Inappropriate Girl

Should I say that?  No.  Did that ever stop me?

You see, I have this tendency to say whatever comes to mind.  I should think twice about what I'm about to say, but often I just don't give a damn what people think.  That's one of the advantages of being 40 - I care a lot less about what others think of me.  Freedom!  (well, sort of.)

Anyway, that tendency is why my husband calls me "Inappropriate Girl."  I took it one step further and bought the domain name.  You'll find me here now.  Cheers!

Kitchen Adventures

There's nothing quite like being snowed in. You have nowhere to go and even if you did, you couldn't get there anyway. The only thing (well, not the only thing...) left to do is cook. And cook we did, all throughout Snowmageddon 2010 - soups, stews, bread, cookies, cupcakes, marshmallows, sausage...lots and lots of yumminess. None of the recipes we used involved any of the ingredients A can't have: wheat, dairy, eggs, soy, corn, chocolate, peanuts, or potatoes (I've given up on mentioning watermelon - it's a non-issue).  If the original recipe did, we substituted ingredients she could have.  This really only seems like an achievement when you look through the average cookbook. Nearly every recipe has one or more of these ingredients. We've had to get really creative and we're having a ton of fun with it.

Ok, so it's not all fun. Some of the recipes are definitely not hits. Take last night's dinner: Santa Fe Chicken Chili. BUMD and I loved it; the kids, not so much. In times like these, I feel the need to create a 'make-up dinner' (yes, kinda like make-up sex). I'm still trying to figure out what tonight's will be. If I'd really planned well, we'd have had a 'make-up dessert': something really lush and yummy to make up for not having something they liked for dinner. Offering something else to A for dinner isn't really an option. There's only so much she can eat and we're trying to keep her diet as varied as possible (the other two just have to suck it up as a show of unity). I'm sure that this'll result in many stories about how their mother tried to make them eat healthily and ewwwww, so gross! That's probably a rite of passage - they're just getting a lot of miles on it.

In the meantime, they've become quite spoiled. There's nothing quite like having freshly-baked treats and hot, home cooked meals all day, every day. A's food challenges may have made our lives more complicated, but they've also made things more delicious. I'll try to share our cooking adventures a little more often. We're blessed with a bounty of good resources from the Internet. The food bloggers of the world are my heroes.  Thank you!

Nine down, ??? to go

So I said I'd cry if this happened, but it doesn't seem worth it. A is off of wheat now too. For right now, she can't eat anything that has these ingredients: wheat, dairy, soy, eggs, corn, potatoes, watermelon, peanuts, or chocolate. The good news is that we're going to try and reintroduce either corn, potatoes, or chocolate in a couple of weeks. Given that it'll be Valentine's Day, I'm voting for the chocolate. Watermelon is a non-issue; she doesn't like it anyway.

We're eating a lot of good meats, fruits, and veggies - in short, a very healthy diet. No problem with that. I bought some more alterna-flours and I'm going to try bake some cookies today. This could be fun. My grocery bill is huge. I need to plan my garden for the summer. Thank goodness for the internet too - there's a ton of great recipes out there. I haven't food a decent one for bread...yet. Maybe I'll just have to make one.

That said, I'd like to eliminate the term "allergy free." Really, a recipe for water? 'Cause that's the only thing I can find that's non-allergenic. People have a vast array of allergies. There's no "allergy-free" recipe database that's going to take care of them all. I prefer the term "allergy friendly" because there's less of a chance I'll be let down. The last time I clicked on the featured recipe from an allergy free site, the recipe contained several ingredients we couldn't use. I know you can't please everyone all of the time, but we could compromise, right?

In the meantime, we're getting creative around here. It will be fun!

Updates as they happen

I've been slacking on updating the blog, but at least BUMD has been keeping up with things.  In case you're wondering:

The fifth First Annual Holiday Letter

...what happened after the letter went out (or, why holiday letters should wait until after the year ends).

From there, I should probably start updating more.  Gotta get these thoughts out of my head!

