The Italian Adventure - Part II

We've been out and about quite a bit the last few days, eating as much pizza as we can, visiting with friends, and seeing more sights. As we wind down to our last week here we find more and more things we would like to do before we leave so our days have been pretty packed. Heck we've even been out during siesta time which really makes us look like American tourists!

We had our first "Max Emergency" tonight when I noticed he was covered in a red, welty rash as I helped him get his PJs on.  I immediately called Max's godmother (the pediatrician) and we received our first ever "house call".  Max was extremely impressed with the concept of the doctor coming to him as opposed to him going to the doctor in the ER. I'm praying this doesn't spoil him for our next ER run to Phoenix Children's! As of now we're on an antihistamine and we'll see where that gets us. I must admit I chuckle every time a doctor asks me if Max can swallow a pill or not....this leads me to believe that not every eight year old can swallow a fist full of pills in one gulp. Who knew?

I want to wish everyone a happy, HEALTHY new year from all of us! Enjoy tonight's presentation of the Marangella's "Italian Adventure"!

Make video montages at www.OneTrueMedia.com

From Italy with Love

May this Christmas bring you joy and the New Year bring you health and happiness! 

We thank all of our friends and family for all you do for us all year long. Without your love and support we would not have made it this far. Our love to all-

Michele, Patricia, Ellie and Max

The Italian Adventure - Part I

If it's Italy it must be churches, narrow streets, the sea, and of course FOOD! We've been out and about this week, as the cold rainy weather has permitted, doing the "touristy thing". The kids are having a blast, at least half of the town now knows Max as he passes the shops and houses greeting everyone with "Buon Natale".

Enjoy a glimpse of our adventures!

Photo and video editing at www.OneTrueMedia.com

Arrivederci Arizona!

A few weeks ago we had an incredible surprise that I haven't shared with anyone because I was afraid it would jinx us.


This year Michele's parents decided enough was enough, they wanted to see their grandchildren. Because they are no longer able to travel they realized the only way to do so was to bring the "mountain to Mohammed". Without a word to anyone they took the money they had been saving for the last two years and sent us tickets. At first I refused the idea because I have an incredible fear of taking Max out of what I consider my “comfort zone”. What if something happened and Max needed a doctor? Michele quickly reminded me that Max’s godmother is a pediatrician doing research on rare genetic disorders at a large medical center for children. I guess I had to strike that concern from my list. As I continued down my list I realized I really didn’t have any valid concerns or at least none I could use to keep us home. In the end I decided it would be stupid to pass up a free trip to Europe and began to pack our bags. 


So here I sit in my in-laws' living room updating the blog. The whole thing still feels odd, a bit like returning to the past. Michele and I decided this morning that in the last ten years absolutely nothing has changed here, time seems to have stood still. Of course it's all new for Max so it's interesting to watch his reaction to it all. In fact, he told us that the best part about this trip was flying in an airplane that wasn't going to one hospital or another for one surgery or another. It seems rather sad for an eight year to come to this realization on his own. 


The kids have been adjusting well to the time change but then Ellie never has a problem with sleeping and Max just doesn't sleep at all so it all works out in the end....sort of. The kids are enjoying the pasta, pizza, and ice cream while Michele and I concentrate on the wine. It's a tough job but someone has to do it!


Be sure to stay tuned for more news on "Max Conquers Europe"!

Top Model

It was a quiet weekend filled with the "simple things" in the life of a chronically ill child, one trip to the pediatrician, one trip to the lab for blood work and one trip to the allergist. That Max he sure knows how to live!

Yesterday, however, we were able to get out and have a little fun. Max was invited by his friends at Room for Joy to participate in their charity fashion show. We all know that Max jumps at any chance to be the center of attention and we’re always quick to lend a hand to an extremely worthy organization.

It was a great day with appearances by Santa Claus and the “Bat Mobile”. Max was just adorable and has decided he should wear more hats! This is particularly funny coming from a kid who doesn’t even notice if his hair is brushed or not….

Mr. GQ getting his pose down!

"To the Bat Cave?"

Ten Things I am Thankful for....

.....in no particular order:

1. My husband, although something tells me I might not be on his list. I figure that anyone willing to stick with me for 17 years has earned their spot on this list.
2. My kids. Yes, there are moments I'd sell them to the first band of passing gypsies but I know I'd be lost without them.
3. Health. There's nothing like having a chronically ill child to make you appreciate good (or at least stable) health.
4. All of our friends and family that have supported us these last eight years. You’ll never know how much you’ve lightened our load.
5. All of the empty bottles of wine that have supported me these last eight years.
6. The doctors, nurses and many, many others who have cared for Max throughout his journey. There has definitely been the good, the bad and the ugly but we have learned from each of them....some to grab onto for dear life and others to run from as fast as possible!
7. The many advances in medical care and technology that have saved my son's life.
8. Sleep, never underestimate any stretch of uninterrupted sleep longer than 30 minutes. Hence my next list item....
9. Coffee, coffee, and coffee!
10. Last but not least....Max thinks I should add the New York Yankees, Jeter, A-Rod, and Posada to my list as that was on his list in his Thanksgiving letter (no mention of his devoted family but who's holding a grudge?). 
    

Wishing everyone a very Happy Thanksgiving!

It’s Still Quiet

Thank God it’s been very quiet around the Marangella ranch although now that I’ve actually written these words I’ve probably jinxed myself.

