Magic Moments

Traveling with Cyrus is definitely stressful. Just the process of packing takes an incredible amount of forethought and planning. I have a list of three dozen separate items - a third of which are different medications and supplements, none of which can be forgotten. Then we have to figure out how to fit it all in the car, which is not always a small feat when the wheelchair takes up all of the trunk. The drives themselves have to be broken up into short chunks that accommodate medication schedules and Cyrus's tolerance for sitting up. But despite the struggles and the stress, Kyle and I are of one mind that the trips to see extended family and friends have become even more important to us.

Grandparents, aunts, uncles, and friends often truly light up when they get to visit with Cyrus. And I love that moment when they first greet him. But there's something else that always strikes me - they almost always comment on how much he's changed. There's the comments about how much he's grown, but there's also comments on how much he has developed. This helps to remind me of the progress that has been made, which often feels imperceptibly slow to me. But to those that only see him once or twice a year, the difference can be quite stark and dramatic.

When we arrived at a dear friend's I placed Cyrus on the ground on his back. And he immediately rolled over to his stomach. And my friend was delighted! "You weren't doing that, last I saw you," she said with a smile. I was shocked. He wasn't? The last time we visited was just under a year prior and I had to stop and think about it. I realized that this was a new talent on the summer trip last year, but that it happened later on the circuit so she didn't get to see it. And that was such a crazy thought to me  because I feel like he's been rolling into walls and furniture since forever!

I have also noticed that Cyrus seems to display bursts of development on these trips themselves. This may just be due to the stimulation of new people and new environments, or maybe it's simply that I honestly give him more undivided attention while we're on vacation.

When we arrived at grandpa's he was wary. This was the third new place of the day, and often we lug Cyrus around all over the place - to people's houses, restaurants, and parks. None of it has ever seemed to stress him much. But here, he's eyeing everything askance, hesitant before he rolls about the room. This was exciting too! Because it shows that he's more aware - that he knows this is not part of the normal day. Grandpa got him distracted though, and he started enjoying himself.

When visiting the Redding cousins, Cyrus is often ignored in the excitement of Uncle Kyle's arrival. But on this segment of the trip my oldest niece took a shining to him. And on two different occasions, I walked in on her holding his hand and singing to him.

The next morning, Cyrus had a panic attack followed by a pretty severe seizure. Kyle was still asleep and I had no idea where my sister had disappeared too! I felt that moment of panicked indecision. The floor was hard linoleum, but I knew he shouldn't stay in the chair. I took him out, and there's something about feeling the convulsions in a child that you are holding that sends your anxiety sky-rocketing. But I didn't know where to put him. Finally, after wandering the house with Cyrus in my arms I managed to find a space on my sister's queen size bed and rolled him onto his left side.

The kids were fantastic during the "emergency" by following my directions quickly and without question. They remained completely calm. My nephew served as my time keeper. I told him I needed to know the exact time because he could see the clock in the kitchen and I could not. And I asked him again, every thirty seconds or so, and he seemed confused as to why I kept asking, but kept shouting it back to me anyway. My niece came in at that point (wanting to know if Cyrus had slept well! Such a precious child!), and I sent her to wake up Kyle to find Cyrus's emergency meds. I had her repeat the directions back to me and she scurried off cooperatively. She came back almost immediately asking where the back pack was, and then came back again with the meds themselves.

This all took place in about two and a half minutes. Cyrus came out of his seizure and took a two hour nap. No emergency meds were required. Both children were concerned and affectionate with him afterwards until I chased them out to let him sleep to recover. But I felt so grateful to have such caring and reliable helpers on hand.

About two months before our trip, we had a playdate with a friend who had a four month old baby. And I loved watching them roll around together as they were physically very much in the same place - lots of flailing and uncoordinated rolls. His friend would roll into him just as often as the opposite. It was so cool to see them interacting at the same level. A month goes by and we have another playdate and it's clear to me that Cyrus has already been left behind a bit. The change is not huge, but it's noticeable, and it has long since stopped hurting, but it's hard to find true peers for Cyrus because he stays a peer for such a short time.

