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! 

Learning How to be an Advocate for my Son

I often feel incredibly inadequate to be the representative and advocate that my son needs me to be.

At his next IFSP (Individual Family Service Plan) meeting in August, we are supposed to begin discussing his transition to an actual IEP (Individual Education Plan) for when he turns three. At this time his special education services truly become focused on education (The IFSP services often also have a medical focus) and his services are provided by the school district. And I have felt so ill prepared!

This was probably highlighted for me during one of Cyrus's visual therapy sessions where his EI (Early Interventionist) was explaining Cyrus's history to someone who was shadowing her that day. She commented quickly to her companion that Cyrus had initially only received one service when he first qualified. And she said this in a tone of total disbelief, but so casually in passing - she most likely had no idea that it struck me so deeply.

In that moment, I didn't feel angry or cheated by the Regional Center who provides Cyrus his services. Instead, I just felt guilty and inadequate. The fact that she, an educator who is familiar with the world of severe pre-school eduction, thought my son needed more than he had initially been given, suggested to me that I had somehow failed to advocate for his needs.

But I also did not know how to go about changing this dynamic. I simply don't know enough about special education services to know what is out there. Even as a teacher, I'm very familiar with what services a child might receive within a classroom, but outside of that context, I know very little.

And I keep trying to rectify that. I've been asking questions since our very first meeting. "What does education even look like for a child with severe limitations like my son?"

"Well, that will depend on how much progress he makes and what he needs when he's three," was the calm and soothing answer.

Except I was not calmed or soothed. I am a teacher who has sat in on dozens of IEP meetings. I know exactly what that means. Essentially, you can't actually answer my questions less it be perceived as you promising me something.

But here's the thing. I wasn't asking for any kind of guarantee! I really am curious! I want to know. What the hell does education look like for a kid who will likely remain nonverbal? Who may not even learn to stand, let alone walk? What do you try to teach these kids?

I let it pass, figuring I could ask my own special education friends, but the thing is, I really only know the ones who work with the mild and moderate students! And they know more about high school for some reason.

In our last meeting, I pushed harder, which only resulted in Cyrus's case manager admitting that she could get in trouble for talking about the district. (She doesn't work for the district and we are pre-school aged).

I just felt so frustrated! And more than a bit paranoid as I've been coached before IEP meetings when administration was expecting a difficult parent or a sensitive situation, to not bring something up, or to reinforce a certain conclusion. I have never been part of a meeting where I felt the school didn't have the child's interests in mind, but I suddenly can empathize with the frustrated parent who is not being given the full picture.

Because it really feels like the system is designed to keep parents in the dark so they don't know what to ask for. But how am I supposed to decide whether to send my son to an SDC class or insist he be put in the county program if I don't really know what the difference is? How can I truly advocate for him if I have no idea what's out there, and the one person who is an educational expert on exactly what that education looks like is not allowed to tell me?!

This dynamic is incredibly unhealthy in my mind. This whole systemic situation tilts the relationship between parents and resource specialists/case managers more towards the adversarial side. And I think this no doubt results in more lawsuits - there are more parents convinced they are not getting the best deal for their child.

And I know that neither of these parties actually want it to be that way, but since everything is surrounded by legal documents and limited budgets, we all have to become skilled diplomats negotiating peace between two parties that want peace, but always expect to be stabbed in the back. When it should be a group of like minded natural allies who trust each other implicitly, truly working together for the best interests of the most vulnerable amongst us.

When faced with the uncertainty, I did what I always do: research! But my findings were mostly unsatisfactory. Public schools have almost nothing posted about special education. If something is there, it's about how to refer your child for testing, and there's nothing on what potential services are available. I have found private schools that have beautiful marketing pamphlets that basically say the same thing the resource manager said - that they create individual programs to meet children's needs. But do they give any examples or specifics on what that might look like? No! 

And I have found so much on the law, which says the school must provide a free and appropriate education and what my rights as a parent are, but it doesn't define what that means for children of different ability levels either (that's probably a good thing because what that is no doubt changes with new pedagogy and technology).

But I did keep getting a consistent piece of advice from Cyrus's case manager (which is how I know she really does want to help however her hands may be tied), his teachers and therapists, my own colleagues, and on the internet. Talk to other parents.

