Love, perseverance and nuclear joy.

I have so many updates I don’t know where to start.

We have seen a slight bit of progression of NCL, but also, some improvements. This disease is the definition of confusion.

  • Doug had one mild seizure in the middle of the night two weeks ago. I woke up to it, and it only lasted about 20-30 seconds. When Doug came out of it, he was disoriented but it was also the middle of the night. He went back to sleep and it has not happened since. I do not know if that means Doug will have seizures or not.
  • There was a different night that he woke up at 2am and was immediately frantic and was up and down and pacing and circling and up and down and darting here and there and I was unable to calm him. I had no idea what was happening. I took him outside in case he had to go and that seemed to make it worse. There was snow on the ground and he just got more and more disoriented and I had to get a leash to get him back inside. Once inside, I turned the lights on and he seemed to settle a little. That is when I realized, he might not be able to see clearly. He stood there, panicked, tail tucked and I started crying. 3am is not the best time to get a schooled by Neuronal Ceroid Lipafucisinosis. I gave him a sedative, and he was able to fall asleep. The next day he was wobbly but, ok. Thankfully, it has not happened again.
  • There are some positives. Doug falls over less when he shakes his head now. This is because he has started adapting to what he is experiencing and has started widening his stance. It is hard to put into words how proud I am of him on this. This little victory, is huge.
  • His wild eye movements (there is a vet term but why use that) are not as bad, the neurologist agreed on that.
  • He had his first acupuncture session and the days that followed, Doug was like a puppy. Not that he isn’t usually like a puppy, but his movements were more fluid and he was more carefree.
  • We had a follow up with the neurologist. We have not seen her since he got diagnosed. I only had one question. What will are we facing? I still don’t know for sure. She said Doug might live with the disease well for a couple years or he could start to decline quickly and not be here come six months. That information was not new. She thought he looked great and she noticed his improvements. Then she said something to the effect of ‘We will have to see what progresses faster, the NCL or his spinal issues.
  • Wait, what? Hold up, come again on that last part.
  • She said that she had told me last time when we were there that he likely had a brain/spinal (connection?) issue and I thought that was one thing it could be and it was only one thing total so when we got the NCL news, that was the ONE THING. Apparently, she feels he also likely has Cervical Myelopathy. That I can pronounce because that is what Jake had and it’s what made his hind legs give out.

She said the words and I looked at her and said – OK. That’s it, OK.

I don’t have questions about Cervical Myelopathy, I lived it for 3 years with Jake. She may have talked more after that, but Doug and Jake’s mobility started flashing in my head in unison and overlaying them made me realize I had never seen it but it was right there. Doug has the same exact wonky gait and legs that Jake had when he first came here. They literally maneuver the same exact way. How did I miss this? I did worry about how he would face both, but the reality is, he may not live long enough for the CM to impact him as much.

It guts me to write that, but that doesn’t make it less true.

Doug and I had a lovely 3-day weekend. There were a few I-am-human-moments that I said – why him. Why dump on him. This isn’t fair. Why do we get the worst things.

But you know what. We don’t only get the worst things. We pretty much get all of the best things that life has to give too. I can’t scream out WHY US when I also don’t scream out HOLY SHIT WHY DID WE GET SO MUCH TO LOVE.

This life gave me Melvin. That alone negates me personally being able to ask, why me.

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And Melvin and I got to love Jake. And that was absolutely meant to be and we were there for him that morning his legs stopped working, exactly where we were supposed to be and yes, life could have gone easier on him, but he couldn’t have been loved any more than he was and I couldn’t be more grateful he was mine.

