Happy New Year

Wishing all our friends and family across the globe a Happy, Healthy New Year! We hope that 2009 brings you all joy, love and prosperity. Much love -

Michele, Patricia, Ellie & Max

Mr. Max in the Media

Today I received an e-mail from a friend at the Foundation at Phoenix Children's, a few months ago they ran a story about Max and Max's Market in their quarterly magazine, "Hopes and Dreams". They now have the story in electronic form on their website, I thought I would share it with everyone. Click on this link and be sure to go to page 15, http://www.phoenixchildrens.com/ways-of-giving/hopes-and-dreams/h_and_d_anniv.pdf

Remember if you know anyone who would like to help Max help his friends at PCH just let us know!

Holiday Wrap-up

This year’s Christmas had a very late, slow start at the Marangella household. We didn’t get a tree until late last weekend (Max did the picking this year and I think someone forgot to tell him that we don’t live at Rockefeller Center, I’ll try to post a photo of this monster tree later) and our decorating was half-hearted and complicated by the fact that we couldn’t find a large part of our Christmas decorations in the garage. Due to the mammoth size of the tree I made so many trips to the store for lights I was afraid my photo would soon be posted at all of our local Targets with the description, “Beware of insane women still looking for Christmas lights on Christmas Eve.” This year everything seemed so last minute and rushed I’m not sure it ever really felt like Christmas. Our Christmases have always been loud, crowded affairs so this year’s small-scaled, quiet holiday was unusual. We did have a few visits from friends. Tory (of Room for Joy fame) and our friends from Central Christian Church stopped by with some presents and holiday treats to help us celebrate in style and Wendy (our favorite Child-Life Specialist from Phoenix Children’s) and her daughter Sydney joined us for Christmas lunch so we did have a bit of a social life which is a good thing because the rest of our weekend revolved mostly around doing absolutely nothing! In the end it was a good thing that we hadn’t planned on doing anything special because as is typical during any holiday with children Max has been down with a nasty cold since Friday. It seems that either Ellie or Max or both manage to get sick during any given school break. So far we have contained the outbreak to one patient – fingers crossed it remains that way!

Have a great week all!

Have Yourself a Merry Little Christmas

Christmas morning has always been a day of reflection for me, I find myself remembering Christmases past. The last one I spent with my Grandmother, my first one with Michele, my children's first Christmas...the list goes on. Some of the memories are bittersweet although most are just happy. In many ways the song "Have Yourself a Merry Little Christmas" has been my favorite carol since my Uncle with whom I was very close used to sing it to me while dancing me around the room, me with my feet on his shoes. As an adult I listen to the song with new ears, I think about our past and try to look forward to our future when our "troubles will be far away" -- at least we can hope!

Wishing you all a merry little Christmas!

I will fight no more forever….

If only this statement were true. Since returning from Baltimore I have spent the majority of my time fighting with our insurance companies about the new medications and dosages that the doctors at Hopkins prescribed for Max. Today was a prime example, I was at it by 6am our time so that I could talk with the East Coast before their day really started. I went on to spend the rest of the day with my cell phone surgically attached to my ear. In fact my phone got such a workout today that it stopped working. I wonder if United Healthcare has a benefit for cell phones broken at their expense…..

Now I have to admit that the good news is that Max has two medical insurances, our private plan and the state plan for chronically ill children that can both cover his medications. The bad news is that Max has two medical insurances that can both deny his medications. I’m sure some of you just giggled at this but there’s more truth in my description of Max’s medical coverage than you might imagine. Having two separate medical plans just gives me more people to fight with. So instead of convincing one set of Medical Directors, RN Caseworkers and Pharmacists that the doctors at Johns Hopkins (side note: this is the institution voted the #1 hospital in the US for the last decade at least) really know what they’re doing when they write prescriptions for my son I am fortunate enough to have the great pleasure of convincing two sets of these medical morons, woops I mean professionals.

I also must admit that I am not alone in my battles. My army is big, strong and afraid of me! Just kidding, I learned very early on in this process that the most important thing I could do for Max was to be really, really nice to all the nurses in his doctor’s offices. They have all known Max since birth, many cared for him when he was a tiny infant attached to a bazillion machines and they love him – heck I’m even going to venture that they like me! Because of this relationship all of these wonderful ladies take up the fight with me and while the battle is long and grueling we continued to advance in our war against the medical bureaucracy. The one thing most medical insurance professionals need to keep in mind when dealing with us is that they should never, ever give us a phone number, name, or e-mail that they don’t want us to have – we will keep it forever and haunt them until death or retirement whichever comes first. In recognition of all these wonderful doctors and nurses do for Max all year long we went around today to their offices to drop off Christmas gifts, well-deserved tokens of our gratitude for all they do for Mr. Max.

So in keeping with the spirit that this week brings to all of us as we prepare for Christmas I am making a pledge to not argue with anyone else about Max’s medications. Of course my phone is broken now so I should have no problem sticking to my word…..Have a great Tuesday!

How lucky are we?

Today I found myself thinking about how lucky we are -- now I know there are people out there who look at us with pity because our son was born with severe medical issues. Heck, it would be dishonest of me to not admit that there are times when I feel sorry for us. As is typical of a mother of a chronic kiddo I mourn what should have been, some of my dreams for my son will never come to pass yet other dreams I never knew I'd have have come true. Max has defied all the odds we have ever been given by doctors and he continues to do so every single day. So when I or anyone else looks at our situation with sadness I think we're not seeing the "whole picture." These last seven plus years have been grueling, emotionally, physically, financially, logistically, etc., etc. but they have also been rewarding. Rewarding in many senses. I really think that parenting Max has taught us many things. I have often likened it to "parenting on steroids", everything is more intense but it is also clearer. When you parent a typical child it almost becomes mechanical, you don't have to agonize over very much, it comes naturally to a parent who loves their children and wants to nurture them. With a child like Max nothing is mechanical or rote, every day brings on some new challenge. You can't always trust your instincts -- is he really sick or is it just something as boring as a cold? Did you give him all his meds (luckily Max now keeps track of his own meds and will tell you if you screw up!)? Are you doing everything you should to maximize his medical outcome? The list of questions rattling around in your head grows longer and longer....but I have grown used to all of this and I have come to appreciate it for what it is. Its Max and his miracle, nowhere was it written that we would be so lucky and so blessed to have this son who teaches so many so much. And although I would take away Max's suffering in a heartbeat if I could I know we are all better people because of Max and the journey he has taken us on.

