A view of loss

>> Tuesday, October 25, 2016

Bug has been doing pretty well on the new treatment protocol.  His seizures are down and his Doctor has agreed to keep him on the Dilantin and monitor it. Oh hooray!

He has seemed more present and aware, more interactive. We all see it, and we all doubt it, because we have been this route so many times before with little but let down in the end.

Today, this new awareness came at a big cost. Big for him and massively big and tremendously sad for me.

There is a picture frame that has three pictures in it. In the center is one of Grandpa and Grandma together and on one side: Grandma with Tay and Ava and the other is Grandpa with Bug and a crying Aiden. Bug took the frame from the cabinet it resides in and has been sitting next to it and holding it for about an hour. Every so often, he touches Grandpa's picture.

This hurts my heart more than you can imagine. I wanted him to not realize Grandpa was gone, I wanted him to NOT remember walking with Grandpa and sharing M & M's with him. I did not want him to feel the loss, to feel like Grandpa was gone. And now...he seems to.

The tears won't stop. I can't help him with this feeling, I can't make it better in any way. Oh the hurt with the joy.


video

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North Dakota

>> Thursday, October 13, 2016

When Elly asked me to join her in presenting in North Dakota about Cannabis, I told her: I will do this for you, because you asked and also because she sorta, kinda threatened. But, I changed my mind. I thought: Why would I get back into that world? Did I not remember the vile and virtuousness of some of the people involved? I thought of the 40 days that we spent talking to people, educating about epilepsy, about cannabis; over and over. I remembered being ignored and then NOT being ignored. Sometimes being ignored was better. 

Then I looked at Bug. 

I called his name and he looked at me and….he smiled. That smile that was so elusive for so long, that prolonged eye contact that we were sure was gone forever. I thought of Charlee. I thought of Izzie, I thought of Stockton and Connor and Isaac. I thought of Dad.

Still, could I really expose myself and my family to this; this potential upheaval as I pour my heart out and cry in quiet and try to be strong? I spoke to Glenn and expressed my reticence. He said: Seriously? This is who you are. You are good at it and you are reasonable about it. Then he promptly forgot we spoke about it until I reminded him to leave me alone while we were finalizing the presentation. Who is this for? He asked.

I laughed at him and reminded him, poking fun as I do, and he said: That’s really cool.

Okay.

So Glenn and I woke up at 5:30am on Friday and headed to DCA. I almost missed the flight because of traffic. I hoped it wasn’t a sign of things to come. It wasn’t.

In the Twin Cities, I met up with my soul sister Elly, for the first time ever. And the world began to shift; to lull its way into a new direction. For both of us.

We talked about what to say, what not to say (THAT is very important with so much misinformation out there about cannabis) and we laughed a lot. I do mean a lot. It was like schoolgirls at camp giggling about their crushes. I didn’t do that when I WAS a schoolgirl let alone at THIS age. Never mind what age, just know I am not 30 anymore.

When we landed, Mary picked us up and took us to the hotel. Seems like a simple statement, as I am want to do often, but it isn’t.

Mary. 

Her golden locks, red lips and funky glasses told me she was an artist. With Bug having a bad run of it, I slipped on my due diligence, trusting that Elly had done all of it already. She had. Mary, Mother to Sam, was done with cannabis, done with the fight to get the truth out, done with hoping that North Dakota would provide help for her family by giving Sam something he had not had in years: a new chance. Mary told us that should their Measure fail, she was done. The Committee was all done. They would let the world around them move forward (or not) but they would retreat back to their lives and focus on being happy, out of this crazy Medical Cannabis world.

We invited her in, cancelled one of the rooms, and all three of us worked on the presentation and decided what needed to change and what we should focus on. She showed us an editorial that was in their paper that day. Sigh. Editorials are nearly always a platform for the loudest among us to continue to have their voice heard with or without fact. And since it is in print and a lot of people don’t pay much attention to the OPINION on the top of the page, it can be taken as fact. Problem was: this was without fact. Mary was upset. She deserved to be upset. Even as an opinion, written by the Newspaper Editorial Board, which I am pretty sure in this instance, consists of one person, it was devoid of truth about North Dakota’s Measure 5 and even more lacking in any scientific proof. Another heavy, heavy sigh. It was embarrassingly obvious they didn’t actually READ the Measure. Responding in like would be like arguing with an unarmed, drunk toddler. Not really worth it BUT still needing a response in order to be corrected, and ensuring the toddler doesn’t get away with the bad behavior, in order to learn.

