Test of Endurance

Cyrus's face describes it all! 

Our lives have been crazy enough that I've barely had a moment to think, let alone string together any words for a coherent blog post or four, but there's definitely been a lot to write about. Consider this to be the first of three or four updates I hope to have out in the next two weeks or so. This post is for the month of August.

A whole two days after our sleep study and less than a week after failing his swallow study, Cyrus was admitted to the hospital again for an NG tube placement. I could tell the moment we were checked into our new room that he was not thrilled to be there - it's like he recognizes the place! And perhaps he did, as this was our third visit is less than a week. The worst part of it was, there were orders on his chart that said he wasn't allowed to eat anything by mouth! There those medical professionals go all panicking again...

That order wouldn't have been so bad except the order to place the actual NG tube hadn't been put in yet, so the nurses couldn't proceed even though everyone knew that was the whole purpose of our visit! He handled the fasting better than I would have - by basically rolling over to his stomach and giving up on life for awhile - acting as the personification of apathy and resigned acceptance.

Tell us how you really feel Cyrus.

The actual NG tube placement was quite the spectacle, that involved three experienced nurses, and a nursing student, and of course me - who was just holding him in place as best as I could. And he handled it like a champ! He tensed for just a second, and then was fine. The whole ordeal lasted less than thirty seconds. In fact, one of the nurses turned to the nursing student and told him, "Don't ever expect that procedure to go that smoothly. There's usually resistance and screaming involved. Even adults don't like it."

What IS this thing?!

He did spend the next hour or so dramatically waving his head back and fourth as if to say, "What is this?!" With the NG tube placed we still had to remain in the hospital for a few days to confirm that Cyrus could tolerate the feeds, and to receive training as his parents in checking the tube's placement, using the new feeding pump, and learning how to re-tape the tube in place so that he couldn't just pull it out. They also wanted to do another barium study - this one to map the shape of Cyrus's upper intestinal track to prepare for surgery for his permanent G-tube placement.

Imaging Study with cool x-ray machines!

This was a study that involved another really cool imaging technique that I got to geek out over. It was incredibly similar to the first swallow study, but I think I also just enjoy getting to see the inside of my son's body - especially live as it is working!

Mapping Cyrus's Intestinal Track.
This one reminds me of the monster in Stranger Things!

Afterwards we were discharged from the hospital, and were privileged enough to spend a whole day at home (two nights!) before heading back to the hospital for surgery. We were told to arrive by 10:30 AM, and that surgery would be at 11:50 AM, and that Cyrus needed to fast for the twelve hours prior to the procedure. We arrived, checked in, and waited.

And waited.

And waited some more! With Cyrus getting fussier by the minute! I checked in at the desk multiple times, trying to confirm that they at least knew we were here.

When we were just 15 minutes shy of our scheduled surgery, I went back to the desk, to ask what was going on, and why we had to arrive so early. She checked the schedule then, and informed us that Cyus's surgery had been rescheduled the night before for 1:50 pm, and that we have arrived hours too early.

"Did no one call you?"

I didn't scream.

A few minutes later, I received news about another totally unrelated family emergency, of which I could do nothing about. And Cyrus, the ever chill child, was now outright crying because he was hungry. I also hadn't eaten anything myself because I had planned to go grab food the second he was in surgery.

At this point a social worker came out to speak with us. She explained that not only was Cyrus's surgery rescheduled as the person at the front desk had already told us, but that the two surgeries before Cyrus in the operating room had both gone longer than anticipated, and they were running an hour behind.

I did cry.

The social worker gave me a snack pack and some meal vouchers, insisting that I take care of myself.  She also pulled us into a private waiting room, and requested Cyrus be given fluids to keep his blood sugar levels up. As a patient with a metabolic disorder, they apparently worry that the extended fasting can cause his blood sugar to crash unexpectedly. Unfortunately, having extra sugar in your blood does nothing to actually satiate you. And he continued to cry inconsolably for hours. Until around two in the afternoon when he cried himself to sleep.

Three hours after that (so now two hours later than running an hour behind, and more than five hours after the time we had originally been told), Cyrus was wheeled away for surgery. Kyle and I were able to have a real dinner before heading back to the hospital for our post-up surgery consultation, and to hang out with a very dopey three year old.

