I didn't win the lottery this weekend, so I'm sure its the fault of Noonan Syndrome - and not because I didn't play. I'm having a bad hair day today, so I'm going to blame it on Noonan Syndrome and not on the fact that its been raining all day long. The sun is not shining today, instead we're having some thunderstorms, yep, its all Noonan Syndrome's fault!
Have I shared with you yet that I despise Noonan Syndrome? Today I so ever do!
I can handle the medical hiccups my son has as a result of Noonan Syndrome, because more often than not they can be controlled or corrected via medicine or a medical procedure. What I can't handle is the behavioral aspect of Noonan Syndrome. More specifically the behavior my son displays when it comes to eating.
I am a bull headed person, so him pushing back on me is more than a challenge - its down right torture. I'm at the point where I dread waking up in the morning, because I know its just going to be one struggle after another with his eating. And this little monster that emerges is not the little boy I know and love - where did he go? My son will eat "normal" food (meaning not his feeding clinic exercise food) more often then not these days. Its definitely much better than how his "eating" was going at the end of January early February, but definitely not at the level of a "normal active 2 year old boy" (which he is if you remove the Noonans out of the equation). I try very hard to take each little tiny step towards progress and relish it, but I am by no means a patient person. Its like sitting in a traffic jam and only being able to inch your way to your destination. At least with my car I can blare the horn if I got desperate - with this situation I got nothing!
So my son has been visiting a feeding clinic weekly since mid-January so they can monitor his weight, height and eating progress. He was making huge strides post 19 day hospital stay in all areas until mid-week last week when he caught a cold virus. Then his eating sort of sagged - a lot. I feel like I'm starting all over again. The worst of it is, he decided to totally "give me the equivalent of the 'middle finger' " when it comes to doing his feeding exercises. He's been totally defiant and I hate to say he's won every stinking battle. So now I wonder, is this because he's a 2 year old or is it because of Noonan Syndrome? I just don't know, but it so easy to Blame it on Noonans!
However, today he was evaluated by our city's educational system's psychologist and teacher evaluator and he's fine. Everything but his eating all falls into the "normal" category of a male child his age. He visited his pulmonologist today too, and the doctor said to me - "he follows directions perfectly for a 2 1/2 year old little boy. Especially one with Noonans." With me, he's just a little holy terror - with a pretty high IQ!
So what does one do? Do I let him rule the kingdom called my home? Or do I just stake my claim to being the ruler and he just has to comply - no matter what and using any sort of method possible, short of hearing a knock on the door from child services? I'm just afraid that we are going to have a revolution in my house before long. But, hey I can just blame it on Noonans Syndrome!
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