How to Preserve your sanity in Modern Day Times and Places

1. Begin each day cheerfully and unhurriedly.
2. If you feel sad, try to bluff it and act happy.
3. Calmly accept the problems of the day.
4. Avoid negative and useless worries. They only cause ulcers.
5. Substitute positive thoughts and emotions.
6. “Age Quod Agis” (Do what you are doing; That which you do, do well)
7. Hand nobody the right to depress you emotionally. It’s much more fun if you do it yourself.
8. Follow a moral code you believe in. (It doesn’t have to be Mommy’s or Daddy’s either!!!)
9. Cultivate a sense of humor and proportion.
10. Meditate daily and recreate reasonably often.

On the Subject of Labeling

It's clean-up time and I'm moving some stuff over from my other journal.

I originally wrote this in January, 2004.
__________________________________________

"What I must do is all that concerns me, not what the people think." – Emerson

I guess this is a sensitive topic for me. My three-year-old son was just diagnosed as having a "Biologically-Based Disinhibition Disorder"; that is, ADHD. This diagnosis comes as no surprise to those who know him well. C. has always been unique in many ways. It's difficult to adequately describe how we knew that something about him was more unique than other children. From his behavior to his speech, something was definitely amiss. We had him evaluated first by the school system's Child Find program. They indicated that he had delays in receptive and expressive speech, social and emotional growth, as well as gross and fine motor delays. They said that ADHD was a strong possibility. From there we went to a neurologist who sent us to a neuropsychologist. After extensive testing, the neuropsychologist pronounced C. to be a very bright little boy with ADHD.

For us, the diagnosis was confirmation of what we had already suspected. Our attitude is, here's our answer, now what can we do about it. In the coming months we will be working with a behavioral management specialist, among others. Whatever we can learn and do to make all of our lives better, we'll do. Knowing that he has ADHD clarifies why he sometimes behaves the way he does. It also lets us learn how we can best deal with him.

The strange part of this comes about when we let others know about his ADHD. For us it is a way of explaining why he seems so beyond energetic and outgoing. "Disinhibition" ought to be C.'s middle name - he's never met a stranger and thinks nothing of sitting on a complete stranger's lap and starting a conversation. Another ADHD description, "runs as if driven by a motor", also suits C. He is as rough and tumble as a little boy can get, except sometimes more so. Our neighbor, when discussing this with me, explained that she thought too many kids were diagnosed and that C. was just a typical little boy. But! Her son “was never like that” . Oh, and her daughter, who is C.'s age, is afraid of C. Wow, thanks. Just because ADHD is over diagnosed, doesn't mean he doesn't have it.

But I digress. Too many people are astonished that we'd allow someone to "label" such a young child. What, like we hadn't already? "C. E." was his first label, followed closely by "Big Man", "Destructo Boy", and “Conzilla” . His personal favorite is "C. Shine", which must always be followed by his song. He is an amazingly cheerful little boy who is enthusiastic about every success. Anyone who looks only at his ADHD "label" and ignores his beautiful smile and sweet disposition is missing out. Of course, their vision may be clouded by having been on the receiving end of one of his hair-pulling or shoving episodes. Or maybe they've had to chase after him as he ran out of the classroom. His teachers still manage a smile at the end of their day with him. They see the boy, not the diagnosis. Why can't everyone else?

The other concern that I've heard is, “I know the way people talk about ADHD kids. I don't want my child to be one of the kids they're talking about”. My guess is, if your child is exhibiting the kind of behaviors that would lead someone to suggest the child be evaluated for ADHD, it's too late. Trust me, people are already talking about the child. Know that the people talking about those kids are petty, narrow-minded folk. Anyone who judges a person based on their medical condition is an idiot who does not deserve my respect or consideration. There, I said it. If you can't handle childish behavior, get out of the field that causes you to deal with children. 'Nuf said.

I have little regard for labels. They are just something that someone calls us. My name is a label. To my husband, I am Julie or Jules. To my kids I am Mommy. Different labels, same me. My eldest daughter K. is often known as "the girl who wears glasses". Last year she was "the girl with the eye patch". My younger daughter A. is now known as "that cute baby". As a newborn she was known as "the baby with the rash". In the future she will likely be known as "that kid with no teeth" or hopefully "that kid with dentures" (at which point we will be known as "that family wearing barrels"). All different labels, for a different reason.

