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!

One Doctor Down, Two to Go

We took Max to the first of several doctors to discuss the changes we have been seeing in him as of late. This appointment was with the pediatric ophthalmologist. Because connective tissue disorders are often associated with rather severe ocular changes such as detached retinas and lens problems we were concerned about Max’s inability to “track” objects with both eyes. During the battery of tests with a less than pleasant tech Michele and I noticed that Max was having great difficulty reading the letters on the chart, so much so that I whispered to Michele that we might be receiving a prescription for a Seeing Eye dog. Obviously I was kidding but neither of us was kidding when we said simultaneously that if the doctor told us that Max needed any type of procedure or even glasses our trip to Baltimore would be confirmed then and there. The exam quickly progressed to the “color blind test”, he seemed to be failing that one too. I admit the whole thing seemed odd because Max has never shown any difficulty with his eyes of any type.

As soon as the “friendly” tech left the room I frantically picked up the first magazine I could grab and handed it to Max pointing to an article with the tiniest of print. Max began to read, “During the first months of life beast feeding your baby…” followed by “Mom, I see an “r” in this word so I know it’s not beast feeding but I’m not sure I know this word.” I had handed my son an article on breastfeeding! As quickly as I had given him the magazine I took it away, satisfied that he could read small print but waiting for the inevitable discussion of breasts and their use as a source of nutrition.

When the doctor came into the room he asked about Max’s current cardiac status and whether or not we were any closer to a definitive diagnosis on the connective tissue front. It always amazes me when doctors remember Max and his story but I guess it would be difficult to not remember Max, based both on his extremely unique personality and medical issues! He immediately told us that Max’s sight seems fine, there were no changes from last year’s exam. I thought, “Did this guy really see the results of the tech’s tests?” When we asked specifically about Max’s inability to focus on objects with both eyes he told us it was more of a neurological problem and not a problem with his eyes per se. Great, I now see another specialist appointment in our near future…..All in all I guess the news could have been worse, I say this tongue in cheek because we never know what the next doctor will say.

This part of my post is meant to entertain Ann. I received a call last night from a gentleman at APIPA (Max’s original State Medicaid insurance which covered all of his remaining medical costs not covered by our private insurance) regarding my recent issues with CRS (check out a few posts back about my follies with them) and their non-payment of Max’s medical claims. He gave me several pieces of very interesting information, evidently because Max has private insurance he DID NOT have to be enrolled in CRS, this is in fact what I always knew to be the case and had argued with CRS ad nauseam from the very beginning. I asked him if I should opt out of CRS and go back to just using APIPA, his response although diplomatic was quite telling, he suggested that it would be a good idea to do so in order to avoid all the issues we have experienced with CRS to date. This means we can go back to using our non-CRS doctors, Max’s claims being paid hence avoiding calls from collection agencies just to name a few…..Oh what fun I have on a daily basis…..

From 0 to 15 in Under 60 Seconds

Today is Ellie's 15th birthday, where did the time go?!

Ellie, we wish you a very Happy Birthday, may all your dreams come true (except a driver's permit), Love and Kisses -

Papa', Mamma and Max

The Unknown

This week Max has been very restless, he cries (something he almost never does), doesn’t sleep, and vacillates between not wanting us out of his site to giving me his first ever, “I really don’t like you Mom, I’m moving out!” (When I offered him a suitcase he did backtrack saying he thought he would just live in his room and never come out.) This is something I would expect to hear from my teenager but not my Max.

Coupled with this odd behavior Michele and I have been noticing physical changes in Max which seems to indicate some progression or change in whatever the hell Max’s undiagnosed condition is. Or does it mean nothing? Who knows? How much should we worry? Who knows? Because without a diagnosis, without a definable syndrome or disease we do not know what any physical change means for Max. No one knows, the doctors and researchers are not far along enough in their studies of Max to give us any type of “map to his future”.

Parenting a chronically ill child is extremely difficult; parenting a child with no diagnosis carries its own special pain. I am not the type of person who does well with the “unknown”. I like facts and resolution and being in control. We have none of that so every time Max looks or acts “not quite right” I spiral downward into a dark hole. After nine years I am physically and mentally exhausted from crawling out of this hole. But crawl out I must because there are doctors to e-mail and call, trips across the country for medical care to be pushed up by several months so we can be certain that we aren’t about to take a turn down some other winding, uncharted path.

Yes, I am tired but I look at Max and I know he needs me to not be tired, to not stay in my hole. He needs me to do what I do best…fight for him! And fight on we will.....