Resurfacing

These days, we are learning big big lessons.

We are learning that our support system, O’s village, is even bigger and wider than we ever could have possibly imagined.

We are learning all about abundance, and that it is okay to ask for help.

We are learning how to receive and accept that help graciously and with hearts filled-to-bursting with gratitude, reminding ourselves that someday we will find ourselves in a place where we are able to pay all of this forward to someone else who is in need of our love and support.

You’ve (our family and family of friends) all really helped us to keep going when things get rough, and for all of that support that has reached us in the form of hugs and prayers and encouraging words and big and little acts of love and kindness and millions of other ways, we are so grateful. We become more aware each day of just how truly blessed we are in spite of the hard stuff.

It’s been a really long time since we’ve provided any updates, so I’m going to start by ripping some text from an e-mail I sent to a friend earlier this month following O’s most recent 24hr EEG at Children’s Mercy:

We got some great info from the EEG yesterday. We learned that with some additional imaging and testing, we may learn that Otis is a candidate for surgery. It’s a long story, but basically, this EEG revealed that most of his seizure activity could be coming from the left hemisphere of his brain, toward the back. If additional tests are able to identify a specific focal point, he could have that portion—or even the entire left hemisphere of his brain—removed. Because he’s so young, his right brain would begin to take over, and he could grow to be fully functional—and hopefully seizure-free. It’s absolutely incredible how plastic kids’ brains are. So our hope now is that additional testing will prove him to be a candidate for surgery. I’ve actually spoken with moms of kids who have had this type of brain surgery (resection) done, and despite some minor delays and disabilities, many of these kids are eventually able to run and talk and do almost everything that normal healthy kids are able to do.

This has given us a lot more hope. We both went into this EEG under a huge cloud of dread. We never know what awful things these tests might uncover. And although his EEG showed that he's still having hundreds of seizures a day (not news to us), it's still completely free of the burst-suppression pattern that he had back in April that was indicating Ohtahara Syndrome. This is the second EEG in a row that has been free of that burst-suppression pattern.

It looks like we'll be going to the Cleveland Clinic very soon--probably mid-September--to have Otis evaluated by the pediatric epilepsy team there. We will probably be there for at least a week so Otis can undergo billions and billions of tests—imaging (PET scan, MRI, etc.), EEGs, and who knows what else. It will be exhausting, but we really feel like we're moving in the right direction. So that's the scoop for now! Well there's a little more--he's back on Clonazepam (seizure med) to help calm his brain (while hopefully NOT turning him into a zombie) and another round of Prednisolone since it was so successful last time. Oh, and we're making some minor changes to the diet to try to keep his ketones up without having to increase the fat to carb/protein ratio again so that we can avoid more reflux spasms (which have gone away since reducing the ratio of the diet).

Thanks to a whole bunch of help from our amazing family and family of friends, we will be travelling to the Cleveland Clinic for a week in September. We will be mostly inpatient with Otis during our time there, but will spend at least one night (at this point) at the Ronald McDonald house or a hotel. Our first day there, we’ll meet with the pediatric epileptologist we had been hoping to see, as well as the Ketogenic Diet team. Otis will be admitted from there, and they’ll begin his 24hr EEG right away. The next day will be his PET scan, and then various additional tests the rest of the time we’re there. It will be pretty intense, but we’re still feeling that it is the right thing to do at this point. O’s doctors at Children’s Mercy have been very supportive, even giving recommendations on doctors among the pediatric epilepsy team there. Dr. A referred to the Cleveland Clinic as the “epilepsy mecca”. Sounds very promising!

