Day 4- Home

Well, we're starting to get the hang of this whole having Evan home thing. :-)
Just in time for the weekend!

I'm averaging 4-6 hours of sleep a night, which I consider to be fairly good, after only 4 days home.
It's enough to allow me to function, anyway.

Today my parents, sister and niece came to visit. We all had a good time catching up and playing with Evan.

We also had our initial physical therapy session, and set some goals for the future. I'm feeling pretty good about meeting those goals.
Next week, we have our (rescheduled ) pediatrician appointment, another physical therapy visit, and occupational therapy. We're still unsure when the speech therapy will be.

Because Evan has been in the hospital all his life, we are doing these various therapies so we can assess what he's lagging behind in, and form a plan for both myself and the therapists to follow so he will be on track.

As you will recall, he has a g-button for feeding. We're trying to introduce oral stimulation to him (sucking, chewing, textures, warm and cold) so that he can kick his oral aversion. We have our work cut out for us, there, because when a baby doesn't want something in their mouth (and I think most moms will agree), they can make a big ISSUE over it.
But we've started in on my personal home plan, which is sitting Evan in his high chair during dinner, having some baby food to offer him, his sippy cup with cold water, and allowing him to see both myself and Carl eating. In my case, eating ravenously because I've tended to skip meals while taking Carr of him here at home. I just get busy and forget.
Yesterday, Evan did really well during dinner time. He was fascinated with the process of us sitting at the table together and eating. I had baby food for him, which I would offer to him every so often, but he was much more interested in the juices from my meal, which I swiped in his mouth a time or two to see if he could taste it. He was intrigued. I'm also happy to report that he really likes the taste of apple pie filling. See, I had to test the theory that maybe if he could taste something a bit stronger than baby food, he would... You know, actually TASTE it. Having the trach pretty much eliminates the sense of taste. I know, I shouldn't offer him something other than approved baby food, but I'm just happy he seemed to take to it.

Whew. I need to say goodnight. This momma is pretty tired, and Evan is snoozing away in his crib. Tonight, I'm going to experiment with actually sleeping in my own bedroom for the first time since Monday night (baby monitor at my side).