Skinny Love and Sunshine

Whenever I hear the song, Skinny Love, by Bon Iver, I think of sweet Rowan. He's my darling, skinny little love...

He's been doing really well lately. We ordered his orthotics for his feet a while back- then had to have him re-cast, so we've been anxiously waiting for them to come in. He hasn't been able to use a stander for months now, and I can tell his frail legs have become weaker. We were lucky enough to get a new stander for the house, so once we get his shoes situated, he'll be able to stand again.

He recently started a new medicine called Felbamate. It's supposed to help with seizures... along with all the others he's currently on: Keppra, Phenobarbatol, Sabril, and the VNS and Ketogenic Diet. We hope to lower his diet ratios and the Keppra I guess.  The problem now is that a side-effect of the Felbamate is loss of appetite. That is one thing our Rowan doesn't need. He's already so thin, and now he has little interest in eating or drinking.

I spoke with the Children's Hospital today and they'll put him on a medicine designed to increase appetite. I guess I hope this helps, but I'm saddened that we have to add yet another medicine into his routine.

He's been very smart lately, though, and is a budding musician- like his daddy...



What's new with Lily you ask?
The weather has finally gotten nicer, so we were able to dig her bicycle out of the garage.  Take a look at how well she did!!

She was so proud of herself last night. She is, after all, 5 now....

Lily's been sweet as pie lately- most of the time.  When she isn't sweet, she's impressively sassy. Her personality is similar to mine in that she is more of an introvert, she tires if she has to run all over and then needs to be home to 'touch base'. Sadly, her grumpiness is also familiar. I don't want to take full credit, but probably should.

I'll try to update more regularly- Love you all.