Thursday, March 31, 2016

Fundraiser

Kreed has been hospitalized almost exclusively since early February. As a result he has needed both parents at home because it takes two people to help deal with Kreed and takes two people to manage the home and be at the hospital for him. Kreed has now suffered through devastating pain with peripheral neuropathy, tonic-clonic seizures with his heart stopping, discovering his rare metabolic disorder that has gone un-treated for 18 years and now a recurrent lung disease. At this point, we don't know how long he will be in the hospital and then don't know how long I will have to be out of work for. So many from Kreed's World have offered to help, so I have set up a paypal account to receive donations. We are appreciative of anyone who can or would like to help.

To make a donation, please use PAYPAL and send to erinmpolk@gmail.com


video


Wednesday, March 9, 2016

Giving up was never an option

The life of Kreed is a difficult one. His youth was filled with chaos and destruction as his skills declined and the world no longer made sense. As he got older and had some form of communication with an AAC device, he then struggled with medical emergency after medical emergency and Kreed became a medically fragile and medically complex child no one could figure out. Perhaps one of the most difficult things for Kreed and being incredibly medically complex is the fact that he has paradoxical reactions to most medications.  For each of his medical conditions, Kreed is unable to take any traditionally prescribed Meds or none of them at all. This made his medical conditions that much worse. Throw in a teenager in the throes of puberty who doesn't understand pain and his self injury raged out of control.  

Once Kreed moved to Colorado, he was met with unparalleled medical care. Doctors finally willing to see his medical issues and not his behavior. They also explored even further his reactions to medication. Kreed is left with very few medications to help him. Doctors spoke to us over and over about alternative medications that could help a majority of his symptoms. We were hesitant and had only moved to Colorado to help Kreed's legs as high elevation kept him mobile. 
After another set of reactions yet again due to his paradoxical reactions and plunging blood sugars that would eventually require a feeding tube, we took their advice. Kreed began medical marijuana in the hopes of somehow saving him from his pain and plunging blood sugars, epilepsy (including now tonic-clonic seizures) and self injurious behaviors. The doctors were confident he wouldn't have a reaction to that and there were many different medical and behavioral reasons for him to try it. 
Within a week, we saw Kreed's blood sugars stabilize. Where once there were plunging, unrelenting lows, there was now stability. Where once talking about a feeding tube was a daily discussion, there is no discussion. 

Kreed also has severe self injury. No medication on earth stopped him in his tracks from tearing his body apart. Now there is. Every other medication on earth made his self injury worse. Now he knows periods of calmness and happiness. He still had attacks now and then, but they are far less and far shorter and less intensity than ever before. 
Cannabis has saved Kreed's life. From the medical to mood effects. We knew next to nothing about cannabis and what it can do for Kreed prior to the doctors pushing us toward it. The more we researched, the more we understood. And the more we realized this medication would save Kreed and countless others. Kreed is highly sensitive to any synthetic drug or chemical. 99.9% of the time he can't tolerate. So how thrilling is it that a simple plant has held so much medicine for Kreed and changed his life. 
We hadn't talked about it on here for some time. There is always fear of backlash. Always fear of comments. But no one lives our life and understands what Kreed goes through. And the fact that he can make it through days without injury, weeks without low blood sugars and his terrible neuropathy pain somewhat controlled, and seizures controlled we would be negligent parents to not try it and then keep him on it once we see it works. Comments don't bother us when we have no shame. We leave no stone unturned for Kreed. And I know his story could help many more by telling this part of his story. So many other children and teens and adults with autism that could be better helped with a simple plant. Where calmness can replace chaos and happiness replace self injury. To not see Kreed try to tear himself limb by limb is in itself amazing to us and autism should be a qualifying condition for so many. While Kreed started cannabis for medical reasons, it's also helped his mood and affect as well and be able to handle so much of the medical issues causing him pain and discomfort. 
Kreed's life took yet another step in a journey to health with cannabis. It has been the one medication to single handily save him from so much. So much so, anytime we are admitted, the doctors always make sure we have it and administer it while inpatient. 

So thank you to the open minded doctors that saw what we didn't, and helped our son find his way out of low blood sugars, constant un-ending pain and self abuse. We have so much to be thankful for in Colorado, and this is certainly one of them. 

 *Disclaimer: I am not here to say what will or won't work for your child. I am not here to push any specific medication. Every child is different and only you know what is best. What I am here to say is do not give up, be open minded, research yourself, and realize that most doctors are more than willing to prescribe it and try it. 