I didn't really appreciate this advice. I don't want to go to a parent group. I have a hard time socially navigating large groups if I don't already know most of the people there. And as the stereotype introvert, going to a group weekly - or simply often enough, to make yourself friends is just anxiety producing for me.

Luckily, a parent of one of the students in Cyrus's class insisted we join her in an informal mommy group anyway, just to try it. I actually already knew two families in the group and they only meet once or so a month!  And goodness knows, if we have to flake at the last minute due to a bad seizure, this group will totally understand! We've been exactly once! There were only five families there, so it wasn't overwhelming at all. Everyone was so warm and welcoming. But more importantly (at least this time) they were fountains of information!

I learned some of differences between the typical SDC class (though they change from district to district and year to year depending on needs) and the county program (which typically has students with more complicated medical needs with multiple nurses on hand). We learned that there is summer school for special needs students, but that it's only a month long, so there's still a month off where we can make our California grandparent/aunt/uncle circuit each year. I've learned that I can request to observe a class before we agree to Cyrus's placement, and that his transition meeting will probably have a dozen people there, and not to feel intimidated. (As if!)

We learned that the Regional Center and County actually have three different programs to help you take care of a disabled child: 1) Subsidized Day Care, 2) Respite (someone comes over to give you a break), and 3) In Home Support Services (we actually knew about this one ourselves from a co-worker and were able to give this information to others!)

And CCS (California Children's Services) not only provides Physical Therapy and Occupational Therapy, but they also help you get mobility equipment! We thought we knew this as they helped us get Cyrus's wheelchair and bath chair, BUT we learned they also have a program to help us obtain and/or modify a van to be able to transport him! This would be amazing for us as Cyrus is rapidly outgrowing his current convertible carseat and I was trying to figure out how to afford a minivan!

I learned more in this hour about our local school district and educational county office than I did in eighteen months of prior searching.

So maybe now, I'm feeling a little more confident and a little more prepared. Yay for parent groups! I'm excited for our next get together!

...

General updates: 
Cyrus's seizure activity has changed once again. He now seems to get an "aura" beforehand where he knows they are coming, because he will literally freak out in what I can only describe as a panic attack. Not all panic attacks result in a tonic clonic seizure, but all seizures seem to be preceded by a panic attack. His neurologist told us that the panic attack itself probably has abnormal electrical activity and may be a focal seizure. Watching him terrified is hard, but the one benefit is that we have a few seconds of warning and can make sure he's in a safe position and have the emergency meds on hand. The other good news is that the constant status events I described in my last post have really tapered off to almost nothing. His seizures now, are still every couple of days, but they have been very short, and far less scary.

In far more exciting news, Cyrus has grown increasingly social! He has shown preference for wanting to play with a particular little boy at school who is a bit older than him. Seems to be happier when he's around. He will respond when you rub his head or talk to him. When he's not teething (he's been teething a lot, but we're down to our last two molars), he loves life - he's full of smiles and giggles at the slightest provocation! And when he is teething, he consistently communicates his displeasure.

His head control, that was so gorgeous in January, but then disappeared, seems to be coming back as well. He has developed a new extreme hatred for baths and sitting in his carseat. And he has grown so much that his wheel chair had to be adjusted.

Cyrus has also been approved for In-Home Support Services, where we can hire a person to come take care of his irregular needs (things that a typical two year old wouldn't need). And in the case where one of the parents is not employed full time, you can just hire yourself! So Kyle is now going to get paid about two or so hours a day to give Cyrus physical therapy, medicine, and feed him - you know, the things he does anyway! Two hours is not a lot, but apparently Cyrus's number of allotted hours will go up as he gets older and every little bit helps!

There's a lot to be grateful for.

Where is Cyrus? 

A Week in the Life of Cyrus Lee

The Sun King on his throne!

Cyrus and I got to spend a lot of time together this week as I took on Kyle's routine and errands. This was a double win as it let me spend more time with Cyrus and let him spend more time on his passion project. I spend a lot of time wondering what goes on in his little head - what he makes of us, of the world around him. And this account of our week together explores that idea from his perspective rather than mine. It was an interesting exercise from a writer's perspective.

All names of children have been changed to protect their privacy on my very public blog, and for this same reason their faces are not shown even though they are all preciously adorable. This post pulls no punches. It shows the progress, the fun, the scary, and the ugly bits of Cyrus's daily existence with lots of pictures and a few videos that will definitely show up if you're using Chrome (I make no other promises for other browsers as I've had trouble with it). We hope you enjoy it!