As I watched her tear up, I thought of Bug. I thought of Taylor and Ava and Aiden and I thought mostly about my Dad. And the world shifted again. What world would I leave for them, and what can I help to alter to ensure that NO ONE absolutely NO ONE dies like Dad did? No. Never again must grandchildren watch Papa throw up everyday and cry and try to be strong. NEVER again will Papa’s not be able to play trains with their grandsons because the softball size cancer in his belly prevented him from sitting on the floor. My Dad, sitting on the floor, he always sat on the floor. 73 and still sat on the floor. This was for Dad as much as it was for children like my little prince.

We spent 5 hours going through the presentation with Mary. It was good and it was insightful. We shared some of our experiences with our programs, the good and the bad and we laughed and supported one another. Something I could tell that Mary needed.

Mary took leave of us around 8 or 9pm, I lost track of the time but I do know that Elly and I stayed up until after Midnight developing our approach...and giggling. We didn’t really want to sleep, but we did. Well, one of us did anyway.

The morning came and we headed off with newly printed notes and an introduction.

The first session found us presenting to just shy of 100 people, with many patients and caregivers, one Republican Senator, a Doctor, and a very careful police officer who raised his hand as far as his shoulder and then quickly put it back down. Hey there mister! We saw you. :)

So we presented.  It was good. It was strong in science and fact with no, and I mean NO, rhetoric. We showed them our children and the people we know that have been helped by cannabis. Even some that had not been helped because let’s keep this real and keep Panacea out if it. The scientist in Elly glowed and the heart and soul I poured into it, well, we saw the doubt in their eyes turn to hope. No exaggeration there…the determination in that room was palpable. It WAS good.

And the world was nearly aligned, the shift was almost complete.

We did the presentation again for about 20 people and they too left with more hope than when they walked in. Hope tempered with different expectations. Expectations based in reality. The data that Elly has is undeniable; it is based in science and careful, unbiased research. It’s beautiful. Truly and purely beautiful and I was awed to be a part of it. I kept thinking that I did not belong there with these people, not me, not this mousy Mommy with no college and only armed with heart and dedication. But there I was, standing in front of people listening to them tell me about their MS, their Neuropathy, their Glaucoma. And each time Elly would talk about cannabis treating these conditions and WHY it works, I would see the tears. Try presenting without crying when you realize that what YOU say may or may not bring those people in front of you in tears the relief they deserve. It’s overwhelming.

As we tiredly climbed up the stadium seating stairs at the North Dakota Heritage Center we encountered a cameraman. He wanted an interview and I was thrown in front of the camera. I was, at first, very calm in presenting and he was obviously disappointed but careful about what he was about to say. So I stopped him before he had to say too much: You want more passion? He smiled. Ok. You got it. He smiled most of the entire time and then he had a look that said: damn.

Apparently it was a pretty good presentation and interview because the next morning there was ANOTHER editorial.  Elly and I thought: Excellent! Mary wasn’t so sure.

But back to the evening after the presentation. We had dinner with the good Doctor, Vinod, who it turns out, lost a daughter to cancer and had seizures. Much sadness. He also happened to live stream the presentation. Not sure if that’s a good thing or….We were also lucky enough to share dinner with Vinod’s lovely wife, Aruna, and Mary’s husband, Dave.  Dave, a train engineer, and now Dad was back in my mind, as if he is ever far from it. Aruna; magnetic and lovely. She carried the grief for her daughter and this cause so clearly in her heart and mind. It was heartfelt, warm and immensely enjoyable. There was actual, logical, amusing adult conversation that did not revolve around Aiden’s offer to defecate on your face. It was lovely. We ordered dinner and got to the talking, We talked about healthcare briefly (because Vinod said it was too serious and we needed to change the subject and promptly asked Dave about a cow), hitting cows with trains, epilepsy needing to be a separate category in IDEA and cannabis. Of course; cannabis.