And then by some great miracle, Doug. A stray, with puncture wounds and two legs growing all wrong, who could have ended up in a backwoods dog fighting ring in SC. But someone decided to get him out of there and send him to DC. And I found him. And he saved me a billion times more than I saved him. He might have died an early death down there. But instead, he now only knows joy and love and food.  Melvin taught me how to love unconditionally. Jake taught me how to persevere with joy in my heart. And Doug has taught me to enjoy the ride. And my grateful heart turns those things into beautiful lives full of love for the boys. And yes, we have had a lot of terrible and a lot of heartache, but the amount of joy in our lives is infinite. Doug may have a shorter life than I had hoped, but he doesn’t know that. He thinks he’s been alive forever and life has always been incredible. He doesn’t remember his old life. He has a life where he can pack more nuclear joy into his few years on earth than people who live to be 110 are able to. And in return for him saving me, I will carry the grief. He can just focus on basking in the love. And eating all the food.

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All of this is very hard. I still cry a lot. But sometimes I cry because our lives are so beautiful and I’m so thankful for all that we have. We’ve already won this life, ten times over, and we are, as always, committed to joy.

Joy is who we are.

Also, don’t forget, I bought Jakie the large dog stroller, just in case, and now we have a just in case and can you even imagine how adorable Doug will be with his head sticking out of the top and all his sister wives riding shotgun?!

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xoxo,

t&d

 

Grateful Hearts.

I am so thankful for each and every one of you. Each time I have come here to celebrate the boys, you have cheered us on. Every time I have come here broken hearted, you have lifted us up.

To each of you that has commented, messaged, called, texted, and sent goodies. Thank you! You all have reached out to your vets and your rescue communities to try and help us and I am forever grateful. And thank you for raising the most wonderful minis!

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The Christmas after Melvin died I was going through the decorations and I had a bunch of stockings with his name on them. I vowed to never do stockings again so that I wouldn’t have to have a void where his should be. When Jake died and Doug came and Christmas followed, I felt fine about my decision. We are living proof that Christmas still occurs even if you don’t have stockings. But this year, with Doug’s health improving and Bob being here, I leapt into faith and got them matching stockings with their names on them. As I was undecorating this week, and it came to those stockings, there was a painful pause. I put them in the box and I prayed that my future self would be able to handle opening that box next year if Doug isn’t here.

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Doug’s disease was always going to be. In the same way he and I were written in the stars, so was this diagnosis. Doug and I are not the sum of what is coming. We are the sum of every second of every minute of every day that we have had. We were sent to each other, so neither of us would be alone. Don’t forget, he came to me during the darkest days of grief. I owe him a debt of love that is infinite.

In the time since Jake died, I have given a lot of thought to adopting another special needs dog. To be honest, up to now, I didn’t think I could do it again. Not so much the taking care of (that’s just love), but the void that is left when a special needs dog dies. There are still nights that I wake up to help Jake. I’m not sure when that will stop.

Turns out, Doug is that dog. And all of me is 100% ready and 100% terrified and 100% armed with joy and 100% heartbroken. All of those things can absolutely exist at once.

We had arranged to buy another cart for a Frenchie in Jake’s rescue. We were just waiting on them to place the order and give us the amount. The invoice came the evening I found out about Doug’s genetic test. Paying that bill, still brought joy. And Doug and I celebrated that a little frog dog named Dorey was about to start a beautiful new chapter. Sometimes, in darker moments, you have to be or see the joy in someone else’s life.

I am happy to report there have been no changes in Doug’s symptoms over the past two weeks! We have started seeing a new rehab specialist who wants to teach Doug how to live in an unbalanced world before the NCL hits him harder. And that means, we are back in rehab with his girlfriends! I am also setting up acupuncture and a nutritionist.  We have found one Am Staff that went through this, and our vets are working to learn all they can from that case.

Harem, check. Treats, check! IMG_9182

My wiggly warrior.

Zonked on the way home.

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Happy New Year!

xoxo

t&d

Neuronal Ceroid Lipofuscinosis.

It’s been a week and I still can’t pronounce it.

I continue to look for someone who has been through this disease with their dog. If I can’t find one person among any breed, I’m not sure how I will find someone with an Am Staff.

My emotions range from heartache that this is happening, to moments of rage that this is happening.

