Some days I just wake up and wish that for one day I could just play with him, feed him and just go about our day. If he had to feed, how easy it would be to just feed...how I wouldn't worry about how much physio I've gotten done throughout the day. Ten minutes here, 5 minutes there, did I do enough? I'm not trying to complain, I guess for me I'll never know anything different and neither will he, but still, some days these are the thoughts that go through my head and today is one of those days. It's tough being a new parent, and it's tough being a new parent who is essentially responsible for the overall health of such a precious person. Everything I do is for him whether I'm tired, frustrated, annoyed, upset, angry...none of it matters, I just want what's best for him and so that means medications, daily physio, doctors appointments and trying to maintain an overall positive attitude toward the whole thing.
Wednesday, 4 April 2012
Applesauce a success!
So I mentioned yesterday that I was going to try to give Nash his enzymes in a bit of applesauce and it was a success! Well, for the most part. He did spit up a bunch after I fed him so who knows how many he actually digested. It was quite funny to see his reaction to the applesauce and I tried to get a video of it. Keep in mind it's hard to feed him and take a video on my phone in the other hand at the same time but here it is!
I gave it to him again this morning and he seems to like it and he's quite interested in the spoon. It's making me more excited to be able to try new foods with him soon! If you've never had to give medications to your child at every single feeding it's hard to imagine how big of a step this is. Just something as simple thing as a tiny bit of applesauce on a spoon I know, but it makes things so much easier. It also symbolizes one step closer to him being able to take them in his food and not even know they're in there and then one day being able to take them himself.
Some days I just wake up and wish that for one day I could just play with him, feed him and just go about our day. If he had to feed, how easy it would be to just feed...how I wouldn't worry about how much physio I've gotten done throughout the day. Ten minutes here, 5 minutes there, did I do enough? I'm not trying to complain, I guess for me I'll never know anything different and neither will he, but still, some days these are the thoughts that go through my head and today is one of those days. It's tough being a new parent, and it's tough being a new parent who is essentially responsible for the overall health of such a precious person. Everything I do is for him whether I'm tired, frustrated, annoyed, upset, angry...none of it matters, I just want what's best for him and so that means medications, daily physio, doctors appointments and trying to maintain an overall positive attitude toward the whole thing.
Some days I just wake up and wish that for one day I could just play with him, feed him and just go about our day. If he had to feed, how easy it would be to just feed...how I wouldn't worry about how much physio I've gotten done throughout the day. Ten minutes here, 5 minutes there, did I do enough? I'm not trying to complain, I guess for me I'll never know anything different and neither will he, but still, some days these are the thoughts that go through my head and today is one of those days. It's tough being a new parent, and it's tough being a new parent who is essentially responsible for the overall health of such a precious person. Everything I do is for him whether I'm tired, frustrated, annoyed, upset, angry...none of it matters, I just want what's best for him and so that means medications, daily physio, doctors appointments and trying to maintain an overall positive attitude toward the whole thing.
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Hi Karen! I wanted to leave a little note, and tell you that you're not alone in your wishings for a "normal" day. And saddly there will be _many_ more times these thoughts cross your mind. We try to stay positive, and think about what those enzymes and physio's are allowing our son to accomplish. Marvel in the great moments... I promise it will get eaiser, and one day the good moments will far outnumber the time you spend on treatments. When our son has to be admitted it's really really draining and depressing... but we get through the two weeks because we know when he goes home his life will be healther, fuller and he'll enjoy himself. Just try to remember for every 5 minutes of physio, thats 5 more minutes of playtime. Take time for yourself when you need it, and most importantly remember that you're not alone!
ReplyDeleteThanks Cara, I'm sure this will be very much a roller coaster ride. It's nice to hear from those who have been there, done that.
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