Monday, February 21, 2011

We're still here!

Time has escaped me the last few days with updated the old blog, sorry guys!
The boys are doing pretty well. Jax has started to take a day or two here and there off from his vomiting, which is usually a good sign when it starts to break up like that. He typically will get sick once a day, but in general I can tell he's keeping enough calories in to be gaining some weight.
The boys are starting to repeat words once in awhile, and while the words aren't quite quality (hot = ha), they're starting to seem interested in communication a little bit more. Everything is still called "dada" and Jax seems to say "byebye dada" about 100 times a day. He waves and says "byebye dada" to everything, including inanimate objects like pickles or cereal while grocery shopping.
We think Brady is saying "all done" but it's kind of unclear yet if he is. Brady still seems to understand more than Jax, but Jax says more words. They're sort of their own yin and yang that way.

Brady has decided he'll eat meat now that we've introduced "dipping" to him. If you put ketchup or BBQ sauce on his plate, he'll eat an entire hot dog, chicken nuggets or fish sticks now. That really helps me with his menu! Although nothing is off limits to his dipping, including bananas, string cheese or any other veggie or fruit... it all goes right into the ketchup!

I took Jax to the chiropractor today and his neck seems to be doing a lot better, but he's been limping/dragging/pronouncing his left leg the past 2 weeks. He hobbles a bit, so I've been keeping his braces and shoes on a lot more to try and help train his leg. The chiropractor has been doing some messaging and adjustments to it. He's just never acquired a seamless stride while walking yet.

We've been working on getting Jax's pump rate up, and it's slow, but steady. We're hanging around 80 ml's/hr (that's about 2.5 oz an hour) to keep him from getting sick. His oral feeding is still pretty slow, but we're also on an off-week of his medicine that induces hunger. If we can keep him cold and virus-free the next few weeks, we may see some progress there. We need to be training before Jax has his next Feeding Clinic follow up in April where they'll decide if he's ready for the inpatient program yet. We have our eyes on the prize.
Otherwise business is usual here at Casa de Lettenberger.

My cupboards will never be the same...

Jax is modeling Brady's crafting skills of necklace making.

Brady is holding up hearts for our friend Brook's sweet girlies, Sydney & Carynne. Tuesday and Wednesday this week mark 2 years since we lost these beautiful girls. They are loved and missed every day.

To donate to Families of SMA, follow this link, thank you.


Jenn said...

Are you still using the sign language with the boys? Cole was late to talk (and I am an speech therapist!) and the signs really helped us understand what he was saying so we could reinforce it with modeling the correct pronunciation.

Annie and Jason said...

The boys have been in speech therapy for almost 2 yrs. They use a few signs here and there. It's a struggle, but we're working on it daily.