Saturday
I have a best friend and I will call her Heather. She is in my preschool class and she makes me smile. Today, I was supposed to go to her birthday party at the Magical Bridge Park, but it was raining again! I say again because this is the second attempt at having a party and it was raining during the first one too!

I suppose it was just as well, as I wasn't in the best of moods for most of the day anyway.

Sometimes, doing nothing is best...

Sunday
Today, I got to actually go to a birthday party! This one was for Lily! Lily has come over to play a few times and she's fun to watch run around. She turned two, so she's the same age as me! When we arrived we didn't get out my wheelchair. Instead, mommy carried me in! I ride outward so I can see the world. And sometimes she stomps while making funny noises. This often makes me laugh. It's definitely my favorite way to travel!

There were so many children at the party! Lily has so many friends! I was honestly a bit overwhelmed at first and mostly stayed in the front room where there were less people, but Lily still came and sat with me for a bit. She even lent me her colorful quilt with different textures and animals so I could roll around on the floor.

The theme of the party was kitty cats! 

My favorite part of the party was when we sat in a circle and sang songs! I knew many of the songs from class, but there were new ones to learn and enjoy. Everyone singing and swaying made me smile.

And then we sang happy birthday! I have heard the song happy birthday before. I just had my own birthday party a few months ago after all, but do you know how cool it sounds when like thirty people are singing it? It was amazing!

Anyway, after the party, I went home and took a really long nap.

Had too much fun today!

Monday
On Mondays I go to Occupational Therapy with Joyce. She works with me mostly on feeding and how to use my hands. Today, we worked on holding on to the ropes of a swing. I've gotten much better about keeping my grip and pulling on the ropes anytime I lose my balance and start to lean or fall in a certain direction. My ability to keep my head up is starting to come back too.

Gotta hold on!

Then we raced toy cars on tracks to see which car would go the fastest down a spiraling ramp. I was in charge of starting the races by pulling down on a lever. The green slug bug always won no matter which other cars we raced it against.

The last exercise was to fish out strands of Mardi Gras beads from a bucket of rice. We tried putting both my hands and feet in the rice, but it was too much for me. I didn't like so many sensations at once. I ended up just holding onto the beads really tightly while Joyce pulled them through my hands.

After we got home, I had to go get some lab work done. About a month ago I was diagnosed with a pretty severe vitamin D deficiency. And since then I've been taking supplements. So today's lab visit was a follow up to make sure my levels have gone back up. My doctor figured that since I had to go to the lab anyway, she would check other vitamins too. The only problem was that she ordered more tests than can be done on me at one time because I'm only 29 pounds. In fact, the tests have to be split up across three different trips. This was the second one.

But the weather was so nice and the lab was actually not at all far away, so we walked. I even liked being outside! I'm often pretty photosensitive and I can't stand to wear sunglasses. I have learned to just shake my head back and forth until they fall off. But today it was just warm enough and there was a nice breeze and mommy likes to drive the wheelchair like it's a carnival ride so I was having fun on the way!

The actual lab work wasn't that bad either. I squirm a lot, but I don't actually mind the rubber band around my arm or the prick of the needle. I just don't like to hold still! But I didn't cry or fuss at all.

Then we got to walk back home, which wasn't as much fun as the way there as the sun was in my eyes this time, but that's okay.

Tuesday
Tuesdays and Thursdays are my favorite days of the week as I get to go to preschool! At school we spend fifty minutes in the motor room working on motor skills followed by another fifty minutes of circle time where we learn how to socialize and communicate. I was so excited that I woke up an hour early!

Nicole is my teacher and she is the best person in the world at understanding me. I mean, mommy and daddy have learned what I like and dislike, and they are pretty good at guessing what is going on most of the time, but Nicole asks what I want and even waits for me to answer. She knows that I need like 30 seconds of processing time just to understand the question. Then I need more time to figure out how to move my arms and head the way I want them to go to answer.

Nicole is the best!

She does this by showing me pictures. She started last week with a blank white piece of paper and a picture of some lines. I didn't look at the white paper for very long. I mean, who would? There's nothing there! Boring! The lines were a bit more interesting. But just a bit! So then she took the blank paper away and put up a picture of a face. The face was clearly more interesting than just a series of lines. The lines didn't even look like anything.