I also believe we are very, very lucky to have met all the people we have on this journey. People we would have never known if not for Max and his story. There have been so many who have become part of our lives, supported us, listened to us and above all else have given so much to us. These people are not friends, they are family, they are an integral part of the life we have weaved with Max. We don't always remember to thank them and recognize what they do for us but we hope they know we would not have made it this far without them.

Before I close tonight I want to give a quick update on Ayah (the little girl we met in Baltimore who had a liver transplant), I have spoken to her grandmother by phone and e-mail over the last few days and we are so excited to hear that she is doing really, really well. She is starting to wake up more and more and may even have her breathing tube out by now. These kids never cease to amaze me, they overcome so much with their wills of steel!

Max and the Figthing Falcons

The day before we left for Baltimore Max's soccer team "The Fighting Falcons" held their end of the season party. It was a great send-off for Max, he had a wonderful time with his friends and there were many BIG surprises. The team presented Max with his very own Wii!! As some of the photos show Max sported an ear-to-ear smile. The team and their families also generously helped us with our travel expenses to Johns Hopkins. We are very thankful for their support and are lucky to call them our friends!

Coach Tav, I hope you don't mind that we "borrowed" some of your photos! Enjoy!

Ho, Ho, Home

After an exciting week of “globetrotting” we had a rather dull weekend. In fact, if you don’t count the 15 loads of laundry, grocery shopping, housework, homework assistance, and various other tasks, I’m pretty sure that I have accomplished absolutely nothing since returning from Baltimore. This week will be our “catch-up” week. We’ll get the kids caught up in school only to have them finish for Winter Break on Friday. I’m going to attempt to get caught up at work, especially because I’m in the midst of a huge project which has to be delivered this week. I feel exhausted already…..but the good news is if we can just get through this week we’ll all have a break for the Holidays.

It seems incredible to me that Christmas is just 11 days away. If you stopped by our house for any reason you would have no idea Santa’s arrival is upon us, there are no decorations, no Christmas tree, and certainly no presents have been purchased or plans made. I usually pride myself on my organizational skills but I must admit I’m failing miserably at the moment! I think our trip to Johns Hopkins every year just makes the Holidays seem secondary or at least secondary for us adults but definitely not secondary for the kids! This year Christmas will be exceptionally quiet at our house, last year we had both sets of grandparents here, this year no one will be making the trip out West so it’s just the four of us. Michele and I would be just as happy to skip all the preparations, festivities, etc. but we know we can’t because of the kids. So this week will also be our “catch-up” week for preparing for the Holidays. Michele will half-heartedly put up the Christmas lights without his Dad, we’ll take the kids to pick a tree for the first time without their grandfather’s assistance (no one picks a Christmas tree like my father-in-law), I’ll actually have to help lug the tree in the house and set it up because no one else will be here for me to delegate to. And God help us, I’ll have to help Michele string the lights on the tree….I wonder if divorce court is open on Christmas Eve because something tells me we’ll be needing it!

Have a great week and remember if you hear any loud cursing in Italian it's just Michele and me stringing lights......

At the Finish Line

Max’s tests, doctor appointments, pokes and prods have officially been completed. He is a very happy boy! When we finished today around lunch time we asked him how he wanted to celebrate, he could have any treat he wanted and what did he pick? A walk at the Inner Harbor (btw, it poured today and it was a cold, damp rain) and to eat fish. Off we went, Max was thrilled to case seagulls in the rain and eat calamari. After the week he had he truly deserved it. Michele and I deserved the nap we took when we got back to the house….

We spoke to Dr. Vricella, Max’s cardiac surgeon, today. He was pleased with what he saw on the MRI. He thought Max’s aortic valve looks better than he expected it to, in fact he thought it may even look better than it did last year. His only suggestion was to double his Cozaar dose which Dr. Dietz had already done on Tuesday so he was happy with that. He told us to have a repeat echo in 4 – 6 months and send it to him for review. So there you have it, “Arrivederci Johns Hopkins!”

A quick update to last night’s post, they found a liver for the little girl and she’s in the OR right now. The liver looked good and came from a perfect match so we are all praying for success. The little boy with the brain tumor has been moved to “the floor”, in the medical world we consider that a step towards the front door! Thoughts and prayers do really work!

Thanks for checking in…..we are now officially on the Baltimore minus 12 months track!

Musings of an exhausted mother....

I feel that I need to put a disclaimer on tonight’s entry. It wanes a bit on the melancholy but it is something I feel I need to write about if for no other reason than to save my own sanity. Although today was easy for us -- Max had just a few labs and not much else that was particularly exciting -- it was also a very emotional day. One of the families we have met this year has a five year old daughter who had a liver transplant yesterday; the liver failed overnight and if another one doesn’t become available in the next 72 hours there are few if any options left for them. It’s heartbreaking to watch parents face the decisions they must make in such situations. During this stay I have noticed that the children here are much more critically ill than they have been in past stays. I cannot remember another time when a child staying at Children’s House passed away while we were here, this year it is very possible that two may pass before we leave. Now I must admit this house isn’t exactly a party place, the families here are facing serious illnesses, but this year it is particularly sad. We families form a certain bond during our time here, we all know each others stories, what our kids are going through, and we support one another as best we can. We may never see each other again but for the fleeting time we share this space we form a sort of club, we don’t have a secret handshake or codeword that identifies us as members of this club, we don’t need one because we share something more important, we share the same battle. We are all here to give our children their best shot at a healthy life or at least the best life they can have. Many of these families have sacrificed much to get their children here, this is something we know first hand, but none of us would ever consider any other alternative. As we sat together in the kitchen tonight our theme was “no matter what happens we know we have fought the fight, we have given our kids the best there is”. I’m not sure how much comfort this will be to the parents who may loose their children this week or any other week for that matter but sometimes that’s all we have, the comfort of knowing we’re doing the best we can for our kids. On that level we are not much different from any other parent, all parents do the best they can for their kids. We just happen to be doing it in a life or death situation.