Labels don't scare me. People using labels scare me. The best thing I've read is that a label is only harmful if it is misused. If I use his diagnosis to figure out the best way to treat him, that is using the label properly. If I say "Oh, he has ADHD" to explain why he hit a kid while not disciplining him, that's misuse. Another misuse of labels, in my opinion, is refusing to try to get a diagnosis because you don't want your child labeled. Will ignoring the problem make it go away? I don't understand. I'm not saying you have to get him or her diagnosed with something. If you think there is a problem with your child, get him evaluated. If there is a problem, get the child the help he or she needs. If not, sit back and count your blessings. Parents should be their child's advocate at all times, regardless of the outcome. You know your child, you know when something is amiss. Act on it, don't try to wish it away. I cannot imagine not having C. evaluated for ADHD any more than I can imagine not having K. evaluated for lazy eye. But I suppose it is less socially acceptable to have an emotionally and socially challenged child than a nearly-blind-in-one-eye child.

The range of potential manifestations for C.'s "label" isn't much shorter that A.'s. No two kids with their conditions react the same. No one has a problem accepting that she has a medical condition, but his diagnosis often draws challenges. Why? Because his "label" isn't acceptable in our society. Hopefully someday it will be.

Representing the People

When people ask me why I'm so enthusiastic about Barack Obama, I'll show them this:

Visit msnbc.com for Breaking News, World News, and News about the Economy

This is an issue that's important to me and he's addressing it. I love that he's such a good husband and father. We need more men like him and BUMD in the world.

Proud Parenting Moment

BUMD just handed A a banana. In typical fashion, she immediately raised to her ear and said "hello?" Looks like we're raising them right.



(Yes, she's wearing a Christmas Dress in October. You can never start celebrating too soon, at least in her world.)

Music Monday

Summer is finally starting to slide into fall. The kids are back in school, the weather is almost cooperating, and heck - the calendar says it is so. There's something refreshing about fall. It's as though summer is one big free-for-all and fall is purpose-driven, but not necessarily rigid. There's still time for jumping into piles of leaves, but only after you're done with your homework.

Billy Joel's song Famous Last Words always makes me think of fall. It was his farewell to his usual songwriting, but at the same time it's a farewell to summer. "Summertime has come and gone," but "there's comfort in my coffee cup and apples in the early fall." One season ends, but the next is just as welcome. Life keeps moving on.

"Ain't it sweet after all these years"?

Inspiration

Now that I've whined a bit, it's time to get back to laughing about it. Like Kirsty says on her blog: "If you don't laugh, you'll cry, and nobody likes a crybaby." True that.

I've settled for telling people that A has enrolled in the Disease of the Month Club. It's an easy answer to give to people who ask how you and the family are. I've also come up with a plan for the kid picture for the holiday card. You see, K has vision problems. C has speech problems. A's next appointment is to check out her hearing problems. Can you tell where I'm going with this? It's going to be great.

Stripes

I've been staring at the title of my last entry off and on for the last month. The whole entry seems over-dramatic, except for days like today. I just got off the phone with the pediatrician (again, too many times this year) to discuss the latest zebra. Another incidental finding. Another report consisting of 'everything's ok, but we noted some things that don't belong there'. Maybe they're an issue, maybe (hopefully) not. But go see a specialist to see what (s)he thinks. We've seen this specialist before and eventually been given the all-clear. Please let it be so again.

I am so, so tired of this. All of this - the poking, prodding, what-ifs, and hopefully-nots. Thank goodness I've been blessed with a child who is able to deal with it. Just yesterday she helped convince her brother that the flu shot wasn't really that bad. "I'll go first and show you how it's done," she said. What a lovely, brave girl. Why does it always have to be her?

Zebras

"When you hear hoofbeats, think horses, not zebras"

I've been struggling to find a way to explain A's tendency to come down with intriguing medical conditions. I'd already been chastised for calling her "weird" and rightly so. It's not nice to call your child "weird" even if that's an apt explanation. Yesterday, I found the solution - she's a "Zebra Collector."

According to Wikipedia, Zebra is a medical slang term for an obscure and unlikely diagnosis from ordinary symptoms. A has had more than her share of zebras. Why? Who knows. What we do know is that if someone in our family is going to have a weird illness, it's her.

