An Ode to Medical Professionals

There are so many people who have taken care of me in the last few years of my life. Friends and family definitely, but today I want to talk about a more specific group of people: Medical Professionals. And I mean like all of them!

This group of people has seen me at my absolute worst multiple times in my life. The very first day I met my new OBGYN after discovering I was pregnant for the first time, the first news she had to give me was that I had blighted ovum - that my pregnancy wasn't viable. That was not news that I expected or wanted. And she was some perfect combination of warm patient compassion and calm serious professional as she explained my care options moving forward.

And when that same pregnancy failed to result in a miscarriage on its own, I had to get a D&C. I remember there was this nurse who managed my care after the procedure. How I cried to her about how I wanted this baby that had never existed. And I remember feeling so awkward that I was spilling my feelings to this complete stranger and she listened and empathized as if it was the most natural thing in the world.

When I went to the hospital, finally in labor, I was lucky enough to get a nurse who was a former doula! She coached me so excellently through transition, and I remember feeling so lucky. In fact, all the labor and delivery nurses were fantastic! Over the course of the first day, it was so easy to make mental notes of their names and all the individual things I appreciated about them. They were so different from one another. I had planned to make thank you cards for all of them.

By day three, I realized I needed to starting writing names down as we had already had seven or eight different nurses taking care of us, and three different On-Call OBs each night. And after a C-section, we were going to be there for another four days, and there was a whole other fleet of nurses and pediatricians, not to mention all their assistants!

By the end, being overwhelmed with recovering form surgery, and learning to take care of a newborn baby I never did write any of those thank you cards.

Since then, we have had unfortunate cause to become familiar with the staff at Lucille Packard's Emergency Room, PICU, NICU, Radiology, and Imaging Diagnostic Departments! And at this point I don't know how many doctors, nurses, assistants, EEG techs, social workers, and orderlies, (not to mention all the people doing work behind the scenes that I never directly interacted with) that have been involved in Cyrus's care over the years. I certainly don't remember hardly any of their names, and honestly would not recognize most of their faces.

There was even one occasion, where the sister of a friend, greeted Cyrus by name at a social gathering. And I was taken aback, thinking we had never met this woman. But it turns out she had indeed met Cyrus! She was a nurse that had taken care of him when he was recovering from anesthesia after one of his MRIs! And she remembered him because she loved his name!

Needless to say, I am profoundly grateful for this group of people! They have coached me through so much from surviving miscarriages to changing diapers as quickly as possible to tricking infants into swallowing medicine they don't want. They have placed and flushed IVs and reset alarms when Cyrus had pulled out his O2 sensor more times than I can count. Even when I didn't have the best rapport with some of these nurses and doctors, I always appreciated them.

It is winter again, and Cyrus has been ill for the last week or so (but seizure free during this time!!). And despite not making it to any of his therapy sessions or to school, he's had a fairly eventful week. On Monday, we visited his neurologist to discuss his pharmacology treatment, which was followed by lab work to test his medication levels and his liver function because one of his medications is known for causing issues in this area. He was mostly fine this day - definitely congested, but awake, alert, complaining about teething - all the normal unhappy Cyrus bits.

But as the week progressed, he kept sleeping more and eating less. He has had reoccuring fevers in the late morning and afternoon (but still no seizures!), and a somewhat low body temperature (96 F) at night. On Thursday he had only eaten 3 oz of food (he normally has about 40 oz a day), and was boasting a fever of 102. Kyle took him to the pediatrician's where he learned Cyrus's lungs and ears were both clear - that Cyrus was most likely fighting off some kind of viral infection.

On Friday, he hadn't eaten anything. In fact, he wasn't waking up at all. Even when we tried to wake him up, he wouldn't do more than slit his eyes open, crumple his face in objection (crying with no sound), before falling right back to sleep!

Seeing as Cyrus struggles to drink thin liquids unless we give them to him with an oral syringe, he gets most of his fluids through his pureed food. And when he's not eating, I get worried about dehydration. So when I got home and discovered he hadn't wet a diaper all day, I pestered him - gave him four ounces of pedialyte (rehydration solution) 10 mLs at a time.

He showed his appreciation by throwing it all up on both of us fifteen minutes later. Liquid vomit is the worst. It just soaks through everything instantly and is just unpleasantly warm and still a bit slimy. We took a bath together, which he tried to sleep through.