Tonight please keep the little girl who is on life support waiting for a liver and the little boy whose brain tumor is back in your thoughts and prayers. You have no idea how much that means to these families. Our children touch many lives, in some cases this is the legacy their short lives leave behind. Someone once said it is not the quantity of life but rather the quality that matters most. I believe that this is especially true of chronically ill children who live more than we will ever know.

I’ll close with a promise, I promise to never be quite so philosophical again. Starting tomorrow I’ll turn back into my usual smart a## self!

A More Productive Day

Today was productive but long -- very, very long. We started out at about 10am when we checked into the Pediatric Cardiology department for Max’s cardiac echo and appointment with the cardiac geneticist. Max is always so happy to see all his friends here. He told everyone, from the receptionist to the doctors, about what he’s been up to this last year. Of course this year’s big news was that he has been playing soccer. Dr. Dietz was happy to hear this news as exercise is important to Max’s muscle development. Max wasn’t as interested in the physiological benefits of exercise as he was with telling everyone about the many awards he has received this season. To hear Max talk you would have thought he took his team to the championship single handedly. If there is one thing that this kid doesn’t lack its ego!

On the cardiac front the news was generally positive. Max’s heart looks good, or to be more precise it looks the same as always so as they say in the business, “no news is good news.” In fact, the doctor told us he wasn’t worried about the heart valves at all -- we should be able to get a lot more mileage out of them. Thank God! The “interesting” news was that they have successfully engineered a mouse with the same gene mutation that Max has – we did get naming rights here and we’re happy to announce the arrival of “Maxi Mouse”.

Our second appointment was with Max’s GI doctor. He was pleased with Max’s growth and overall health. He did increase all of Max’s vitamin supplements which we expected due to how low his blood levels have been. The other news which we found just a little odd and a lot depressing was that as Max goes through the normal growth spurt of adolescence we should be prepared to put his feeding tube back in so that he can do overnight feeds. For us this seems like a huge step backwards, surgically placing a tube, hooking him up to a feeding pump every night, etc., etc. Been there done that and can’t imagine doing it again. Michele and I, although shell-shocked, have decided that Max is not the “typical” case so we are sure that we can avoid this miserable fate by diligently working on Max’s diet to insure he gets the increased calories he’ll need (up to 15,000 a day!).

All of this ended at about 7pm when I was finally able to feed the kids "lunch" as Max called it. He's still expecting to have dinner! Tomorrow should be quieter, all we have to get done is blood work and other labs. I also have to set up an abdominal ultrasound and reschedule with the surgeon so we’re almost at the finish line of this marathon. Yippeeeeeeee!

I should really learn to keep my mouth shut....

.....and for those of you who know me this would be no easy feat. It seems that my last blog update has been proven invalid -- this trip can and did get worse today.

We actually arrived for Max's cardiac MRI at 5:30am as instructed only to find out that registration doesn't start until 6am. Trying explaining THAT to two very cranky children (and one rather cranky husband)! When the radiology tech brought us back to the exam room I knew we were in trouble when she asked me if we had had a call from their department on Friday telling me that our appointment needed to be moved. Now I know I look stupid but I couldn't help to think, "Is this girl insane?" Why would I drag myself, two kids and husband out of bed at 4:30am, walk in 20 degree weather, and wait more than half an hour to check in if I had had a call cancelling Max's MRI? At this point I was cranky but I held it together long enough to ask why they needed to cancel. Evidently the pediatric cardiologist is only in lab on Wednesdays, which we knew from past experience but because Max had an appointment with his cardiac surgeon at noon and we know he needed to see the MRI we assumed special arrangements had been made. WRONG! I asked what the plan was in light of all this, the tech told me they would go through the regular protocol (after I explained what Max's protocol was) and then if need be they could always get more film in a second session. Did anyone mention to Max that there might be a repeat MRI? I know I'm not crazy enough to go there....the child is still in the dark on this possibility. So after nearly two hours we were done and sent on our way. We ran back to the room to sleep for a bit, take showers and eat something before our appointment with Max's cardiac surgeon.

We arrive for our appointment with Dr. Vricella on time anxious to talk about the MRI results, Max's valves, the aorta repair, etc., etc., etc. After sitting in the waiting area for about 15 minutes with Mr. Monkey (aka Max) who was kind enough to entertain everyone in the room -- patients, secretaries, doctors, and interns alike --- we are told that Dr. Vricella had just been called into an emergency surgery so our appointment would need to be re-scheduled. Argh! Obviously this was an emergency so we understood completely although I must admit thinking, "And I subjected my son to that half-assed MRI this morning?" I guess we really could have postponed that to Wednesday as well. Ah, the best laid plans of mice and men.....So all in all Monday was a bust! It's 8 o'clock and Max has been asleep for two hours if that's any indication of how smoothly our day ran.

While sitting here in the kitchen at Children's House writing today's update a women came in to get something. I remembered seeing her last night, she had been talking to herself in a nonsensical way and I thought she was just a little whacky. Tonight she started a conversation with me and she told me her son had been rushed to the PICU last week and his brain tumor was back for the fourth time. Now this little boy is just eight years old, not much older than Max, and the doctor's have told her "this is probably it." So this woman who I had written off as "whacky" just 24 hours ago taught me an extremely important lesson tonight -- no matter how bad a day I had today it was still a good day. No matter how much I wanted to throw Max out a window because he was acting like a nut at least I have a son to loose my patience with. All in all, I guess I learned once again to be happy with what I have. Perfect its not but its better than most!