Yesterday's pediatric ophthalmologist visit resulted in a "Horses" diagnosis. We love those. Dr. S has known A since she was three weeks old. She'd just been diagnosed with a rare genetic syndrome that is associated with eye problems. When I told him yesterday about A's recent diagnosis with Eosinophilic Esophagitis, he said "Wow, that's rare."

"So's IP (Incontinentia Pigmenti)," I replied. That conversation prompted him to look for the zebras, as he put it. I can't believe I didn't think of that term sooner. He's brilliant, as usual.

Looking for zebras shouldn't be routine, but in A's case it is starting to be. She's had repeated cases of having the diagnosis that one wouldn't expect. We had more cases than just the IP and EE. I can't decide which I hate more - looking beyond the usual symptoms or missing the diagnosis. For her, it's probably the latter. I just hope the other two continue to go easy on us.

Now, if I can just find a pink zebra to give her, life will be perfect.

Sweetness

The best thing about having a sister was that I always had a friend. - Cali Rae Turner

A brother is a friend given by Nature. - Legouve


A just told me that she's letting C put some things he wants on her birthday list "because I'm a nice person." When she went back into the next room to check on his progress, he told her how nice she was to let him do that and she said "well, I love you."

I need to remember this when the two of them are fighting like cats and dogs.

To medicate, or not to medicate

Today was the last day of camp for C. It was his first time going to day camp. For that matter, it was his first time attending anything other than school. We've never been comfortable leaving him alone with anyone who might not be capable of supervising him properly. He really can be that challenging. Also, he's such a homebody that he really isn't interested in going out and interacting with other humans some days.

Camp Shalom changed all that for us. He loved it. His only complaint is that it doesn't last the rest of the summer. We enrolled him in the two-week camp on the advice of our educational consultant, the wonderful Jill. She was, as always, right - it was exactly what he needed. Camp Shalom focuses on social skill education for kids with ADHD, Aspergers, and/or High Functioning Autism. Social skills training is so important for kids on the spectrum, because social skills are what they lack. By teaching him these skills, we can help C interact with other people more effectively.

The other thing we do to help him interact with others is medicate him. C is on two different ADHD medications - Concerta (stimulant) and Strattera (non-stimulant). This is the combination we've come up with after working with his pediatrician for several years. His pediatrician has worked with thousands of kids over the years. Out of these, he's only put eight on medication before they turned five years old. C is one of those eight.

When we tell people how old he was when we started him on medication, they're usually shocked. Most of the rest knew him before he was on the meds. Anyone who's seen him off the meds (in the morning or evening) know why he's medicated. It makes sense to them. He needs the extra help the meds give him. His impulses are controlled to the point that he can concentrate. At least, that's what I thought. When I talked to the counselors today, they were surprised to learn that he's on medication. They thought for sure that he was on a medication break. These are trained counselors with experience working with kids like him. I don't know whether to be amused or concerned. I guess concerned - if he can't concentrate with the help of medication, then what the heck do we do?

I read a great article on medication options the other day. It's a rarity to find an article discussing medications in a fair and balanced way. I'll be referring to it again in the coming weeks before school starts as we work (again? still?) to make sure C has optimal assistance in focusing on his schoolwork. I would love to be able to ditch the medication (the co-pays alone are a good reason to want off it), but I don't think it's a viable option for him. Anyone have a magic wand handy?

Music Monday

This is the first song we played today and, really, it is this sort of expectation I would like to set for every day. You should always know that you are blessed and lucky.

Another day, another diagnosis

If you know our family, or have read this blog often, the first thing that probably came to mind upon reading the title of this entry was "ok, what does A have now?"

If so, you're right. It's not that she's a sickly child, exactly, it's just that she seems to accumulate rare conditions at a faster rate than the rest of us. Certainly, she's had more diagnostic tests than the rest of us combined. We've started to look at it as her way of ensuring we have enough material for the annual holiday letter. What else could it be?

A had her first formal diagnosis soon after she joined us. As is often the case with her, first she had to go through a lot of testing and multiple-doctor consulting before they finally put a name on what she has. A name isn't exactly necessary, except that it gives us a way to identify the set of symptoms that she has so that we can get help treating them. The name most certainly does not define her. In fact, the only name that comes close to defining her is the nickname that her father gave her: The Reigning Queen of Pink, Grand Duchess of Fluff, and High Protector of Barbies. I suppose that calling her a "hausfrau" also works (her favorite gift ever was the vacuum cleaner her aunt gave her), but it lacks that je ne sais quoi that the other nickname has. Besides, it's spawned another nickname - her great-grandmother, also a fan of pink, is now known as the Queen Mother of Pink.