Otis has 15 teeth now, and is slobbering and chomping like crazy. Seriously—watch your fingers around that kid! He has learned to be gentle with his own hand and fingers, and has developed a little callous on his left hand from gnawing on it. We were finally able to make a successful batch of “oopsie” roll snacks for him to practice chewing on—they’re made of cream cheese, egg yolks, and egg whites. When made correctly, they end up being like pita bread. We give it to him with a very specific amount of Smart Balance, which we let warm to room temperature and then mix with a few drops of vanilla stevia and a pinch of cinnamon for an extra treat. It took him ages to get through his first oopsie roll last night, but he did a great job with it and really seemed to like it! It’s really nice to have a good transition food that he can really chew on without choking being a big worry. He’s finally gotten into chewing on teethers, which he is able to hold for a bit all by himself with his left hand, although we’re trying to teach him that he has to keep holding onto it with his hand once he gets it into his mouth, or it will drop!

He is able to grab his pacifier (plug) and put it in his mouth all by himself with his left hand now. Over the past few days, he’s being doing a new/old thing where he grabs at our faces while we’re holding him. It’s something he’d started to do months ago, and then stopped again when his seizures started to take over again. I’ve had his little thumb up my nose way more than I’d like to admit! He seems really curious, though, which is awesome, and aside from the occasional eye poke or baby digit up the nose, it’s been really fun to let him explore. He seems to be the most interested in our mouths, and likes to try to get his and in there as much as he can. Yum.

He still isn’t using his right hand much, although we do notice him flexing the fingers on that hand when he is using his left hand for something, and will frequently bring his right hand up to assist his left hand. We are still working on getting him to bring both hands up to hold his bottle. Right now, Otis is taking 4 bottles per day, with one food meal and 2 baby food snacks. Over the next few weeks, we would like to try to replace one of those other bottles with another food meal, and start transitioning him onto more chewy food and less pureed stuff. He really needs to be using those teeth! The diet is going well. He is back down at the 3.75:1 ratio and those nasty reflux spasms have pretty much gone away. We are working with the dietitian to add MCT (medium chain triglyceride, derived from coconut and palm oils) oil to his diet to increase his ketones (and hopefully increase seizure control) without increasing the ratio of the diet again—which would surely bring back his spasms. MCT oil is metabolized differently than other food oils in that it is absorbed directly into the bloodstream rather than requiring work by his digestive system to get it into his system. Because of that direct absorption, it does not have to be calculated into the diet ratio with the other fats. We will begin adding that to his food tomorrow.

He’s still a very big boy—about 32 inches long and hovering somewhere around 26 pounds. He’s outgrown his infant seat and has graduated into a bigger car seat, which we will keep rear-facing as long as we can. His head control is the best it’s ever been, but he still gets tired and lets it flop over at times. He is also doing great at stabilizing his trunk. We’ve even seem him sit up all by himself a few times, if we put him in that position! He’s gone as long as 15 seconds sitting up completely unsupported on his changing table, and only flopped over when he realized he was working. He’s onto us! He’s back to kicking and rolling like crazy, so we really have to watch him closely to make sure he doesn’t wedge himself under the couch. He’s also got a lot to say these days, and spends much of his waking time chattering and hollering and experimenting with new sounds. He’s really discovered his voice, and is really into high-pitched squealy noises right now, which has been pretty funny. It’s hard to be annoyed at being awoken in the middle of the night by when that sweet little voice is what’s doing the waking. He’s just got so much to say! Although…a little bit of sleep now and then would be nice….

We were able to pool all of the change we’ve been saving for the past 5 years (since we’ve been back in Kansas) to buy an iPad for Otis—Ryan took all of our piggy banks and odd jars of change to the bank and walked out with exactly enough to buy an iPad! See? It definitely…eventually…pays to save your coins! With help from O’s Tiny-K coach, we’ve found quite a few great apps that get him to use his vision and encourage him to use his hands (well—hand, since he really only uses his left) and teach him cause and effect. It’s been a lot of fun. We’re also continuing to work on getting him comfortable with putting weight on his hands and knees to prepare him for crawling. O’s Tiny-K coach has come up with many creative ways to get him to do this, but we’re usually just barely a step ahead of him figuring out that we’re trying to make him work, the little stinker!

(Cute pics to follow!)