All right, I wasn’t actually crying, but I did feel clenched up.  Obviously, I was not prepared for how emotional I would get while filling out something as basic as camp forms.

Was it because the forms were for sleep-away camp?  Two weeks of sleep-away camp, far in the wilds to the north?  Bugs, animals, dirt, ticks, skunks. Ick!

Maybe it was because my son would be out of my control for two weeks?  The first time since his kidney transplant.  Granted, it’s a program designed to accommodate the needs of kidney patients, but I’m chilled to think he will not be able to text me to confirm he took his twice daily meds, our deal when we are apart.  I wonder if I will be the first to cave?

Or, it could be that the medical history questions brought back the momentousness of his condition.  Most of the time, I’m able to put aside the actuality of a “transplant” and pretend I’m not scared to death that there will be a cataclysmic disaster that will prevent delivery of his monthly meds.  Generally, I’m able to go through the every-day the way our doctor puts it – brush, brush with her hands – it’s done, no problem!

But when I carefully wrote the information in the tiny empty blanks on the form, I was forced to remember the date and the circumstances of the transplant.  Relive the week’s events.  Remember the quality of the sunlight in his recovery room. The big lump in the middle of the hospital cot. The smell of the soap in the restrooms. A meal my husband and I ate in the coffee shop.

I was forced again to realize that my expectations were not accurate and that the surgery would not be an ending but a beginning.

Or, if I’m really honest, all of the above!

Immune suppressed kids are, of course, at higher risk for catching the flu and suffering complications from a serious illness.

I have to admit that I am petrified of the flu this year! I reminded Andy that he is allowed to change his seat at school if he feels someone near him is sick, but I have my doubts that he actually would.

I received a free sample of a product that’s supposed to protect against airborne germs and I’ve been having Andy use the stuff, just in case it works. It’s called Halo, and it’s an oral spray. The kid’s version tastes okay, so we’re trying it. You never know!

Thank God for Clementines – lovely, pre-packaged vitamin C!

At 13 1/2, Andy is approaching puberty. He’s definitely changing, but the physical aspects of puberty are not evident, yet!

The time passed so quickly – just a few moments ago, it seems, he was a pinch-your-cheeks toddler and his kidney transplant was somewhere in the future.

Now, we have celebrated the one year anniversary of his transplant and “teenager-itis” has begun to rear its ugly head.  He drifts around the house in an apparent fog, forgetting to put on his shoes or coat when we’re going out, getting “lost” when he goes up to his room to fetch something, immediately forgetting the plans we’ve discussed – typical pre-adolescent behavior, but frustrating for us parents and scary for someone managing chronic illness.

For example, Saturday morning is my turn to sleep late.  Andy has only a few chores, and one of them is caring for the dog on Saturday mornings.  The other day, Andy got up as usual, let the dog out and made himself a pop tart.  Then, he got distracted by something and proceeded back up to his room to connect to his friends via x-box.

An hour later, when my husband got up, I heard him yell at Andy because he’d left the poor dog outside (it was pretty cold that morning – around 30 degrees!).  And of course, he hadn’t fed the dog either.

Another hour later, I finally worked my way downstairs and removed my husband’s newspaper from on top of Andy’s medicine box and discovered he’d forgoten to take his meds too!  And my husband hadn’t noticed because he was fuming about the dog.  OMG!  What the heck?

So he took his medicine a little late and we came up with yet another procedure for remembering meds.  Everyone was upset and we were reminded again about how easy it is to mess up even the simplest thing.

Oh, and he was grounded from xbox for 24 hours, which I hope made some kind of impression regarding his responsibilites.

I’m not one of those moms who whips up healthy gourmet snacks  – working full time, it’s hard enough just to get dinner on the table!  But I am always trying to find nutritious snacks for Andy, that he’ll eat.

We saw this recipe on a kid’s TV channel and I’ve adapted it.  Andy needs to add milk to his diet.  Before his transplant, he had to take a large dose of iron vitamin every day, and milk interferes with the absorption of iron, so we never got into the habit of him having milk with breakfast.  Plus, he drank so much water, he seldom had any desire to drink anything else.

Since transplant, this has changed and I’m constantly trying to find ways to work more low-fat milk products into his diet.  He likes this granola so much, he is happy to eat yogurt with the granola sprinkled on top.  I like it too, but I add pecans or walnuts to mine (Andy is allergic to tree nuts) and put the whole thing over sliced fruit, which fits into my Weight Watcher’s plan really well.  Enjoy!