We're here safe and sound....

sort of. The flight was fine if you overlook the crabby man (who just happened to be a USAir pilot in uniform -- way to score business buddy) who actually screamed at my kids solely because they had the audacity to be speaking to one another. Evidently it is illegal to have a discussion on a plane when the pilot is trying to sleep! Who knew? I'm just really glad Max and Ellie weren't kicking his chair or pulling on the back of his seat, he might just have killed them.

On top of this Max's nose bleed the entire trip, we were all convinced our first stop in Baltimore would be the ER at Johns Hopkins. Knock wood he seems OK now. Thank God I had a really nice couple sitting next to me or I would have lost what little remains of my sanity. This trip can only improve from here.....

Tomorrow's the big day, so stay tuned same time, same channel for more news! Fingers crossed for good news only.

Have a great week all!

Midnight Post -- Baltimore Minus 10 Hours

This will be the shortest post known to man, mostly because it is midnight and we are NOT I repeat NOT even near ready. I hope I don't forget anything important like plane tickets, coats, Max's meds.....

Before all this chaos began this evening we had a wonderful day with Max's soccer team. What a great bunch of kids and parents! Their kindness and generosity are outstanding and we are very, very lucky to have come to know them. Max will miss his soccer buddies this week! We cannot thank the entire Fighting Falcon team enough for all they do for Max and his rag-tag family!

Remember to check-in this week, I'll keep the blog updated with appointment news, test results, etc. Have a great week and keep Max in your prayers!

Mid-Week Update -- Baltimore Minus Three

It's getting closer and closer and I'm farther and farther away from ready. At this rate it's likely that "packing" will mean throwing things in hefty bags and making a mad dash to the airport! I find myself running around trying to get everything done or I should say get done what I can remember needs to be done. An example of this occurred this evening when I spent over an hour running around the house trying to find my glasses. I screamed at anyone stupid enough to cross my path and still no glasses! Ellie and I hopped into the car and ran back to the store we just left and still no glasses! I get back home and tear the house apart (I found this exercise both a stress-reliever as well as counter productive considering this was the same house I had just been cleaning because I am psychotic enough to not like leaving the house dirty for a week while we're gone) and still no glasses! Michele then insisted that I sit down and eat something while he cleared the dirty dishes into the dishwasher and what does he discover? GLASSES!! I immediately blamed him, cleaned them up and put them on. That will teach him to never play games with my glasses again!

On another more positive note, Max's Market received a $500 grant today from Carl's Jr. restaurants which will really help us bring some great gifts to the kids at Phoenix Children's this Christmas!

Please keep us in your thoughts this week as we get ready for the "big trip" to Baltimore! By the way, if anyone happens to find my sanity would you mind e-mailing it back to me?

To Do List -- Baltimore Minus Six

I'm feeling like we're down to the wire in our preparations for Baltimore so I've created a to do list for myself:

1. Laundry, laundry and more laundry.
2. Keep my sanity.
3. Ironing, ironing, and more ironing.
4. Keep breathing.
5. Order all of Max's meds so we don't run out while we're gone.
6. Stay Calm.
7. E-mail all of Ellie's teachers so they remember to send her school work home so we can have her do it all while we're in Baltimore.
8. Stay focused.
9. Check out boarding options for the dog.
10. Remain relaxed.
11. Call to stop the mail and newspaper.
12. Breath in and out.
13. Have Michele bring the suitcases in from the garage. Pack suitcases. Weigh suitcases. Remove objects from suitcases. Re-weigh suitcases. Repeat process until nothing remains in suitcases so as to meet all airline weight restrictions.

Oh hell, it's useless....I think I'll go have a drink.......

Have a great week everyone!

Holiday Memories....Marking a Journey to Normalcy

Each year at the Holidays I think about how far we've come on our journey. From that first Christmas when we broke Max out of the hospital on Christmas Eve probably against doctor's orders but after nearly eight months in the hospital we knew we could care for our son as well as anyone else and if we didn't make a break for it we would never get out of what had become our prison. I'm sure many of the doctors doubted our sanity and thought we'd be back sooner rather than later. But it was time to go, time to get some semblance of normalcy for our children. When better to start than Christmas? I'll never forget us rushing to get Max hooked up to all his machines, doing his IV for the first time by ourselves (thank God for the very kind nurse that came out at 8 pm to walk us through the process) all the time trying to get the tree up before midnight because Ellie was terrified that we'd never make it in time for Santa's arrival! We were successful in not killing Max and beating Santa.....mission accomplished! Some of my favorite photos are of that Christmas morning, Max hooked up to multiple machines, Ellie running from gift to gift and Michele and I feeling "normal" for the first time in nearly a year.

Since then we truly have made incredible strides, mostly due to Max's defiance of the odds the medical world had given him. We now have very "normal" holidays. Max loves to dig into the Thanksgiving turkey, this the child who would never eat. He loves to play with his Christmas gifts, whether it be a bike, a scooter or a soccer net. This the child who would never run. Yes we have come a very long way!

I am thankful for….

I think it’s pretty typical to spend some time this week reflecting on what we’re thankful for. I know I never let the kids dig into the turkey without them telling us at least three things they’re thankful for. This year Max was asked to do a similar exercise at school, each student wrote a “gratitude journal”. On Tuesday Max’s class held their Thanksgiving musical and parents had a chance to peek at their child’s journal. Before I opened Max’s journal I joked with Michele that Max had probably written that he was thankful for Happy Meals and Sponge Bob. What I wasn’t prepared for was his first journal entry: “I am thankful and have gratitude for all the doctors and nurses who worked hard to save me.” Wow……

How do you beat that? Tomorrow as we sit around the table poised to consume way too much food followed by a nap on the sofa while we watch way too much football I know my mind will wonder to my son’s wisdom. Perhaps we have all lost our perspective on this holiday; perhaps we needed a child to remind us what the fourth Thursday in November is really about. It’s about giving thanks for the big, the small and most importantly the miraculous.