The surgery apparently went well, and Cyrus recovered quickly from the sedatives. He woke up  much calmer than before (sedatives were helping I'm sure) and we learned from an extremely friendly surgery recovery nurse how to give him his medicine through the brand new tube. And it was so easy! No thirty minute wrestling matches required!

He spent the next three days in the hospital to be sure he was continuing to heal well, to make sure he could tolerate this new method of feeding, and so that mom and dad could be trained on how to take out and replace his g-tube button. He hated being trapped in the crib during this time, so I tried to make a point of taking him out and sitting with him on occasion, even though this was difficult with all the monitoring cables attached to him still. This only placated him slightly, as what he really wanted was to roll around on the floor.

But once he got home, he still wasn't pleased since he wasn't allowed to be on his stomach. The surgeon said he wouldn't want to be - that it would hurt. Yeah, Cyrus didn't care. I'm not sure he understood the cause and effect that being on his stomach caused the pain to increase. If I turned away for a second he would roll onto his stomach, and then immediately start hiccuping. So he probably felt the pain for sure and was unhappy about it, but that was still the position he wanted to be in.

See! He's totally thrilled! And not at all too big for his chair...

This lead to three really long days! We tried to keep him in the chair for as long as he would tolerate (far longer and more often than normal). Then we'd move to the floor, but would have to hover and guard him from rolling over onto the surgery site. He was so angry with us like all of the time, and one of our attentions had to be on him at all times. Occasionally, we'd get a small breather if he would let us get away with putting him in the bean bag chair, but most of the time it didn't work. It was emotionally exhausting after two weeks of emotional exhaustion! But come that Friday, and we were both free, it was so much easier!

Except he was still constantly pulling on the button and the tube both. It was actually fascinating to watch him try to grab things so intentionally! It would take him three or so tries, but he would get the corner of his shirt and pull it up. Then immediately go for the button. And I just sighed - feeling he picked a bad time to develop fine motor skills. We learned to put socks on his hands. This backfired (or paid off, depending on how you look at it) a bit as within a day or so, he learned to grip things through the sock just by pushing his fingers into his palm.

Socks!

I'm delighted to say that once things settled down, things got immensely better for Cyrus. It has been so much easier to give him medicine - something that was becoming a 30 minute ordeal twice a day, now can be done in 5-10 minutes. Feeding him is so much easier, and he's clearly feeling better. Like I don't think I realized how much the constant aspiration was probably irritating him and making him feel off. The three weeks following the surgery, we were treated to Cyrus's happiest version of himself - we've seen this Cyrus on many occasion, but never which such frequency.

He put on three pounds in the space of a month, and has just had more energy in general. He's more active and less fussy. It's been really nice to enjoy. He is far more socially engaged. He just responds more when people talk to him or smile at him. He's laughing more. He is in love with life! I've certainly never been able to collect so many pictures of a smiling Cyrus before! And we find ourselves wondering why we didn't do this ages ago!

General Update: 

Our test of endurance seems to be continuing with a batch of regrowing and stubborn granulation scar tissue at the surgery site, common colds plaguing Cyrus and mommy alike, continued battles with our insurance company, volume intolerance (which involves vomiting), increased seizures while our neurologist is on leave, and extended hotel living (we're up to a month now)! Yay! But more on all that later! In the meantime, we're hanging in there taking one day at a time!

Refusal to Panic

I always knew Cyrus was a high risk for aspiration. And it’s something that I stressed about constantly. Especially when we have given him oral medicine because to keep any of it from spilling we give it to him on his back. And by the end of administering the meds (a milestone that seems to take longer and longer to reach every day as Cyrus has learned to fight us tooth or nail), he’s almost always coughing with glassy eyes.

In the last six to eight months or so, he’s had more days where he just sounds “watery” where it’s like he’s got a ball of fluid in the back of his throat that just sits there. I call him Dragon Baby when he gets like this because he just sounds like he’s growling! And every so often, he’ll cough this ball of slime up. It’s rather gross. His nurse at school commented on it too – how he struggles sometimes to cough or clear something in his chest and when he is occasionally successful that he will cough up a ball of phlegm.

Anyway, his pediatrician has always been quick to reassure me that his lungs sound clear during practically every visit, and he’s never seemed to have a sudden fever or a bout of pneumonia. But she put in for a swallow study anyway this past February. (And apparently with aspiration, risk of infection is only part of the problem. The other half is that your lungs aren’t equipped to handle the acids and bases of your foods like your stomach is – and exposure to such chemicals can cause your lung tissue to erode). Only Stanford never ever calls us back when she orders stuff. Or they do, but it takes like six months!

