Tuesday, February 15, 2011

A Yes and a NO

There is just SO much to write about and my mind has wondered from one thing to the next when thinking about what to blog next.  Our lives are filled with so many moments that are funny, interesting, happy, sad, scary and every great now and then mundane.

One of those happy moments happened yesterday when I was going to see if Nicholas wanted to eat oatmeal for breakfast. You see, since he had his G tube placed a year ago, he has gotten lazy with eating regular food. He CAN eat and swallow just fine, that was never a problem. He does however have a LOT of food sensory issues, I am sure an Autistic thing. Foods like rice are very weird for him. I think it is like each grain of rice feels so exaggerated in his mouth. He is very aware of each little tiny piece. For us, it is just a bite of food. For him, it is soooo much more than that. He will hold it in his mouth and we encourage him to swallow, but most of the time we end up having to scoop it out. Anyway, it wasn't that he ATE the oatmeal that was my happy moment. It was that I asked him if he was hungry and he said "eeeeyyyy" which is his word for yes that he uses every great now and then. I said "great, let's eat some oatmeal." He immediately shook his head NO. This was HUGE! It was a real conversation!...for us. You don't understand. These moments are very rare. If the fog of a bad seizure hasn't glossed over Nicholas' personality, then it is just him not wanting to attend to you. I laughed and said "aw come on, let's try." I put a bite in his mouth since he cannot feed himself by spoon, and he held it. I should have listened to him. My desire to have my baby eat something was stronger than my trust that he knew he didn't want it. It is just a horrible thing to want your child to eat food and they just won't. You feel completely helpless.

I remember feeling so depressed when we found out that the doctor really thought he should have his G tube put in. I cried and cried. In fact, I won't forget Ray calling me on my cell phone because I had a doctor apt. for myself and couldn't go to Nicholas' Neurologist apt with them. Ray said, "the doctor says he thinks Nicholas should have a feeding tube put in." I was driving to my apt and just lost it in the car. By the time I got to the apt. and checked in, the girl who took my blood pressure said "Wow, your pressure is really high.!"It was 150/90! I have never had a bp problem and knew it was directly related to this horrible call I just got.


I felt like a failure. Ray and I had a ton of conversation going back and forth about if this was the right time, the right thing to do. We are truly a great team when dealing with these issues. Ray is the practical one and I am the one who does the research. I am also the one who ends up freaking out a bit more and Ray brings me back down to a place where I know everything will be all right. I was just certain there were other parents of special needs kids out there who had been successful in getting their kids to eat. Nicholas ate, but only very minimal foods like mashed potatoes, mac n cheese, chips and salty crunchy snacks. Sounds all great and yummy but you can't be healthy on the inside if you are eating this stuff all the time. He had lost weight, like 20 pounds in 3 months. At 9 years old, he weighed 58 pounds when he had previously weighed 78 (which was a bit heavy for him). We think he started losing weight because we changed seizure meds and the new meds made him lose his appetite. My joke is always, why can't this happen to me, someone who can afford to lose a few L B's. Not my baby. After we went back to his old meds, he just never got his appetite back.

His surgery for his tube placement went so well. He is such a brave boy. The worst part is that he doesn't know what is coming really. We couldn't prep him for what was to come. We talked and told him but we just don't think he understands. When recovering he just looked at us with that face as if to say, why did you do this to me? I don't know what is going on? It is HORRIBLE. Here he was sleeping like a baby in the hospital and how could you not love that beautiful face with that grin?

I try not to look back. It was the best thing that ever happened. Nicholas is healthy and thriving. He gained weight and he has grown taller, he looks the best he has had in years. We are able to give him vitamins daily now which we couldn't do before because he would just throw them up. Now if he doesn't want to eat, it is no stress for anyone. We just feed him through his G tube. The stress around feeding isn't there any longer. We used to just beg Nicholas to eat rice cakes and that would be a meal for him at times!

So my promise to myself is next time Nicholas says NO with a head shake to a food I offer him, I will listen to him. I am still learning even at 10 years into this. But it is all good. I love my boy.

2 comments:

  1. cori-
    I am loving your blog. You are an amazing woman. And you write so well and I hope many will follow. Keep writing my friend!
    Love
    Suzanne

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  2. I'm glad I have found your blog Cori. YOu have so much going on in your life and I know its hard with a special needs child. I remember when he was born and so glad to see him growing up. I think of him often and when I watch the show "Parenthood" as they have an Autistic child on there. Its very interesting to see them represent families that have these issues. YOu have a guardian angel who helps you daily and I know that God chose you to be Nicholas' parents for a reason.
    Keep up the blog, love to read it.

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