While he slept I looked up dehydration - when to worry and what to do - that kind of thing. I learned that when someone is dehydrated you have to give them fluids slowly. If you do it too fast you just make them throw up!

Oops.

Well, no worries, we can go slow next time. Give ten mLs, then wait ten minutes before giving more. We gave him his 40 mLs of his usual meds over the course of thirty minutes. He wasn't a fan, but it got done.

Until it all came back up a few minutes later, followed by a lot of dry heaving. It being the Friday before Christmas it felt prudent to try to get him checked out before the holiday weekend. We tried to call the pediatrician's office again, which was still technically open, but they didn't answer and we hadn't made it to the "On-Call" schedule yet. So, we drove him over to the local urgent care to see if they thought we should take him into the ER, only to find they were closed due to holiday hours.

Luckily, I have friends with more than a bit of medical expertise who were able to offer advice.

We did end up going to the Emergency Room. And I must say, as far as hospital visits are concerned, this was one of our most pleasant! It probably helps to be familiar with the system and process, and that for once we were coming in with something that is far more typical, rather than rare beyond understanding. But it also helps to have an excellent care team.

Our nurse was warm and friendly - I imagine she is excellent at putting a nervous family at ease. As she was placing topical numbing gel and heating pads all over Cyrus's vein sites (such luxury!), she asked if he had ever had an IV before. I couldn't help but laugh at that question.

Yes, so many IVs, and once even an IO (when they can't place an IV as fast as they need to and so they just drill a hole into your bone), and never before with any numbing preparation. And boy did she know her way around a needle! She was quick and efficient with the tourniquet (the only part Cyrus actually complains about) and she had that IV placed so quickly and so cleanly even with his tiny butterfly veins. Really, every time she came to check up on us, she made a stressful evening far more pleasant.

And our resident physician simply inspired confidence. He first commented that he had read Cyrus's chart, he admitted he was unfamiliar with ADSL (but he said it out loud before I did) showing immediately that he was transparent. I assured him that no one else on the planet had heard of it either. Throughout the visit, he patiently heard us out, asked appropriate follow up questions, explained what was happening with Cyrus and our treatment options, and what we were looking for in response to said treatments. He was very open about what he was thinking and treated us like collaborators in Cyrus's care, which I always appreciate.

I learned from him that children have less reserve water on hand in their bodies than adults so it is easier for them to get dehydrated. And that once they are dehydrated, it causes nausea and vomiting, so it becomes difficult to get them rehydrated without intervention (anti-nausea meds help or an IV does wonders!). He was very friendly and was probably the source of the only time I laughed the whole evening.

Dehydration is scary. Your child just becomes completely lethargic and listless - almost completely non responsive! But it is amazing how quickly they perk up once you get those fluids into them. We were only there for a total of five hours! That's our shortest hospital stay ever!

Awake and irritated!!

Today, Cyrus still has been tired, but he has kept down a whopping 28 ounces of food, taken his pedialyte and his medicine both, had two three hour windows of wakefulness and activity, and has had five wet diapers! He's once again also complaining about teething. So we're not quite back to his normal self, but we're moving in that direction once again.

This is probably not how I would have chosen to spend my first day of vacation, but it also went better than I honestly was anticipating at seven pm when we made the decision to go to the hospital.

At the end of the day, I'm writing this to say thank you to all the medical people who have watched out for us over the last three plus years that we've needed it constantly! I may not always say it when we're there because if we're there, I'm probably really tired and stressed, but I promise I'm gushing about you when we get home to anyone who will listen! And I'm truly grateful you have chosen the profession you have because you have literally helped save my son's life on more than one occasion. Thank you!

Happy Holidays everyone!!

...

General Update: 
We've had a few fun developments in the last few weeks.

First, Cyrus is cutting the center of his last two molars - the four pointy corners are all through!! The dentist said three weeks ago, that his last two teeth would probably be completely erupted within a month. So we might be done with teething in just a week or two! We're going to celebrate this day!!

His head control has gotten to be a lot more stable with far less wobbling. He's gotten to the point where I can prop his elbows up on his knees when he's sitting with crossed legs, and he won't immediately fall forward, and pretty much now never falls to the side.

