#74 - A Football Star

One of the many things that life with Max has taught me, is that life is just one big coincidence after another. That and Max can make friends with anyone, anywhere. Especially at a baseball game!

At this year's last home series for the D-Backs Max spent most of the game turned around in order to entertain the spectators behind us. (Much to Michele's chagrin because he was convinced that Max was bothering more innocent victims.) In yet another one of Max's many coincidences it turned out that the two couples sitting behind us have "ties" to Max's life , one couple, who are huge baseball enthusiasts (how could Max NOT have loved them?), live right behind the fields where Max plays football in Glendale. The other couple actually know Max's football coach. Small world! Once again Max and his incredible zeal and desire to entertain lead us to meet more wonderful people.

Ron and Kim have been fabulous in coming out to see Max play. Kim is a wonderful photographer who took these pictures at Friday night's game, what a great job! Thanks Kim!

Checkout more of Kim's work at: http://rememberwhenaz.smugmug.com/.

Weekend Wrap-up

Because in this house we live by the adage of “never a dull moment” our weekend kicked-off with a bang! After returning from Max’s first flag football game of the season (or at least his shortened season), we found Ellie at home obviously not feeling well. As the evening progressed, because an emergency just isn’t an emergency if it doesn’t happen after midnight on a weekend, Michele felt we needed to take her to the ER. By “we” I mean “me”, evidently as far as my husband is concerned I am the queen of the ER and the bypassing of all lines and wait times, after nine years with Max I must confess he’s right.

And thus began our “ER Drill” I quickly washed my face, brushed my teeth and put on my “ER sweats” (yes, I really do have clothes set aside for ER runs, those places are cold and germy and I’m not looking to win any beauty contests when I get there). I admit once we got there I may just have broken my own best time, we arrived at the ER around 1 am and Ellie was home and tucked into her own bed by 3, sleeping peacefully after a shot or two of morphine (who wouldn’t be?). Now I admit Ellie and her stomach virus are much easier to manage medically than Max would be with any of his myriad of ailments so I might not truly have any bragging rights on my personal best time on this one but a girl’s got to take whatever accolades she can get! I’m happy to report that Ellie is back to her old self: computer in one hand, phone in the other as she plans her Fall Break activities with friends. Love those Friday night fire-drills!

On the Max front, our plans for Hopkins continue to unfold. It has, unfortunately, been decided that Max will have to have surgery to biopsy his liver. We had been hoping and praying that his most recent labs which indicated an improvement in his elevate liver enzymes would put this procedure off but the GI doc feels they have been elevated for too long so we need a better idea of why. The worst part of the whole thing is that he honestly told us the results may simply come back as “unspecified changes” (in Max’s liver tissue), which is what most of Max’s test results indicate. We have come to accept Max’s “unspecified changes” but it just makes it so hard to put him through invasive testing to be told that there are abnormalities which cannot be treated because there is nothing specific to treat. The surgery will also extend our stay in Baltimore to be sure that Max has plenty of re-coup time before flying home.

Max knows we are staying longer than usual and even has an inkling as to why but he’s putting a positive spin on it all by assuming a longer stay means more DC cupcakes (one of his favorite TLC food shows) as provided by another of his adoring fans, my college roommate. Karen, I suggest you come through with his stash because everyone’s life will be miserable if there are no treats for Max!

Before closing I wanted to thank everyone who has helped us with this trip: the prayers and well-wishes are needed and much appreciated. We could not walk this journey with Max if it wasn’t for everyone who has stood beside us the whole way. Some we know and who have become family and those we don’t but we feel your love for Max all the same. Thank you.

It's a Date!

We just found out our dates for Hopkins yesterday. Max's appointments will all be the week of 11/8, somethings are already scheduled, others are waiting on test results to decide what needs to be done. Either way the fun can officially begin: travel needs to be coordinated, lodging needs to be found, and the most fun of all.... authorizations for medical services need to be obtained (x 2 for both of Max's insurances)!

As much as we look forward to seeing these doctors and discussing how Max is doing, we just really hate this schlep across the country! More news to follow....

Note to Ann: If you ever ended up finding the Xanax you REALLY need to share!

Who the hell does this?

I want to know what kind of "mother" (using the term very loosely) does this? It goes beyond scamming strangers but to make your child think he is critically ill? Most parents of children with serious, chronic medical issues struggle everyday to make their kids feel "normal". Why would someone want to make their child suffer like this? And all for $7,000.....

Michigan mom accused of shaving son's head, eyebrows to fake cancer arraigned on charges
10-01-2010 08:55 AM MST By COREY WILLIAMS, Associated Press Writer
ROSEVILLE, Mich. (Associated Press) --
A Detroit-area woman who authorities say told her 12-year-old son he had leukemia, shaved his head and eyebrows, and held a church fundraiser that pulled in more than $7,000 has made a brief court appearance.
Forty-seven year-old Carol Lynn Schnuphase (SCHNOO'-fays) of Warren was arraigned Friday in Roseville, Mich. Schnuphase faces two counts of false pretenses over $1,000 and one count of second-degree child abuse.
She was held on $100,000 bond and a preliminary hearing was set for Oct. 13.
Defense lawyer Dominic Greco says bond was set too high. He says Schnuphase has no money.
Authorities say the boy didn't have leukemia, and that Schnuphase drugged the boy's applesauce with opiates to make him appear lethargic.
The child is in foster care.

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