There were a lot smiles amidst those tears, there was despair and there was hope. Most of all, there was understanding and support. By the end of dinner, we all had new friends on Facebook and more truly, sincere compassion and love then we walked in with.

And the world was one step away from aligned. It was Sinoli’s Garden that was the final tip.

We talked about chai in the morning with Vinod and Aruna and missed it by a few minutes…a definite rain check on that offer, perhaps I can add a couple of Glenn’s to the table.

While we did not have time to partake with the Seth’s, we did have time to visit the garden of their daughter on the vista overlooking the river. This garden, Sinoli’s Garden, was nothing short of one of the most spiritual places I have stood. It is the monument every Mother would raise to honor that part of her heart that was lost with the passing of her child, if she could.  This labor of love, this garden on the vista, Sinoli’s garden, invites children to play, parents to reflect, all with nature at the center. 
It pulls the heart to sit and stay awhile, to be still, to be active, to live a peaceful life to the fullest. Aruna’s hands lovingly placed each plant in that garden just as Vinod’s arms cradled their daughter as an infant and as woman not long for this world.  I imagine the tears as each plant was placed, the pauses to think about Sinoli and remember. It’s easy for me to envision their hands holding their daughter and working to preserve her memory, easy because I have felt that final moment with so many sunrises. That need to honor.


I looked at the swings and remembered when Bug would fit in them, when he would laugh and giggle and reach for me as the swing made its way back to where it started. I pictured him at his worst, not wanting to stand, not able to stand, and I saw all the children like him. I saw those empty swings and I wondered how many children who have never played in them could play in them if North Dakota voters passed Measure 5. It’s easy for me to see that in my mind because I have seen so many of my Utah families and others around the country get their children back. The joy those families feel, the ability to take their child to play on the swings, the amount of people with a new chance for their child to play would ensure those swings were never empty and that garden would be filled with laughter. The laughter Vinod and Aruna miss.

It was a very deeply moving experience.

I came home to squealing children and a smiling Bug. I came home to a wonderful man who took me to dinner before I jumped back into the fray that is the Maughansters. He asked me about all of it. I told very little. So we cuddled and we held hands and we were just the two of us for a bit. On the way home I told him more about the trip. He listened, he asked questions and he braced himself for the answer to his: what’s next?

Even though our collective new world is seemingly focused. I don’t know. I really don’t know. For North Dakota, I hope it’s the passing of Measure 5 and a new life for thousands of their people. For Utah, I hope they make good by my Dad and find a way to pass ONE of the FIVE bills that may be numbered and debated. I would like to help, but I am all but ineffectual now, so I wish them best and my offer to help stands. For us, in Maryland, I can’t help but think that the proximity to DC may make for a very interesting year. Regardless, following this new path, I will find more patience with my children, hold Bug whenever he wants and forget about me and change the world.


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When a horrible mistake makes for a wonderful moment

>> Tuesday, October 11, 2016


All of us, we make mistakes. Some of us make REALLY big mistakes. I made a big one. I know better but still...with the hundreds of seizures Bug has been enduring...mistakes become more likey and diligence is key. WRITE everything down and put dates on calendars. Of which: 'refill prescriptions' should be at the top.

It wasn't and I failed him. I failed with glorious outcomes.

I had been sick and others have been giving Bug his meds. They ask, I reaffirm, they show me and he gets them. What I DID not ask: How much is left?

So we were dangerously close to being out of Lamictal with a trip looming. I went to the pharmacy and they offered Lamotrigine.  Lamotrigine is like sugar pills to Bug, for whatever reason, it is nearly NON effective for seizure control but I took a few of them while we waited for the refill to come in and sure enough, the bad seizures got worse. So many of them. The worst seizure day of his life in fact: 50 small tonics.