Cyrus also received his first haircut courtesy of the San Mateo Zoo Barbershop who was giving away free haircuts to special needs kids a weekend or two ago. Pictures below show before, during, and after the cut. His hair hasn't been matted all week! This means he's happier with me for not having to work out the knots.

His seizure control has been all over the map. November was awesome if you will recall, but quickly turned into three status events in one week - the first week of December was only slightly better. But we went up on a med again, and the duration of his seizures has cut in half.

We had some lab work done on Monday to check Cyrus's medication levels, and to check out his liver function. We have found that he has macrocytosis (enlarged red blood cells), which is a potential side effect of one of his meds - depakote. He's luckily not anemic yet, but this is not ideal, so we're going to probably wean this med. In the meantime, we went up on Sabril again and we've not had a seizure since! Though he's also been sleeping a ridiculous amount this week, which always helps to reduce seizures, even with a few fevers, he's remained seizure free this week!

We're excited that he's doing well enough that we will be able to continue with our Christmas plans, even if we're leaving a day or two later. We still get to see all the grandparents, aunts, uncles, and cousins even if not all at the same time. We hope that you too, are spending some time with the ones you love!

Finding Allies in the Unlikeliest Places

  

Being a parent during the age of the internet is both a blessing and a curse. Any tiny little thing that you are uncertain about you can look up, and discover whether or not the event is worth any anxiety or stress. Of course, you have to wade through the strong judgmental and often completely contradictory opinions on pretty much any topic from sleeping to how to teach and instill your values. And there's also the possibility that you'll learn that everything you're doing is wrong, and you'll just add layers to your feelings of inadequacy or anxiety.

It's definitely not for the faint of heart.

Being a special needs parent of a child with a rare disorder during the age of the internet though, is some kind of a godsend. Through Facebook we have been able to connect with over a dozen (maybe almost up to two dozen now) other families that have the same disorder! And lately, through outreach and research we have made contact with a large influx in the last few months, many of whom are further along on this journey than Cyrus or myself.

I've been learning about charities to fund equipment such as vans or safe beds and gadgets such as neck rings that would help Cyrus be more mobile if only when he's in the water! (We've actually never tried to take him swimming since he's not a fan of baths. But if he's able to move freely he might love it!! I wish it was warmer at the moment so we could go try). We hear about difficulties other families are experiencing, and others chime in about how they addressed those issues when they experienced them, and I feel just a little more prepared for some challenges our future may hold.

But the internet also lets you make friends and contacts in the most random of places.

If you know me personally, you probably know that I spend an inordinate amount of time reading and writing fan fiction. It may be blasphemous to say so, but I've gotten to the point almost where I enjoy the fandom world more than reading actual published novels. One of the reasons for this is that I often get to interact with the authors! I sometimes will leave a comment or a review to an unfinished story, and sometimes the story will change! Or we get to talking about my interpretation of characters with others who are just as obsessed with them as I am! You make a lot of friends, and sometimes you even start to talk about other things outside of fan fiction.

Last spring I started reading this Sailor Moon story (Please note, if you decide to read it that it is rated M, for Mature). Honestly, it's a fantastic piece of writing. This woman, who goes by FloraOne. portrays beautifully real and healthy and messy human relationships. And the sequel is even better! But that's not what this post is about. The point is after reviewing some of her work, she realized I had some physics expertise and she asked me for some help making the science in her story "believable". And I learned that she was a psychologist, and I started asking her for advice in better understanding the mental state of a character after I had tortured him a bit with a traumatic past. And after that, we became friends. She even made me fan art for one of my little tiny stories! We still talked about fan fiction and Sailor Moon more than anything, but personal tidbits would slip in on occasion.

At one point, I happened to mention that I was really stressed and excited about our trip to Minnesota. She didn't respond for awhile (life is busy), but when she finally did she mentioned that she hoped the trip had gone well. Being overwhelmed myself, I didn't say much in response. I just sent her the link to my post about our trip, mostly to share our family pictures.