At our next stop on the trip at my sister's house, the newest and youngest nephew is yet another example of this. Cyrus's seven month old cousin is crawling and cruising in circles around him. The little tyke would crawl so purposefully and dramatically, come up to Cyrus and grab his mouth, eyes, and hair. At which point, Cyrus turned and looked right at him - held beautiful eye contact, and then released this exasperated long-suffering sigh, before turning away and tolerantly accepting his fate. Almost like he understood that his cousin was just a baby and didn't know any better. And in that moment, Cyrus seemed so much older than his cousin, more mature and more aware like an older brother. That was really cool.

When Cyrus had finally had enough hours later, I took him upstairs alone to recover from the over stimulation. He immediately rolled to his side, and tried to lift up his head sideways instead of backwards as if he was trying to sit up. This is a move I had never before witnessed from him and watched with bated breath wanting to help, but also wanting to see what he could do. He was pushing off his elbow and grunting with the effort. He tried oh-so-very hard before he suddenly flopped back to the ground in defeat. He immediately started crying in the frustration you see in an infant who knows what they want to do, but can't quite figure out how to pull it off.

I found myself wondering if he is aware that he has to struggle more, if he watches his cousins run around screaming and wonders why he can't do the same. He has never seemed to know the difference before, but this day he would not be consoled with cuddling and pacifiers. But you know what did work? Physical therapy! Holding him out in a supported sit, where he has to do all the strength and half the balancing - where I just act as training wheels to catch him if he starts to lean too far in one direction, was the only thing that got him to stop crying. And this was strange in itself because Cyrus usually hates physical therapy. But this afternoon, he was determined. I definitely took advantage, and two days later I can get him sort've balancing side to side when he's leaning forward in the supported sit. I can even let go of him for 3-5 seconds before he starts to fall over.

Then there's this little girl - my youngest niece who's almost five. She has always been fantastic with Cyrus - playing with him, imitating him. And he definitely tries to follow her. But I thought that with a new little brother, her interest might have waned. My fears could not have been further off! This child truly sees my son. She is attentive and includes him in her play. This week, she wanted to play doctor. She was the doctor and he was the patient. She had come to check him out at a home visit and give him his shots.

 









She tries to comfort him when he's upset and she still loves rolling around on the floor with him - often chasing him around as much as he chases her. She is excited to to push him around in his wheelchair, and was absolutely indignant at the store when he had been taken out of her sight. She delights when he smiles and laughs and at one point he had rolled onto her arm and just stayed there cuddling with her for several minutes. Then she would not stop gushing about how much Cyrus loved her.

I felt so privileged to witness what I can only describe as pure magic moments.  These children all give me such joy in the moment and hope for the future. And I treasure these trips, as exhausting as they often are, as a time when the daily stresses fall away and I am able to take more moments to just connect with my son and husband.

The Inconsequential Side Effects

 

Cyrus is on three anticonvulsants, and he's on the maximum dose for each of them for his weight. Seizures still manage to break through, but the neurologist has always seemed reluctant to add a fourth. Instead, she would talk about substituting one of them. This idea terrifies me because I can tell you what each one of these drugs have done for him!

Sabril (vigabatrin) completely controlled his infantile spasms. And every time we increase it's dose, his seizure frequency almost always cuts in half. This drug has done more than any other in helping Cyrus to maintain even his limited seizure control.

Levitiracetam (Keppra) turned his never ending grand mal (tonic clonic) status seizures into short partial seizures. His first grand mal lasted at least 90 minutes before the ER personnel managed to break it. His second lasted just over 70 minutes. He's never had one nearly that long since we added the keppra. And when he started having multiple seven, eight, ten minute seizures in a week, we simply increased this drug with his growth spurt, and he started having partial seizures instead again.

Onfi (Clobazam) brought back Cyrus's smiles and laughter after four months consecutive months without. It does also seem to control the partial seizures better than anything. If he's having a bad day, we give him this dose just a bit early. But seriously, this stuff brought back his personality - who cares about seizures?!! (I might, but still!)

So the idea of taking any one of these drugs out, to replace it with something else that might work better, but also might do nothing for him - that's simply terrifying!

I thought there was some protocol I didn't know - some reason that we couldn't add a fourth. This confused me because I know of several children with intractable seizures that are on four, and there was even one case of five. So I asked her about it. She almost laughed. She said that there was not a protocol or rule - simply that the longer he took a medicine and the more medicines he took, the higher chance he would develop some significant side effects. We can still add a fourth if he's having bad clusters again (which by the time of the appointment, he wasn't anymore).

