A Touch of Masochism

The last two weeks have been fantastic! For the most part we have learned how to stagger his medicines to cover the whole day and he's been having 2-3 days a week totally seizure free! Though we haven't been able to get two of those in a row, but we'll keep trying!

He's been pretty active, improving in head control, passed his last swallow study with flying colors, and overall he's been very expressive if not always happy. He's got two teeth finally! Maybe that's why he hasn't always been in the best of moods.

The only annoying thing is he is on a weird schedule. He likes to stay up until like one or two in the morning and sleep in 'til noon. So really, it's just the normal Payne family schedule. But the problem is Kyle hates that schedule (he's not so good at the sleeping in part so staying up late all the time is hard), and I am on the teacher schedule, which (while contrary to my nature) is what I have to be on for the moment. (Can't wait 'til summer!) And we've learned that trying to mess with the schedule just seems to cause more seizures, which in turn throws Cyrus onto a new wacky schedule. We like this one in that, he's been seizure low, if not exactly seizure free.

Today though, has been a bit of an emotional day, but really I only have myself to blame.

Cyrus started it by having just an awful day yesterday. We had to wake him up super early for a therapy appointment and this seemed to throw him off completely (See! You can't mess with the schedule!). He had more seizures, and even though none of them seemed severe, he was just so completely out of it all day, which just hasn't happened in the past few weeks. I think the bad days just hit me that much harder when we haven't had one in awhile.

Then this morning he woke up early all by himself demanding food, which he promptly threw up. A huge amount of it too. These events always make me anxious as I know that they will eventually become far more frequent as Cyrus's disorder progresses. So whenever he throws up, I'm always nervous that it's starting to get worse. I especially hate it when it comes out his nose because it makes him totally congested and I have to spend time clearing it out, which he hates! Though I think he prefers being able to breathe.

But I also have to remind myself that kids just throw up sometimes. And Cyrus has always done so a little more often.

Then just when calming down, I made that anxiety far worse by writing a death scene of an epileptic child in one of my unpublished stories. Seriously, why would I do that?! Masochist anyone? But let me tell you it is an awesome scene. Almost beautiful in a morbid sense. Definitely very real and very human, which is my favorite kind of writing. And in general, if the writing is flowing you don't fight it! You let it flow!

After writing this scene, I found myself in need of some research to flesh out some of what came right before in the story, so I went looking for the ADSL personal accounts from parents and starting reading those. These always throws me into a weird mental and emotional funk, but at the same time I find them reassuring as their experience can answer questions about day to day living that doctors can't because this disorder is so rare that they've never had another case.

So rare that I could only find four blogs - three of which are no longer active, and another that doesn't really focus on the child as it was written by the grandparents.

So I decided that I wanted to contribute to this tiny community by sharing our experience. I already have written about it a lot through gofundme and Facebook and I have no reason to believe I will stop. It was just a matter of bringing all of those pieces into one place. And blogger even lets me backdate posts so I can add everything I've written since June. Plus it'll be nice to have a place where I can go back and look at everything as well.

Hence this blog! The Light of My Life title refers to both my husband and son. My wedding vow in 2009 was "You are the light of my life, and I must always look to that light." And when picking out names for our children all of them had a meaning that related to the Sun or to light. In general, pictures of the sun (both photographic and drawn) make me think of Cyrus when I'm not with him.

Hopefully, if you're reading this, it has something to offer you.

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Cyrus Lee Brown - A Light In My Life

Cyrus Lee Brown arrived on February 15th, 2015. I know that not all mothers experience that instant connection with their newborn child, but I did. The second Cyrus uttered his first cries, my heart just about melted. I have never been so excited or grateful to meet anyone in my life! 

We chose the name Cyrus because it means Sun as in Sunlight! We just knew Cyrus would be a source of light in our lives. 

When he was four months old, Cyrus began manifesting a rare type of seizure, that are referred to as Infantile Spasms. He was having dozens of these seizures a day. We were lucky enough to be living near Stanford, and Cyrus was taken to Lucille Packard's Children's Hospital. Because this is a gargantuan teaching hospital, they ran every test imaginable from genetic tests, lumbar punctures, blood tests, EEGs, and MRIs, and were able to diagnose him within a month! He has a freakishly rare disorder called Adenylosuccinate Lyase Deficiency (ADSL). By freakishly rare, I mean that there have been less than 100 cases worldwide since 1989 when the disorder was identified. We're like number 10 or something in the United States. Genetically, the disorder is believed to have originated from Belgium. 

ADSL is a metabolic disorder that is caused by having the incorrect genetic recipe for Adenylosuccinate Lyase, which is an enzyme that is used to make a purine nucleotide called Adenosine. Adenosine is used in DNA replication, transcription, and to make cellular energy in the form of Adenosine Triphosphate (ATP). Needless to say, it's important and it will affect him severely both intellectually and physically. This metabolic disorder that is so complicated and so rare, that it is not well understood even by neurologists or metabolic geneticists (honestly, his care team had never heard of it until Cyrus's genetic test came back positive). There are several theories as to what specific mechanisms in his metabolic pathways causes the developmental delays and epilepsy, but the research is far from well defined or certain. And though several experimental treatments have been tried, there's been little in the way of success in treating the underlying metabolic dysfunction. 

His prognosis is unclear as he is presenting on a different timeline than any other documented cases. He has presented with seizures later than those have have the severe version of the disorder, and unfortunately far earlier than those who have the moderate version. We have been warned that he is unlikely to learn to talk or to learn to walk, and that his life expectancy is significantly diminished. 