But of course she read the whole post, and apparently explored further to learn about Cyrus and all the rare pieces that make up ADSL. And then she sent me this note telling me that she just happens to currently be taking a neurology/genetics elective at Berlin's Charité, which is apparently Europe's biggest and oldest medicat school. This is part of what she send to me:

"My neurology professor is this really dedicated researcher, and he finds every new input terribly interesting. The course I'm taking there is basically a 101 so we start with the basics, but this of course includes how our DNA works, and what it does for us, and which all is involved. And that's what we did in my evening class last night. On the slides, he always likes to list disorders that ensue from malfunctioning gears in that machinery. Needless to say, Adenylosuccinate Lyase Deficiency wasn't on it, and when I went to him after class and told him about this, he'd never heard of it." 

"Anyway, I told him to check it out, and he emailed me this morning, saying he found it most interesting and he will be sure to include it in this particular lecture from now on, at least on that list of rare diseases. So, maybe it will give you a little bit relief to know that from now on there will be at least one power point in Germany that at least mentions the disorder to future medical doctors and researchers."

Needless to say, I was completely floored. Or perhaps balling is more like it because this woman who I have never met in person is out there on the other side of the world from me advocating for my son without ever being asked. Someone I only even interacted with at all because we both share an obsession with writing for fun, portraying healthy relationships, and Sailor Moon!

I find myself incredibly grateful that I stumbled onto this story, and incredibly grateful to have made this friend. And I feel inspired to live up to her example by trying to be open to becoming that same advocate for all the people in my life that might need it in perhaps unexpected ways.

Thank you again FloraOne. I don't know how to say it enough.

This little guy wants to say thank you too!

General Update: 
If I don't count this last week, November was pretty good to us. We got to visit Cyrus's cousins over Veterans' Day weekend, where we all did get sick. So Cyrus missed a lot of class, but he was surprisingly chipper through most of it! Giggle fits and talkative moments are somehow even more hilarious when he's all hoarse and congested. A friend of mine said he sounded like a wookie!

We attended our transition IEP meeting, where we learned all the assessment the little guy is going to go through over the next few months. As an educator I am beyond curious how they assess a child like Cyrus (I know some of it will just come from interviewing Kyle and and I, but still!!). I really do hope to be able to sit in on some of these assessments to see what I can learn!

He's growing so much that he is needing a new pair of shoes, which almost seems silly because he uses them so rarely, that the old pair still almost seem like new! So we donated them to his baby cousin. His wheelchair and stander both needed to be adjusted to accommodate his new height, and I'm feeling just a little pressure to again start working on the complicated hoop multi-jump that is getting aid for a wheelchair accessible van.

And to top it all off, he was completely seizure free from Nov 2nd to Nov 24th. That's twenty-two days!!! That's our longest record in almost two years!!

Sadly, it didn't last, and this week has been rough. Though his cold seemed to be mostly resolved, he has a cough that lingers, which has been causing spitting up episodes and interrupted sleep. Our seizure free streak broke with increasingly awful seizures three days in a row culminating in two status events this week: a six minute and a nine minute seizure. Both of these happened at school with teachers that had never witnessed status events. School nurses were involved, which was a new experience for us. But in both instances, we took him home and he slept it off with four hour naps.

The good news though is that we're back up to one day seizure free! Cyrus is clearly hatching some evil plans to break our 2017 record before the year is up!

A Spiritual Experience

Kyle and I used to attend Eckankar Seminars fairly regularly in October in Minnesota to celebrate the spiritual new year, which is October 22. I describe the event as a spiritual retreat and I have always found them to be immensely powerful. We hadn't been to one since 2012 for a multitude of reasons. But this year everything seemed to line up. With my new job we could afford to go, I stumbled onto an airline ticket sale with Southwest, the timing was as perfect as it's possible to be in the school year, and I have just felt really spiritually motivated lately (like actually been doing my spiritual exercises and writing my dreams down)!

The only reason not to go was that I was positively terrified of traveling with Cyrus.

And that seemed very much like a terrible reason not to go. Like this is a fear I needed to face.

I have been anxious about it for months! But as the date came closer, the anxiety faded and I just became more and more excited!

And the day of travel went incredibly smoothly! We took a Lyft to the airport, went through the special security screening with ease with all our mobility equipment and medications accounted for! At the gate we qualified for pre boarding and an attendant carried Cyrus from the end of the jetway to his seat while Kyle installed the carseat and I collapsed the wheel chair into pieces for efficient storage. The pre-boarding accommodation made such a huge difference in taking the stress out of trying to juggle our many pieces and bags.

