Quick Update

Walter and I have been a little discouraged lately. It feels like we've taken several steps back with Isaac and this is very disappointing for us. Today was the gastric emptying study, and Isaac actually did very well and now we will just wait for the results. His overall health has been good so I am hoping that a diet change has led to what seems to be a happy tummy. His mood though has been...well, I shouldn't even talk about that. 

These pictures are from several weeks ago. The first two pictures show how we manage Isaac's feeding tube and extension set (which is the tube hanging down into his pants). Several months ago, I watched a video of a mom cleaning her son's stoma (the name for the hole where the g-tube goes in) and since watching her technique, I began following relatively the same approach and he has had a beautiful stoma ever since (that sounds like an odd thing to say, but it used to get rather crusty, so this has made a big improvement). 

Basically, I clean the area with a q-tip, and apply (depending on my mood, or the look of the site) neosporin or Calmoseptine (your pharmacy can order this for you) to the site with a q-tip and then place two gauze pads around the tube. It works perfectly (for us). Also, because Isaac doesn't like us to touch him or mess with his tube, we keep the extension set attached to the g-tube. Most people do not do this, and instead, unhook the extension after each feed. We've found that it is less stressful for us if we use the tab on the diaper to secure the tube in place and keep it all tucked in the onesie. 

I love watching my kids play. They have such focused and interesting play habits, so it's always fun to see what they come up with.

We often play the "grocery game" so that Isabella can practice counting money.

Acrobatics...

Surprisingly, Isaac has been in a good mood today. We can hardly believe our good fortune since the past two weeks have been a struggle in terms of dealing with his mood. I'm sorry for the relative boring post, but not much beyond survival is happening on our end.