That first diagnosis was Incontinentia Pigmenti. Try saying it three times fast, or even spelling it without looking at the word. Never heard of it? You're not alone. Most doctors we see last heard of it in medical school. Whenever I encounter someone who has heard of it, I practically weep with joy because I don't have to explain it. Someday I'll write a post all about it - I've always found it comforting and fascinating to read about others' experiences with the condition. I should give back. For now, I will tell you that it means that she had a weird rash as a baby. Since then, the main effects have been cosmetic. She has alopecia (bald spots) on her crown. Most of her teeth are missing and some of those that exist are peg shaped. According to the dentist, she had 14 baby teeth and will eventually have 12 adult teeth. According to my calculations, we will need to win the lottery so that we can afford to buy her some teeth some day. To her credit, when people ask her what happened to her teeth she just tells them that mommy and daddy are going to buy her some teeth when she's older. At six, this isn't such an issue. As she gets older, she may feel self conscious. I hope not. She's fierce and we've taught her to revel in her individuality.

The next big way she made her mark was to lose a kidney. The OB swears that the ultrasound taken when I was eight months pregnant shows two kidneys. The ultrasound taken last fall only shows one. We've had her check under her bed, in the closet, etc., to no avail. Who knows. She also now has a kidney stone in that solitary kidney. We found that after she peed pink on Mother's Day of this year. After a visit to the ER, we followed up with her nephrologist. I explained that A was clearly suffering from pinkatitis. A was thrilled - even her pee is pink! I love that she finds joy in what other kids would be freaked out by. We're still monitoring/treating/pondering the kidney stuff.

While the kidney issues were ongoing, A was also complaining about stomach pain. Some were tempted to write it off as kidney stone pain. I didn't think so and luckily we have a good working relationship with her pediatricians. They ran some more tests and eventually referred her to a gastroenterologist, who ran even more. Another wonderful thing about A is that even the tests no longer freak her out. Blood tests are a piece of cake and peeing in the cup is de rigueur for a doctor's office visit.

We talked to the gastroenterologist about reflux, which didn't seem to fit. Allergies seemed more likely, except that she'd been re-tested last year and had negative skin prick tests to the foods she'd tested positive to a few years back. In the last few months, she'd been back to the allergist for a cough that disappeared once we removed soy from her diet. Before that, the allergist had her do a trial run of Zantac and took a chest x-ray as a precaution. The x-ray was clear, but showed an enchondroma (benign tumor) on her rib. We're following that with an orthopedist and wondering how she managed to develop yet another condition.

The stomach pain had kicked into high gear shortly after we removed soy and substituted lactose-free milk. We took that out and the pains subsided, but didn't go away. The gastroenterologist took all of these events into consideration, along with the negative results to the testing he'd ordered, and concluded that it would be best if we bit the bullet and had him perform an endoscopy to check out her insides.

The endoscopy was scheduled and we prepped A by telling her that the doctor would put her to sleep before he took pictures of her insides. She told me that she'd need to bring some books with her because she always reads before she goes to sleep. Seriously, I adore this kid.

The endoscopy was relatively easy. The most painful part was the $250 co-pay. The best part is that A got to see pictures of her insides, which were pink! Life can't get much better than that.

Now, I'm a research fiend. I must know everything about the topic I am obsessed with at the moment. This serves me well with her IP, since I often have to educate doctors about it. I've been asked by more than one if I'm in the field. LOL So, it shouldn't be particularly surprising that I had researched her symptoms and come to my own conclusions about what she had. The doctor seemed a little surprised when he called on Thursday and told me that A has Eosinophilic Esophagitis, and all he got in response was "ok". I eventually had to tell him that I'd done my own research, which made the rest of the conversation fairly simple.

Less simple is what follows. She has an appointment with their EE clinic to have further testing by the allergist they work with. She'll probably have to go on an elimination diet. We will certainly have to remove the problem foods completely from her diet.