And finally, she started showing me pictures of activities that we do in the motor room. She put a picture of the swing beside a picture of the ball pit. She then told me to tell her what I wanted with my eyes. That takes awhile, but Nicole knows that so she will wait. I chose to swing on the swings. I choose the swings every week! They are the best, you get to get thrown around and the swing doesn't complain that it's tired or sore and you get to swing with a friend!

Except today my classmates were all late, and I was all by myself. Well, Cho was there! She's in physical therapy at the same time I'm in class, so we often share the motor room together. She was actually really interested in what I was doing on the swing and came over all by herself, though Vicky - her physical therapist - was ready to catch her if she started to fall. She came over and started to help push me so I could go higher. I love going higher and faster! She smiled and pat me on my tummy. She kept pushing me until I accidentally hit her with my flailing arms. I didn't mean to, but they are hard to control.

Then she was upset so Vicky distracted her by taking her up to the top of the slide. When at the top she likes to wave at us on the ground. When we wave back she gets excited and claps.

Then we moved on to the ball pit. It's not my favorite, but I'm getting better at getting the balls off my face by moving my head back and forth until they all slide away. And I do get to spend more time with Nicole while in the pit.

Once we're done in the motor room we have to go to our classroom, which is on the opposite side of the school. We do this in style by racing up and down the hallways on wheels! I used to ride in a laundry basket that was sitting on a rolling board, but in the last few months I've outgrown the laundry basket and have graduated to a scooter board! I tried riding it on my tummy today and I loved it! Nicole, though was worried that I would just roll right off it without a seatbelt or anything. This is probably my second favorite way to travel!

Scoot board races!

Then it was circle time, which was made better because two of my friends arrived: Heather and Laura. We always start by taking attendance, which we do in song! Nicole will ask who's at school today then hold up a picture of one of us and we have to tell her who it is. I do this by pushing a big yellow button that will play my name if I push it. I've gotten a lot better at pushing the button at the right time. Like I wait for her to ask the question before I push it. And when it's my picture, I have to help put my picture on the board by pressing it up against a velcro wall. I've gotten better at getting my hands in the right place to do this.

After introductions we sing three songs. Our songs stay the same for a month and then we get new songs! This month we have Twinkle Twinkle Little Star and Mr Sun, Please Shine Down on Me. Both of these songs have hand motions that go with them that I don't really have down at all, but I like to flail and kick with my legs. For the third song, The Little Teapot, we get out of our seats so we can dance with the whole body. I didn't like this one as much because I get tipped over sideways when it's time to pour out the tea and I had to learn to put my arm down to support myself. I am getting better at that too, but I didn't like it today and started crying. Mommy had to comfort me before I could go to snack time.

The last part of Circle Time is a fun activity before we sing good bye. This time they brought in giant exercise balls. We sat on top of them and bounced or leaned on them to put weight on our arms and legs. It seemed a lot like physical therapy, which made it less fun. I sighed a lot. Usually the ending activity is way more fun. Sometimes we get swung around in blankets or we play with bubbles. Laura loves bubbles.

How is this exercise?!

Shortly after we got home, I felt a seizure coming on. I don't know how to describe exactly what it feels like, but it scares me. My head and eyes dart every which way trying to find comfort, my arms and legs flail, and I feel like I can't breathe. But nothing calms me down. Then everything went black. When I woke up six minutes later, I felt so tired, dizzy, and sore. My seizures have been getting worse lately. I've had three really bad seizures in the last two weeks or so, and this one was the same. I had to get the emergency medicine. I can tell because it makes me feel weird and definitely sleepy.
I tried to sleep it off before Linda arrived.

Recovering from a seizure

Linda is my Early Interventionist (EI) and she visits me once a week at home to help me with my overall progress. Generally, she works with me on my visual coordination. She's also really patient, and is able to discover that I can do things before almost anyone else because she watches me so closely and gives me only the barest and minimal amount of aid. Today, she worked with me in the stander and with a flashing wand to practice visual tracking. I was slower than I usually am because I was still feeling a bit loopy, but I tried hard. And she understood.

Wednesday
Wednesdays are supposed to be my day off,  but mom wanted us to go to the Magical Bridge Park since we didn't get to go on Saturday. Magical Bridge Park is an inclusive park that has some really neat things for people like me that have trouble getting and moving around. The merry-go-round is flush with the ground and you can roll your wheelchair right onto it. Their slides and playhouses are all wheelchair accessible too! And their swings completely enclose you, though they don't have quite enough head support for me.

