The other day, I was getting frustrated because of all the unanswered questions relating to Parker and my desperate need to figure it all out and make the best decisions for my little boy. Sometimes I unload all of this on Paul and I constantly ask him questions in which I know he doesn't have the answer. On this particular day, Paul just looked at me and said, "He didn't come with a manual, you know." I just giggled.
It's nice to be reminded that NO child comes with a manual. No parent knows what the future holds for their child or what impact the decisions they make now will have in the future. Parents try very hard to do their best with the knowledge and tools they have. They want the best for their kids, for them to have a good quality of life and to be happy. My desires for Parker are no different and I am just trying to do the best I can for him. It doesn't matter that he has a unique diagnosis or could have a book written about his medical issues, my wishes for him are THE SAME.
So...if you are one of the Doctors, nurses, medical professionals, durable medical equipment people, therapists, insurance company representatives or pharmacists that I deal with on a regular basis, that is why I am the way I am. I don't have a manual, I'm doing the best I can and I want the best for my kid. I don't think I am being over-protective, purposefully annoying, or expecting too much. All I ask is that you return my calls, follow through on what you say you are going to do, don't assume anything and treat Parker and our family like people instead of a case number. I'm just advocating for my child because he can't do it for himself and please realize that you would do the exact same thing if you were in my shoes.
Whew! Now that I got that off my chest, here's a recent picture of me and my little man. Paul says Parker pays us with his smiles and with smiles like these, I think I'm being over paid.
You'd never know it by looking at his big smile, but Parker currently has a very nasty bug. Even though I haven't taken Parker anywhere...I repeat, anywhere...except for the Doctor he has managed to get a pretty big-time infection. We noticed it first around his g-button and when we got the results back from that culture I looked it up and began to wonder if he had that same bug in his lungs because he fit the criteria. I've been trying to explain to the Doctor's for over a month now that I think something is going on because of the frequent suctioning that needs to be done. So....last week I called the Dr. and asked if we could do a culture of his trach secretions and they agreed. Sure enough, it came back with the same bug and they have prescribed some pretty powerful drugs to get rid of the thing. The trick is (once again) to get the insurance company to agree to pay for the medications. **Side note: It sure would be nice if parents with medically fragile children didn't have to fight so hard to get their kids the care and treatment that is necessary. And if it all could be billed correctly the first time, that would be nice too!**
For all you people who live more in a "trusting mode" than I do, I would appreciate prayers for Parker to get over this thing sooner than later, for him to get the care and treatments that he needs and that will benefit him, for me not to get so frustrated with some of the service providers and for me not to get so caught up with all of this craziness and remember to enjoy the everyday special moments with Parker, Alexa, and our whole family. Thank you.