Meanwhile, last May when Cyrus’s seizures were spiking once again, his neurologist recommended we look into getting a Vegas Nerve Stimulator (VNS) implant. This is a rather nifty device that can be used to interrupt a seizure in progress by swiping a magnet across the implant and using electromagnetic induction to induce a current into his Vegas Nerve. Apparently, this was an accidental discovery and no one really understands why it works in countering certain types of seizures. It also doesn’t always work well for all types of epilepsy, and we have no idea if it’ll work for Cyrus as we can’t find any record of an ADSL patient trying one out. But, if it does work, it could potentially take the place of one of his sedating medications (or prevent a new one from being added) without any of its own sedating side effects.

But that isn’t to say it doesn’t have any side effects at all – it is a machine that you’re putting inside your body. The two on the list of potential side effects that concerned me were “additional difficulty swallowing” and “sleep apnea”. Cyrus already has difficulty swallowing and we have suspected in the past that he has sleep apnea as well, so we didn’t really want to exacerbate either of these issues.

The neurosurgeon reassured us that the device is now a lot smaller than it used to be, and none of his patients has had issues with sleep apnea from the implant, but agreed that a swallow study should be done as soon as possible. And apparently when a neurosurgeon refers you for anything, Stanford will call you almost the very the next day!

So, we had our swallow study this past Thursday, and can I just geek out for a moment about how cool this imaging technique is?! Basically, they added apple flavored barium to his food – the barium is dense enough so that it can show up on an X-ray. Then while he was eating in a tumbleform chair, they took an X-ray video! And then they can watch where the food goes as it goes down. It was very cool watching Cyrus swallow his foods via X-ray! 

The trials were kept short so as not to expose him to any more x-ray radiation than necessary, but apparently not much video was needed because Cyrus failed this test spectacularly almost immediately! He is apparently a “profound silent aspirator”. This just means that when he swallows a portion of his food is going into his lungs and he’s not coughing or doing anything to clear his lungs (or let us know that there’s stuff in his lungs). In addition to aspiration, some of his food just sits in this throat (in the pharynx), and builds up there, and it takes him a long time to clear it, and the more build up there is here, the more he aspirates as he continues to eat.

Right after the trial concluded, and before any of this had been explained, Stanford’s OT, Cyrus’s regular OT, the technician, and the radiologist all disappeared into the hallway to confer with one another. Once I realized this had happened, I cautiously approached and asked if I was allowed to be a part of this conversation.

And this OT – she was the sweetest! Apparently, she was asking our regular OT for advice on how to deliver bad news. She really seemed to feel like she was handing down a death sentence. And it was hard to reassure her that, “No, it’s okay. We were expecting this to eventually be the case. Give it to us straight. We received an actual death sentence a few years back and have survived so far!”

She explained Cyrus should never get more than a tablespoon of anything by mouth. That he needed a g-tube (requires surgery), and should get an NG tube (a tube down the nose and into the stomach) as quickly as possible in the interim – she would have preferred yesterday. Even our own OT seemed just so very sad as we walked back to our car, offering an ear if we wanted to talk about it.

And I appreciate them both so very much for their compassion and their sensitivity.

But I can’t feel upset myself. If anything, I feel vindicated, because I’ve been pushing for this for months!

Our OT, literally called us that night to check in and give advice for how to feed Cyrus more carefully until we can get a tube placed. She was very concerned about him continuing to take food and meds orally – she suggested that we reach out to our neurologist and see if there was another method to deliver the meds until a tube could be placed. She called again Friday morning explaining that she’s trying to get a referral to a GI (Gastro Intestinal) Specialist as soon as possible, as well as a referral to Complex Care (a program where kids who are medically complicated with lots of issues and specialists have a doctor or a team that are responsible for coordinating all the different doctors’ treatment regimens). Then she contacted me a third time, when one of her contacts was out sick to tell me she was going to reach out to someone else instead. I just so appreciate that she is making all these calls! Goodness knows, I hate making them myself!

Our pediatrician is also trying to get us a referral to GI, and she suggested if she couldn’t get soon enough, we could just go to the ER to get an NG tube placed there.

And I am baffled by these reactions. Give his meds another method? Like what? IV? Injection? Rectally? And the ER?! Really?

