"It's Probably Not Cancer" and how we switched pediatricians

Before Vegas was born, we knew that having a good local pediatrician would be crucial. We couldn't use Little Man's - she was not only over two hours away, she also had terrible availability. So we toured an office on the recommendation of friends and absolutely loved it. It wasn't perfect, this ped was still a half hour's drive from us. But we figured it would all work out in the end and we were fairly used to driving to any appointment so it was decided - New Ped would see Vegas and eventually we'd transfer Little Man there as well.

Flash forward to the day we arrive home from the hospital... New Ped didn't have privileges at our hospital so we called to set up the newborn visit for sometime in the next few days. I was very anxious to get the all-clear on Vegas despite all the assurances he was practically perfect in every way, and New Ped had promised to see him herself ASAP.

"We're sorry, we don't have any availability for at least three weeks."

Three weeks? But this was the newborn check!  He would be practically ancient by then! And if there was a brain bleed, it would go undetected for three weeks? Hell no. 

We begged, we pleaded, we repeated the assurances we'd received only a couple of weeks prior. But the receptionist was rude as hell firm - no visits were available.

So we called another pediatrician, this one was between Hubs' office and the house, an ideal location but we'd never met them. He could see Vegas the next day for his newborn check. We were sold.

New New Pediatrician's office was a little more ancient classic. It was in a bigger building with a lot of other doctors, and these pediatricians had been practicing for a lot longer than New Ped. This didn't really bother me much, most of his wisdom was the kind of stuff I'd grown up hearing at my own doctor's visits, and I could relate. He was a friendly doctor, great with Vegas, and he said it would be fine to switch Little Man to him as well.

After we brought in Little Man though, he quickly realized that he was not equipped to handle a kid with disabilities this intense. Although he did say we could continue with his practice, his actions suggested he was uncomfortable with the situation. He refused to even give Little Man a flu shot because he was unsure of the protocol for kids with shunts. We decided after that visit that Little Man would continue with a New New New Pediatrician, and we'd keep Vegas with New New Ped.  Still following?  Good. You're doing better than I thought you would!

Back to Vegas' story - New New Ped was now very cautious with Vegas' health after seeing his big brother. Within his first few weeks, we'd already been directed to a see a specialist about Vegas' feet (slightly bowed from his position in the womb), and another specialist about his pretty intense baby acne.  A few months after that, we were told that Vegas' head was above average sized and he would need to be brought in for extra appointments, our heads needed to be measured and averaged, and then we'd possibly see a third specialist at Children's Hospital.  A couple months later and we were finally told that he just has a big head - but now his "slow development" was concerning. Vegas was already 9 months old and not playing patty-cake.

I think that day was when I finally realized this pediatrician - despite his good nature and great location - was not going to work out. I knew there was nothing wrong with my littlest. He didn't play patty-cake because I don't play patty-cake with him. No, he didn't stand already - but he was slower to walk and so I wasn't worried in the slightest. Until New New Ped told me to worry that is. I didn't have any options for a new ped that I liked and trusted in the area though, so we just stayed with New New Ped because it was convenient. I figured if I found someone we'd eventually switch, but I was not in a big hurry.

With birthdays and vacations keeping us busy all summer, Vegas was late for his 1 year checkup. We went in and he needed his four vaccinations and a blood test for iron levels. The nurse suggested we do the blood test first, and it would be a quick finger prick.

The finger prick took forever, he was slow to start bleeding and it felt like that vial couldn't fill up fast enough. He was hysterically crying and it was breaking my heart to hold him down. Eventually she'd gotten enough blood and she gave him a bandaid and left the room to drop off the vial.

Suddenly Vegas' finger started to bleed for real - all down his arm, the table, and the floor. He was struggling and screaming and I couldn't keep a grip on him on the exam table. I screamed for someone to help me and no one came, even though I had seen a group of nurses hanging out just outside the door.  After what felt like an eternity but was probably only a minute or two, the nurse came back and helped me calm him down and bandaged him back up.  But I was totally thrown, and the shots that followed didn't do anything to calm me down.