Cyrus was definitely pretty irritated at being trapped in his carseat for so long, but he dealt with it by pretending to go to sleep, and then actually going to sleep. Kyle napped too, and I wrote letters of recommendation for deserving teenagers. We landed in Denver and the wheelchair was ready for us on the jetway the second we got off. We had lots of time to attend to our own and Cyrus's needs before we got onto our second flight to Minneapolis. The second flight was equally smooth and uneventful. I remember thinking that this was all so easy - and wondering why I was so nervous about traveling for so long!

On Friday at the seminar itself, we first discovered the family room. The room was covered in blankets, pillows, and toys! It was a place for parents to chat and hang out while their children entertained themselves. Cyrus enjoyed the room immensely - at first, probably only because it was his break from sitting in his wheelchair, but by the second day he would get excited each time we entered the room. I think he also learned that he got a lot of attention there - not just from me, but form other kids and parents too! He even found a toy that he liked! (Weird!)

As we attended workshops and the main program, I quickly noticed something. At this event, none of the volunteers mistook Cyrus's wheelchair as a stroller. Every time we arrived at a room or hall, it was like, "Go into the expedited line on the far right," "Here's your wheelchair pass!" and "Our volunteer will escort you to your reserved seat (and remove any obstacles or assist you as needed along the way)." I felt so incredibly accommodated without ever having to ask, and definitely without having to fight for it. And this was further emphasized by how many people would stop and say hi directly to Cyrus. They really saw him and acknowledged him as his own person, instead of looking past him, or talking over his head to me. No wonder the boy couldn't stop smiling! It must be so nice to feel seen.

We connected with old friends we hadn't seen in years, some of whom had never met Cyrus, and we met new friends as well. On Friday night at the main program, we were seated next to an older couple who turned out to be special needs parents themselves - the dad reached out to ask us for our story almost immediately, explaining that when they had first started as parents that they had felt so isolated and that he always made a point to strike up conversation with others who were obviously in the same situation. He hoped that perhaps, even if only for a moment, they wouldn't feel that isolation. We swapped several stories with them throughout the evening and then ran into them again on Saturday. That same afternoon I bonded with another woman who also had a son named Cyrus who apparently had epilepsy and shared a birthday with my Cyrus! All the coincidences!

There was one woman in particular though that seemed to leave a huge impression on Cyrus. She stopped by his chair during an intermission. She confided that he was the brightest light, and asked if I might introduce her to him. Cyrus was smiling, but he was almost coyly shy at first. I've never seen this emotion in him. It was impossibly cute, but as she spoke to him, he literally lit up! Started giggling and smiling! Honestly, I've never seen him warm up to a person so quickly. She quickly had tears in her eyes, and watching this whole beautiful soul to soul moment I was only slightly behind with my own tears. We managed to run into her again later that evening, and he immediately burst into giggles again! She's clearly a Cyrus whisperer!

On Sunday we ran around the temple in Chanhassen taking pictures amongst the multi-colored trees of a true autumn that is rare back home. And just when I thought we had too much time to kill and nothing to spend it on before we had to head to the airport, an old mentor took a seat beside us and we had the opportunity to drink tea and catch up! He had to depart twenty minutes before we did and we found ourselves upstairs just in time for a fifteen minute hu song in the sanctuary.

Cyrus didn't have a single seizure in four days through the whole thing! It's been about two months since he had a seizure free streak that long. I am just amazed at how perfectly and smoothly the whole trip went - how everything literally just lined up! It was an incredibly beautiful and profound experience. I don't really know how to put it all into words.

And then we had to go home.

Which did not go nearly as smoothly.

During our second trip through security we triggered two alarms. Cyrus's wheelchair had apparently acquired some kind of fume or smell that was on the "watch" list and we had to be searched. While I was being patted down, another bag had triggered an alarm because we had wrapped a loaf of bread  in aluminum foil. Admittedly a rookie mistake, but seriously... Kyle followed this security alert. Once we were both cleared and packing up once again, he asked where our passports were. I told him that they were with Cyrus's meds. We quickly discovered that we didn't have his meds at all! Yikes! And when I turned to the tables that had all the plastic bins that had gone through the x-rays, it was no where to be found! Even the emergency medicine had been with it all.