I just don’t feel the urgency. I don’t understand the panic. In fact, I refuse to panic!

I know that aspiration is dangerous. I have read so much about it over the last few years, and have stressed about it constantly as mentioned previously. But here’s the thing. If Cyrus aspirated so profoundly during his first ever five-minute trial, he’s been aspirating profoundly for months and months! Probably longer!

And I have already learned that one missed dose of medication results in terrible status seizures. And he can’t not eat – that’s how he stays hydrated!

So yes, aspiration can slowly and surely kill him. (Why do you think I’ve been so worried about it?!) But seizures and dehydration can do it faster!

A week or two of eating and taking meds the way he has been, seems insignificant in the grand scheme that is caring for Cyrus. It’s not like we’re not going to get a tube in as soon as we can. And it’s not like we’re not going to do the surgery to install a g-tube! We have a long-term plan in place!

And if we can’t get a GI appointment in the next week or so, then sure, we can go to the ER as a last resort. This weekend we already have plans! We’re doing another medical test – a sleep study! We got this appointment by sheer luck off a waiting list with the hopes that it could happen before any surgeries! So, I wasn’t going to turn it down!

But these medical professionals and OTs are all so panicky! Do I have my priorities all mixed up here? Am I underestimating the danger?

And don’t worry. I haven’t been sitting on these questions. I actually asked our pediatrician straight out if this was the case on Friday. She never got back to me.

I figure that’s answer enough.

Sleep study, here we come!

...

General Update:

Cyrus closed out his first mini school year on July 13^th after starting in April. I think he’s missed it! Although, it might also be that his mom keeps dragging him to doctor’s appointments and weird medical tests during his month off. And of course, PT and OT continue even during vacations! But he doesn’t see his teacher and nurse on a daily basis, anymore and I know he would greet them both with smiles (usually after hissing at me for putting him in his chair).

We try to do fun things too though – like trying out swimming and going on playdates with other small children.

He was fitted for a new wheelchair a few weeks back, and will be receiving a new Zippy Iris in the next 4-6 months! And we finally made a break through with our insurance company in terms of trying to get our wheelchair van, and have been promised that we will hear from them on or before August 2^nd with an absolute determination of whether they will fund a van modification or not. Either way, we win!

The seizures that peaked in April and May are back down to manageable levels with the addition of a fourth anti-seizure med. If our honeymoon with this med doesn’t turn into a long lasting healthy relationship we will probably move forward with the VNS. We might do that anyway if we can get surgeons and anesthesiologist schedules lined up enough to do both surgeries at once!

I don’t know if the sleep study went well. I have no idea how anyone can sleep well with all those wires and bumps, and things on your face! They also did not initially want me to give Cyrus his normal melatonin supplement “because it affects the way you fall asleep”. No duh! That’s kinda the point. And well, he just didn’t get tired – in fact was super active (and angry) and tearing out sensors… Eventually, the technician said I could give it to him if I wanted. And he fell asleep so fast! But then he was woken up at midnight and 4:30 to readjust more sensors, and then again at 6:15 AM because the study was over and they needed to take all the wires off. Though he fell asleep rather quickly in all instances (even during the removal of wires), I’m just not sure how representative the study was of his usual sleep behavior. Basically, he was so exhausted from the sleep study he came home, ate breakfast, and then took a five-hour nap. (The only time he normally takes naps that long is after some major status seizure).

The bath to get all the sticky stuff off his skin and conductive paste out of his hair was also quite the adventure! I don’t think Cyrus appreciated it very much. Such is the way of medical tests. Hopefully, though they got some good data if only in shorter bursts and it will give us good information in the future and will result in higher quality living on average days!

Mommy and Cyrus napping off the sleep study together!

Expectations of Perfection

I read this post on The Mighty earlier this week about a mother who confessed that she often just doesn't feel strong enough for her son to meet all his needs. I cried through most of it because even though our contexts are completely different, I felt the rawness of this woman's story so completely.

Because I feel it too - completely inadequate more often than I'd like to admit. It irritates me when people say, "I don't know how you do it" or "I could never do what you do." Partially because it's not like there's a choice, and of course they would if they had to. And also at the same time, perhaps somewhat contradictorily, I feel like no one is adequate for any of this. Definitely not me.

