River Playing in his Little Room

Ketogenic Diet

After years of contemplation and preparation, River finally is starting the Ketogenic Diet this week in an attempt to reduce his seizures. Most days he has around 3 tonic seizures, but sometimes it's more like 8 or 9. He's on 3 different anti-seizure medications (lamictal, keppra annd zonisamide) and we can't help wonder how his personality might be different without the seizures, and these medications. The seizures sometimes cause him to choke and gasp for air (for which we give him oxygen) so they can be pretty scary to watch.

I don't think we'll know if the diet is working for several weeks, but right now we're most concerned about how he'll tolerate the high proportion of fat in his diet. Physiologically, fat slows digestion and River already has impaired motility for which he takes several *magic* medications. It's been our biggest battle so we're very cautious about how he will tolerate this diet. Fortunately we've been working hard at packing on the pounds (River, not us) so if he loses a few pounds in the process it won't be such a big deal. We, the mommas, wouldn't mind losing a few pounds as well!

Here's a couple pictures of their first day at the hospital.

settling in...


morning nap, looking handsome as ever...

Broken Bones!

Don't ever call this boy non-mobile. A couple weeks ago he squirmed himself between the bedrail and the mattress, and onto the floor. We found him in the morning, quietly admiring the underside of his bed. He never seemed to be uncomfortable, but we brought him to the doctor to evaluate his ankle, which was a tiny bit swollen and warm. And this is what they found...


Fractured tibia and fibula.

Pretty blue cast.

A very patient boy!

Rest assure, Julia has secured the side rail. There will be no more escapees!

Baby got back

I'm not sure he really has back YET as he's still below the 3rd percentile, but he did finally gain. 1 pound and 2 ounces since last month's weight check! Woo hoo! The duocal must be working!

Back to Blogging?

I recently shared River's blog with another one of his many, many providers. David dutifully ensures that we receive River's formula and feeding supplies each month. As someone who spends hours talking to people over the phone, I know how helpful it can be to 'see' who it is you're working with. So David appreciated getting to 'meet' River and Grayson through the blog. And every time I share the blog address I am reminded how infrequently I get to update it. So I have some renewed inspiration to write, and I have some topics to write about. It's always helpful to have fresh material.

Today we had a long anticipated Coordinated Services Plan (CSP) meeting with many of River's team members, plus a few people from other social service agencies. We've been having trouble meeting River's many needs, so this was a way to get everyone together to discuss our goals, available resources, and to make a plan. It was a packed meeting! We barely got through the goal and resources part so we had to reschedule for the "plan" part, but it quickly became clear to everyone that we have a lot of gaps in our care for River. Everyone was surprised to hear that River does not meet criteria for in home nursing care (aka High-Tech Nursing). Our current PCA (personal care assistant) setup is just a band-aid for a system that doesn't work. I feel like I've been carrying a lot of this stress around and the meeting was a way to get it out on the table, so to speak, and share the burden.

I was so pleased with the physical turnout at the meeting. Julia pointed out afterwards how many people care for River. One of the best parts was when we all shared our goals for River. Some were serious (to be healthy, to be safe, to be able to go to school) and others were fun (to be able to play, to tackle his brother). All of them were important and worth writing down here. I'll try to get a list together to share. We did not make any resolutions but I am hopeful that we're on our way there. Our next meeting is 3/17 so stay tuned.

Weight gain and seizures continue to be an issue for River. While River has always had a delicate tummy, the addition of his latest seizure medication, Banzel, over a year ago had the unfortunate side effect of increased vomiting. We struggled for months to get enough calories in him while getting him up to a therapeutic dose. Additionally, each time he gets sick his digestion slows down and we have to cut out or dilute his formula. So weight gain is an ongoing issue. The next big step for seizure control is the Ketogenic diet (high fat, low carb) but it will likely be difficult on his digestion so we want to make sure he puts on some pounds before we start it. We'll probably be adding another medication in the meantime to try and prevent his seizures from worsening.

For those of you who need a little piece of Grayson in your lives, he now has his own blog (his big brother wouldn't share). You can visit him at http://www.graysonelvis.blogspot.com/. Grayson's blog will be mostly for pictures and videos. Ok, maybe I'll write a little, but I'm not committing to it.

In less than 2 weeks I am starting graduate school for my Nurse Practitioner degree. I'll be away for 4 days, 3 nights, orienting in Kentucky. Julia will have auntie Kelly helping for the week. Condolences can be sent in the form of hugs, dinners, wine, chocolate, babysitters, or any type of respite. :) Seriously, I think they'll be okay. Nights will be difficult as Grayson still nurses quite a bit overnight and has no interest in a bottle. It will be a sweet reunion for everyone when the week is over.

Wrestling Match

It's always nice when one of River's Personal Care Assistants can attend therapy with him but it's not always possible with school schedules. So Julia taped a bit of this recent session to share with anyone who is interested. This is especially sweet with his brother involved. I hope you enjoy it as much as we have.