Max is a bit junky this week and although his “rattled” breathing and runny nose frighten everyone during the flu season we know it’s just Max being Max in all his asthmatic glory. As note after note regarding his snotty nose comes home from his teacher I faithfully continue to send him to school because if I kept him home every time his nose runs he’d never see the inside of a 3rd grade classroom. I am certain they think I suffer from “bad mommy syndrome” because I send my sick child to school infecting the entire Western Civilization or at least one elementary school but my theory has always been that if he can breathe he can go, it’s not like anyone is going to catch asthma from him. So until I get a letter from the Board of Health he’s going to school if for no other reason than to save our sanity for eight hours a day. Let them answer his gazillion questions for a while because I just can’t keep making up answers fast enough.

There’s really very little other news to report, I’d almost verge on saying we’re becoming boring. Boring, now there’s a term I wouldn’t have use in the same sentence with “Max” but things have been uneventful and for now we’re enjoying it!

Finally!!

This time I have a really good excuse for the absence of updates.....Blogger has completely changed how these blogs work and I've been locked out for days! This evening, as I was ready to give up completely, one last ditch effort got me in. I don't know who was more nervous, me or Max. He was afraid his peeps would no longer be ale to follow his every move. The kid cracks me up, sort of.....He asked me if I couldn't get in because I forgot the password, after all "that's what happens to old people, they forget!"

Now that I've mastered new technology and I've gotten past my son's wisecrack it's time for an update from the insane asylum. This past weekend our friend Wendy gave us tickets to ride the "Polar Express" up in Williams, AZ. It was cold and snowy and for the first time since we've moved to Arizona it actually FELT like Christmas! The kids had a blast! I swear I could put those two kids in a car and hand them a sandwich and they'd be willing to go anywhere!

In keeping with the holiday spirit Max and Christie went to see "A Christmas Carole" tonight. I am presently enjoying the peace and quiet of being home alone, something that rarely if ever happens in this house. I'm sure this tranquility will soon be shattered as Max should be running through the door any minute now.

I better go have a sip or two of wine and wait for the invasion, have a great night all!

It was soooo cold! We even saw snow!

This One's for Max

New York Yankees

World Series Champions

2009

Tricks, Treats, Dances and Baseball

Although I always look forward to the weekends for a little R and R it never seems to work out that way and this weekend was no exception! Ellie had her first high school dance on Friday evening. Because this is the first academic year for her school it wasn't a homecoming dance but rather an "Up and Coming" dance. Either way it made me feel OLD watching her go off to her first formal dance. I guess it will only get worse when these events include boys.....I'm really not ready to go there!

Of course Saturday was Halloween and I'm happy to report we have almost NO candy at our house. Ellie really didn't care one way or another and Max did the obligatory round of three or four houses rushing to get home to watch the Yankees whoop the Phillies. In fact most of our weekend has been spent in front of the TV cheering as our team FINALLY seems to be heading towards the championship title. We've been waiting a long time for this, ever since '01 when Max was still in the hospital and the nurses dressed him in a D-backs' onsie just to make me cry!

Have a great week and don't eat too much candy!

No news is good news…..

…..I guess. Life has been so crazy the last few weeks I’ve had little time to think let alone update. As the kids came off the “piggy flu” we thought we would get a bit of a reprieve…except it’s us and we don’t generally mix well with tranquility. When asked recently how things were going at our house I replied, “Well, so far no one’s bleeding profusely and the house hasn’t blown up so I think we’re great. Thanks for asking!” Of course the inquirer responded with a look that suggested I must be insane (this guy catches on quickly) so I went on to explain that I long ago learned to set the bar low on what was good and what wasn’t. No reason to deceive myself, right?

As for Max we had a few check-ups recently and thankfully he seems to be doing well. I did get a shock last week when I called to get a refill on one of his heart meds, the nurse asked me if I knew that the doctor had retired months ago….I thought to myself how could I possibly know this when no one saw fit to call me with the news or at a minimum send me a letter. I admit I sat on the other end of the phone with my jaw dropped open like an idiot, for once in my life I was completely and utterly speechless. Once again my son, the high-risk cardiac patient, is without a local cardiologist! I really and truly hate this game of finding a doctor I can live with (not necessarily outstanding mind you but someone you trust enough to bring your child to) only to lose them a short time later. I guess it’s really the management of a chronic child, the doctors, the hospitals, the therapy providers, the insurance companies etc., etc. that makes me the craziest because there really is no end to it. As soon as I resolve one issue another one erupts. I swear I don’t know how I’m not addicted to drugs or alcohol or both!


In Ellie news, she just finished swim season on a high note as she “placed” in her individual category at the regional swim meet, which means she is one of the strongest “freestyle” swimmers in the metro Phoenix area. Hopefully we’ll be able to get her into a club team where they groom the next Olympic gold medalists in the hopes that one day she will have some kind of multi-million dollar commercial deal with one sponsor or another (my retirement plan depends heavily on this).

As for now I think that’s all my “printable” Marangella news, thanks all for checking in!

Quarantine

This week we have been in “quarantine mode”. Ellie was the first to fall over the weekend with a super high temp (103.8), sore throat, and a cough that would scare just about anyone. As we started our week things just went downhill fast. On Monday I had Michele take Ellie into the pediatrician, fully expecting a diagnosis of the common flu or at worst strep throat. But as we all know nothing is that simple at our house. I soon got a frantic phone call from Michele saying Ellie was positive for H1N1 (a.k.a. Pig Flu to the kids) and Dr. Schwartz wanted us all treated immediately before Max got it. Too late. I picked up a very snotty, wheezy child from school not much after Ellie’s official diagnosis. Max was already down for the count. And so it begins…..