Initially, I felt incredibly guilty and responsible. And then angry and devastated. But at the end of the day, I really didn't want to spend our time grieving something that has yet to happen. Instead we want to treasure each moment and Cyrus has definitely taught me to slow down and be more present. To let the other stressors and daily irritations roll off my shoulders. And to be joyful and grateful in the the tiniest of moments. He has made me a far better person and is definitely living up to his name. 

Birthday Party!

Cyrus had his first birthday party yesterday (two weeks after his birthday, but it was the soonest mom and dad could pull it off!) in the park. He was even awake for most of it! He is quite the popular little guy with lots of little friends that chased bubbles in circles around him and ate lots of delicious cheesecake with him! He sure is lucky to have so many people that care about him in his life! 

And last weekend he took his first ever vacation to Monterey for a spiritualretreat with mom and dad and got to make lots of friends and listen to awesome music!

He's been doing fabulously well these last two weeks. He's on a new medicine that seems to have brought back his expressions and emotions (as well as reduced the seizures)! He has started smiling again this week, making more cute little noises, and glaring at us whenever we make him sit in the tumble form chair for too long! His physical, occupational, and visual therapists have all three been thrilled at what they've been able to get out of him this week. 

So good news all around! Thanks all for the love!

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Happy Birthday Cyrus!

He's like a baby bird! His head will just swivel back and forth looking for more! For his birthday dinner, we gave Cyrus some tilapia, which was both one of his first solid foods AND has continued to be one of his favorites. Tonight he ate a whole full sized piece!! I was amazed! 

Then there was the white chocolate raspberry cheesecake! You could tell he was excited because he kept making the suck/kissy sound in-between bites telling us he was eager for the next bite. Definitely loved dinner AND his birthday cake. Yay!

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The Second Year of Life begins tomorrow!

Playing on the swings on our last day of being less than a year old! Don't know why the day before his birthday feels significant, but it does... Maybe because I still remember being in labor today last year so excited to meet this little guy! Or maybe because it's been a really really long year with lots of unexpected twists and turns, but at the same time, it feels like it's gone by so incredibly fast. 

They say kids grow up so fast, and it's become one of those weird phrases that I've become rather sensitive to. Not that people should stop saying it or anything, it just makes me super aware of how different our reality is. Because Cyrus isn't really growing up. He's growing in that he's getting bigger. But developmentally, he hasn't changed. He's in the same place he was in September after the status event. And he's lost some things, so maybe he's even gone backwards a little.

In a strange sense today, is like the Eve of the New Year. Today is day 365 of life! And we get to reflect on and acknowledge the everything that Cyrus has brought to our lives.

I can't say that there hasn't been pain and sadness. There has been. The last four weeks in particular have been difficult as Cyrus has had more break through seizures and has become less and less expressive and responsive. I definitely cry more often than I ever have before. 

But he also inspires me to slow down and be present, to notice flowers and birds and sunrises, to sing more often, to just enjoy cuddling on the couch and walks along the trail. Because the truth is, I totally laugh and smile more often too! 

Tomorrow is the beginning of a new year! Arriving at this milestone feels incredibly significant. First, it's one that cannot be taken away by a seizure, and second, the nature of Cyrus' disorder is that, like everything else, it is unfortunately not a given. And somehow the victory is far far sweeter when the outcome is in doubt.

Happy Birthday's Eve to the sweetest cuddle bug anyone could have for son! 

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The birthday party is in San Mateo Central Park on Feb 28th. Let me know if you'd like an invite if you'd like to come celebrate with us!

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Holiday Travels

Cyrus handled the long two and three hours drives to visit various sets of grandparents and aunts and cousins like a champ! Meaning, he very strategically slept through most of them! And he seemed to love the visiting itself. In new places, he seemed more energetic and active than we've seen him be in weeks! With lots of flailing, more cooing, and just being more responsive in general! I very much think that the new places and faces were incredibly helpful and stimulating and maybe serves as motivation for us to take him out more to visit others rather than having others come to see us all the time (though that's admittedly easier).

It was also super useful to watch some moms who have gotten to experience playing with actually responsive infants to get new ideas for how to play with him! He didn't sleep quite as well on the trip, but who does when you can't sleep in your own bed.

And once he came home he had one of the most successful visual therapy sessions yet! He was holding his head up, playing with toys, and adjusting to changes in position well. And after his therapist left I realized that he does way better in the supported sit when I prop him up in the chair as he didn't even try to arch his head back for a good 5-7 minutes or so.

Yesterday, was a little harder. Cyrus had six seizures total, two of which were stronger than the ones we've been seeing lately that left him somewhat out of it for the rest of the day. And three happened in the evening relatively close together, requiring a dose of emergency medicine. Though giving it to him made me realize that I couldn't remember the last time we had to do so! I had to go back and check, and it's apparently been almost four weeks!!! 

Today, he's been really sleepy - and hasn't really been awake for more than two hours in a row all day, but he's waking up for all the meals, and is much more aware and responsive when he is awake than he was yesterday.

The last two days have been rough, but I wonder if they would've been considered that without the preceding absolute fantastic week prior!

Off the Schedule

Cyrus is currently going down on one of his anti seizure medicines and has managed to maintain his low seizure count with only 2/3 meds at full dose. Our hope is to completely eliminate it by the end of this month. This has been helping him to be more alert when he is awake and is helping to increase his appetite!! So he can hopefully gain more weight! 

We have received a tumble form chair on loan that will hopefully help with his posture and ability to sit upright. We get to keep it until he grows out of it! 

I made the mistake of letting Cyrus get off the schedule during Thanksgiving break and he seems to be responding to our attempts to get him back on the schedule by becoming totally nocturnal! Which is driving us crazy! But in general things seem to be going well. Excited for getting to spend another few weeks together over winter break!