Wishing everyone a happy, healthy, reflective Thanksgiving.

Sleep....

Over the last few weeks I have not been sleeping well. Considering the life we lead I have always fallen into bed at night and been sound asleep before I hit the pillow. My ability to sleep soundly has always been one of the things Michele hates most about me (this list is quite lengthy and I prefer not to harp on it). It means that he was always the one to wake up when the kids needed something or Max got sick in the middle of the night. I was blissfully sleeping and oblivious to the world around me. Not so much anymore...most nights find me roaming the house, my thoughts my only companion. I have made a habit of starting a mental "to-do list" as I climb into bed at night and that's the end of that. No sleep for me.

I think that what bothers me the most about this situation is not the lack of sleep. Sleep deprivation is my friend. First there was graduate school where I learned to live on 2-3 hours a night, buckets of coffee and Diet Pepsi, and a not so healthy amount of nicotine. Then when Ellie was born and put on an apnea monitor that sounded a horrifying alarm every 5 -10 minutes I fell right back into my old habits, this time the caffeine remained, nicotine was gone. Of course none of this properly prepared me for Max and those first two to three years spent mostly in a hospital room (where I actually missed the apnea monitor -- at least that was just one machine with one alarm). No, what bothers me the most is that I feel like I'm back-pedaling. I had gotten past the point where all the daytime stress of balancing life's "normal" activities and our "not-so-normal" activities of starting IVs, setting up feeding pumps and dosing meds followed me to bed. I had learned how to turn off my brain and just go to sleep. So why am I not sleeping now? Max no longer has any of that equipment, he's generally very healthy (praying I didn't just jinx myself) and doing better than anyone could have hoped for. So why am I not sleeping now? I've had a lot of time to think about this at night mostly because I've already seen all the infomercials at least once and I certainly can't afford to buy anything QVC has to offer. The best conclusion I have been able to come to is that I'm not sleeping because although my mental “to-do list” may be shorter it’s still as intense as ever. I’ve learned how to efficiently check things off my list – no one handles disputes with insurance companies, doctors’ offices or schools with as much ease and success as I do. I have been able to live up to my mantra, “You can do what I’m asking you to do now or we can fight about it for six months and then you can do what I’m asking you to do. You pick, which is easier for you?” Yes, I’ve gotten good at all of this but I think what’s eating at me the most and keeping me awake at night is that I’m still dealing with all of this. Seven plus years later and everyday is just more of the same. Somebody get me off this merry-go-round and put me to bed!

Wishing you all a good night’s sleep…..

Sometimes "gifts" come in unusual packages!

Just when you think you know your kids, I mean really, really know your kids something happens to show you just how little you really understand about them. For a long time I thought I had my kids figured out, Ellie was my sensitive one who wouldn't know a clean closet if it fell on her, Max was my exuberant one with a will of steel. But that's it, they're just my kids, normal pain in the @#$ kids and I love them to bits (don't tell them, I'm keeping this a secret for the next time they tell me I'm the meanest mother in the universe and they don't like me...). But then every once in a while someone helps you see something in your child that you never noticed even though you live with them. For us this someone was the doctor who did Max's developmental testing two weeks ago (you might remember this testing from an earlier post). We had our appointment with this doctor yesterday to review Max's results and evidently we truly are living with a genius, well maybe not a genius but rather a "gifted" seven year old. Who would have thought the kid that one educator after another threw to the curb because they were intimidated by Max's history, somehow having a medical history makes you a moron in the eyes of some, is really above and beyond the very peers they all compared him to. Max will never run like the wind, hit a ball out of the park or be an Olympic star -- but none of this means that Max doesn't have a gift. His gift is one that comes from perseverance and determination to have his own best outcome. You go Max!

I must add that in light of the discovery that her brother is a brainiac (her words not mine) Ellie asked if she could be tested too. I said "sure right after you clean out your closet"....and there ended that discussion. You go Ellie!

We're off to see the wizard(s)....

Today I got what should be our finalized schedule for our first two days in Baltimore. My first comment on this schedule is, "God bless Gretchen our genetics counselor!" She really bent over backwards to make sure the bulk of Max's tests, appointments, etc. will run smoothly so that all of the docs will have the info they want/need beforehand so we can all review results together. My second comment is, “Tell me you’re kidding, I don’t remember signing up for a marathon!” I think you’ll better understand this when you get a peek at our schedule:

Monday, December 8th –

6:30 am - Our first appointment is for Max’s cardiac MRI which is by far the worst of the tests he’ll need to have (or so we hope). It’s a difficult test for Max because he has to lie perfectly still for more than two hours in that horrible machine while Michele “talks him through it”. For anyone who has had a MRI and knows Max I think you can understand why we all dread this test the most. As an added bonus we get to do this at 6:30 am, need I say more??

Noon – We’ll meet with Max’s cardiac surgeon, Dr. Luca Vricella, to go over the MRI and get his input on Max’s heart valves, abdominal aorta and any leaks which might have gotten worse. We absolutely adore Dr. Vricella and Max loves that he can talk to his doctor in Italian! Fingers crossed that he’ll be happy with what he sees on the MRI.

Tuesday, December 9th –

9:30 am (we get to sleep in) – Max has a cardiac echo to check for many of the same things the MRI did but will give the doctors another view. This test is nothing more than an ultrasound which Max is so used to he often falls asleep during them…actually, so do Mom and Dad because they turn off the lights to do it!

Noon – We’ll be seeing the “star of the show”, Dr. Hal Dietz. Dr Dietz is known around the world for his work with children who have connective tissue disorders. This is the man who finally figured Max out (no easy job) after more than six years of our going from doctor to doctor. All of these doctors had the same answer, “It’s just Max.” Dr. Dietz is different. When we met Dr. Dietz shortly after Max’s surgery two summers ago he spent more than four hours with us talking, going over history and examining Max. He promised us that he would get us an answer and he has! I used to say that I didn’t need a name for what Max has, now I tell Dr. Dietz when he figures it out I get copyrights!