Andy’s Healthy Granola

(measurements are approximate and adaptable to your taste – unsalted ingredients are healthier)

2-3 cups oats
2 cups wheat buds cereal
1/2 cup shredded coconut
1/2 cup pumpkin seeds
1/2 cup sunflower seeds
1/2 cup flax seeds
1/2 cup chia seeds
1/2 cup pecans or walnuts
natural honey (I just pour until it looks like enough)
pinch of salt
1/4 cup coconut oil
1/4-1/2 cup extra virgin olive oil
generously sprinkle with cinnamon

Spread evenly on a cookie sheet or two.  Bake in 350 degree oven for 30 minutes or so, carefully stirring a couple of times, until everything is evenly golden.  Let cool and scoop into a container.  You may want to add dried cranberries, raisins, or other dried fruit.

Please let me know how yours turns out!

Today is the one year anniversary of Andy’s kidney transplant.

As is always the case, the year flew by, ordinary life punctuated by extreme ups and downs, joy and worry…

…The surprise of “the call” from the doctor that a kidney transplant match was available.  The anxiety of realizing my baby faced major, life-changing surgery… NOW, not some unspecified and therefore easy-to-avoid-thinking-about time in the future!

…Our relatively unrealistic expectations of the recovery period after kidney transplant.  Maybe I had my head in the sand, but I didn’t realize the serious chemical cocktail Andy would be taking and how much juggling is involved is setting up specialty drug deliveries from a pharmacy.  And it’s always a hassle dealing with the health insurance company (although I appreciate them VERY much!!)

…A wicked stomach virus.  Just before Christmas, Andy ended up  in the hospital with a nasty stomach virus.  My husband was sick on Sunday and by Wednesday,  Andy had it.  The real problem was the “intestinal” upset, not the vomiting.  It took them a couple of days to get his meds back on track.  Meanwhile, I was the lucky one to finally come down sick while sleeping overnight on the bench in his hospital room.  Bleah!

…A rejection episode in May, which permanently scared the crap out of me.

…Two fab vacations.

…Completing 6th grade and making the Honor Roll, despite missing many morning classes for doctor appointments and bloodwork after the kidney transplant.

…Mixed feelings of gratitude and sadness about the kidney donor and her brave family.

…Enormously supportive friends and family, who showed their true colors.

How impossible this journey seemed when we started down this path 13 years ago!  And yet, step-by-step, we made it!

I can’t help but think how lucky we are and hope that Andy will continue to thrive many more years!

Lesson in Recovering Your life

The other day I read that former New Jersey Governor, Jim McGreevey is aspiring to be an Episcopal Minister.

There is some kind of hold up with the approvals, but in the meantime, the Harvard graduate is making himself useful counseling inmates of the Hudson County, NJ, jail. The inmates are generally women who have drug and other abuse realted convictions.

I had to go back and remind myself of the details of the fiasco surrounding McGreevey’s resignation in 2004. Faced with a threatened sexual harassment suit by a man he had appointed as a homeland security officer and with whom he had carried on an affair, McGreevey admitted to being homosexual.

He owned up to the extramarital affair and then resigned his position as governor.

Of course, at the time it was a huge scandal and the media went crazy.  McGreevey publicly apologized and then resigned as governor.

I’m sure it was pretty embarrassing for him (it was embarrassing to watch) and the turmoil must have been intense.

His wife denied knowing he was gay, although people have come forward since to imply otherwise; his lover left him; he faced a custody battle with his wife over their young daughter; he lost a pretty good job; and I’m sure that’s just the tip of the iceberg for a highly educated, ambitious man who aspired to change the world.

His life was a mess. Frankly, I thought he was a dum dum.

You work really hard your whole life to become the governor of a huge state like New Jersey, and you literally blow it?

Just slightly less ridiculous than the Weiner guy – honestly, with that name, wouldn’t you be extra vigilant to make sure your wiener never got you in trouble?

Recovering Your Life

So, McGreevey. After reading that article in People, I changed my mind.

I like him. He giving back, atoning, although he denies this, insisting that he receives more than he gives.  And from what I can tell, based on  a short article in a tabloid-ish magazine, he seems genuine.

I’m a little shocked at how well he bounced back after his political debacle.

Which made me think that I have to be more forgiving of myself.  And the people around me.

If someone can survive the embarrassment and utter failure at the level that McGreevey did, and walk out the other side apparently normal, then I should be able to forgive myself the relatively insignificant incidents that haunt my dreams.

Thanks, Jim!

Summer Camp Discovery

What a fabulously enticing name for summer camp!  Each day promises to be an adventure – for everyone!  But is summer camp fun or is it summer camp stress?

Realistically, who wouldn’t want to spend the summer constructing erupting volcanoes, engineering and launching real rockets, and baking-up yummy cinnamon rolls?  Exciting trips to the Intrepid Aircraft Carrier, the Bronx Zoo, the Museum of Natural History and a variety of water parks and beaches punctuate every week.

Oh, how I wish I could switch places with my son and have someone drive me to experience highlights of the New York/New Jersey metropolitan area!

Ahhh, but hidden dangers await the kidney child!