As I have mentioned, Doug has always been clumsy. His hind legs may be bionic but apparently for Doug, bionic = mediocre. He has never been able to stop himself when he is running too fast inside the house, just ask the 50 things he runs into daily. Going down the steps in the morning he goes three at a time and going up in the evening, is very, very slow.  That has pretty much been him since the day I got him, before and after the leg surgeries.

So a few months ago, I just thought he was more clumsy. It was cooler, maybe his arthritis was acting up . There were a few times early on, that he tipped over, but since I couldn’t anticipate it happening, I never really saw what preceded it. I thought he tripped, or turned a leg the wrong way and it gave out. The first time he fell off the couch, he was sleeping. So when it happened again the same day when he was awake, I thought nothing of it. We all have those days.

At no time did I think that he was dying. Because I had talked myself out of thinking that way the first year with him. I would say: it won’t be like Melvin. It won’t be like Jake. Have faith.

As he started falling off the couch more, and stumbling for reasons I couldn’t figure out, I knew it was something, but I still was leaning towards his legs. But then one day, I was taking a video of him for Instagram and during the time I was taking it, he shook (as all dogs do many times a day), and that’s when I saw it. I stopped recording and pulled up the clip to see if I had imagined it. Something was wrong, and it was not his legs.

This is the video clip I took that day. He shakes, and immediately after, his eyes roll back into his head. A wave of motion then runs through his body and you can see him falter a little.

I may not know for certain when his symptoms started, but I know the exact moment I knew it wasn’t nothing.

The following are Doug’s current symptoms:

  • He shakes about 20 times a day and his eyes roll back into his head about 15 of those times. Sometimes he falls over, sometimes not. That has not changed much since I first noticed it. This is by far the hardest part to watch at this point. There is a part of me that wants to look away, but I owe it to him to watch every single one and count them out for our documentation.
  • He is wobbly on softer surfaces.
  • He stumbles sometimes when he is going faster than a normal walk pace.
  • I can tell when he is having dizzier days than others. On those days he is a little out of it. He tends to stay close to me those days. He also stares into my soul on those days and I know he knows I know. I stay close to him too.
  • There have been two shakes to date that I have seen where he froze for about 3 seconds after it ended. I don’t think he could move for those few seconds, but then he was fine.
  • He has had 2-3 bad days. When he can’t walk in straight line, more like he’s in a fun house. I mean our house is fun, but…
  • He is on a few new supplements (CoQ10 and Super B Complex) to maybe help. He is also on a motion sickness drug. I have been giving it to him in the morning but I am going to move it to dinner because he wakes up dizzy and I think it might wear off during the night.

Our vet has not had much luck digging anything up but she did find one piece of research that suggested Am Staffs were not as likely to go blind. I don’t know if that is true or not, but I’m holding onto it pretty tightly.

While we were waiting on the test results this past month, a little voice kept whispering what if you lose Doug too? I almost talked myself out of doing Christmas cards because of that stupid voice. I didn’t want to do them if I knew it was going to be his last Christmas. So we held the fastest Christmas photo shoot ever known to Santa. I took the photos, edited them, and ordered the card within 1/2 hour. I found out his diagnosis two days later. The cards came this weekend and I’m really F’ing happy we did it. I think this journey is going to be a lot like those cards. Less thinking, more doing.

When joy calls, we gotta answer.

xoxo,

t&d

 

This is us.

I have been staring at this blank page for hours, unsure of how to begin. My brain is not able to put this into some order that makes sense, so I am just going to give you info as it pops into my thoughts.