Feeling just slightly panicked that we had literally no life-saving medicine in our possession, we checked in with TSA again. Thankfully, they still had the meds. A man explained to me that he had set the meds aside and delayed their screening on purpose because an older woman had claimed the drugs were hers. He suspected that they weren't because apparently she had shown up significantly later than the bin of meds in the security line, and he was therefore unwilling to clear them and leave them on the table while she was still there. I watched them scan all the liquids in quite a neat contraption, and we were on our way again.

Our flight had been delayed, but not significantly. Certainly not enough to be a problem. Right? Except boarding was more stressful as they tried to make up the time. There were no attendants helping us carry Cyrus while I collapsed the wheelchair and Kyle installed the carseat. And there was no gap in time between the pre-boarding and regular boarding, making it difficult to get back to the chair on the jetway to collapse it down. But we got through it. I was anxious for most of the flight, unconvinced anyone had ever seen the chair to stow it underneath the plane. (Rationally, I knew that was the procedure and that the airline flight staff had to have the routine down, but I was still anxious). And Cyrus certainly never took a nap - not for three hours! I did get this cute video of his choreiform "sign language" as a bonus!

And on the other side of the long flight, in Phoenix, our layover was vastly shortened, and during this time Cyrus needed meds, needed to eat, and needed to be changed. I wanted food too! Some of my anxiety definitely served as fuel to feed Cyrus way too fast, which was leading to all sorts of coughing on his part, and even as I tried to slow down, I would inevitably speed up again. Kyle was gone trying to find me something gluten free to eat, and before I knew it, it was five minutes to pre boarding and I still hadn't changed him and I was surrounding by all our backpacks, a wheelchair, and a carseat with no clue how I was going to get it all into the line pre-boarding line by myself. And if we didn't manage to get pre-boarding it seemed unlikely we'd all manage to sit together!! Oh! And I had Kyle's boarding pass!! How was he going to get on the plane if I boarded without him? Ahhh!!!!

It was fine. I changed Cyrus right on the ground in the middle of the crowd! No one said anything. (He's getting too big for the public changing tables anyway - I feel like we're going to break them!) And then an attendant walked up and asked if I needed help, but before I could pleadingly say yes, Kyle popped back up right at my shoulder. And we were on our way to San Francisco Airport! (Which is conveniently far closer to where we live than it is to SF itself).

Cyrus still didn't nap, but this flight was far shorter! We just had to get to baggage claim and then a taxi! Easy right?!

But then an interior conveyor apparently jammed? And everything had to be transferred to another carousel? I don't know how the inner workings of an airport work. All I'm saying is there was a delay! And then Cyrus is seizing! Really badly. We put him on the ground and turn him to his side while watching the time. People are staring. Fun times! I guess that's what happens when the boy is up for like 18 hours without a nap! Ugh! Two minutes in he's come out of the seizure, and the baggage has arrived. So, we load him back up and head towards the taxi line. A minute later, on the way, he's seizing again. I hate clusters! Especially right now! Cyrus is not the only one who's been up for 18 hours, five of which were on cramped planes...

I don't take him out of the chair this time, as we're crossing a street. We're in line for a taxi when he comes out of the seizure, and I'm watching him like a hawk to make sure he doesn't have a third. Kyle  is trying to install the carseat in a taxi, and failing. Apparently the seat belt wouldn't click. The cab driver insists that his taxi and all compact cars are just too small for the seat. He's wrong - I suspect he doesn't want to put up with us trying the carseat in a different seat because we're taking too long to load. But he calls the attendant over and insists we need an SUV. Only there isn't an SUV in the line.

But there's one pretty quickly and this driver is probably thrilled that he has passengers immediately without having to wait in the line of taxis. He's thrilled to take us! Cyrus falls asleep so I feel like I can breathe. We get home and are in bed by a quarter to midnight, though it feels like two am Minnesota time. Let's just say it wasn't at all hard to fall asleep.

And here's the thing, despite the rocky transition back to real life, we learned that is is definitely possible to travel with Cyrus! It felt like an insurmountable obstacle before, but even with all the hiccups, even when things went awry, we were able to handle it! We rose to the occasion - used our creative selves to persevere through the tiny stresses.

And the whole experience was amazing! Definitely more than worth it!

Forgive us if we go back to being homebodies for a few months though while we recover! Haha!

...

