363 days...

Riley has officially been on ACTH and a slightly lower dose of Sabril now since last Monday, 12 days. We started at 40units of ACTH and dropped Sabril down to only 750mg in the mornings and still 1000mg in the evenings. Going off of that too quickly could create unwanted and new seizures. He had spasms roughly once or twice, that we saw, every other day the first week. 

This week has been much tougher because he caught that lovely stomach bug that's been going around. The dr says that the stress on his body while sick can create more spasms, which it has. It spiked pretty good Tuesday night through yesterday. To the point that watching him go through this, started to worry me, and I've seen him have them for awhile now. Speaking while his dr's office I was reassured that his body is fighting both being sick and the spasms and is just having a hard time finding a balance and get rid of the bug. Due to the activity of his spasms, we doubled his ACTH dose yesterday to 80 units, and stayed the same on Sabril. He slept a lot of yesterday away, which was a blessing on me as he gave me his bug, which did wonders in getting rid of both of ours. He hasn't had quite as many today, which is starting to make me feel a little better. And things are finally set for his additional testing at children's. I should be hearing them hopefully Monday to schedule his MRI, spinal tap and blood draw for labs, all in one swoop, thankfully.

He's still going to be adjusting to an increased dose in meds for a few days I'm sure, so his mood and schedule will probably be completely random this weekend in celebrating his birthday. But we have much to celebrate. That he's feeling better and won't be sick on his bday. That the double med dose may (and I stress that may, as he's only been on it two days) be helping to knock his spasms back down. That our family and friends are starting to arrive in town to help us celebrate. That despite the stress, struggle and frustration that some of this last year has brought us, it has also brought us joy, laughter, excitement, and so much love in our baby boy. His smiles (with two little teeth popping through) melt our hearts and couldn't be more proud to be his parents. Happy (almost) Birthday monkey, Mommy and Daddy (and Sadie) love you so much.

Bye Bye Sabril, Hello ACTH

The past few days have been tough. Accepting the reality that there is something "wrong" with my child, has been tough. Talking about it has been tough. Hearing results of tests and it equaling more tests, has been tough. Having a planned and much needed vacation to see my family and have that ripped away is tough. This past year has been filled with so many joyful emotions of bringing Riley into this world, watching him grow, smile and laugh. It’s also been filled with many emotions of struggle, frustration of not having specific answers about why he’s struggling, stress about how he’s behind, fear of how his IS is directly affecting him cognitively, the wonder of bills, and now rather than me returning to work pretty much as soon as possible, having that put on the back burner to be with him as he changes medication.

I've decided I HATE walking into his neurologist’s office and waiting in one of the examination rooms for him to come in, because it is pretty much always news I don't want to hear. Results from the VEEG are good, just not good enough. The medication (Sabril) that he's been on the past 6 weeks or so, has substantially lessened his spasms (seizures), but not stopped them completely. So his EEG was significantly better, but he still had several noticeable spasms and other activity. Since we just can't sit at the top dosage of Sabril with it not completely stopping his spasms, it's on to plan B. We will be weaning him off that and will be starting, on Monday, a hormone injection, ACTH (similar to prednisone but specifically for kids with IS). We tried Sabril first because it is oral, cheaper and less bigger side effects. Since it's not doing the trick, on to injections, where we will have to bring him in every day to have until we learn to give them from home, bigger cost and bigger possible side effects. Those side affects being, weight gain (will increase his appetite), irritability (can range, hopefully he won't be on the extreme end), high blood pressure (will have to be monitored regularly by his pediatrician), and a suppressed immune system, among other things.

The suppressed immune system is by far one of the biggest downfalls to this medication. We have to be EXTREMELY careful while he's on this drug, and hope it does the trick as soon as possible. Means our NC trip in four weeks is cancelled, as we can't be in a tiny space with him 38,000ft in the air with god knows how many sick people. Means the thought of me going back to full time work soon and putting him in day care is now on hold (so we have to figure shit out financially). Means anyone who comes in contact with him, we have to be super careful they aren't sick themselves or been around anyone who has (or had) diseases like chicken pox, measles, etc. His body can still try and fight some viral stuff the common cold and flu, it will just be harder. Viral stuff like the above and bacterial stuff is much harder and he will be prone to, which we don't want on top of everything else. As you can imagine the amount of people that we have coming to his 1st birthday in a few weeks, we still want to celebrate and not let all this ruin it, but have to be very careful. 

So, between not knowing the actual source of his IS (which thankfully is still just IS, and not another form of seizures), and not having more definitive answers on his muscle problems, we have soon upcoming further testing....yay? His neurologist wants to do within the next week or two (so before his bday), an MRI, more blood work, and a spinal tap. All of which could help give us more answers for either or both. We’re pushing to have all done at Children’s, which they are still working on scheduling, so we’re looking at sometime the week leading up to his birthday probably. There are so many different things he's looking into; he'd scare the crap out of us going through each individual thing. And as we get into the ACTH injections, eventually he will have another 24hr EEG to see how that's affecting him, like he just had with the Sabril.

As you can bet we are still super overwhelmed and stressed, trying our hardest to take this one day at a time and not look too much into the future freaking out. This smiley happy little boy is our world and that means his health comes first and life later. We are greatly looking forward to celebrating his birthday here in a few weeks, taking the break from all of this to enjoy time with family and friends. 

Hospital admitted, beginning of 24hr+ VEEG

VEEG day 1, physical and emotional exhaustion. I'm sitting here in the dark on my phone while I wait for the munchkin winds himself down to go to sleep and look back on how long and how quick of a day it's been. Checked in at 8am, he had all his wires come in around 9am and took a good hour to get him all set to go. He tolerated it at first and after about half way through he started to get pissed because he had to be held in place and it was just taking so damn long (by his standards of course). Of course as all was said and done, he'd had enough and decided to pass out for three hours. 

Throughout the day he way pretty good considering his head is attached to tons of wires, all wrapped up. Not to mention the several on his arms and chest. You can tell he's a little sick of laying on bed, but who wouldn't be stuck in the hospital? I'm sick of being just stuck in his room, and I'm able to get up and walk around. We have to keep him in view of the camera recording him, so that limits him to his crib, or his stroller (in front of the crib) so he can eat solids, or in our arms on the chair (also in front of the crib). I write this all as he starts to jabber away again not wanting to go to sleep because he's stuck in his crib that I won't let him spin in, and he also napped most of the day. Hopefully he sleeps in for me tomorrow? 

They say both parents can stay the night, of course the only sleeping arrangements supplied is a long window seat to sleep on. I knew the chair wouldn't work for Chris, so I'm being nice and he gets to sleep at Aaron's while I'm here. Waiting on my morning coffee and long break from this room already. Both he and my mom have been wonderful today. Mom came with me this morning and stayed all day until Chris got here after work. Chris was very attentive and helpful while here and insistent I get out a bit tomorrow. Yet that's a little hard for me to do, not only being his mom and not wanting to leave his side; but knowing something is still happening in that brain of his. I saw it this afternoon and had to hit the "seizure button". Being here in the reality of it and knowing the reality of the results will be given to us tomorrow, still not sure if I'm ready to deal with. Who would want to anyway? Till tomorrow I guess....