Upon sharing news of her latest diagnosis with others, one response I got was 'Oh, how awful, she won't be able to eat anything' - basically, her life will suck. Sure she'll be able to eat. We'll just have to adjust the types of foods we make for her. Our food bill may suck, but her life won't. If we have anything to say about it - and we have plenty - she'll just look at this as another fun adventure. She's brought us on so many already. What's one more?

The gall, I tell you

Summertime - it's our vacation, right? Not so fast. It's hard to have a fun vacation when you don't feel well. It's also hard for the kids when their parent doesn't feel well. None of this makes for a fun or even active summer break.

The day before school let out, I ended up in the ER with severe stomach pains. I thought it might be my gallbladder, but the doctor said it was kidney stones. Fine, then - off to the urologist. He said that kidney stones were an issue, but he thought that, given where the pain was, my gallbladder might be the problem. Back to square one. An ultrasound showed sludge and the urologist sent me off to the surgeon. The surgeon helpfully described it as a "sludgeball" (BUMD said that it sounded like something the kids would call each other) and said he'd remove the gallbladder. The first available surgery date was two weeks later. In the meantime, I was told to just eat a bland diet. Easy - for those not doing it.

One definition of gall is "something bitter to endure." That pretty much accurately describes living with a malfunctioning gallbladder. Eating hurts. Not eating makes me feel unwell too (although it's great for weight loss). We were supposed to meet friends for a BBQ in Canada. We'd made fun plans to tour parts of Montreal, Quebec, Massachusetts, and Vermont. All of those plans were cancelled.

Needless to say, it hasn't been a fun summer so far. However, surgery was Tuesday and I've been feeling better since. The kidney stones still need to be dealt with, but that will wait for now while I recover from round one.

Things are looking up in the kids' lives as well. C starts two weeks of summer camp next week. He should have a blast. During the second week, K is going with her grandfather to visit family friends in Colorado. She'll get to be an only child and do some hiking. She's very excited. A is excited too - during the days on the second week, she'll be an only child too. She's having fun dreaming up all of the activities she and I will get to do alone, together.

Maybe, just maybe, our real summer has just begun.

Saturday in the Park

It's the Fourth of July - how can I pass up the opportunity to play this song?

The Internet is really, really great for so many things. In this case, it's because I can post from my iPhone. Pretty cool.

Day of Reckoning, Final Edition

"Final Edition", 'cuz I'm never doing that again. Epic fail on the weight loss plan. Clearly, declaring my intentions in public didn't make me any more likely to be successful. All in all, app. 10 lbs. down total since September. I never made it to more than 14 lbs. down during the past several months. At least I didn't gain weight. ;-)

I have learned some things about what works for me (other than not going public). I am prone to making grand plans and then dropping them if I don't follow them to a "T". I need to just settle down and focus on the basics: get healthy and fit. How I get there doesn't matter as much as if I get there.

Dairy is not my friend. I've mostly removed it from my diet and I feel better. Cheese and butter taste so good but make me feel so bad. Chocolate is also a frenemy. Despite what I keep reading, chocolate does cause acne. Within a day or so of eating it, I break out in evil cysts. So not fair.

The South Beach Diet plan is also a mixed blessing. If I follow it to the letter, I lose weight like crazy. I also feel awful and fairly deprived. I need to figure out how to customize the basic concept so it works for me. I avoid dairy, artificial flavors and colors, and artificial sweeteners. That eliminates all of the dessert options. Boo hiss.

Exercise is a good option to lose weight, but only if I do it consistently. I think what I need to do is try to become strong and healthy, instead of focusing on burning the calories. Get healthy and the weight loss will follow. Even if it doesn't, I'll still be in better shape than I am now.

The most dramatic lesson I learned recently is that, why, yes - kidney stones are more painful than labor. I've been through natural childbirth and I drove myself to the hospital when I had appendicitis. The pain I had two days ago was so bad that I was crying and unable to move until it subsided. A visit to the ER soon after brought news that I have multiple stones in both kidneys, including a 6mm one in my right kidney (where the pain was). They gave me nice drugs and a referral to the urologist. I'll see him next week. In the meantime, I've been doing a lot of reading about kidney stones. It's clear that I still have some dietary changes to make. I owe it to myself and my family to try to be healthy. Will this involve further weight loss? Probably - but you can bet I won't be talking about it until after the fact.