I was able to get our prescriptions filled for Tamiflu with little problem (if you overlook the cost of the stuff) but Max’s pediatric dose was nowhere to be found, anywhere, anyhow in a thirty mile radius of the house. Seems the pharmaceutical company didn’t see fit to produce any in time for the flu season….maybe by November I was told. Now in an absolute panic as I watch Max’s breathing getting rougher and rougher I realized a trip to the hospital might not be far off because it would be the only place we could find the right dose. In my desperation to avoid “dirty” hospitals I called a local compounding pharmacy which was able to make me some from scratch (Max’s interpretation of the situation). Yet another disaster evaded by no less than 30 – 40 phone calls on my part.

So the kids have been home all week much to Michele’s chagrin and won’t be allowed back to school until after Fall Break which is next week. I have found that once I mention that my children have been ill with this dreaded flu people tend to take a HUGE step back as if we have the plague. I must admit the first couple of days were crappy but not much more than any other flu would be, in fact, I think Ellie was sicker than Max. Michele is now convinced the whole thing may be hype produced by the pharmaceutical companies and the media. Who knows, I just hope we can check this one off our list of maladies.

As always, thanks for checking in!

Another Backseat Conversation

Last night as Max and I were driving home he started a conversation on the concept of “luck”, Max concluded that he was not lucky at all because he has a heart defect. After a few moments and more thought he decided that it wasn’t true, he wasn’t unlucky because “even if my heart’s not right I have doctors who love me enough to fix it and save my life”. Talk about taking your breath away….how can an eight year old be so insightful into matters such as these?

Of course it’s probably only fair to mention that Max finished this conversation only to move on to “Mom, what’s for dinner?” So from the profound to the practical, Max was able to decide on his fate and to let me know unequivocally that he was not interested in leftovers for dinner at all!

What a night!

As of late I haven’t been sleeping…at all! So last night I forced myself to go to bed around midnight, I must have drifted off because the next thing I knew it was 12:15 and Max was running around the kitchen with one of his epic nosebleeds, argh!

Here we go. We all know the drill: one of us holds his nose while the other goes to get dressed, we then switch places until we’re all dressed, except for Max who is wearing a pair of PJs that look like he works in a butcher shop. We fiddle with everything we have in our bag of tricks: holding his nose until it turns blue, using a clothespin looking device to hold it shut, and finally we pack it with the same stuff boxers use sometime in the 3rd round of the championship fight. We know when all of this is failing because Max starts to spit up copious amounts of blood and, not to gross you all out, it starts to come out his eyes. The first time this happened we were in the ICU at Hopkins and I completely LOST IT! That was until I realized it’s all the same plumbing system, if you close off one pipe another will spring a leak, so now none of it freaks me out. It is what it is, and unfortunately “it” is ours.

As we came to realize that we were failing miserably at getting the bleeding to stop, we start to get everything together for a midnight run to PCH (thankfully we were already dressed). By this time Max is hysterical, not due to the blood but he just doesn’t want to go. He was absolutely inconsolable which is difficult to watch but when he came to realize that he wouldn’t be able to play football tonight he really lost it. Of course crying makes it all worse so now we are trying to hold his nose, hold his spit up bucket, pack bags, take the dog out, wake Ellie with the news and most importantly calm Max down. Certainly any spectator of this scene would not have believed the unbridled chaos that was our kitchen.

We decided to try packing it one last time, this was attempt number three and evidently three really is the magic number, it seemed to work! So we all proceed to the sofa and stare at Max’s nose, waiting to see if Mt Vesuvius would blow again, it was sort of a cute scene, Max with his clothespin on his nose lying up against his dad, heading bobbing from sleep but refusing to give into it. Finally around 5 am we all went to bed….for 45 minutes when it was time for Ellie to get up for school! Max, of course, was already playing baseball on his PSP looking a bit like Rocky after he lost the fight to Apollo Creed but otherwise happy.

I swear this kid will kill me yet!

Pleasant Surprise

If I was keeping score I'd say we (Max really) won today's IEP round 2 to 0. That's right the school gets a BIG FAT zero for their efforts this morning.

Now I know no one likes a sore winner but here's how things played out.

• As we walk into the room I am greeted by a woman who introduces herself as a Speech Pathologist. Really? Speech therapy for Max? What are you going to teach him...how to shut up? She told us she felt Max qualified for an "evaluation" due to some lisping of "s" and "z". Seriously has this woman ever been to an extended family dinner at our house? The whole family is spitting and slurring their "s" and "z" sounds (this is before the wine even comes out). We agree he can be evaluated but we do not agree that he should be pulled out of class for Speech. She actually agreed with us! One point for us, zero for them. Heck it was almost as if the Therapist kicked the ball into our goal for us. She actually admitted that Max didn't really need the services being proposed!
• Now it was the resource teacher's turn. She went on and on about the progress Max has and is making, that she just couldn't be more pleased with him, etc., etc. At this point I can't help but think she too is planning on kicking the ball into our goal for us. And guess what? She did! She proposed that the kid who is reading on a 14 year old level should "graduate" out of resource reading and be returned to the classroom with his peers. At this point I decided I wouldn't fight for the "gifted" program as was suggested by the docs who evaluated Max last fall but at least he's out of that horrible room! Without a peep out of me (hard to believe, huh?) we earned another point. Point two for us, nada for them.