About five or six weeks ago, I failed to give Cyrus his evening dose of medicine. This is the only second time we have ever completely missed a dose, but unlike the first time, the fallout was more severe. Basically, the next morning every time he woke up he immediately started seizing. He had four seizures in a three hour period, two of which required emergency meds. And the week after this event, his choreiform movements exploded in intensity as they sometimes do after severe seizures. This makes it harder for him to go to sleep, which in turn causes more seizures.

His seizures themselves have also changed from mild partial seizures to stronger tonic seizures - the first seizures caused by the missed dose could have triggered a cluster. He's now back up to 5-8 seizures per day. And it's hard not to blame myself for all of this. My husband keeps telling me that I can't expect myself to be perfect. That we're both going to mess up sometimes. And the fact that we've only messed up twice in two and a half years is an amazing accomplishment. And intellectually, I can agree with all that. It doesn't change how I feel though, especially when the consequences for messing up even just once have become so incredibly severe. (On the other hand, we now have a pretty good idea how much his meds do in fact help him). How can I not expect myself to be perfect?

And you know, if giving him medicine was the only thing we had to worry about in his care, being perfect might be slightly more attainable, but it's not.

Daddy is still the best!

It took six weeks to go to all the specialists' offices to get all the medical orders we needed for Cyrus to start school. This is a task that apparently has to be redone every year. When Cyrus was shown to have a high level of crystals in his urine we had to take him to a sonographer to check for kidney stones (he's clear!). We also met with the neurologist last week, to see if we couldn't get this latest cluster of seizures back under some semblance of control and she is suggesting that he get a VNS implant, which may require surgery.  A pre surgery consult appointment has to be made to discuss if we want to pursue this. In the same week, his 30-day IEP meeting is taking place and his IHSS hours are up for review which involves a meeting with the social worker from the county.

I've already used up all my personal days this year, so I am unable to go to any of these. I always give Kyle my list of questions, but since I don't hear the answers, I can't write a list of follow up questions. And that just makes me feel insecure and unqualified to make decisions regarding his care.

And then the sales person from the wheel chair calls once a month, and wants to know what progress I've made on getting our very needed wheelchair van funded through the Golden Gate Regional Center (GGRC).

I usually dread this call, as it is a reminder that another month has gone by and I've made no progress at all. But this month, I've actually done a lot, but despite this, I still don't feel any closer to success. The process is long and the GGRC requires that we apply to three different charities, California Children's Services, get denied from my own insurance, and then meet with their OT who will determine if Cyrus actually needs it before I can get funding from them.

The bus has arrived

We've applied to the charities. This was an involved process itself - as for each one I'm basically applying for a grant. The nice thing though, was I didn't have to care if they say yes or no. Either way, I'm closer to my goal. And CCS has a rejection form letter they will just hand you, if you ask for it.

Kyle has tried endlessly to get any kind of response from the insurance company who keeps changing their requirements of what they need from us. First, they wanted a prescription, which we obtained. Then they wanted the code for the piece of equipment in question. We talked to the wheelchair van dealership and they told us there isn't one - that usually when there's no code insurance companies just automatically deny coverage.

Except for my insurance company, Anthem Blue Cross of course - they won't give us an answer one way or another until they have "reviewed" the request, and they are apparently unable to review the request until they have a code. Even when we explained that we really only needed a denial letter from them - that we don't actually need them to pay for anything, they refused to consider it.

"Will you put that you refuse to consider it in writing?"

"No."

After lunch, we go for a walk

I just want to start crying. Why is so hard to get a denial from my insurance? Why is getting services and aid so hard in general?

I have asked for help from other parents who said their insurance was only too happy to deny them coverage on something. I've also been in correspondence with people who work at CCS who are experienced at dealing with insurance companies specially with regards to equipment, but they seem to completely misunderstand what I'm asking for help on. And I've reached out to our assigned social worker who has not responded to any of my pleas for aid with more than "I'm looking into it" that last few times she even responded to my inquiries.

So yeah, I feel inadequate. Incredibly inadequate.

Then this well meaning new special needs mom friend I made is telling me, "Kari, you have to get help now. You have to get actual respite workers (who we've had trouble finding) in there now before you burn yourself out. And I agree with her, but that's also more bureaucratic fighting, and I just don't want to do it. It feels right now in this moment, so much easier to just do it ourselves. She insists in the long run that this will not be the case.

And intellectually again, I know that she's correct, but it doesn't change the fact that getting help is hard, and yet another thing to do, and another place for me to feel too small to handle all of it.