We got home and I called Hubs to let him know he was in charge for the next blood draw, and I that I hated the nurses. Even then I was still not "done" with New New Ped, but we were definitely going to be looking for a new doctor sooner rather than later. I was angry, but not angry enough.

That is, I wasn't angry enough until the next day. Hubs called me while I was at a class and told me that New New Ped called him at home around 5 pm. He had gotten the results of Vegas' blood draw and he'd "never seen anything like it before", it was extremely abnormal. He wanted Vegas' in for a redraw in a week, because even his colleagues were confused by these results.

He did want to assure us that it was "probably not cancer though".  This was an issue with red blood cells, so yeah, he didn't think it was cancer.  But it was definitely urgent, and we needed to be in soon.

That is when I went from angry, to Mama Bear furious.  Calling a family at home as they sit down to dinner to inform them of this kind of news? News that you probably had all day, that you waited til end of business day to call to talk about?  News that is "urgent", but we will wait a week to see what happens?! And where in the WORLD did the "c" word come from?!  I am no medical doctor, but even I know that an abnormal red blood cell count doesn't bring cancer to the front of the pack of medical issues you're having, and you're talking to the very frightened family of a one year old!?!? OVER THE PHONE?!

By the next morning we'd switched Vegas to New New New Ped, the lovely but not local doctor we'd found for Little Man. Between 8 am and 11 am, they'd called New New Ped, gotten the lab results, gotten Vegas' records released, reread the lab results, and confirmed with me that they felt it was a faulty test and human error - not a horrible blood problem. Possibly anemia. They wanted to do a retest to confirm that, because they didn't trust this test at all, but it was nothing to panic over. And that was that.

I wish we'd started seeing a new doctor sooner. I should have trusted my gut and switched the minute I realized that this guy was not a good fit for our family. Lesson learned the hard way.

Little Man and Vegas, healthy and probably cancer free.
Seriously, eff that doctor.

3 Years Ago...

3 years ago Little Man underwent a shunt revision. He'd been having vomiting episodes for almost a year, and every time I took him to the doctor or the E.R. I was assured everything was 'normal'. He was exposed to germs in daycare and Ex's house wasn't the cleanest of places (a story for another day), so his vomiting was chalked up to those things and called a day.

Eventually Hubs and I ended up making a 2 hour trip to the only emergency room qualified to give Little Man an MRI or CT because of his shunt. Even after I brought my listless and exhausted three year old in to this major hospital E.R., they couldn't find anything wrong him. They tapped it (took some cerebral spinal fluid from inside the shunt) and his pressure seemed normal. But as the medical resident was tapping the shunt, some spinal fluid leaked and he seemed to be having a tough time with the procedure. We didn't know it then, but he hadn't gotten an accurate result.

He was sleeping most of the time, a symptom of shunt failure but also a symptom of every other illness ever.

So after a three day hospital stay, the head of the pediatric neurology team came and performed the tap again herself. They'd been hesitant to tap again so soon because every tap can introduce germs into the shunt and that's a place you don't particularly want germs. Also because of other medical junk I cannot remember 3 years out. But anyhow, the neurologist found out that the shunt was partially clogged and not working, so they scheduled a brain surgery for that afternoon. The surgery was quick, "an easy brain surgery" (according to the surgeon, not me), and after another overnight he was able to leave the next day.

Wicked headache and bad haircut, but a total trooper.

Needless to say, I felt terrible that it took nearly a year of doctor visits and nightly vomiting episodes to figure out that he was having a shunt malfunction.  Unfortunately, the symptoms of a shunt malfunction are:

• Irritability
• Refusal to eat
• Vomiting
• Feeling more sleepy than normal
• Headache

Do you recognize any of these symptoms? Surprise! A shunt malfunction looks like any other three year old's regular old stomach bug. And with Little Man having had only partial blockage in his shunt, his symptoms were coming and going without a pattern of any kind. Not to mention that he could never tell me if he had a headache or not, and at that time in his life he wasn't refusing to eat the way he does now. With so few symptoms, it took a long time to come to the decision to perform brain surgery on him again, which I suppose is both good and bad.