So Glenn and I looked into our cabinet to see what other sodium-channel drugs we had that MAY help and we settled on Phenytoin.  Bug has been on Phenytoin before so I looked it up and found that he did well on it and it made is EEG pretty (as pretty as it has ever been in his life) but we chose to discontinue it when we found out about his Folate issue. The specialist told us it wasn't used in FRa treatment and could make it worse so....we got rid of it.

Turns out that was a HUGE mistake.

We gave him a small dose, to be careful, and the seizures spaced out a little more. So we looked up the dose for his CURRENT weight and we gave it to him. That night he only had 6 seizures and they were ALL in the morning. So we split the dose yesterday and it was VERY interesting. No seizures last night and only two while falling asleep today. While that is cool...it's other developments that are fascinating.

When Bug was a toddler, he would sit on Uncle Jason's lap and listen to music and scroll through songs until he found the one he liked. He would play them with his sister and I have proof (don't judge, he would NOT leave his clothes on):



When he lost that interest (or ability) we mourned. And then yesterday...

I was working on a blog post about North Dakota and he grabbed my laptop. I thought: He's going to move the laptop and then sit on my lap, which is his new normal procedure. Instead, he put it on his lap and started pushing keys. So I put music on. He did not scroll through it but he did stop and start the music. I woke up a sleeping Daddy so I had a witness.

He didn't stop there. Later, I gave him a bath. He loves baths and all things water so he was content. Usually he wiggles, splashes and drinks the water but this time he floated and rolled from one side to another, very little splashing. When I wash his hair he has ALWAYS and I mean ALWAYS, even as an infant, pulls away. He will bat ot my hands, duck his head down, or move it around to get me to stop. Last night, he fussed for a few seconds and then...sat there. I washed his hair, scrubbed it in fact, and he just...sat there.

This has never happened before. Ever. Not even when sick. So either we have a good combo of drugs in him now or something else has happened. Whatever it is, we will be waiting not-so-patiently as the clock ticks to see if that other shoe drops. Until then, we will enjoy what we can and hope it continues.

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ESES

>> Friday, September 30, 2016

Electrical Status Epilepticus of Sleep looks like this:






Hell of alot of seizures isn't it? All while asleep. The few hours of peace are when he is awake. The seizures tire him out so he sleeps a lot which causes more seizures. Viscous cycle. Lately, he has not been responding too well to rescue medications and we can speculate what that means but speculation does not lead to treatment. So while I wait for his appointment to be confirmed, I use the Quick Capture every 10 minutes and hope his oxygen stays stable. If it weren't, he would be in the ER, but in the ER they knock him out with phenobarbital and he is unconscious for days on end just to calm his brain down. With ESES...will it calm down while he is unconscious? Who knows really and it's a risk of more damage than good...remember when he almost died because of too much pheno? Ya, me too, let's not do that again.

So we patiently wait for this cycle to improve and if it doesn't....he goes to the ER. He has until tomorrow and then we hope for the best and turn him over to the Emergency Room and I mind my p's and q's to not strangle anyone for arguing about NO EEG and Ativan.

He's a tough kid but how tough? :(


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All about the timing

>> Thursday, September 29, 2016

Today this video came across my Facebook feed:

http://youtu.be/tmWfJR4KrDI

I began to tear up at her response, at his joy, and the school cheering for them both. Genuine. Touching. Love.

And then I began to think about Bug. I had just given him his SECOND dose of rescue medication in 12 hours and the tears went from 'how touching' to 'it will never be'.

The grief sets in again. With the renewed possibility of helping Bug, the seizures being OFF THE HOOK while he is asleep are even more difficult to deal with on an emotional and physical level.  He will get to visit Johns Hopkins and he will, hopefully, get the help he has been waiting for.

I have created a list of things to check for our little man. It reads:


ESES – Seizures almost exclusively sleep-dependent.
            FRa – Folate Reductase Autoantibody – Immunology
Ears – has not had a detailed MRI of his inner ear and with KBG syndrome it is of GREAT concern that a malformation was missed since he CAN hear.
Stomach – he needs a scope. With KBG he is more likely to have stomach issues and with the gagging episodes that started last year, they may or may not be attributed to the Epidiolex.
Teeth – Glenn has to be sedated for exams and since his broken jaw, he has not seen a Dentist.
Orthopedics – Glenn’s seizures may not be the sole cause of the tightness in his ankles but Botox was recommended in Utah. With KBG we also need to look at his hips and ribs.