Hidden Dangers of Summer Camp for Kidney Kids

Of course, there are all the typical parental fears – of kidnappers and crazed gunmen – those will always been on the list.  But this year, after transplant, we’ve added few new worries to our list of summer camp stress!

• Water – Before transplant, Andy was constantly drinking.  I never had to remind him to drink water.  This summer, he has to force himself.  He says he’s not as thirsty, although his new kidney requires extra hydration.  We send him out with plenty of water, but when he’s away from me all day, it’s so hard to keep tabs on the water drinking.  Plus, he takes spending money which somehow mysteriously translates into pizza and soda at the snack bar.  Hmmm…
• Sunscreen – Applying sunscreen is a given for kids setting off for a day at the Jersey Shore or the thrills of the waterpark.  New to me… when you are immune suppressed, you have to worry more about skin cancer!  And being 13, Andy is not as diligent as I would wish about reapplying after a few hours of swishing down the water slide.
• Scars – The relatively large scar from the transplant has to be protected from the sun.  I found a wide sunscreen stick, sort of like lip balm, that he’s willing to use.  At 13, there’s an embarrassment factor to overcome, but at least he’s a boy and we don’t have to worry about skimpy bikini bottoms!
• Salt – Just forget it!  There is nothing at any snack bar that is low in salt that a 7th grader would actually purchase.  I try to teach Andy to balance his salty lunch with healthier dinner choices, but even this is hard when we are enjoying the long days of summer.
• Meds, as usual, are easier forgotten when routines are disrupted.  We are working so hard, all of us, to make sure our back-up, fail-safe reminders work.  So far, so good.

Finally, once he has survived the day, all he wants to do is come home and play xBox in the basement with his friends.  I would like him to exercise more, or read a book. But that’s a hard argument to make when he’s been active all day.

After a fun season of discovering science and nature, we also discovered that each new experience brings a new set of challenges.  Maybe by next year, we will be used to living with a new kidney and more of this will be second nature.  I can only hope!!

Now that camp is over for the season what will I worry about?

What have you discovered about surviving summer camp?  Please let me know in the comments below!

We’re home, and so far, it seems like we survived our vacation this time around!  At least we managed to avoid a trip to the hospital, although I practically cracked my head open on a cabinet corner when we were packing to come home.  (I’m a big fan of mystery novels and this is the first time in my life I’ve experienced the oft-described sensation of my own warm blood running down my forehead and dripping into my eye!) But other than that, the trip was a smashing success!

In order to avoid a repeat of our disastrous Memorial Day weekend, we set double alarms on our phones to make sure we didn’t forget Andy’s medicine.  A couple of times, Andy changed the alarm on his watch while we were out so that he’d remember to take his meds when we returned to our charming rented cottage.  Recently, I have gotten in the habit of asking everyone what day it is at least once a day to make sure we’re not confused.  I’ve found this to be especially helpful this time of year when there’s no school and our schedule varies widely.

Of course, I got up a couple of times after everyone else was asleep to reassure myself that Andy had taken his meds before bed.

One thing that really helped me relax a bit was that we’d been to the nephrologist just before our trip.  She upped Andy’s dose of Prograff a little, and Andy’s creatinine was below 1.0, which made me feel good!

So, even though we were busy and our schedule was out the window, we managed to conquer our anxiety and enjoy our trip.  We visited a museum to learn a little about the history of the Cape, we biked, kayaked, swam, sunned, ate, and partied with friends!

My grade for us this vacation is A+!

Wow!  Just got home from BlogHer HealthMinder Day!
I can hardly keep my eyes open, but no way can I rest my head on the pillow yet!

Tomorrow, I will tweet out to all my new friends individually – for now,  I want to capture a few quick impressions while they’re fresh.

I had a fantastic day and am so grateful for the many organizers and staff who created an atmosphere of welcome and nurturing.

I met everyone I’d wanted to meet and then some, having resolved that I would leave my usual shyness at home.
Soooo many fabulous women accomplishing amazing things!

Here’s what I brought home with me:
Inspiration
Ideas
Cool stuff
20 Business cards from people I introduced myself to
Pride
Camaraderie
Support

Plus:
My dress made me feel svelte
One person told me I had beautiful skin.
Someone else told me I had nice hair (OMG!)
Another person knew me by my blog name!
Someone told me my belly dancing skirt looked great over my dress.
And the guys in the parking garage were really nice.

My days don’t get much better than that!!

There’s so much more but I have to try to go to sleep now so I can go to work tomorrow!

Thank you, BlogHer!

I’m so excited!  I just purchased my ticket for this fantastic day of blogger insight, information and camaraderie!

“Get expert information, share effective coping mechanisms; learn about the latest online tools and gadgets to manage your own total wellness, and that of your loved ones. This is an event you won’t want to miss.”

I can’t wait to meet other blogger moms who write about kids and how they cope with special needs and chronic illnesses.

I will be sure to post my notes and impressions after the event!