The rest of the meeting was really rather boring. Medical issues, concerns, etc. It's amazing how I was convinced today would be an ambush but instead my son once again proved me wrong, after all it was his hard work and desire to prove his naysayers wrong that got him this glowing report. I wish you could have seen him run out of school today shouting and giggling that he had "graduated" from "that stupid phonics class". His smile was so broad and his delight so real that in that moment I realized it truly is all about him, getting him the support he needs and being sure he has all the tools necessary for his success within reach. It is not about me and my desire to prove to the world that this child of mine is the most wonderful being God ever created (I'm his mother I've earned that right), it's not even about my need to fight the system (although I admit this trait is really pre-Max), rather it is about him, his happiness, and his self-earned success.

You go Max! You go!

Nothing too Exciting

Max is getting very nervous about the fact that his secretary has not been updating “his page” quite as quickly as he likes. Fact is I have very little of an exciting nature to share. The kids are in full swing of school and all the activities that this entails. Ellie is gone from 7am to 6pm everyday between school and swim team practice. Max on the other hand gets home at 4 but only has time for a quick snack before therapy of one sort or another begins. Then of course there’s always dinner to get ready and the ubiquitous homework to get done. I swear that no one told me Max started college this year; he actually has more homework than Ellie does for her honors classes. How does that happen? Before the school year started a friend told me that 3rd grade is always hardest on the kids and I guess she’s right once again (yes Ann, I’m talking about you). After full days like these I would expect the kids to fall into bed exhausted but instead just Mom does (something tells me the wine helps with this)!

Max started catechism again this week. He was quite surprised by this because he was convinced he “took care of everything last year” (direct quote). Last year, as some of you may remember, Max received the Sacrament of Confession which he used to his fullest advantage by confessing his parent’s sins not his….I can’t wait to see what he does this year as he prepares for the Sacraments of Holy Communion and Confirmation. I’ve learned to not hold my breath with this kid!

On the topic of religion I ask that everyone pray for me this week, we have Max’s IEP on Wednesday morning and I’m hoping I don’t kill anyone….wait, it might be better if you pray for the school officials. Stay tuned for more news on this front!

Have a super week all!

On the Lighter Side

What follows is part of the conversation overheard from the back seat as we drove home from yesterday’s ball game.

Max: El, how old is Joe Torre?

Ellie: I don’t know, he’s probably ancient……like Mommy’s age or something.

Max: But he’s not dead yet!

Of course what followed were gales of laughter between my children and a big smile from Michele.

Have a happy week all!

Sometimes This is So Hard Part II

Although I thought my last post covered most of the realities of Max's school day, last night I was hit in the face with a little more reality. As usual Max came home from school with his report for the day, how he did, what he did, etc. Most of it was typical stuff but as I got to the very bottom of the page there was a short note that read, "Max was sent to the RC today" followed by a frowny face. Not knowing what the "RC" was I didn't know what to think but the frowny face indicated to me it wasn't positive whatever it was. When I asked Max about what happened he immediately became agitated and told me he couldn't remember, the more I pressed the harder he cried. At this point I didn't know whether to scold him or comfort him because I really didn't have a clear picture of what had happened.

When I took him to the sofa and talked to him eye to eye I could see the tears well up and run down his face, it was really heartbreaking. But still I didn't know what happened. As Max talked, as best he could through his tears, I came to understand that the "RC" was where you were sent in the office for being bad. OK, great Max had misbehaved and clearly someone would throw this in my face at some point....or so I thought. As Max continued I came to understand that during recess the rest of the boys were playing football and they wouldn't let him play because he wasn't as strong or fast as they were. In fact, he said he was tired of never being picked to be on a team. He told me that all he wanted to do was play the game with the other boys so he tackled the kid who had the ball. That's when all Hell broke loose, Max got in trouble for tackling the little boy although he said they were playing "tackle". Hence Max's trip to the "RC".

By this point I was comforting Max with my own tears streaming down my face. How do you possibly confront this situation in a manner that is both positive but also realistic? Do I explain to Max that today's events are only a taste of things to come or do I tell him it's OK and those boys just don't realize they're being mean? On one hand I don't want to crush Max's self-esteem by telling him that he is "different" but on the other hand I would prefer this news come from me, someone who loves him to pieces just the way he is, not someone who doesn't care one way or another. I really do hate this because either way I will question if I handled the situation correctly. I can't let Max get away with bad behavior and bad choices just because he is frustrated even if what is frustrating him is some other idiot's actions.

So as best I can tell I have to make a trip to the school on Monday morning and straigthen this whole mess out. Believe me there are days I just wish I could keep Max home and protect from the lunacy of the "real world" but logically I know that's not realistic or fair to him....sometimes this is all so hard……

When Others Don’t See What You See

We are about five weeks into the school year and it’s becoming more and more apparent to me that many of the people Max comes into contact with throughout his day just don’t see in him what we see in him. We see a child who has had to scratch out a place for himself from day one. His survival, his success was never a given but rather a daily fight that Max in many aspects fought by himself every day. We could be there with him but he was the one who physically did it all, survived the surgeries, the countless tests and most importantly the doctors! There were (and are) ultimately only two people who decided Max’s future – him and God.

Because Max was not physically strong he developed other skills – he spoke his first words at 9 months yet he didn’t sit up on his own until his first birthday. He could put sentences together at 15 months yet he didn’t walk until he was 21 months old. Max has been different by necessity from the beginning, not just medically but also emotionally and I really think others sometimes have problems with these “differences”. They find it problematic that he needs to understand the why and how of things and so asks a gazillion questions. They prefer the child who takes in what you tell them and then spits it back out at you. Period. End of sentence. The child who delves deeper causes a bottleneck in the “flow” of the classroom.

