Keto requires a LOT of work. Everything needs to be weighed and measured exactly so. Medications need to be specific brands. Anything that touches Dinky has to be as low in carbs as possible. I never thought that things like shampoo, soap, body lotions and baby wipes would contain carbs. They do. It's terrifying. We have to check his urine ketones twice a day which requires cotton balls in his diaper and squeezing pee onto a strip. It also involves blood work every 3 months. But if we have good control, that's all that matters.