Having fun with his teacher, Mitzi!

All that being said, Cyrus himself is doing really well. Even though he's having more seizures, they mostly don't seem to be slowing him down. He has been going to school for about a month and has adjusted well. He has a fantastic teacher who he is already smiles to in greeting. She also sends us home a recorded report everyday with an assistive communication device that allows us to send messages back to her the next day (I think they're also using this to train us parents in how to use the assistive technology they are teaching Cyrus). He has a nurse who has already had to care for him through a status seizure and rides the bus with him every day, and he still gets PT, OT, and speech therapy. He's pretty wiped out by Friday, and slept in this morning until ten! Which was positively luxurious for his parents too!

We did find out that Cyrus needs glasses because he's apparently pretty far sighted, and now when they are on we're rewarded with more social interactions such as smiles and vocal play. We will find out at our 30 day IEP this week if Cyrus qualifies for vision therapy as well.

Our random medical tests in an attempt to figure out what Cyrus used to be so unhappy about did reveal that he may be lactose intolerant, or may have kidney stones, but as mentioned before we ruled the latter out already. Since we have removed dairy from his diet he has, in general, been happier and more content again. Yay for small mercies!

He seems to be going through a growth spurt - has put on three pounds since December, and is now 3 foot 4 inches tall. And just the other day, I caught him sucking on a finger in his mouth. He's never done this before! He's actually self-soothing with his thumb or pointer finger pretty consistently now. He'll sometimes even put himself down for a nap!

And I keep trying to remind myself that even when things are not perfect and even when I cannot be perfect, there is much to be appreciative and proud of as well.

Perhaps I should follow Cyrus's example and learn how to self-sooth!
Oh wait, that's why I write this blog. 

Mysterious Mysteries

I saw an adorable meme today: 

And I feel that I understand it and some of what it means today, more clearly than I ever have before. And that I have to become incredibly sensitive to the smallest of signs. And sometimes, even none of that works! I still have no idea what's going on!

In the past, even from a very young infant, Cyrus has always been incredibly chill. Almost impossibly so. I have said on more than one occasion that he spoils us with how calm he is. And I have found in the ADSL literature more than once lists symptoms that include "unusually happy". Of course austistic style tantrums are in there too, but we hadn't really experienced that - except that one time when Cyrus was on steroids for a month.

Let's just say a six month old with 'Roid Rage is NOT an experience I would wish on anyone!

But the point is, having a "chill" or "mellow" baby is not always a good thing, because it means they don't always communicate when something is wrong. And over time, we have become amazingly adept at reading the smallest of facial expressions. There's a flash of a wince or a particular grimace that most others mistake as a smile that let us know that he is uncomfortable. There's a particular noise that he makes that is rather distinct, but it's unclear whether it's a happy sound, or an angry sound unless you're looking directly at his face (particularly the eyebrows I think, but I can't really put my finger on it). Perhaps it's just a "Hey! Pay attention to me!" sound!

But having a calm child, also means that when he does cry - it's not to be ignored. That something is absolutely dreadfully wrong. And I swear this child has been crying since mid January! And I feel so lost as to what the problem is and completely inadequate in figuring it out.

Cyrus comforting himself with cuddles

Then there's this face.

We have thought we had it figured out several times.

In January, he was behaving like he was teething - lots of grinding of teeth, shoving his face into the floor, a bit of soft sobs, and lot of angry utterances that I can only describe as exhaling watery hard k's at the back of his throat. Almost like he's hissing like a cat, except with a k instead of an h. But we knew it couldn't be teething anymore because he has finally finished cutting every single one of those awful molars (plus the other ones too). One of his teacher suggested that it might be an ear infection. Since he had no fever, I never would have thought of this.

We took him in! And sure enough - ear infection! It may be silly to be happy to discover that your child has an infection, but there's also a certain relief in understanding what is happening so you can do something about it!

He starts taking antibiotics and I give him some children's ibuprofen and things are better for a few days. We finish the course, and take him in for a follow up and the ear infection has cleared up! So, I stop giving the ibuprofen, and suddenly he's exactly as he was before - grinding and not happy.

And over the next two weeks it only gets worse. For huge chunks of time each day, he will just have a meltdown  - where he's thrashing about on the floor, slamming his hands down onto the ground, and cannot be consoled with cuddles, swinging, or food (Our trampoline birthday party was sadly pretty much a wash). And he won't take a nap even when we try to set him down before the meltdown (not that they are predictable at the moment).