Because of this I know that when we go into school in a few weeks all hell will probably break loose during Max’s IEP (Individualized Education Plan). Have I ever mentioned I detest IEPs? Without a doubt the IEP process is one of the worst aspects of parenting a child who is different in any way. Why is it that society is so wrapped up in the “norm” and anything short of that causes them problems? When we go to these meetings I usually bring a picture of Max in his early days just hours post open heart surgery, my goal is not to “gross out” the teachers, psychologist, aides, etc. but rather to drive home to them that no matter what they think Max has made more progress that the entirety of his classmates put together and then some. I want them to know that when they doubt Max and his abilities they are nothing short of dead wrong. This child is different -- he is not stupid, he is not incapable. Yes, he is strong willed and very determined but he has had to be and it is not automatically a negative to have a strong personality (he is my son after all).

During the IEP I will have to fight like crazy to make sure that Max gets only the services he needs not the ones that are easiest for the school. He doesn’t need to be pulled out three times a day to be taught down to, he reads at a middle school level why in God’s name are you pulling him out for resource reading? Oh, right it’s easier for the teacher to have one less student in the classroom. I am certain many of them find me to be “one of those mothers” who just doesn’t get that their kid isn’t perfect, as if the 35+ surgeries didn’t already teach me that, but I am not. I am not the “hysterical mother” I am merely realistic that Max is what he is, for good or for bad. Why can’t they just see the good as well as their perceived bad? Sometimes this is all so hard…….

Fourteen Candles

Ellie's big day was great. She spent some time with her oldest friend who moved away two years ago and of course she had the birthday dinner and cake of her choosing. Who could ask for anything more?

Have a great week all!

Happy Birthday Ellie!

I'm sitting here trying to remember the night my first child was born. In typical Marangella fashion it was a dramatic emergency c-section and although I remember very little of all the chaos in the delivery room I still have a very clear memory of a nurse whisking by me with the most beautiful pink baby with great big black eyes and a perfectly round head. I should mention she was "whisking" straight to the NICU where Ellie spent her first two weeks of life. We never, ever do anything the easy way and at the time with Michele stranded in Italy and me relying on my mother to drive me to the hospital everyday (that's a whole other story, I should mention that my mother does NOT drive on freeways and we were in California, got the picture?) to see my baby I thought it was the end of the world. Two weeks in a NICU seemed like an eternity, in reality it was my "practice drive" for things to come with Max.....

As all moms know there are few life events that rival the birth of your first child, no matter how they arrive.

Ellie, we might not say it often enough or loud enough but you are loved as only a first child is loved. We wish you a very happy and healthy birthday....and please stop growing up you're making me feel old!

Photo and video editing at www.OneTrueMedia.com

Thanks Christie!

Today I realized that I don't take pictures of my children anymore, I just rely on Christie to do it! In the end it works out really well (or at least it does for me) for many reasons: Christie takes a much better picture than I do, she actually remembers to take the camera with her on outings and above all else she's not as lazy as I am!

These pictures are from last weekend when Christie took the kids to Makutu's Island, a D-backs game and a concert all in one day! They were thrilled with all the activity and well let's just say I was thrilled to not be the one doing it......

We've finally caged Max in, it didn't last......

Just hanging out.....

What a great picture!

Max and Co.

There's nothing like seats in the "All You Can Eat" section. Max was in Heaven!

I see you!

Just a little blurry, Max may have taken after his mother when it comes to his photo taking skills.

Max at a ball game, playing a ball game on his PSP, don't ask.....

My Turn

We’re just home from the hospital but this time Max WAS NOT the patient! It all started Saturday evening, while we were sitting on the couch watching a movie I had a quick onset of severe chest pain and numbness, mostly in my arms. Because I felt no better on Sunday morning I ACTUALLY said it was time for the ER (which immediately scared Michele because I always refuse to go to the doctor no matter how crappy I feel). Long story short after spending most of the day in the ER I was admitted for observation and Michele finally went home to the kids who had been alone most of the day.

On Monday morning I was set to bust out when the attending doc made it clear to me that he was NOT cutting me loose. When I saw that assuring him I was feeling fine wasn’t working I turned on the water works and pleaded to be discharged. He wasn’t budging. After hours of test after test after test and no sleep whatsoever Max showed up after school for a visit. He was quick to pass on some of his veteran tips for hospital survival:

1. Although he knew being in the hospital was boring if you ask for a coloring book and watch Sponge Bob it wasn’t too bad.
2. Never order the chicken nuggets, they’re soggy.
3. Avoid the hospital school and doing your homework at all cost.
4. NEVER let them put the IV in your hand (too late for this piece of advice).
5. Don’t cry if it hurts.
6. If you’re good during blood tests you’ll get a prize from the treasure box.
7. And most importantly, leaving the hospital is the best part of all!

Thank God I had Max to guide me through, it was really quite sweet….up until the point when they delivered my dinner which he dually sat on the bed to eat while watching Sponge Bob. Perhaps he was just demonstrating how well his tips work?

Fortunately everything seems to be fine, it was suggested I stay as calm as possible and cut out all sources of stress. I’m still laughing my you know what off at this prescription but at least I’m home so they can’t consider moving me to the Psych floor for hysteria!

Still Here

I considered blaming the lack of recent posts on the start of school and all the chaos that brings but I decided that would just be more of an excuse than anything else. Indeed life has been rather boring, or at least as boring as it gets at our house, so I haven’t had a great deal to report. The kids have pretty much settled into their routines and we’ve settled into yet a greater lack of sleep. I find myself already looking forward to Fall Break which for me translates as a week off from chasing kids to each of their many events, religious ed classes, therapy sessions, etc., etc. Plus there’s always the added bonus of no homework, talk about a perk for mom!

