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.