Full body MRI?


I am reminded with each seizure that I have let him down so many times I can't begin to count. I can say: The Doctors should have...but it still comes down to me making it happen. So I will make it happen and maybe...this video could be of Bug smiling because a sweet girl asks HIM to dance. Odds are not good that will ever happen but...one has to try to make miracles and not just sit and wait for them to happen.

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Bad year...go away

>> Thursday, May 26, 2016

I haven't blogged for a very long time.

Because Dad died.

In December he came for Christmas, by January he had a cancer diagnosis and began chemo and was dead mid-March. Our world turned upside down. Again. I miss him more than I have ever missed anyone before. He was a great man. A great man that everyone knew but no one ever knew. That helped everyone yet no one helped him because he wouldn't ask. He was a quiet man with a loud voice, at times. And he loved his children, grandchildren and great grandchildren. My heart is broken still and while Dad was dying...

Bug got worse. He developed gagging episodes. We talked to his Doctor and suspected new seizure types but he eventually stopped responding to rescue meds. Rescue meds at triple the dose still did not work. It was a very rough time. So we had another option for the cause of the gagging and we decided to treat him with Zantac. It helped. Nearly immediately. And his nightly seizures seemed to stop. For almost a week we had no gagging and only four seizures.

Until today.

Today he had 4 seizures in 4 hours. And it made me miss my Dad even more. Bug is better now, seemingly happy and energetic, but for how long? I hate waiting for that show to drop.

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All In.

>> Friday, January 29, 2016

What do you do when you hear of an injustice?

Bug is doing well, he is happy and playful and not having more than 2 seizures in any given day and almost ALWAYS sleep dependant. No really big ugly tonic/clonics so we are pretty pleased. He also saw his new Doctor.

And I warned him about us, about how we are tenacious but do not require hand-holding, how we are always researching but also ruling out before we present an idea. He was cool with it and we were cool with him. We are working on getting Bug going with IVIg again, which makes me excited and sick at the same time. Bug gets so sick after the treatment but then he doesn't seize so is it worth it? We will see how that goes but we expect it to go well, even with the puking that may follow.

So what of this injustice?

In 2006 the Utah State Legislature passed SB8: Care of Students with Diabetes in School. It passed all committees unanimously and then both the Senate and the House. It is a smart bill, it is a good bill that was supported universally. We took this bill and changed Glucagon to Doctor-Prescribed Rescue Medication to ensure that students with epilepsy can now get blanket access to their medications no matter in what Utah District they reside.

And no one will touch it.

Now, we have other avenues we are using to ensure that the student with a Health Care Plan gets the medications they need, and we have great hope that will help, but there is ONE thing that makes me shake with anger.

The bill that is CURRENTLY sitting in rules that is a bad bill, is an admitted bad bill by its own sponsor. What do you do when you hear: I know it's not ADA compliant and there will be a lawsuit and it will cost millions of dollars and a decade of time but if that what has to happen then that's what has to happen. What do you do when you hear that the student with diabetes gets their medication but the student with epilepsy should 'wait for EMS to come because it's not like they know what is happening while they are seizing'? Yes, that is a DIRECT quote, darn near verbatim. Made by a 'professional' tasked with ensuring the safety of these children.  A 'professional' in a position to exert great pressure on anyone daring to support an effort to make this right, to stand in support of the ADA.

What do you do when you hear that YOUR child is NOT as important as the Doctor Group getting what they want finally at the expense of children? This same group supported SB8, and didn't support Charlee's Law. It seems they don't like children with epilepsy, that they have something against children having seizures being helped in a timely manner and receiving an education. There is no other conclusion to draw. If you have allergies or diabetes then we see and recognize your need but if you have epilepsy you will have to sue us to get the same services.

It's sickening and I won't take it anymore. I am giving my notice, I am ALL IN.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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