Taking Off

Bobby is going through one of those really fun phases where it seems he's doing something new every day. The biggest news is that he's started learning his consonants. He began with a 'ba' that now gets turned into 'da da' and some other unidentified noises. But its a huge breakthrough. We've spent months repeating the basic sounds to him (ba,ma,da,ka) and now he's gotten in. We're all very proud.

He's gotten much stronger since surgery. He's now able to lay on his tummy, put his weight on his forearms and play a little bit. He got a jumperoo for his birthday and he's done really with that - he is getting better at putting weight on his feet and is starting to strengthen his trunk when he's sitting up. He's learning to hold his arms in the air and make controlled movements. He's started showing some understanding of object permanence. He can bang two blocks together. These are all huge.

One of the best things about watching a boy like Bobby grow up is that we notice all of the little milestones. I don't think most baby books have a spot to indicate when a child moves from using a primitive grasp to a Palmer grasp. But we noticed when Bobby made that move. Banging two blocks together isn't just a child's game - it takes good motor skills and coordination. We are practicing rolling over, tummy to back, back to tummy. It takes a lot of practice and a lot of coordinated movements. And it will be a huge moment for our entire family when he can do it alone.

Otherwise, we've had many doctor appointments. Bobby will get a g-tube and a nissen fundoplication sometime in the next few weeks. The g-tube is a feeding tube that goes directly into the stomach. It will get all of the tubes out of his nose while he's learning to eat by himself. The nissen is a procedure to tighten the sphincter at the top of the stomach so that he won't reflux. This will allow us to eventually take him off continuous feeds and have regular meal times again. It will also keep his lungs healthier because he won't be aspirating.

Bobby has an echo later this week to see how his heart is doing and to see if his blood clot is gone. If it is, he will be cleared for surgery. If its not, we'll have to work with the doctors on next steps. Its possible but not ideal to have the surgery while he's still on blood thinners.

We had a swallow study. This is an xray test where they take a video of what happens in Bobby's mouth and throat when he eats. They confirmed that its safe for him to eat purees - he has enough control that the food is not going down the wrong way. Liquids are another story for now - there is some risk of aspiration so we will use thickener and proceed very slowly.

He missed his hearing test because of a ear infection. We will reschedule as soon as we get the all clear from the ENT.

In the meantime, we're off to the eye doctor today. Bobby needs surgery to correct his crossed eye and we're hoping to schedule that as part of the nissen/gtube.

Wow! And this is what we go through when Bobby is on the upswing.