It really was not the best day for me though. We arrived right when I was hungry and it was so windy and also so bright! I'm really photosensitive and can get a bit overstimulated. And there were so many children there even at 1 o'clock in the afternoon running back and forth. I guess they were on spring break like my mom. But we got to learn everything the park had to offer and if we go again on a morning when there's less people and maybe I can be convinced to give sunglasses another chance, I would probably like it. At least the merry go round because if there's one thing I like, it's spinning in a circle really fast!

Back at home I spent part of the afternoon in the stander and daddy made it more interesting by putting the yellow switch we use in class on my tray. Mommy changed the recording to a song we sing in class too. I am getting better at keeping my head up and I am getting more precise with the button. I was able to push it with only one finger!

Here's a video:

Wednesday is also bath day. I hate baths especially since I outgrew my toddler bath insert, and now have to use the bath chair. The bathchair is a blue waterproof mesh chair that has straps and indents to help me sit the right way. It also imprints little bumps on my legs and my back. And we recently installed a removable shower head. It's the worst! There's so much spray - I try so hard to get away from it completely. I guess I don't hate baths - I hate showers! But we don't have the equipment for me to take baths anymore. But that won't stop me from fighting tooth and nail to not take showers!

Thursday
I woke up excited today as well! I had trouble eating breakfast though so we were running about ten minutes late. This ended up working out as Heather and I got there at the same time! We got to smile at each other in the waiting room before heading to the motor room together. Lupita was there today and the three of us rolled around on a tilted platform saying hello to each other. We then bounced on tires before heading to the swing. I got to swing with Heather, which is something that always makes me smile. But the swing only fits two people so we had to take turns. Mommy kept me pretty occupied though when I had to wait.

Nicole wouldn't let me ride the scooter board on my tummy today. I had to ride on my back today, which she says is safer, but I don't think it's as much fun. You can't see where you're going!

This is safer... and therefore, not as much fun.

During circle time, my teeth really started bothering me. My last set of baby molars are coming in and they are taking forever! In class, I remained unsmiling, sharing only occasional winces, and refused to participate by pushing signs or buttons even when it was my turn. Even the songs and dancing weren't enough to grab my interest. Until the Little Teapot. Then suddenly, the movement I hated on Tuesday, was enough to distract me from my pain and I really liked it today!

This is a wince... not a smile. Though many mistake the two.

For snack time we had Cheerios, veggie sticks, and apple sauce. I mostly just played with the pieces by swirling them around in the sauce as I cannot eat solids yet. I did have a fruit puree though, which I thought was good!

To play or to eat? That is the question!

They brought the exercise balls out again, and like the Teapot song, I really liked it today and had lots of fun bouncing up and down with Nicole! Usually I get stressed the first time I try anything. But when it's more familiar, and I know what to expect I enjoy it more. I guess that just means you should be willing to try things twice!

Okay, this can be fun. 

I went home and rested a bit, but then I had another seizure right before my afternoon dose of medicine. I guess the one advantage to having panic attacks is that mommy knows that a seizure is coming and is right next to me holding my hand before it strikes. This seizure started like a normal one, but then it got strange. Because on the left side of my body I came out of it very quickly, but my right side kept twitching. It only lasted four minutes though and I held mommy's hand in a death grip through the whole things my left hand definitely still worked. After the seizure my right side was completely limp. I used to have partial seizures like this quite often, but it's been a long time. I was glad to come out of it on my own and was quick to smile. But it feels weird when you're smiling with only half your mouth.

I took a long four hour nap after that, and didn't have lunch until six in the evening. But the rest of the day was so fun! I had so much energy from my rest and mommy and daddy both played with me, which always makes me laugh. Stayed up really late and didn't have dinner until ten. I wasn't tired anyway.

Sleeping off a seizure

Friday
I woke up way too early this morning, but could not go back to sleep even with the comfort of a pacifier. But I didn't want to be awake and made that clear anytime anyone moved me or changed my diaper or anything. But after some breakfast the day was looking much better.

On Fridays I have physical therapy. My physical therapist is Lisa, though Joyce usually comes too and they co-treat me together. Today, Joyce wanted to start by readjusting my wheelchair because I've been growing too fast and it's more snug than is comfortable. But this meant I had to sit in it for that much longer! So many reasons to sigh.

