Wednesday, January 4, 2012


Okay, I realize that's an imaginative title, but the imagination seems to have taken a vacation.  I'm beginning to realize I may just have to go with the flow here.  I started a Christmas Day post, but haven't found the time (or energy?) to finish it, and wanted to do this chronologically.  If I do that, we may not have any more posts before summer.  Just kidding, but it still may take a while.  So maybe, it's Christmas in February. 

Anyway, here's what Aaron's up to. (Without pics, sorry.)

I got a Kindle Fire for Christmas (Thanks, Santa!).  I'm not quite sure how he managed to pull it off, but one of the reasons I really wanted it was for the apps I was hoping to use with him.  Well, I downloaded Fruit Ninja, and he was a hoot!  I was holding him and playing it, and soon he put his hand on mine as I was swiping.  Then he abandoned my hand and was just trying to swipe himself!  I was thrilled.  Love that he's trying to interact with things.

Also, the last time we used his stander, he really enjoyed playing with the toys.  Then when I got him out, he continued to try to bear weight on his legs.  In the past, sometimes, he's pushed a tiny bit, but his legs never get past a 90 degree angle at his knees.  This time, a few times, he stood all the way up!  This is HUGE!  And he's also trying to balance in a sitting position.  We showed his ped the last time we were in and he was thrilled, too.  This little boy, who wasn't "supposed" to live, is growing and developing, and most important, loving his life.

Now for the sadder part.  He's sick.  Yeah, again. He's been on a preemie formula since my milk supply ran out, many moons ago.  And even the breast milk was fortified to a higher calorie content with this formula.  But he is almost 19 months old, and he's needing a more diversified nutrition.  So it's time to switch to a pediatric formula.  I found one that I really think will work well for him. It's actually made with real food.  Now, I know a lot of moms make their own, but I don't think that will work well for us for a variety of reasons.  Not the least being that when he is in the hospital, they won't be blending up food for him, and I don't want his system to have to adapt to something new when he's already sick.  Which brings us back to this week.

On Sunday, we tried to make the switch.  He was happy, but his nose started running.  Then on Monday, it was worse, plus his trach and his eyes started in, too.  Along with the drool that is fairly constant, but decided it needed to step it up to keep up with the other orifices.  But he was still happy, and it was all clear stuff (TMI?)  So I decided I'd probably made the switch too fast and his body was rebelling.  We switched back to the preemie formula with the intent to get him back to baseline, and then try again, but at a much slower rate, mixing the two in different amounts for several days until he was completely changed over. 

Tuesday, though, was completely miserable.  Secretions got thicker, and he got sad.  Heart rate increased, oxygen needs increased, and I went on high alert.  He's doing a little better with his vitals today, but he's still miserable.  Plus, I'm hearing sniffs and sneezes from others around here, too.  So my guess is, we have a cold.  Good ol' common cold.  Which often puts us in the good ol' children's hospital.  So we're watching and hoping and praying that we get to stay home.  But the hospital bag, yeah, it's packed again. 


By the way, something to watch for.  I've been so blessed to find many articles and quotes that have given me strength, or explained my feelings in ways that I just can't.  Soon I'm going to put up a page on this blog where I can post things like that.  They're not my own writings, but hopefully others can find help from them as well.

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