DAFO's, MRI's, GI Study's and Rainbow Shave Ice

Today was a big day for Romy. She got fitted for her first pair of DAFO's! For those who don't know, they're ankle braces to help her learn proper foot positioning which in turn will help her stand and dare I say it....walk! When most people think of leg braces they think of the movie scene in Forrest Gump when he's running away from bullies and metal goes flying from his robotic looking braces. Romy's are mid calf and hard plastic with foam insoles and they just happen to be bright purple with lime green polka dots. We should receive them in 2 or 3 weeks. We're sooo excited!

We also saw Romy's neurologist today, we went over Romy's MRI results and he said it pretty much looks like a typical preemie's brain. No sign of a stroke which is wonderful, WONDERFUL news. There was PVL (Periventricular Leukomalacia) which no doubt caused her Cerebral Palsy. It's a pretty common occurrence in micro-preemies. He wasn't too concerned about her developing seizures which can be common in kids with CP. If she hasn't had a seizure by now, then she most likely won't start. We also talked about Botox. Ya see, the first time Romy had Botox was this past May. The results were pretty incredible so we were all about doing them again when the effects wore off. So, she had another round in August, the results were pretty disappointing. There wasn't much of a change and the small change we did see lasted a meager 2 weeks. She'll get another round a month from now and the dosage will be a bit higher this time around. The Doctor also wants to try Baclofen. Baclofen is a non-narcotic muscle relaxer that's taken by mouth. There's a Baclofen Pump too, but Romy is too small and too young to get one at the moment, not to mention we're still unsure of such an invasive treatment. The thing is, it will relax not only her spastic leg muscles, but ALL of her muscles, even those not affected by CP. We're gonnna give it a test drive, if it makes her really sleepy or too "loose" than we'll pull her off of it and think of another treatment. We pick up the meds in 2 days.

Romy's primary care doctor (whom we love!) showed Romy's upper GI video to a Gastro doctor. She's thinking that maybe, just maybe, Romy has some silent aspiration going on. Perhaps the acid in her stomach is rising and pushing her food upwards and causing pain and or a sensation of fullness, and it could be dangerously depositing fluid into her lungs. Before we move forward with a g-tube, she's suggested trying some Prevacid for a month to see if has any effect on Romy's eating. We start that today, and she has another swallow study tomorrow, so I'll let you know how it goes.

Speaking of eating, I don't wanna jinx it, but Romy has been doing pretty good in the eating department for the past few days. We get through most meals without any stress and she's eager to try new things. She has a very odd palette for an almost two year old. She loves cucumbers with vinegar (you the ones that come with sushi?) and baked sweet potato fries seem to be a staple in her diet, and she can't get enough of salt-n-vinegar potato chips...gross. She also loves typical toddler food like chicken nuggets and mac-n-cheese. She feeds herself anything she can pick up, I think I'll introduce her to using utensils soon.

The three of us went to the North Shore yesterday and ate shrimp on the beach and played in the sand a little bit then, had the world famous shave ice from Matsumoto's, yes it's SHAVE ice, not SHAVED ice, don't ask because I don't know, but, I'm happy to report that she ate more food than sand this time around.