  • We had to postpone Doug’s endoscopy because Doug was having dizzy spells and falling over when standing. He was also falling off furniture (in a world where he had never fallen off furniture before; it is why I bought the new couch). Also, when he shakes his head, his eyes started rolling back into his head and I was able to catch it on video. Our regular vet felt we needed to see the neurologist over having the scope done.
  • The neurologist confirmed that Doug had deficits. I went in thinking it was likely inner ear. They put that pretty low on the list of things they thought it was. She was very clear that she thought it was serious. Four of the five things she thought it could be (brain tumor, malformed brainstem/spinal cord connection, too much spinal fluid or a brain that was too large for his skull), would be able to be seen on two different MRIs and a spinal tap. We had fasted that day just in case, and none of those test are new to me. Melvin had one MRI and spinal tap; Jake had two. At no point during this conversation did I flinch. We would figure it out.
  • She then told me that there was one other thing it could be. A brain disease where the brain stops controlling the dogs body. The first sings are unsteadiness, stumbling, dizziness, uncoordinated eye movements. She said, it was the worst possible diagnosis since it was 100% fatal. All the air left the room. What about it just being an inner ear issue?! She said there  was a genetic blood test that took 2-4 weeks to get back. If the test came back positive, we would not need to do the MRI or Spinal Tap. I agreed to have the test to rule it out.
  • I waited 26 days for the results. Everyday, watching Doug not getting better on antibiotics and accepting the fact, it was not an inner ear issue.

When Melvin died a month after his 10th birthday, I was heartbroken in a million different ways, one of which was that I would never know old-man-Melvin. When Doug came, I knew the universe was giving me a dog I would have the longest and that even though Melvin didn’t grow old with me, I would get to see what Grandpa Doug was all about. When Jake died, I knew that I would likely never care for a living creature to the extent that I did with him. And that, it was unlikely another of my dogs would go through as much as Jake did. Jake would always be my baby. I also assumed that my heartache with the dogs, had reached a lifetime max.

I was wrong, about a lot of things.

Doug has a fatal, neurodegenerative disease called Neuronal Ceroid Lipofuscionosis (NCL). It turns out I won’t get to know Grandpa Doug after all, the weight of even typing that, suffocates me.

I got the results yesterday.

  • Heartache is the bulk of what I feel. Not just the realization that I will lose Doug, but much more so the fact that Doug won’t have the opportunity to be showered with love for many more years to come.
  • This disease is very rare. Mostly because breeders test for the mutation before breeding since it is so terrible. I feel actual rage that Doug was likely born to some backyard breeder that didn’t give a shit.
  • It being rare leaves me with a ton of unanswered questions. The symptoms are breed specific and there has not been enough Am Staffs reported to have it for me to have much insight into what to expect and when. The neurologist office has seen one other case, our vet has never seen it.
  • Every dog, regardless of breed is different. Some dogs decline more slowly, some decline rapidly. Right now, we are throwing out about a year. Give or take, whatever terrible version of math that is.
  • All I really know is that it usually strikes Am Staff’s between ages 3-5. Doug is 4. Doug’s brain has already started communicating less with his body, and that will continue. I don’t even know when it started because his hind leg issues have always made him clumsy. He might go blind, he might not. He might not recognize things that should be familiar. It might be painful, it might not cause any pain. Some dogs have seizures. Obviously he is going to be confused as to what is happening to him. The given is that, eventually, his brain will cut ties with his body and mobility.  So sometime between today and the day before joy no longer reigns supreme, I will have to say goodbye to my boy.

I will find a way for Doug and I to make a difference. I already plan to write down every symptom, every day. I will take video of his decline. One day, we can help someone else as they journey towards this horrible fate; they will at least have one person who says ‘I understand and here is what I know’. This is one of a million ways that Doug love, will live on. If any of you know any dogs who have had this, especially if they are an Am Staff, PLEASE let me know.

The other way he and I will make a difference, is that we will continue to find the joy in every day we have left together.

There are a few things giving me strength. My family and friends. Melvin, as always, is with me. And I know that when Doug is no longer here, Melvin will be there with him. And Jakie too. When I heard the results, the first thing that I realized was, I don’t have to change a thing to give Doug a beautiful forever. Live a life where if you find out someone is dying, you can rest easier knowing, you are already giving them the very best of who you are. 

Lastly, and way more importantly, life is not meant to be measured in length. A long life is never the given. Instead, it is to be measured in width and depth. Doug’s life is infinitely wide and wildly full of joy, and I will never allow for anything but that for him.

xoxo

t&d IMG_7459