So what makes me bring this up now? Well, Little Man is going through a new fun stage where he likes to see how far he can get his fingers back in his mouth to touch his tongue and his teeth. A couple times, he's made himself gag nearly to the point of vomiting. (YUM!)

Last week I came into his room to get him ready for school and he'd vomited during the night. He was otherwise absolutely fine, and raced downstairs for breakfast before I could say, "hey dude are you okay?"  I decided to chalk it up to the new gagging thing, and after cleaning it up I thought very little about it.

Then yesterday morning I walked in and Little Man was just waking up. He immediately started gagging and threw up two or three times before crawling back in to bed exhausted and sleeping for another two and half hours. Since I watched this one and know it wasn't self-induced, I was pretty panicked. He woke up around 10:30 in a terrific mood and bounced all over the house... and while that might seem like great news, it actually puts a lot more fear into this situation for me and Hubs.

So this is why I worry every time my kid is sick. This is why every stomach bug or sniffle has me on high alert... because we're hoping this isn't the start of another long process. We're hoping this is something normal and kindergarten related. Cross your fingers for us.

Little Man Hates Dentist, Vegas Loves Food

Little Man's dental appointment has been pushed back so many times it's embarrassing.  The first time we tried to take him was over a year ago, and while filling out the medical form I naively added "by the way, he has a shunt" line to the medical issues part.  Turns out with a shunt that they don't clean your teeth without prior approval from a doctor.  Whoops.  So his teeth were counted, looked fine, and I called it a dentist win.  I rescheduled and canceled several times because every time the appointment came up again, I'd forgotten to talk to his neurosurgeon.  After intense prodding from his social worker this summer, I re-re-re-scheduled the visit, only to forget again.  Sensing a theme?  But this time I got on the phone with neurology and got everything taken care of in less than an hour. Except it was 1 hour after his appointment time.  Sigh.

So finally yesterday was the big day!  We got to the dentist, and of course we had been mislabeled as a regular ole kid who can get his teeth cleaned by a nice little old lady.  After a gentle reminder (and 30 minutes), we got a strapping young doctor and strong dental hygienist who could help me pin the kid down while his teeth were cleaned. I still got kicked in the kidney several times, as I was designated "hand-holder". On the bright side, he was given a thumbs up on the clean, straight teeth. Then I was warned that six-year molars are on their way.  Yikes!

We raced back home to get Little Man off to kindergarten, which meant Vegas skipped lunch while Little Man ate a danish in the car. Mom points for that one, I know. I quickly realized that Vegas was not enjoying watching Little Man eat and not having lunch, but since Vegas is a little on the messy side, I was S.O.L. on what to feed him as we drove. A half-hour of wailing later, I caved and tossed an applesauce squeeze to him in a church parking lot.  I figured, what the hell, he'll either be covered in applesauce or get a bite to eat. Surprisingly enough, he grasped the squeeze and sip solo concept pretty fast, ate the whole thing, and was dying for more.  Two more parking lot pull overs later and he fell asleep as we pulled into Little Man's school.  Of course.

When we got home from dropping off Little Man, Vegas ate a hard boiled egg, 1/4 cup of olives, a cheesestick, and half a mango before passing out again.  That kid can eat!!

Today we are finally off to get the last few issues in my car looked at before I never shop at that dealership again.  I've had so much trouble with them I could scream.  And I have, several times. Wish us luck!

The First Day of Kindergarten... Er... Again

Yesterday was Little Man's first day of kindergarten, round 2.  We held him back this year for a few reasons, the main one being that he is still not able to sit and follow directions for any significant length of time, and he's still having a lot of trouble with transitioning from one activity to the next.

