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!