Whatever time we finish with Dr. Dietz (how’s that for precise?) – We run no less than six city blocks to get to Max’s GI doctor, Dr. Tony Guerrerio, so he can fit us into his schedule. Last year he fit us in at the last moment when Dr. Dietz asked him to so we know this drill well. He always gets us in and spends his time reviewing everything from Max’s nutrition and vitamin levels to his growth and more.

Now I must remind everyone that this schedule only covers Monday and Tuesday because the rest of the week we’re at the mercy of all these doctors and whatever other tests, lab work or appointments they feel Max needs. But we’re happy to do this because we know how lucky we are to have Max being seen by all these doctors. I can't think of a better place for Max to receive treatment than Johns Hopkins - the doctors and hospital are world-class yet they still find the time and make the effort to make each patient and their family feel like they are their only patient. Just imagine that I can call any of them and say “This is Max’s mom” and they know immediately who I am! It really amazes me that they can remember anything in light of the thousands of people they see each year from all over the world. We thank God every time we remember when our surgeon here in Phoenix asked us if we could take Max to Hopkins, God bless you too Dr. Teodori – you saved Max’s life again!

In closing, keep Max in your thoughts, we have another long day at Phoenix Children’s tomorrow, thankfully we’ll be seeing a doctor we all like and Max won’t have to do any painful tests. Both of these things are always a plus! Have a great Wednesday…..

I think I may have missed my calling…..

I should have gone into medicine. This revelation came to me this weekend as I tended, cared for, and nursed both human and beast - real and stuffed.

My first consult was requested Saturday morning when I was “paged” at Max’s soccer game. Evidentially the hamster (perhaps you all remember Peppermint?) was once again ill, having sprouted some new growth. Ellie hysterically asked me to look at it and tell her what it was, again this conversation was carried out via cell phone so I suggested that her texting me a photo was unnecessary – I’d be happy to check the patient’s MRI as soon as I could get home.

My first surgical procedure was prompted by broken glass. Now we’re not really sure how broken glass ended up on the playroom floor because as best as I can tell no one was involved or even present for this incident. In fact, I asked everyone including the dog and they all just stared back at me as if I was asking which one of them had launched a nuclear attack. It was decided that the glass marched itself across the house from the kitchen to the playroom and then threw itself to its death against the floor, breaking into millions of little glass splinters. Now my children who finally admitted to witnessing the suicide of the glass decided that they wanted to save me from the clean-up (of the object no one knew anything about) so it was decided that the cleaning would be performed by short people who didn’t even know we own a vacuum….oh right, the vacuum was NOT used but rather the broken dust-buster was employed which left more glass splinters behind then were actually picked up. Fast forward eight hours, while checking out at then supermarket I get an emergency phone call that the flow of blood had commenced. I run home to find Ellie clutching her very red foot (no worries it’s permanent marker, she was bored waiting for me to get home to tend her wounds so she decided to write on her foot), I grab my glasses and tweezers and enter OR one for my first procedure of the day. Glass successfully removed. Patient lives. Fast forward still another two hours and patient number two is carried into my OR, Max now has glass in his foot. Once again I take out my surgical supplies and remove all foreign bodies and send them off to pathology so that Michele can confirm the object removed from my patient’s foot was indeed glass. Patient two lives but demands a band-aid.

On Sunday my medical services were requested for Panda (of Kung-fu Panda fame) who had been carried off by a wild beast (domesticated dog), attacked and left out in the cold wilderness of the backyard overnight. Search and rescue transported Panda into the clinic. The patient was somewhat muddied but otherwise healthy. Warm bath administered, patient revived and sent off to the playroom. Dare I expect this patient back with glass in his foot?

I really should have gone into medicine. I definitely missed my calling and my bank account has definitely missed its deposits.

A Homework Chuckle....

I really thought this story merited a "double" entry for today. This evening as Max and I were winding down with his homework we took out his library books to read before bed. Tonight's selection was titled "American Mastodon", towards the end of the book Max read, "American mastodons died about 10,000 years ago." At this point Max exclaimed, "Wow Mom that's even older than you.....isn't it?" Can someone please explain to this child that if I look pre-historic it might just have something to do with him, 30+ surgeries, countless days in the hospital, more sleepless nights and bad coffee than I care to remember and my all time favorite - the daily fights with insurance companies, DME providers and doctor's offices?

Christmas Music?

Driving to work and school this morning Ellie turned on the radio and they were actually playing Christmas music! Please tell me they’re kidding me! I’m still picking up candy wrappers all over the house from the kid’s Halloween stash (believe me I have come to find that children can eat candy in the strangest places and hide the wrappers in equally strange places). I haven’t even had the energy to think about Thanksgiving yet and the rest of the world is getting ready for Christmas? The Holiday season hasn’t even started and I’m already behind schedule. This can only get worse.

Soon enough I will be confronted with Santa letters, school Holiday pageants, and Secret Santa exchanges. Don’t get me wrong I love the Holidays as much as the next guy but I’ve got a trip to Baltimore for Max’s clinic appointments plus all of his winter appointments here in Phoenix standing in my way. And while I’d much rather be shopping, baking cookies with the kids, and wrapping presents I can’t see me getting to these festivities by December 25th so I have a few options: I can try to get an excuse note for being absent from all Holiday activities or if that doesn’t work out do you think my kids will notice if I push Christmas out a bit? I’ve checked my calendar and I think March looks like a pretty good alternative, can anyone tell me if that will conflict with Easter?

What a weekend!