I met his teacher a couple of days ago.  She seems nice enough.  I'm hoping she is as fabulous as his last teacher, but jury's still out.  Open House was kind of my worst nightmare, because it was during the day and so with Hubs at work I had to take both boys in the double stroller.  I tore off a toenail and managed to bash into a doorjamb. Sorry Vegas.  He didn't flinch, but the parents watching me sure did.  Whoops.  Oh and also, Little Man threw an epic tantrum that lasted the entire 45 minutes we were in the building.  I was a sweaty beast by the time we left.

Quick story - In the morning when Little Man's bus turned into our neighborhood, we walked down to the end of the driveway per usual.  (I always watch from the shelter of the garage until the bus drives past us, because she has to U-turn at the cul-de-sac to exit the neighborhood/stop at our house with the bus door on the correct side.)  Our new bus driver drives right past us as I give my best "HEY WTF ARE YOU GOING!?" face and frantic arm wave.  So she brakes at the very end of the neighborhood, and I drag Little Man to the bus and push Vegas' stroller along side.  Apparently the paperwork was incorrect again and she'd been expecting to stop at the bus stop in the cul-de-sac.  Womp womp.  She got pretty snippy with me and it was a fairly stressful start to the morning.  As I tried to clear things up she waved me off and told me to call transportation to deal with the paperwork, she had no time for me.

Transportation's phones were all busy (first day of school must be awesome there), and after several tries over the course of the morning I got a machine where I left a terse message to please call me back to correct an issue with a bus stop for a special needs child.  Less than 3 minutes after leaving the message, the para (assistant who stays with the kids on the bus so they are safe) from the bus calls me to apologize and let me know she'll take care of all the paperwork and not to worry my pretty little head about it.  I might have paraphrased that conversation.  Which was great, because surprise surprise, transportation never called me back anyways.

So that was the start to our first year!  Today Little Man was shepherded onto his bus with four Target bags filled with important kindergarten supplies like glue sticks, crackers, and juice boxes - and it definitely stopped at the end of our driveway.  Here's to another great year!

Wiggly boy = Blurry memory.  Sorry kid.

My Darling "Baby Vegas"

My littlest "bug-bug", Baby Vegas,

This morning you woke up cheerful - you always do.  You love to rock back on forth on your chubby little feet and give me a big grin to start the day.

We had a big breakfast of oatmeal and yogurt, and I turned on my phone to play some music from the Disney station on Pandora.  The first song that came on was "Somewhere Over The Rainbow" by Israel Kamakawiwo'ole, and I cried because I knew your uncle was watching over you and wishing you a Happy Birthday.  I don't have the song saved on my phone and had never heard it on the Disney station before... so I knew it was him right away.  I had called your grandma last night missing him so much with your birthday coming up - he would have loved learning about you and being your friend.  I watch you growing into your name (your real name, my little Vegas), and I laugh sometimes at how much you honor him without any prompting necessary.

You are my explorer, you are the little boy who doesn't quite understand "no" yet.  You are sunshine and big hearty belly laughs.  You are my healing.  You are the spitting image of your Daddy, with a smidge of Mommy thrown in.  I have never loved any baby boy quite the way I love you, you are unique and special and brilliant.

Some days I can't put you first, some days it is all about your brother - and you already seem to understand this and accept it.  You already watch out for him, and you make sure his DVDs never stop and he always has a wrestling buddy.  You want to do everything he does - eat what he eats, drink from his cups, watch his movies.  You are patient and loving when he cries, and a bit of a pest when he is calm.  In other words - you are a great little brother, and it makes my heart grow six sizes when I watch you two together.

Every month as you grow up and get bigger, I think that I want to keep you this way forever.  I want you to always be snuggly and sweet and innocent and beautiful forever.  Then every time you change, and every time you surprise me with a new milestone - I know I can't wait to watch you become a little toddler, and soon a little boy, and then a little man.  I am so proud of you Baby Vegas.  Today you are not a baby any longer, and even though that breaks my heart a little... this next year is going to be magical.  I love you oh-so-much Vegas.  I am so glad I get to be your Mommy.  Happy Birthday buddy!