On the Max front I am ashamed to report that this morning I actually turned into one of those mothers I despise…I sent Max to school with a cough and a lovely case of the sniffles. I really hate when parents send their sick kids to school but with Max whenever one of these respitory events starts I know it’s the prelude to a week’s absence at school. So this morning I decided to send him in just long enough to infect everyone else and to pick up his work packet for the week so that he won’t get too far behind. Selfish, I know but I try not to max out his absences in the first month of school. As much as I abhor sick kids being sent to school I have equal disdain for obnoxious letters sent home from the school regarding excessive absences. I often wonder why after four years they actually waste the paper these letter are printed on, it’s not like they don’t know Max’s medical history. Certainly they get the fact that he is going to be sick more than your average bear. Heck, they have letters from several doctors telling them this. Ah the bureaucracy of the public school system, gotta love it!

Ellie seems to be surviving her first days of high school. However, I can’t be completely sure of this because when we ask her how her day went we get the typical teenage answers, rarely more than one word in length. She has been put in a few honors classes, has tested out of two years of Spanish, and is on the swim team – hopefully, she hasn’t bit off more than she can chew. So academically she seems to be doing well and on the “practical” front she has mastered the bus route situation, mostly because I decided to let her handle it on her own which means I can no longer screw her up.

After my last post many of you asked for the full bus story so in hopes that Ellie won’t be reading this (she’d kill me for embarrassing her) I will enlighten you all on the pandemonium of her first day of high school which all began before she even arrived at the doors of the school building. Long story short, this year marks our first experience with the monster known as the yellow school bus. Until now we have always dropped Ellie at school and Max’s principal told us from day one that he’d prefer to have us drive Max to school. Evidently he’s a bit freaked out about having a kid with nothing more than wire clips holding his chest together on the school bus. Go figure…

And so I digress...picture the first morning of school, dad finishes taking the obligatory “first day of school” pictures and off we go to the bus stop. Our first mistake was that we were about ten minutes early so as we came around the corner we saw the bus (or so we thought) pull up to the stop. I yell, “Run, Ellie, run!” so off she goes and boards the bus. As I turn to walk home I see one of our neighbors pulling up with his daughter in tow. I decided to refrain from telling them that they missed the bus, smug in my triumph of the school bus routine. Within a split second, I realized these folks have far more experience with the yellow beast than we do. I immediately get a sinking feeling in the pit of my stomach – I had put my daughter on the wrong bus to destinations unknown! As I arrived home I received the first of a barrage of texts from Ellie, she was on the way to another high school about ten minutes away. I told her to sit tight and wait for me to pick her up so I could take her to the right school. By this point Max was laughing hysterically at the idea of his sister being lost, surprisingly enough Michele was not quite so entertained by my incompetence. As I’m hopping into the car I get yet another text from Ellie telling me that the bus driver was brining her back to her bus stop. I heaved a big sigh of relief which lasted about ten seconds as I watch the right bus pull up, load kids and depart. I continue my wait and yet no one shows, by this point I have no idea where Ellie is. Finally, I text her to ask for her status and she replies that she is at the right school because bus driver #1 (wrong bus, wrong route) has flagged down bus driver #2 (right driver, right bus) and they made a transfer of hostages mid-route. (“Gee El, thanks for the update,” I think to myself.) And to think we were able to fit in all this excitement before first bell, talk about the Keystone Cops! I’d like to think we are very talented at disaster-causing events but Michele insists it’s just that we aren’t happy if we’re not making a name for ourselves! So there you have it, it wasn’t as short a story as I hoped, but you can’t always condense chaos!

Just received a call from Max’s school, my ruse has back-fired and Michele is on his way to pick up typhoid Max as I write this. Oh well, can’t blame a girl for trying. Wishing everyone a great week!

And so it begins.....

On Monday the kids started a new school year. Gone are the days of endless hours of TV, computer and video games. Gone are the days of no schedules, late dinners, and most importantly NO HOMEWORK WARS! Life as I came to know it has officially ended.

Obviously the kids were equally excited about the start of the academic year. Ellie started high school and it's not only a school change but her first ever venture into the public school system and all that this entails. Max took the whole thing in stride as he usually does. His classroom this year includes 31 kids! Word on the street is that his new teacher is a no-nonsense, get your work done, stay organized and do it all quietly type of girl. I've been told you can hear a pin drop in her room. And then came Max....God help them both!

So all in all we seem to be surviving the first few days of school...that is if you overlook putting children on wrong buses to wrong schools (that's a whole other story)...

Enjoying the last few hours of summer freedom.

Why is Max's desk the only one directly facing the blackboard?

Could this be the last smile we see for the next nine months?

Walking to the bus...the wrong bus that is!

What the New School Year Means to Me

No this is not the title of a student's essay after their long summer break but rather the thoughts of a parent of a chronically ill child.