Medical Facts about Cannabis
* There are no recorded deaths as a result of cannabis over-consumption.
* The lethal dose of marijuana has never been quantified because it is so high and humanly impossible to achieve.
* There are no serious lasting side effects.  There are certainly risks and side-effects to consuming marijuana but they are more mild than those of most prescription drugs.
Cannabis does not have to be smoked.   Intake methods include vaporization, eaten in food, taken under the tongue or swallowed as a tincture, oil or even juiced.
* Kreed uses oil 
* Cannabis supports the body as an anti-inflammatory, neuroprotective and a vasodialator.
* There are three main compounds- CBD, and indica and sativa strains of THC. 
* CBD is well known for its medicinal effects on seizures, inflammation and other medical disorders. 
* Cannabis indica is known and used for its sedative and relaxing properties effective in treating medical issues like anxiety, chronic pain, insomnia, muscle spasms and tremors. Indica often causes drowsiness, which is why many prefer to take it at night.
* Cannabis sativa strains are more stimulating and are often preferred for day use as they deliver a more psychoactive energetic-mind-high. This effect is caused by the higher THC levels in sativas than indicas. Often helps with ADHD, migraines and other brain based disorders. 
* We support the use of the whole plant and not just CBD use. 

Sunday, March 6, 2016

The Cost

Nobody ever talks about the cost of things. There is a reason why they say special needs parents often have PTSD but no one wants to talk about it. This last visit with Kreed in the hospital was tough. Every time I close my eyes or things are silent, I just hear him scream over and over again. Or when I look outside at the backyard I see where he had his seizure and stopped breathing. 
A lot of special needs parents operate on 3-4 hours of sleep or less. Does anyone wonder what that does to our brains, body and life? Yet you'll see that same parent smile and say she's fine. But we aren't. 

Or when alarms beep at us at 2am telling us our child is having a seizure, or low blood sugar or oxygen desaturations. We live in a constant state of fear for our children. But no one talks about that. If we miss a falling blood sugar, Kreed could die in his sleep. That's also the reality for so many parents with kids with type one diabetes. Kreed has hyperinsulinism so we deal with constant lows. So no, we don't sleep or rest even when it looks like we can. 

Then comes the daytime after a night of little sleep. Either because medically we can't or our kids start bouncing off the walls at 3am and don't sleep so then we have to protect them from getting into things all over the house or trying to escape the house. 

We love Kreed and do everything we possibly can to ensure he has the best life possible. He didn't ask for this life and to be born into the broken body he has. We will never stop fighting for him, loving him, caring for him and making sure he lives one hell of a life. But at the same time, no one talks about what happens in the times we are alone crying and wondering how we can possibly make it another day or fight another doctor or stay up all night another night checking blood sugars. 
And right now, every time I close my eyes I hear his pain scream as he gets his infusions to end his status migraines. Or the way it felt to hold his lifeless body in my arms. These are the moments we don't always talk about because it is so hard. We are conditioned to tell everyone we are fine and okay and we can keep going. Because what choice do we have? We work every day to keep our children healthy and happy no matter what comes our way. People always talk about taking care of yourselves to take care of others, but the majority of time that's not even possible. Some people don't have extra help at home, either due to lack of services or wait times for services. So we just do the best we can do and make sure everyone knows we are okay and will keep helping our children. 

We don't get to go out and have dinner or see movies. We don't get weekends away together while Kreed is taken care of. Our life is Kreed. Maybe one day when he's more stable we will get those moments. But does anyone wonder what that does to you as well? No sleep. No time. No togetherness except bonded in the stress of a child. 

No one talks about the cost of being a special needs parent. It doesn't mean we love our child any less. It doesn't mean we won't fight like hell for him. It doesn't mean we will let his medical conditions overtake him. But just as there is a cost to him having such a broken body that can't do the things he needs to do, there is a cost to us as his parents and our mental stability. The sleepless nights, the aching muscles from holding him down during another pain rage, the lack of togetherness, and the extreme duress our bodies and minds are put through...that is our cost and some days it is more than we can bear. But you will never know that. You'll see me smile. You'll see me interact with Kreed with no trace of tears. You'll see me lift him up and keep getting him to shine. You'll see me wipe away his tears, the blood and help fix him up. You'll see me work to keep him active and busy and happy. You'll see me help him when it's hard. You'll see me trying to think of new ways to help him. You won't see the tracks of my tears, you won't see the blood I cleaned off myself, you won't see the copious amounts of Advil I took for my aching muscles, you won't see my tired, hurt eyes (but you may see my black one ha)
Because I am fine and he needs us right now more than anything we need. He is in pain and hurting. So we love, we love, we love and we pick up the pieces so that our boy may one day smile again. And we keep going like a force no one has ever seen to keep him well, make sure his doctors listen and to find our way back to his dimples. 

But don't ever deceive yourselves when you see a special needs parent smiling. They bear costs that you will never know about and may never understand.