Life at the Ranch

By my lack of updates you may have gotten the impression that life has been boring at the Marangella Ranch but I can assure you that is definitely NOT the case! We’ve had so much activity on so many fronts that I haven’t been able to clear my head enough to write anything.

On the medical front I have spoken to Max’s doctors at Hopkins regarding what our local doctors are saying about Max’s most recent issues. His cardiac geneticist feels that he should be seen by a pediatric neuro-ophthalmologist….a pediatric what? I have never in all my life heard of a neuro-ophthalmologist, let alone a pediatric one. The only thing I am certain about regarding this medical specialty is that there is no such animal in Phoenix! Only at Hopkins, so off we go! Hopefully I’ll hear back from the clinical coordinator tomorrow but because there are so many doctors to see and tests to be done it’s never really easy to schedule everything. Thank God they handle most of it for me! We do have one other very important appointment to set up. Max’s liver functions has been very high for the last several months so this afternoon I will take him for one more blood test to see how his numbers are trending. If the numbers continue to be high his GI doc at Hopkins will almost inevitably being doing a liver biopsy during our stay. They don’t like to do biopsies on an outpatient basis which means there is the possibility of time in the hospital so we’ll have to see what Max thinks about that, although I can guarantee a less than enthusiastic response.

On the school front we had Max’s IEP last week and as a result I’ve decided a couple of things: one, I hate IEPs, and two, I hate IEP standardize testing. This year they did a “full evaluation” of Max which means we had a two hour meeting to review their results. There were several areas where we disagreed with the results being presented to us and instead of a constructive discussion of the issues all the school team could offer us was a sarcastic, condescending, “If you like we can just take it out of the report.”, as if we are hysterical parents just trying to sweep crap under the rug. For everything we questioned this was the answer we were given. It was infuriating to be treated in such a manner! But it was even more infuriating that they were treating Max in such a manner! From here it only got worse……

When I got home with the paperwork and could finally read it carefully without someone talking over it I realized that they had list the following as “critical behavioral issues”:

• Child has an issue with “eating too much”
• Child has an issue with “excessive toileting”
• Child has an issue with falling

Are they kidding me? The child has half an intestine, eating too much and pooping too much come with the territory, it is a medical issue not a CRITICAL behavioral issue! As for falling down, this is a kid with nothing more than paperclips holding his sternum together, when was somebody going to tell me he has been falling? I took a day or two to calm down (Michele made me) before I called the school psychologist about this section of the report and guess what she said? “If you’d like I can just take it out of the report.” Why can no one see that children like Max have medical issues and not emotional, behavioral issues? Despite all he’s been through Max is one of the most well adjusted people I know. The standardize tests used by the public school system are not geared towards the chronically ill child. When I voiced this to the psychologist she said “but we all love Max….” as if that fixed the whole problem. I actually gave up trying to convince her of anything, thanked her, and hung up. Guess what came home with Max that evening? A new report with that section removed, problem solved….NOT! So in all my spare time I have decided to look into a better testing system for children like Max, just one more hobby to add to my list!

Enjoy the rest of your week all!