General Update: 
Cyrus threw us for a loop a few weeks back with a new kind of seizure - a laughing seizure, which let me tell you, is not funny at all. But new medications have had a history of changing up his seizures, so it was not a shock to be surprised with something new. It was actually an empowering moment personally in that I recognized it as a seizure so immediately and without doubt. I've just learned so much about epilepsy that it's an area where I feel immensely competent.

Cyrus has seemed to come out of the teething fog (though that last molar still isn't actually in! It's being stubborn!) and has been in an overall good mood. His trunk strength and head control are more solid than ever. Sometimes I can do the "Look! No hands!" trick for 3-5 seconds when we're sitting together.

And his latest development is that he's become far more communicative. He will throw his limbs to the ground simultaneously when he has something to say. You have to guess by his tone of voice if he's upset and saying "NO!" or if he's excited and just wants to share his joy. I think this particular behavior comes from his training of pushing the button, which is usually placed at his side in class. He will now cry when he wants attention - like he just wants to play, whereas before, this was limited to being in pain, sick, or hungry. So that's been fun because he'll be crying and all you have to do is pick him up! Then he's all smiles! And as always, he loves dancing and spinning around. But he's getting heavier all the time (we broke the 30 pound threshold) so this is getting harder to pull off. I keep trying anyway. A friend of mine said I needed to develop the other side of my body strength. I don't know how I feel about this advice.

We're still working on getting our wheelchair van. And by "working on", I mean I haven't thought about it at all in four weeks. I gotta get back on that train though, because these hoops won't jump through themselves!

Support ADSL Research!

A university in Italy has agreed to take on a three phase study on ADSL! We have also volunteered Cyrus to participate in this study, though he will not be need until phase three if we get that far. There are several hypotheses on how ADSL deficiency results in the neurological symptoms, but none of them seem to be supported by strong experimental evidence. And the purpose of the first phase of this study is to use ADSL deficient cells, to see if we can better understand the mechanisms of how the disorder affects metabolism. This may lead to treatment options that treat the underlying issues, rather than just the symptoms! Right now, studies like these are Cyrus's best hope for a better outcome both in terms of development and life expectancy.

We are fundraising from multiple sources both within and outside of the university, including a Polish Foundation on ADSL that is donating to the university directly. The total study will cost about 250,000 Euros for five years, which amounts to about 50,000 Euros per year. From what I know of academic research, this is not an expensive study and the first year is already underway funded by the university. To make it easier to obtain grants and outside funding, they have asked for us to show a commitment from family and friends in support of this research. This will serve as a selling point.

I cannot communicate how difficult it is for us to get these kinds of studies going (and then funded) when there are so few of us! How difficult to create the perception of demand that is needed to get charitable organizations to care. And so I ask for your help to communicate this demand by offering a donation to this campaign (also linked in my side bar permanently). No donation is too small - the important point is participation from lots of people.

The initial description is in Italian, but if you click to the "Updates" tab, I have included a translation in English. If you would prefer to donate directly to the University, there are directions for how to do so in the description. We created the GoFundMe page simply to make it easier to donate.

And just so you know, currently $12 is about equal to 10 Euros.

Thank you for supporting my family and all of these beautiful children! Please share!

The Everyday Roller Coaster

The ups and downs of our journey is such a regular thing that sometimes I start to wonder if I've become desensitized to it. Because there have been times when others in my life have reacted so strongly to an event or an anecdote of our lives I've shared and I find myself taken aback. Why are you crying right now, I want to ask. This is everyday for us.

Other days, everyone misunderstands the struggle and I feel like the only person on the planet that treasures Cyrus for who he is - that sees him as a gift, and not a tragedy. This tiny child has taught me so much. He has shown me what I'm capable of when the world has fallen apart and he has shown me how much there truly is to be grateful for. I also just really like him! He is so sweet! 

Because every milestone is hard fought for, the tiniest developments are enough to send me over the moon with pride and joy. Whether he's just learning to use his teeth to actually chew something, or he's holding onto a hula hoop so that he can roll around the room, it always seems like a significant moment. These moments are sometimes few and far between, but they have been numerous. And they have somehow maintained their emotional punch. 

Cyrus being pulled around the room on a scooter board, but only if he continued to hold on. He lasted 90 seconds!

