Wednesday, June 21, 2017

Ryan - the latest + episodes

I started this post about Ryan and had it in my drafts. Before I even got around to publishing it to the blog though, I did have an bigger update I needed to post about.

Ryan had 2 seizures in the last week. Both were "minor" and did not require a hospital visit, but they scared us, nonetheless.

First was last Friday, the 16th. He was on a field trip to the zoo with his special needs school. I was traveling last week to Buffalo and was on a plane, about to take off, just before I put my phone on airplane mode, and got a call from Ryan's school nurse. She said that he had a seizure that lasted approximately 60 seconds and that he was fine. She thought it may have been induced by the heat as it was an extremely hot day. You may remember that one of Ryan's anti-seizure meds does not allow him to sweat much, and sweat is your natural reaction to cool your body off, so he can get overheated more easily than most people. I asked her if Thomas needed to come pick him up, but she said he was fine and seemed back to normal and everything was OK. I immediately reached out to Thomas to update him and had to send him a few texts before I had to turn my phone off and our plane took off. Thomas had Fifi go pick Ryan up around 2:00 that afternoon and bring him on home for our mental well-being. He was fine and acting like himself. Luckily, Fifi was here staying while I was out of town so it made it super helpful to have an extra person here in these types of situations. I made sure to call the neuro office to let them know about the episode. We chalked it up to Ryan being hot at the zoo and just kept a close eye on him all weekend.

On Saturday and Sunday, we went to the pool both days and paid close attention to Ryan and his needs. We made sure we put him in the pool any time he looked like he was getting too hot and all was fine. He had a perfectly normal weekend at home with us.

Monday morning, however, he slept in a little later than usual and when I went to wake him up to start getting ready for school, he didn't seem like himself. He was still in his bed, and his eyes were open, but they weren't looking at me or focusing on me, despite me calling his name and trying to get his attention. That's not totally out of the ordinary, but I was on high alert after his Friday seizure and was paying extra close attention. He was blinking and looked fairly normal, so I decided to pick him up to try to tell if he was seizing or just extra sleepy. When I picked him up, he did not display head control, and that's when I knew that it was definitely a seizure. I took him over to Thomas to take a look and then I put him on my bed so I could watch him and make note of the time to see how long this seizure would last. After about 3 minutes, I called 911. I spoke with the operator and they disbatched paramedics to our house. While I was on the phone, his seizure ended and he came to. It was about 7 or 8 minutes long, to the best of my knowledge. When the seizure ended, he was a bit groggy but still the same old Ryan. I want to reiterate that his seizures do not look like what you'd expect from a typical seizure. It's really just a lack of muscle control (meaning he's limp) and eyes that won't focus or look at me. There's no shaking or violent muscle seizing, which may make it harder for someone that doesn't know him to tell that he's experiencing a seizure.

The paramedics came about 20 minutes later and just talked to us. They did kind of a visual assessment and asked us questions and offered services. We did not send him to the hospital since his seizure was over and he was fine.

We kept Ryan home from school, obviously, and both Thomas and I took the day off to be with him and keep an eye on him. We were a little rattled. After several calls to the neurologist's office, Thomas was finally able to talk to Dr. Taft. He stated that there is no need for an office visit, but just that it's time for a change in Ryan's anti-seizure meds and told us to increase the dosage of one of the meds Ryan takes daily. We've known for a while that this current combination of medicines, while it has worked since December 2015 after Ryan's last seizure, it wouldn't work forever. As Ryan grows and changes, his medicines will need to change with him. Unfortunately, we won't know it's time for a change until they stop working and he starts having seizures. The two seizures that happened within the last week was the warning sign for us to make a change. The increased dosage is a minor change and we're hopeful that it will do the trick for us. If not, and if we see more seizures, we'll go back to the drawing board and talk with Dr. Taft again. We may be able to increase dosage even more, or think about changing medicines. The goal is to keep Ryan seizure-free for as long as possible, on the lowest dosage that we can and with the medicines that have the fewest (or least impactful) side effects.

While I was sad, scared and heartbroken about Ryan's two seizures, I'm also very, very grateful that the extent to which his seizure activity is limited. He hadn't had any a year and half. They are well controlled with his medicines, and his meds have relatively few side effects. To put it in perspective, there are some kids that have hundreds of seizures every day and can't find meds to control them. We're lucky and fortunate that Ryan's seizures have been relatively easy to deal with, in the grand scheme of things. Ryan is a blessing each and every day. He is truly an angel on earth and anyone that is around him can see what a sweet, loving boy he is.

Post-seizure snuggles with Dad on Monday...

******************************************************************************'s the post from my "drafts" that was waiting to be published.

I realized that I haven't posted much about Ryan lately. My posts oftentimes are, "Stokes and William did this..." and "Stokes and William did that...". They are, of course, more active, and into more things, but Ryan hangs tough with them and goes along with everything. He is so laid back and just sweet as pie.

Last year around this time, he was drooling a lot. He didn't use to drool, and I'm not sure what brought it on, as I don't think he was getting any molars or anything like that. He had already exhibited that he had enough mouth control, since he wasn't always a drooler. It's still a mystery, but the good news is that after month and months of wearing bibs and changing t-shirts, he seems to have magically gotten better. Not that doesn't ever drool now, but he's definitely not soaking shirts any longer. He's no longer wearing bibs either. I'm thankful. :)

Ryan struggles with balance. He can't stand up without holding on to something. He tends to fall forward when we work with him on standing unassisted. But when he has something to hold - my hand, the coffee table, anything - he can stand for a long time and cruise. He's gotten good at walking while holding my hand(s) and he's getting faster. He likes to hold both hands, but sometimes I'll only let him have one and he'll walk a little that way.

In addition to walking, one of the newer things that we've been working on is going up the stairs. He used to not be able to lift his foot high enough to step up onto a stair, but now, I'd say over the last month or so, he's really made some improvements! I'll tell him, "Ryan, take a BIG step", and he'll put that foot on the step. I help him to shift his weight so he bears weight on that foot and then he'll bring the other foot up. He used to only be able to do it once or twice in a row, but now I can get him to walk almost all the way up our flight of stairs in our house while I hold his hands and help him shift his weight.

He's a great crawler and and it has gotten more into muscle memory than having to have focus on the actual movement of crawling, so he will pay more attention to us than he would before. If he's crawling, and I get his attention, I will ask him to come towards me and he'll just grin and start crawling like a madman towards me. Things like that are so rewarding to know that we're getting through to him, and he understands and wants to continue to make progress.

There are no updates on meds or therapies. His last neurology appointment was very straightforward and was essentially just a check-in, touch base kind of appointment. We've signed him up for two summer school sessions as his special needs school so that he can continue to get therapy there throughout the summer. We have a meeting with his teachers and therapists later this month to touch base with them and I'll make sure to post an update after that meeting. We're still putting his AFO braces on his feet/ankles on days that he goes to his special needs school, but he gets a break from those on days when he doesn't go there.

Overall Ryan's been healthy this spring/summer. He's eating well but still doesn't want to drink from a standard sippy cup or regular straw. We bring his honey bear cup with us wherever we go. He's turning into a bit of a night owl. He doesn't act disruptive, but he'll lay in his crib and kick his legs or just lay there sometimes until 9 or 10 PM. Ryan's still not talking or making letter sounds, but is "talking" more, or being more vocal. It's not all the time, but when he wants to make noise, he's doing it.

Ryan's the happiest little guy I know. He's honestly very rarely in a bad mood. Usually, if he's not smiling or easily entertained, then it's because he's tired. He's a gift in so many ways.

In a nutshell, that is where Ryan is right now. 

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