Every year at this time, I find myself to be more anxious than I usually am and believe me I have become a very anxious person these last eight years. At first, this anxiousness is just a strange feeling in the pit of my stomach but it soon evolves until I realize that it’s the start of the school year that has me so uptight. This isn’t a carryover from my own school days but rather a concern for what the year will bring for Max. Who will his new teacher be? Will she understand and accept him for what he is or will she only see a child with a long list of medical problems that in her mind equates him with “stupid”? I know that for some of you this might seem a gross exaggeration but if I’ve learned nothing these last few years I’ve learned that society as a whole has no idea how to deal with the chronically ill individual. For chronic kiddos this often means that in the minds of some their physical challenges are often confused with mental challenges. As we all know this doesn’t apply to these children and it certainly doesn’t apply to Max. Yet we have encountered it time and time again, and I must admit it’s one of the things I hate most about parenting a medically fragile child. When Max was little we could keep him insulated in our world and the medical world where everyone is used to children like Max and adores them for who they are, not what they are. At the time, I dreaded the day when Max would no longer be in our cocoon and would face these types of issues. That day has arrived and it never really gets easier. It affects our relationships with everyone, the school administration, teachers, classmates and their parents. We often walk away from these encounters knowing many of these folks look at Max (and us) with uncertainty and worst of all pity. It’s difficult to be seen as “different” when we don’t feel that we are. Yes, we have a ton of medical issues and all that this implies to deal with but underneath all of it we are really just a family going about the mundane tasks of daily living just as all families do.

So here I sit anxious beyond belief, praying that this will be a good year for Max. The beauty of it all is that no matter what Max is such a happy-go-lucky kid he’ll have a great year in spite of what happens, including all of my worrying. Thank God this child has such a wonderful outlook on life, in spite of all he’s been through. I guess that in the end this means all my worrying is just wasted energy…not that this logic stops me. After all, one of the biggest perks of motherhood is the ability to worry about everything and anything!

In closing, I must also add that Ellie starts high school this year (Is that possible? After all, it was only yesterday I dropped her off for her first day of kindergarten.) We all know that this brings on it’s own type of anxiousness....ah, the joys of parenting a chronic kiddo and a teenager….and people wonder why I drink!

Max's Guardian Angel

This week Phoenix Children's Hospital and many "Heart Families" said goodbye to Mike Teodori. If you ask a colleague they will tell you that Dr. Teodori is one of the country's top pediatric cardiothoracic surgeons, if you ask one of "his families" they will tell you that he is a beacon of light in the darkest nightmare, a shoulder to cry on when you think you have no more tears to shed, but above all else he is a man who works miracles with our heart kids. Dr T does all of this without ego or pretense. Whenever we run into him hugs and kisses are exchanged as if we just ran into an old friend or family member. He thinks nothing of bending over and picking Max up to give him one of his trademark bear hugs. We all adore him and so it was with very heavy hearts that we marked his departure from Phoenix. We count ourselves among the lucky; we will stay in contact with Dr Teodori as he promised he’d never be more than a phone call away. Because I am sitting here with a lump in my throat, I think I'll just call it a night. What follows is part of the tribute we wrote and shared with the other families at this week's farewell as well as some photos of Max and his guardian angel.

...how do you put into words what a man like Dr. Teodori means to us? There's so much we want to say but somehow words don't adequately describe what we as a parents feel. How do you possibly thank someone for saving your son's life....more than once! That first year when Max was inpatient and underwent dozens of surgeries and procedures there were no words we found more comforting then hearing Dr Teodori say he would head up Max's care. When many other doctors treated Max as a lost cause, he gave us hope. As long as he believed in Max we did too!

When Max was about three years old he told us about being in the OR before Dr T began his open heart surgery, it was Max's first and he was only six weeks old. Naturally we thought he was enlisting a toddler's imagination but what he said to us took our breath away. He said, "When they brought me into the room Dr Teodori put his hand on my forehead and told me it was going to be OK, he was going to fix my heart." While we logically know Max could not have a real memory of the surgery we know his description was probably not far off track. In our mind's eye we could imagine Dr Teodori making what might seem like a simple gesture to a patient but it truly represents what Dr T is, a man who loves all his children as if they were his own.

Dr Teodori, we love you, we thank you and we will miss you with all our hearts! PCH will never be the same without you! Grazie Mille!

Before - Dr T and Max at 8 months old

After - Dr T and Max at 8 years old

A surgeon admiring his work

Just a few of Dr Teodori's mended hearts

From Cooling to Heating

In an attempt to remind us that our "black cloud" is never far away our oven exploded last night. Now I 'm sure that those of you who know me think I am exaggerating but alas no, not this time anyway. As I was getting ready to put dinner in the oven I noticed a spark and then a flash of light when I opened the oven I realized that the heating element was on fire. We turned it off and unplugged it and still it smoldered, off Michele goes to get the fire extinguisher......after several sprays the fire was out but my kitchen looked like a crime scene. Who knew a fire extinguisher was nothing more than a very fine, sticky powder? We're still cleaning up the residue this morning. We had to coax the kids back into the house after this exciting event and Max still needs convincing that his house isn't about to burn down. So we've gone from the inability to cool to the inability to heat....never a dull (or inexpensive) moment at the Marangella residence......

On a very happy and touching note, the little boy who lives around the corner came knocking on our front door last night with a championship metal in his hand. He explained to me that his team, coached by his father, had won the state championship and that they had dedicated the game to Max. While this little boy goes to school with Max and we know his family from around the neighborhood the rest of the team doesn't even know Max. We were all surprised and touched by this incredibly sweet gesture. Max hasn't taken the metal off and I have once again been moved by how my son, just one little boy with a very special gift, has touched so many lives. It confirms to me that Max has so much to teach to so many.

Good News/Bad News

I don’t really know how to best classify any of this news so I’m going to break it up into the following categories:

The "No Duh!"

Our most immediate issue with our AC unit truly is the compressor, this was just confirmed for us by another contractor (the second in the last five days, the umpteenth in the last five years).

