H-Town Adventures - Part 3 (postscript)

While in Houston, we did manage to get out a bit, even if it meant just going to BJ's Pizza.

Never too young to learn a good party trick.

We also made it out to Kemah for the boardwalk. That included a trip to a restaurant that had an aquarium. (Or was it an aquarium with a restaurant. No sure.)

Awake with the fishes. Grandpaw and the boys observe.

Even when we didn't go out, we entertained ourselves in the hotel with games like old-fashioned peekaboo.

Mom and Dad only made one excursion alone while there. But they made it count.

The brewery tour is a must for beer nerds.

H-Town Adventure - Part 2

The therapy went very well. We could tell a difference already by the end of the first week. Both boys were showing signs of being stronger and more active. The workouts seemed to paradoxically tire them out and energize them. When he wasn't working out, John-Raven couldn't seem to be still. That included some nights, too.

John-Raven: "Sleep=No. iPad=Yes!"

The boys worked hard. William sometimes worked SO hard...

...that he didn't even make it back to the hotel before going to sleep.

One day, he even decided not to wait until therapy was over to go to sleep, yet still kept working for a while. That's dedication, people.

Asleep? Yep. Still working? Incredibly, yes.

All in all, it was a wonderful experience. The boys' regular PT, Nancy, is really amazing and makes great strides with the boys in the hour that she gets to work with them each week. But it's hard to overemphasize the value of getting two hours of therapy per weekday for three weeks. The boys definitely made improvements in strength and stability, and we hope to capitalize on that to push them further in their therapy goals.

We would like to say how fantastic the therapists and staff are at Pediatrics Plus Therapy Services in Houston. Trisha and Carla did great work with the boys and had a real gift for reading their reactions and motivating them. We can't thank them enough!

Congestion is Snot Fun

One of the things keeping us busy in recent months has been, in a word, snot.

The sinus fairy blessed the boys with powerful and persistent congestion problems back in the fall. Though not among the most dramatic challenges we faced in 2010, the problem certainly has been frustrating.

And we haven't really identified a source yet. In the fall, we assumed it was allergies. Then we thought it was a cold. And since both boys have been teething so much (I'm beginning to think they're part shark), that seems to be adding to the problem.

It's been snot city around here. Remember this scene from Ghostbusters?

Kinda like that. (Just don't call William as "an ugly little spud" even if he does slime you. He will revenge pee on you.)

One of the ways we've been combatting their congestion is with breathing treatments.

Most of the time, breathing treatments don't annoy William too much.

The sinus drainage also tends to set off their gag reflex and cause them to vomit (which they're more likely to do being tube-fed kids), so we've fought hard to hold back the slime. We've done the allergy medicine thing and the cold medicine thing and the breathing treatment thing and we've used teething stuff to help with that. We recently went to an allergist who did skin tests and showed that apparently, they aren't allergic to anything except lack of attention, which they react violently to.

Over time, John-Raven seems to have shaken most of his congestion. William's has lingered, and a bout with some sort of cold in December didn't help.

William took a few days to fight off his cold (complete with high fever, inability to keep anything down, etc.) I always hate to see the boys feel so cruddy, but they usually keep a good attitude. And they support each other, too...

Solidarity, my brother!

Since the allergist ruled out allergy issues, we're next taking William to an ENT (ear nose throat) doctor. Since William has almost always had a tendency to snore, I have suspicions that he has some other issues going on. Here's hoping we get some answers.

Day After Surgery Pics

I took these this morning. The swelling of the skin around the shunt tubing that runs from their heads to their tummies has gone down so that it is already much less noticeable. The incisions, which really aren't that large to begin with (though I imagine the boys would argue that point), are visible in person but more difficult to see in these pics. John-Raven's head incision is toward the back, but William is lying with his head turned so that his head incision isn't visible. The little pink line near their bellybuttons was the only other incision required.

John-Raven (5/15/09)

William (5/15/09)

They were spitting up so much overnight that they weren't allowed to eat and had to be put on IVs. We think they'll be able to start eating again today.