Learning to chew. He's improved so much in the last three weeks we've been doing this!

On occasion, the tragedy that many others see constantly, hits me all over again like an unexpected tsunami. Maybe it strikes when he's recovering from a particularly intense seizure, or when he's eating exceptionally poorly. The anger will flare up at the injustice of it all, and it's followed quickly by the devastation that this child will one day leave me.

I often wonder how it is possible that I haven't come to terms with this yet. And the more time has passed the more adept it is at creeping up on me, and therefore it strikes me that much harder as I'm completely unprepared for the onslaught. My husband recently said that he has come to terms with the fact that he will never come to terms with this. And that nugget of wisdom seems like an epiphany that perhaps even expecting myself to be "used to" it or have just "accepted it" by now is completely unrealistic. Instead, I perhaps need to embrace what I feel. 

Probably the longest part of the ride is just a heightened level of anxiety while watching over the course of weeks as seizure activity just ever so gradually ticks up, and then becomes completely routine, to the point where I can predict when it will happen within ten minutes - not because Cyrus has some specific trigger, but because it happens at the same time.... every single day. 

So then, I have to become creative. And I mess with his medicine schedule - move everything up by an hour to hopefully buffer him thirty minutes before the seizure is expected to hit. But then, the predicted seizure train just moves from the afternoon to the early morning. But what if I spread out all the different prescriptions? Clearly, he needs some late at night to last until morning, but he needs some boosters throughout the afternoon too. Of course, this means we're now giving him medicine five different times a day, but when his seizures mostly disappear, it's hard to argue with the inconvenience of such a schedule.

Taste the rainbow of medicine!

Except then, they strike with a vengeance exactly one week later. Like they were just hiding until we had become complacent. And the hardest part of the seizure is not the seizure itself, but rather the aftermath. Where his chorea explodes in frequency and intensity stealing what little coordination and autonomy he has, or how his smiles disappear and the world seems perpetually beyond overstimulating, and therefore upsetting and stressful for the little guy.

But even through all that I'm still sometimes taken aback by how sweet this child is. For example, he despises taking his medicine or getting his teeth brushed. He will let his displeasure be known in crumpled faces and sometimes even irritated moans or with an attempt to roll away. And yet, when you approach him with a toothbrush or an oral syringe he opens his mouth like he's trying to help you. He knows what you're going to do, he knows he doesn't like it, and somehow, he cooperates anyway.

When I come home from work, he's often falling into a nap, but he'll give me the cutest little sleepy smile before slumber will snatch him completely. And when taking him to class he gets so excited to see his teacher or his classmates. 

Sometimes though, I'm too exhausted to have feelings about anything. My first week back at work, Cyrus decided to use the pain of birthing a molar or two as an excuse to never sleep! I think I may have gotten 25 hours of sleep during the whole five day work week, and I'm confident that Cyrus got even less. (Well, maybe he cheated with a few naps in the middle of the day). But again, the never ending fussiness is not the biggest problem. The lack of sleep compounds and amplifies every one of his health issues. He has more seizures, the uncontrolled movements are exacerbated to the point where he can't eat well or fall asleep (he will just hit himself in the face and jerk awake again), which just adds to the awful cycle. And goodness knows, I don't have the emotional or mental resilience to handle any of it on 25 hours of sleep. 

Cyrus's go to strategy to cope with teething pain.  

Cheating like pro by taking a nap standing up! 

But this past week was none of those things. This week, Cyrus had a really good week. The teething seems to have abated at least to some extent (we have two out of four pointy bits of the second to last molar actually poking through!), and we've added a fourth anti-seizure med to the mix. It does make him a little sleepy and by late afternoon he just crashes for a nap. But we've seen only the slightest of seizures lasting only for seconds. He coordination is up, and he's been taking advantage! He's rolling around all over the place - I'm almost convinced he's learning how to turn corners to navigate around corers and under tables. And more importantly than all of that, he's in love with life! He's just in the best of moods. For five days in a row now, he's ended every evening with giggles and smiles.

Best week ever!

You just have to treasure the highs. Because the roller coaster will eventually plummet back down to the ground - it's just the nature of the ride we're on. And there is no greater high in my world than watching this child's joyous laughter. 

Navigating through our beautiful, if sometimes treacherous, path.

And smiling through the journey!