The Good

There are folks out there that will do anything to shut me up and get me off the phone. One such person would be the Phoenix area rep for Carrier. After many, many phone calls and me sobbing about how we cannot live this way anymore, my ill son, etc. etc. this gentleman was gracious enough to do “what’s right” as he put it and give me a new compressor although my warranty was up six months ago (typical). Thank God for all those years of Catholic school where I learned from the best that guilt is your strongest weapon…thank you Sister Mary Catherine wherever you are!

The Bad

Although the compressor is being covered under warranty it is our responsibility to pay labor….to the tune of $880.

The Insanely Bad

All in all we have put in well over $2,500 into our AC just this season alone….I’m praying we’re not about to throw good money after bad!

As I write this I have Michele shaking out the sofa cushions in hopes of finding $880….if not is anyone interested in purchasing two kids and a dog? Cash and credit cards accepted and shipping is free!

Hopefully, I’m done talking about air conditioning for a while although our track history tells me not to hold my breath.

Deja Vu....Again

I am writing this while sitting in the fires of Hell, one guess what isn't working at our house and for the first time ever I am not referring to the rest of my family! As of late this afternoon we are without AC again, it only took another $185 to confirm this diagnosis. So as of now it seems our unit has taken its last breath, according to the repairman we have little hope of reviving it. It amazes me that it's actually possible to spend this much money on mechanical equipment that does not work.

In other news, it was really a rather dull weekend, if you discount the fact that the kids' fish decided to leap to its own death on Saturday evening. Seems we're having a rash of untimely deaths at our house....this time I can only pray that these things don't always come in threes. The next thing that breaks is on its own, I (and my credit cards) refuse to rescue anything else. Did I mention my dryer only starts when it feels like it?

Praying for a better week for everyone.

Deja Vu

In the words of the great Yogi Berra, tonight was "Like deja vu all over again." After a very long afternoon of doctors' appointments we came home to find that the air conditioning was not working AGAIN! In fact, you know it's bad when you call the AC guy and all you have to say is "this is Patricia..." and he knows exactly who you are. Evidently, my address is stored in his GPS.....none of this is a good thing.

We were lucky in that although we had record heat today (it's all relative in Arizona) the repairman came right out. That's where our luck ended. It seems our unit needs at a minimum a new compressor which could act as a band aid for what we really need.....a NEW UNIT. None of these options are inexpensive, so this evening we took the cheap route (again it's all relative) and spent several hundred dollars on compressor tubes, pea traps (I think that's what he called it), and some ungodly amount of Freon....I expect to be calling my AC friend sooner rather than later.....

Happy weekend all!

The Weekend in Pictures

What do you do with kids on a hot summer day in Arizona? You send them to the Science Museum and if you’re really, really lucky you can send them with someone else! It was a blistering 116 degrees on Saturday, the sort of day you can’t walk outside without feeling as though your skin is melting. On a day like this we would typically be stuck at home with whining kids who claim to be bored although they possess laptops, video games, piles of library books, and every other diversion known to man.

In light of this looming reality, you can imagine my glee when Christie offered to take Ellie and Max to the museum for the day. Just one more win-win situation resulting from this girl’s ability to put up with my children for extended periods of time, no easy feat believe me! The kids were entertained and I was able to enjoy the peace and quiet of no kids and the ability to get housework done without interference (what an exciting life I lead).

These are photos snapped by Christie of the big outing; it seems the kids had a blast. I’m not brave enough to ask Christie if she was as thrilled to be there as they were…

How we spent our holiday weekend.....

Just when I thought we would spend a quiet holiday weekend hanging out at home, sh** happens:

Max had been complaining (very unusual for Max) for days that his right foot was hurting so after watching him hobble around the house I realized it was time for our semi-annual staycation at the Phoenix Children's Spa and Resort.....off to the ER we went! I decided to brave it alone so just Max and I went giving me the added bonus of being able to play the martyr with Michele. After many, many hours of sitting behind a curtain, my son on a gurney, I on the standard issue folding chair, I realized that in Max's eight years of life I have spent exactly one half of his 4th of Julys with him in one hospital or another. We'll have none of those boring BBQs, parades or fireworks -- nope, we go straight for our own special brand of fireworks!

For once Max was among the least seriously ill, this I know not because a nurse or doctor really ever wandered into Max's room and told me so but by the shear number of police (taking criminal reports -- ouch!), paramedics and security guards coming in and out of the ER it was clear that Max was low man on the totem pole. So after a series of x-rays which had to be read by no less than half a dozen doctors, we received the diagnosis of "Kohler's Syndrome", simply put the bones and joints in Max's foot have somehow been injured as a result of a vein being cut off and not sending enough oxygen to the boney areas of his feet. (Sorry, that's my best shot at a layman's translation of what I could squeeze out of the ER doc who seemed to understand little of what the orthopedist had just told him by phone or his Internet search...you pick). So after nearly eight hours we were sent home with a temporary cast, strict instructions to not allow Max to walk or otherwise put any weight on his foot, and to see the ortho doc on Monday for a permanent cast.

Now many of you might be asking the question, "How is Max to get around without walking?" Because the doctor in the ER felt crutches were not a great option for Max they just wheeled us to the door with a smile and a "good luck". I must let you know that after lugging Max's 62 pounds around all day and my inability to get anyone at a DME supplier, pediatrician's on-call service or even the ER itself to see the wisdom in providing Max with a wheelchair, we as desperate parents came through once again. Exhibit A, Michele's soon to be patented "zoombuggie":

Not pretty but it does get a kid from kitchen to potty in under 60 seconds. Necessity is without doubt the mother of invention!

And so we have arrived at the end of another star-spangled, spectacular 4th of July!