We worked on the swing again today. My grip was especially tight and they had a hard time getting me to let go when it was time to do something else.

Lisa worked with me on a side sit where I have to put some weight down on my side or elbow, not unlike the Little Teapot dance. I wasn't in the best mood though and fussed a lot, and just in general struggled to get away. Lisa is nice though, she'll let me take breaks if it gets to be too hard.

When we came home though and had lunch, I was really active again. Daddy was playing Persona 5, which has really good dance music, so I had a Persona Dance Party on the floor. No one could keep me still. I was having too much fun.

Persona Dance Party:

During dinner time, I felt a seizure coming, but it came too fast. None of us were ready yet. This is the first time I have ever had a seizure while I was eating. This is scary because when you're seizing your gag reflex doesn't necessarily work and if there's food in your mouth or throat your body doesn't work to clear it so you can breathe. But luckily my dad noticed my face turning white and my lips starting to become just slightly blue, right away. We moved to the floor and I was placed on my left side - Mommy had the oxygen ready, but we didn't need it. Before they could do anything more, I had come out of the seizure and started to clear my airway myself! The seizure was less than a minute, suggesting that my medicine changes are helping.

After that I had no objection to going to bed early. I had woken up too soon anyway.

Saturday
Today was a lazy day. We did have to make a trip to Target. I spent most of the time looking at the ceiling lights. They have so many lights!

But the rest of the day was pretty relaxing. I watched mommy and daddy play a lot of games. They played with me by swinging me up, down, and around. I love that.

I took two naps and had no seizures. (It's okay to be jealous of me).

Then I spent the evening cracking myself up for about an hour about things you just cannot understand. At least not yet. But maybe someday. Maybe someday.

It may be upside down at times because mommy was distracted by my cuteness:

Thank you for sharing my week with me. I hope you enjoyed the journey and had a good week too!

What Makes You Smile?

This was the first question Cyrus's case manager asked at his last IFSP (Individual Family Service Plan - the preschool version of an IEP). Her exact words were, "What does he do that makes you smile?"

She's asked this question at pretty much every meeting, and quite honestly it was not a question that I particularly liked answering. Having attended dozens of IEP meetings as a teacher, the question is usually more along the lines of "What are the strengths of the child? Where is he successful?" and so the rephrasing it to the more gentle, "What makes you smile?" felt like an admission that he wasn't going to be successful or have strengths.

But this time, I was only delighted to answer - more than ready to gush about him. The honest answer to that question is incredibly simple. I love it when he is smiling! When he is laughing! I love it! I just eat it up. It somehow never gets old!

So that's when we're moving around and spinning in circles.

Or lately right when I come home and pick him up he will often grin right up at me! This is new!! And it is exciting!

Or when he's staring so attentively and interestedly at another child - usually a classmate or a cousin. Someone that he has come to recognize - he doesn't actually pay much attention to kids that he's only met once or twice.

Or watching his dad play or spend time with him. That never gets old either.

I mean really, this is the laughing giggling side of Cyrus that I wish everybody got to see. The one I feel compelled to share with everyone. It can be a bit tricky though, as usually he is most like this pretty early in morning before we've managed to get to anywhere, or in the evening about an hour or so before bed when we're usually at home again. Throughout the day he tends to be a bit more stoic. It has been suggested to me recently, that this timing may be do to his seizure meds, though I myself had not really made this connection. I just figured he was a night owl like his mother, and morning person like his dad. That the rest of the day was just sort've shrug worthy. Haha!

I don't even know why it is so important to me for others to see him like this. I know that I covet his smiles and giggles more than anyone else anyway. But still, insisting that we try to make him laugh while during visits with others - is my way of showing him off, of taking pride in who he is, or letting others see his true personality.

But Cyrus does not always cooperate.

I even commented to him once, that most people probably think I'm a liar when I say he is so incredibly happy most or a lot of the time because most people aren't around to see it.

And his face split into a huge grin and he immediately cracked up as if he found it incredibly amusing that I had taken so long to stumble onto his evil plan. He was laughing so hard and completely out of no where that I joined in, and then he laughed only harder and we had one of those truly rare times where he was just socially laughing, no spinning required.

And yeah, that just makes me smile!