We had an unusual weekend for us, unusual in that we probably attended more social events in the last two days than we have in the last two months combined! On Friday evening Max was invited to a local high school football game by a good friend of Coach Tav's whose son plays on the team. It was a great night (cold by AZ standards so we were doing our own huddling on the bleachers), however, I couldn't help but to think that someone should have warned Pat of two things:

1. Inviting Max to a tailgate party is dangerous. Max consumed three BBQ sandwiches, two hot dogs, and two bags of chips. This does not include what he ate off of everyone else’s' plates. I served as his "stand-in" in the food line so that he wouldn't find it necessary to interrupt his feeding frenzy. For those of you reading this I feel the need to let you know that this child is fed at home. I know it might not look this way when you see him eating in public but we really do feed him at home.
2. Don't sit next to Max if you want to concentrate on your son's game. In typical Max form he never stopped asking questions about the game of football. I would not have blamed anyone for launching Max out of the stands just to shut him up!

In the end it seems Max really did learn something about the game because he came running out of his bedroom this morning to ask me where Wisconsin was, after all that’s where the Packers are from! He actually watched the entire game forgoing his usually sacred Sunday morning ritual of back-to-back Sponge Bob episodes.

Our second social event was joining Hopekids at their Saturday morning movie which happened to be High School Musical 3. I planned on it being great fun for Ellie and her friend, a protest for Max who didn’t want to see a girl movie, and a nap for Michele and me. I was right on two counts, the girls loved it and we got a nap. Where I went wrong was Max, he danced, he sang, he fell in love with the leading lady – who is this kid and where did he come from?

From the movies we made a mad dash to soccer which was by far the highlight of the weekend. Max made his usual appearance at the beginning of both halves, dribbling the ball down the field to score! Another great win for the Fighting Falcons! But the real event came after the game when Max was presented with two wonderful awards by Coach Ron and the Terminators, the very first team Max got to play against. It seems Max made a bigger impact on the boys who helped him “get in the game” than we realized. When the awards were presented Max of course was sporting his trademark smile and his parents were bawling – it was a very touching moment and I’m so proud of Max for his spirit and of these boys for their hearts.

Before I sign off I would like to thank everyone who has given so much of themselves so that Max (and his family!) can have all of these wonderful opportunities. I think I have figured out where Max’s super-ego comes from, it comes from all of you who treat him like he’s Superman. Thank you, thank you, thank you!

I’m dancing as fast as I can….

As a young adult when I was trying to balance school and two jobs (teaching at a university and starting up a catering business to pay the bills my meager university salary did not cover), all while maintaining the ever important social life I remember always feeling harried mostly because I expected nothing less than perfection from myself. Anything less than an “A” was unacceptable, having perfect survey results from my students, and being the life of the party would take its toll on even the most organized person. Back then my mother and I had a favorite saying, “I’m dancing as fast as I can”, we used it over and over again when we felt overwhelmed with all there was to do.

Perhaps this phrase has never had more meaning for me than it does now. No matter how much I am able to accomplish in a day I still feel as if it’s not enough. By the end of the day I never seem to finish my “to do” list but what I’ve done I’ve done and I get to cross it off my list. Sometimes all the logistical tasks wear me out and I have little energy and even less patience. Of course this is not the recipe for the perfect wife or mother. Now I have no illusions about receiving the “Mother of the Year” award but I hope that someday my children will look back at their childhood and realize their mother did the best she could with the resources available to her. (Much as I have come to realize about my own mother.) I danced as fast as I could. I hope they will remember this and not all the times I screamed at them like a lunatic for every small infraction of my rules (and believe me both my kids will tell you I have many rules – some good, some bad and others just ridiculous). My husband insists I missed my calling as either a military officer or dictator. Parenting is never easy, we all know that, but parenting a “typical” child who is now a teenager with all that that implies and one who is anything but “typical” I always feel like I’m coming up short. I can never make everyone happy or give them enough. I worry that Ellie is being short-changed because Max is so time consuming. I worry that she will resent her brother and all the attention his medical issues necessitate. But in the end I know she accepts what our life has become because she is mature and wise beyond her years. I worry that Max will feel we’re coddling him too much. I worry about the frustration he will feel as he grows up and we can no longer protect him as we have if we ever expect him to be independent. But I also know that he is strong and has more courage then all of us put together and these are the very qualities that he needs to do well. At the end of the day we have all been dancing as fast as we can for the last seven years. I am very proud of both my kids (and my husband!) for the way they have accepted our “norm” even if we know it’s not so normal. Maybe it’s my kids who have helped me understand “perfect” doesn’t exist.

Our Soccer Star

We wanted to give everyone a quick pictorial update, check out these great soccer photos from Saturday!

Go Max!

Max and Coach Tav

Will this day never end?

Today, or at least seven hours of it, was spent at Phoenix Children's -- Michele and I are wiped out, Max however is his usual energetic self. I wish we could figure out where this kid’s batteries are so we could rip them out for a few hours.

Last December when we were at Johns Hopkins Max's geneticist had a head MRI done because Max's connective tissue disorder could possibly have some neurological effects. The doctor suggested we have Max evaluated "just to be sure" we aren't missing something, so today after waiting 11 months we finally got in to neuro here. They spent a total of about six hours doing a one on one evaluation which included testing both right brain and left brain processing. Max actually had a blast, he thought it was fun to answer all these questions and give his opinions and reasoning process on any number of topics from politics to the environment to the hot-topic of the Red-Sox/Yankee feud (the doctor’s office was full of Red-Sox memorabilia which upon arrival almost caused Max to run out and refuse to go back in). As is his usual style he charmed everyone, the intern almost wanted to take him home with her and the doctor actually thanked us for sharing Max with him. The first thing that came to mind when they told us this was, “Who is this person you speak of and what have you done with my son?”

Preliminary results of the evaluation show that Max is way, way above average in his language skill (little news there), has an incredibly mature thought and reasoning process and has surpassed his peers in most academic areas. For the record Max has inherited ALL of these qualities from his mother! BTW, if you’re interested in knowing what this child prodigy is doing as I write this the answer is obvious: he’s glued to the TV watching Sponge Bob…..ah, the inner workings of a great mind!