Love You Forever -
Mommy

Getting Through Dinner

This video showed up on my newsfeed this morning.  If you're like me and don't enjoy clicking back and forth on a phone, I'll sum it up for you. The ABC program "What Would You Do" did an episode about a child being taken out to lunch with his family.  The child in the program behaved as if he had autism (repetitive words and wandering, among other things) and then ABC waited with their hidden cameras to see what diners would do.  When no one reacted to the boy's behavior, they used another actor to instigate some trouble - he acted offended and gave advice to the family (ie; take your kid home or discipline him.) The entire diner then rallied behind the family and the actor that was being rude was encouraged to leave the diner amid cheers and clapping.

I cried a few times watching the video.  Probably because I'm really over-tired from a fun yesterday of wine tasting and grilling out with my in-laws.  Also because I cry at commercials and kids movies.  But honestly I probably cried a little because it was great to see people doing the right thing by this family, whether it was a real situation or not.

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Taking Little Man out in public is always risky.  We do our best to prepare for any possibility, but sometimes it just doesn't want to work. Little Man chooses seemingly on a whim the days where he will be a reasonable companion to our outing, and something that worked to calm him the week before will suddenly no longer work.  Our diaper bag has more distractions for Little Man than diapers and formula, and we are constantly finding new items to carry with us that might just help us during those crucial few moments before a tantrum becomes a full-out meltdown.

Last weekend we took Hubs out to dinner for his birthday to a crab shack that is way out in the boonies.  We'd been there a few times before, and it's great food and short wait times - basically a good place for dining with kids.  We packed up the diaper bag full of snacks, toys, and the portable DVD player and were all set for a great lunch.  Until we sat down and stuck Little Man in the highchair.  Nope.  Not having it.  He was screaming bloody murder, and we took out the Last Resort - the magic DVD player.  And it broke.  And because we were out in the boonies, there was no WiFi to stream a movie on our phones.

We were in the back corner of the restaurant, but the screams were loud and then he started hitting his ears and head (extreme meltdown mode).  So Hubs grabbed his beer and the Little Man and they went outside to cool down.  Ten minutes go by and we think we've got the DVD player working again, so they come back in.  The DVD player works for a few minutes and then it breaks again, leaving Little Man in tears. Not even the allure of fruit snacks is stopping this tantrum.  They go back outside and hang there until dinner arrives and we decide to try one more time.  For whatever reason, third time is the charm and we make it through dinner.  Crisis averted, I guess.  We got to eat dinner, and it wasn't cold.

When  I was waiting for Hubs to come back inside the second time, the woman from the table next to us stopped by our table and leaned down to talk to me.  "You're doing a great job", she said, and then just smiled and walked off.

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As strange and awkward as it might seem to offer that sentiment to a complete stranger, I wish more people had the courage to say something.  Because it really helps.  It helps when you feel like everyone is staring, and everyone is judging you for not having your kid "under control" and not "disciplining him".  It helps in those horrible moments in the grocery store where you just want to melt into the floor because you know that it isn't "normal" for a six year old to be sobbing uncontrollably while wiping his tears into his mouth and chewing on his fingers.  It helps when you are watching your child slap his head and face, and you're wondering what the dozens of watchful eyes are thinking to themselves as they stare at your family in the checkout lane.

We live this situation in varying degrees all the time, and it is very, very real.  That horrible diner from the video that is judging that family is out there, and he embarrasses you and breaks your heart sometimes.  The "it takes a village" mentality about being able to shame all children (yours or not) into behaving while they are out in public is mortifying to a parent of a child with developmental disabilities.  People who know nothing about your child find it extremely important to tell you what you are doing is wrong and that you aren't parenting properly. Despite the happy message of the video, it is much more rare for me to encounter a person who simply supports us, builds us up, and reminds us we aren't alone and that even though it looks bad today - we are doing a great job and things will be better tomorrow.