Cyrus mostly winced and needed cuddles at the trampoline park... 

But the ibuprofen still works. Forty minutes after a dose, he'll be calm for hours!

And that kills me because doesn't that mean he's most likely in pain the rest of the time? I know I can't give the painkillers every day indefinitely. That doing so is not good for him in more ways than one. But I have no idea what hurts and he can't tell me, and it seems that arching his head and grinding his teeth are general complaints - not isolated or specific to his actual mouth or face.

At the beginning of February, our IEP team suggested we get Cyrus's ears checked as they hadn't been assessed since he was born. This took awhile to set up, but we did get Cyrus into an audiologist. The doctor had this awesome contraption that determined whether the inner ear was registering/responding to sound. But in one ear - his right ear - he had abnormally high pressure in his middle ear. This makes it difficult to get a reading of hearing ability out of this ear, and we were told that in adults, this condition is incredibly painful.

Ah ha! This explains everything! And is something we can do something about!

So we contact our pediatrician, and quickly get referred to an ENT (Ear Nose Throat Doctor, which is actually supposed to be called an otolaryngologist, but who knows how to spell that - let alone pronounce!)  It is another week or so before we are seen. Cyrus's tantrums, for lack of a better descriptor, have increased both in frequency and severity where at times he is actually crying with actual tears down his face (which again, is a big deal because it never used to happen!)

The ENT takes a look and insists his ear is fine! That if he did, have increased internal pressure, it's gone now. He thinks (listening to Cyrus's grinding) that it's probably a dental issue. We go back to another audiologist just to be sure because this was supposed to be the answer to everything! And yup, the pressure has cleared up completely. At least we now have a clean hearing test that shows both ears work correctly.

So we make our way to a pediatric dentist. Usually, there's a dentist that comes to Cyrus's school, but they weren't going to be there again until late March, so we make an appointment at a local pediatric dentist. And this guy is awesome! If only because he works so well with Cyrus and he removed the medicine induced stains on his teeth that I've complained about before. But yeah, there's nothing wrong with his teeth (though he does have grinding sites), but there's nothing indicating he would be in any pain with anything related to his teeth.

Feeling frustrated at the shuffle, I start wondering about other things. Could this just be a cognitive growth spurt where he suddenly understands new things and is frustrated at things he can't do or can't communicate or just is overwhelmed by all the sensory inputs going into his brain?

Could this be because of his latest trend in seizures? Where he doesn't fully lose consciousness in a giant grand Mal seizure, but rather is having mild partial seizures a lot more often? Perhaps, these alter his perceptions, and make it difficult to make sense of things around him and he's scared and stressed?

Or perhaps, it's not one thing, but all of these things, plus who knows what else? Perhaps it was ear infections and middle ear pressure, but now is mental emotional stress. I don't like that answer as how am I ever going to figure all of it out?

I try another day with ibuprofen, you know, just to see.

Damnit! The ibuprofen still works! So, he probably is in pain. What are we missing?!

Cyrus after a dose of ibuprofen...

This past Sunday evening he had the worst meltdown - one that felt both heartbreaking and puzzling. He was angry at first - screaming and vocalizing his complaints, but not really crying - more the Cyrus equivalent of yelling. He did this for two minutes or so, and then out of no where he was laughing so hard!

Where did that come from?!

Don't question it! He's happy now right?!

Then another minute or two pass, and he's crying - his whole form wracking with crushing sobs, tears pouring down his little red cheeks. He couldn't be consoled. And this goes on for another ten minutes - where he's just changing instantly from one extreme emotion to the next - until he finally cries himself to sleep.

This is not normal. This is incredibly weird - like neurologically weird! Could this be a different type of seizure? Like seriously, what is happening in your little brain dude?

So we call the doctors again, this time basically just crying out for help. I explain that we've been shuffled every which direction, and still have no answers. And thank goodness for our wonderful pediatrician. She gets back to us so quickly, and she admits that she's shooting in the dark, but at least she takes me seriously, and suggests a few other tests we can try.

Thankfully, Monday was significantly better, but he seems to gradually ramping it back up each day that goes by. It's definitely time to run some tests! I don't know if any of it will pan out, but it feels better to be doing something.

And in the meantime, I guess we will have more snuggles on the couch. Maybe binge watch something. I didn't want to grade those quizzes or labs anyway!