And now for a few words of wisdom from Max: on the way home from the hospital Max starting asking about how many days he was in the PICU when he was born. I told him we couldn’t measure his PICU stay in days but rather months. We then had our typical conversation where he asks me if he was cute when he was in the PICU, the pre-Max me would have NEVER seen cute in a baby with more tubes coming out of him then limbs, but the post-Max me answered, “Yes, very cute.” After much thought Max then asked how/when was he “BATH-e-matized” if he was still in the hospital for 8 months, because he learned at catechism that it is very important to be “BATH-e-matized”. Now I feel the need to point out that this comment came from the same child who when told he was going to start catechism and preparing for sacraments said, “I’m not dead yet so I don’t need God right now.” Try to explain to Max that once you’re dead it might just be too late to start a relationship with God….

This isn't what I signed up for.....

Not too long ago after a particularly stressful exchange with our insurance company (about who remembers what because this is a daily event for me) I remember telling a friend, also the Mom of a chronic kiddo, that "this isn't the life I had signed up for ". Of course when you're young you can't imagine anything but a bright future, taking on the world and winning. As far as you're concerned the world is your oyster and problems belong to the other guy not you, then you grow-up. That's the hard part you grow up.....somewhere your life takes a turn, the road becomes bumpy and you're heading for a brick wall. At this point you have a couple of options: you can crumble (believe me I tried ask Michele) or you can take it head on, steer yourself away from certain disaster and find a new road. Seven years ago that's what we did, we were heading off a cliff at break neck speed yet we found a new road and headed in another direction for which there was no map or GPS system, we were flying by the seat of our pants. Before May 2nd 2001 if you had told any of us that this new road would become our permanent address we would have assumed you were a nut!

Today when people tell us that they admire us for our strength I must admit we often reply that we'd prefer to be weak. When we are told we are extraordinary we prefer to just be ordinary. When we are told that we are handling Max's illness with grace I am certain these remarks are being made by someone who hasn't seen me turn into a raving b*%#h when I have to in order to protect Max from some idiotic doctor, intern (the absolute lowest life form in pediatric medicine) or worst yet someone who just doesn't understand Max's challenges and says something really stupid and insulting to him.

This life that I didn't sign up for is beyond tough and lacks much excitement of the glamorous type (there is certainly excitement just not the glamorous type) but this new road we are on sometimes takes the scenic route: we meet someone wonderful who lends us a hand or an ear when we need it, we find a doctor who truly cares and listens to us when we talk, or we have a "lull in fighting the battle" and we just get to be normal for a while. These are things we would have missed on the old road but are crystal clear on the new road.....

Enjoy the rest of your weekend and take time to enjoy your view!

Happy Pumpkin Day!

Well the big day is nearly upon us....the day we dress our children up in crazy outfits and send them out around the neighborhood (with us trailing behind hauling ALL the accessories they just had to have to make their costumes complete) and throughout this entire process we allow them to gorge on candy, candy and more candy. Of course this leads to tummy aches, irritability and the inability to sleep. I guess this makes Halloween the childhood equivalent to the adult’s New Year’s Eve, different addictions same hangover!!

Once Halloween comes and goes you know Thanksgiving is right around the corner and then BANG its Christmas. Just when I thought life was stressful enough somebody went and threw in a few major holidays to really drive me over the edge. The next two months are generally our most hectic not only because of the typical events these months bring but because it’s also the time of year we bring Max back to Baltimore for his yearly check-ups with the cardiac surgeon, cardiac geneticist and gastroenterologist. Each year during the second week in December we pack up and bring the Marangella show on the road. Our week at Johns Hopkins is long and each day is packed with appointments, testing and lab work. Our usual remark about a day at JHH is, “You know when you’re going into the hospital you just don’t know when you’re coming out.” Add the cold winter weather (we Phoenicians generally do not own winter coats) and hospital food and you have all the ingredients of a Caribbean resort and spa vacation. Please don’t envy us for our glamorous lifestyle, jet-setting like this isn’t for everyone.

And on that note I wish you all a happy Friday, go out there and get way more treats than tricks!

Crisis Mode...Once Again

Another not so calm night in the Marangella household, Ellie and I arrived home to find her hamster, Peppermint, quite ill. So far tonight I have been asked to dress its wounds and save him. Now I do remember taking CPR when both kids were born but I'm relatively sure we didn't cover rodent techniques...I'll have to go check the book. Our second crisis this evening revolves around Max, after a two week hiatus we have returned to spelling tests -- I'm not certain who is happiest about this event. And so our regular routine resumes!

Enjoy the results of Saturday's big "photo shoot". And before I sign off I'd like to wish my Mom a very happy birthday tomorrow. Have a great day!

Sometimes Normal is Nice

All in all it was a very quiet weekend here, no last minute emergencies requiring ER runs, auto mechanics or other assorted mishaps (all components of our last weekend). Instead we had what I would consider a "normal" weekend. Max had soccer on Saturday. Yes, Max is actually playing soccer and LOVES it! Our friend Wendy, who we have known since Max was born and is now officially part of the family, works as a child life specialist at Phoenix Children's and got Max involved in a wonderful program called Kids Playing for Kids. This organization allows chronically ill children to play a sport with their "typical" peers, an opportunity many of these children would never have. Kids Playing for Kids is run by a wonderful and patient man who just so happens to be Max's soccer coach -- I say patient because he's putting up with "Chatty Cathy" (aka Max).

On Saturday afternoon I was able to get everyone washed, coiffed and dressed and on time for professional family photos, no small feat but the results were great (examples to follow when Michele can download them). Today Ellie really wanted to take the dog to the park, it was great to spend a couple of hours doing nothing but enjoying a wonderful Arizona fall day.

Looking forward to a "normal" week.....(fingers-crossed!)

Just the beginning....7 years later!

Some things are worth the wait! After seven years of what we lovingly call "Max's Journey" we have decided to start sharing with our friends and family the highlights of "A Day in the Life of the Marangellas". Life isn't always easy in our household and things rarely run smoothly but for better or worse we take it as it comes together! Stay tuned for more......