In general, the anti seizure meds are all sedatives. So, they may keep him zoned out and calm. But see, seizures do the same thing, except only a million times worse! After a seizure, his eyes are so glazed - you can tell that he's lost. And without any meds he would never stop seizing. I honestly don't know how different he would be if he was without both seizures and without the medicine. That's never been a possibility. So, I've honestly never cared about the sedating side effects. If anything, his meds seem to make him overall more alert if only because his brain works better with less seizures!!

Sabril used to be illegal within the United States, banned by the FDA because it causes peripheral vision blindness in a third of those who take it. Of course a never ending seizure is worse, and so the FDA eventually, changed their minds on this. Every shipment of it we receive comes with giant warning labels that there's no way to predict when peripheral vision blindness will occur. In order for Cyrus to continue taking it, he has to be seen and checked by an ophthalmologist regularly. He said that he always advises patients to be on it for as short a time as possible, but that anyone who is on it generally needs it for issues far more concerning than peripheral vision, so... and then he shrugged.

And I've never really worried about it. As the doctor said, we don't really have a choice so if the cost is his peripheral vision, that is the cost. The alternative is for him to keep seizing until his body can't handle it anymore.

A few months ago Cyrus met with a dental hygienist. She came from a practice that visits his pre-school specifically and they specialize in working with special needs kids who don't cooperate when you tell them to open their mouths. She counted how many teeth he currently had, how many were erupting. Told us that his teeth were very clean and that she wanted us to start using fluoride toothpaste. She also explained to her partner that he was taking one or more medicines that were staining his teeth blue.

I somehow hadn't noticed this, but after it had been mentioned, I could see it. And boy does it bother me! He has two teeth that are for worse than the others and honestly it looks more grey to me than blue. Blue would at least be kind've cool! And that night I noticed the angle I held his head and the angle I inserted the medicine - I could see exactly how those two teeth were more affected. Cyrus even helps. You place the oral syringe at the right corner of his mouth and he opens it immediately. He knows what's coming! And he gets a little bit at a time, about 2 mL - aimed from the right to the inside of his left cheek so that it doesn't spray the back of his throat and send him into a coughing or gagging fit. This also reduces his chance of aspirating the medicine accidentally.

My method doesn't change, but now I see it all the time. And it bothers me. And it bothers me that it bothers me! Like it's such a superficial cosmetic thing. Why is it so easy to shrug off potential peripheral vision blindness and yet obsess over stained teeth?! Am I that shallow?

Maybe. I honestly don't completely discount the possibility.

But maybe it's also because I can actually see it happening.

And there's nothing I can do about it.

General Update: 

In other Cyrus teeth adventures, we are working on learning how to chew food in OT. We wrap some food in a bundle of organza (silk based mesh fabric that is apparently safe and non toxic, so can be put in the mouth) and we place it in the side of his mouth - to one side. We're trying to get him to practice chewing on the food, which will release some flavor, but we do not have to worry about him choking on food particles that are too big. We also want to see some lateral tongue movement. Typically right now, Cyrus moves his tongue forward and backwards to move food around in his mouth. We're trying to teach him that there's a whole second axis of motion - side to side! So really, we're teaching him physics!! Haha!

The other amusing anecdote of the week is that this child managed to spit up a bit without my noticing, and then fall asleep right in the mess, and he woke up with it everywhere. I tell you he gives me sleepy smiles, slurs his speech, he's incredibly wobbly, he can't walk, and he's sleeping in his own sick! What am I to conclude other than taking care of babies is a lot like taking care of drunk roommates.... haha! 

But he did reach a bit of a milestone a few nights ago! He fell asleep on his own without any addition of melatonin and he slept through the whole night! (Usually, if he falls asleep without the supplement he wakes up at two in the morning wanting to play!) So maybe this suggests we may eventually be able to wean him off of it. Though the next night he was wired and definitely needed the supplement. And I'm not sure if it matters if we can't - he's on such a low dose. 

And he's been making this angry face when he's unhappy with me. And I just can't help but laugh. He's just too cute when he's angry. Does that make me a horrible person??? 

In general, he's doing really well - stained teeth and all! He's getting so big so fast and it's a little crazy to me how much he's starting to look like a child rather than an infant. We hope you and yours are enjoying and appreciating life as well!