How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Monday, October 12, 2009
Is It Me?
What a great weekend! Everyone is well and we were able to visit Arbuckle Wilderness (a drive thru safari type place) on Friday and then took Carly out for her special day yesterday. We took her to eat at a Japanese Hibachi restaurant and then to see Toy Story 3 in 3D. We try every now and then to take her out without Anna so she can have mommy and daddy to herself. Her needs get put second a lot due to all of Anna's problems so I try really hard to be sure Carly is getting what she needs from us. I know that she knows she is loved but I want her to feel like she can always come to us and that we are there for her no matter what is going on with Anna. It is pretty easy to tell when she needs special time. She quits minding and gets really whiny. Then we have a special day and she goes back to minding and having less whining. She kind of made me sad on Saturday. I had to work and she was telling me all about her day with Kenneth and Anna. She told me how they played with some other kids at the fire station and how one of them was "the same age as Anna but he could talk a whole lot more than her." I sometimes forget how noticeable her lack of speech is until I am snapped back into reality. Then I went to see my grandparents today and my grandmother was talking about how my cousin's baby who is 9 months younger than Anna is saying things like "Uh oh paskettios." Anna can say uh-oh but is no where near paskettios (spagettios). I know my grandmother is proud of all of her great grand kids but it is sometimes hard to hear where mine falls behind. Anna's speech is improving, don't get me wrong, but it still is no where near her age appropriate level. That is just another one of those parts of acceptance that slaps me in the face sometimes. Then with the whole eating thing. I am feeling a bit like a failure today. Last night I tried really hard and sat and made Anna sit and I fed her all of her dinner. It took what seemed like forever! I think I spent 45 minutes to an hour to feed her 1/2 a bowl of fried rice and a few bites of chicken. By the end I do not know who was more worn out, me or her. So she did eat, finally, but it was such a struggle. So now I am wondering if she doesn't eat because I don't try hard enough. I just don't know if I can spend 45 minutes to an hour feeding her every time she needs to eat which is like 6 times a day not including her milk. I could do it but then I would not have time to do anything else. Then I feel sad that "everything else" is coming before her nutrition. I do make the effort to feed her but usually she cries and runs away and I just give up. I try to let her feed herself and the same thing happens. I do not want to force feed her and I do not want her to hate food and eating because it will only make the problem worse. She has gained a little weight since her last check but she grew 3 inches too. She is actually worse off on the weight for length chart now than she was before. I am so sick of stressing about my child's eating. And now I am stressing about this, is it her or is it me?
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I often wonder about effort vs. benefit for eating as well. I have to say, I spent about 3-4 hours each day feeding Katie. My mom feeds her lunch at her house and spends another 1-2 hours on that. I really think that if I were to skip that effort, she would have been on a Gtube a long time ago. I'm NOT at all saying that you don't put in enough effort...it's very difficult and takes a ton of time. If I had another child I'm not sure I could do it. But that's our reality and the time I dedicate everyday does help Katie a lot. That said, I'm not sure that a Gtube would have been a bad thing. I just want to bypass any medical procedures that I can for Katie.
ReplyDeleteHope you have a great week! :)