Just think about it next time you see a family struggling out in public.  Think about how hard they are working to be "normal", or even to just get through this one outing, this one afternoon. Think about it before you give them a dirty look or roll your eyes because they are disrupting your life somehow.  I promise that most of those families wish you weren't inconvenienced by them as well.  I promise that most of those families wished you never even noticed them.  We're just trying to get through dinner too.

Now What Do We Do For The Rest Of Summer?

Little Man had his last day of summer camp yesterday.  I was thrilled at the idea of getting a few extra minutes of sleep in the morning, but then reality set in - the kids wake up whether there is camp or not!  My alarm didn't go off this morning, but I still woke up at 7:15 on the dot to get everyone downstairs and our day started.

We only have two weeks until school starts, but I am not really looking forward to the weekdays. I know I won't get nearly as much done during the day. I also know that too much contact between Little Man and Vegas gives Little Man a case of the "ohmygodshutthatkidup".  Especially now that Vegas can babble and follow Little Man all around the house.  I don't know who to feel sorry for - the big kid who needs quiet and alone time without being overstimulated by a squealing toddler, or the little kid who thinks everything his big brother does is awesome and he wants to be right next to him all day long.

Speaking of toddler, Vegas is almost one year old!  Just in the last few weeks he's been making physical leaps - he now uses his Thomas train as a walker to toddle all over the house, stands alone for a few minutes at a time, and has mastered the sippy cup!  I found out the last one when I heard the familiar sound of milk being tugged out of a sippy, and realized it was Vegas taking a big gulp out of Little Man's milk cup. Whoops.  So yesterday we started weaning him off formula and I don't think there is going to be a problem there at all.  He loves his nighttime bottle, but I think that is more of a comfort thing than a nourishment at this point.  He eats so much food now too, and he has no dislikes yet - so his diet is pretty varied and healthy. I've also felt pretty strongly throughout his babyhood that I would let him help guide me in what he was ready to eat and how much he'd like - no rushing him into solids and when he was hungry, we'd eat.  He really preferred/could best handle purees for the longest time and just now has started being able to swallow and tolerate firmer chunks of food. I feel like we've gone from 0-60 in food options overnight!!!  Yesterday for dinner he had avocado, banana, broccoli, carrots, lima beans, and rice cakes and a half cup of water!

This was after a nectarine massacre.
Did you know it is really hard to peel a nectarine?!

Last month we found a sweet portrait deal online for a 16x16 gallery canvas and 40% off any additional sheets of photos for only $16.  So we scheduled some first year photos for Vegas, since Little Man is... less than enthusiastic about photo shoots (plus he will get school photos in a few weeks).  On the other hand, Vegas is always serious and contemplative when in a new place, so it was still really tough to get some smiles and poses out of him.  But we persevered and got several cute shots of him that should be here just in time for his giant birthday bash!! I can't wait to show them off -I'm such a proud momma.

A photo of the website storing previews of photos.
I'm so tech savvy.
 

We had arranged for the end of the photo shoot to be a cake smash. Vegas was not at all amused. He was very grossed out by the idea of smashing his hands into cake, and just tried to run away the entire time.  I tried to "help" by placing his hands in the cake and swiping some frosting on his lip.  No dice - now he was just dirty and trying to run away. Oh well - we've got another chance for cake photos at his party.  Little Man was such a pro at his cake smash, I think I got spoiled.

He was seriously the cutest cake smasher I've ever seen.

And that about wraps up the last couple of weeks.  Vegas' eczema cleared up with the medicated cream they gave us.  I was diagnosed with TMJ six minutes after walking into the ENT's office.  Little Man has been healthy and has the best suntan out of all of us - he looks like a little Coppertone baby commercial.  Camp kept him outside and wore him out every day, and I think it was a great experience for him.

Time to get back to organized chaos...