Thursday, January 8, 2015

The Course of True Love

Now that the mess of Christmas is behind us (or still on the kitchen table *cough*Hubs*cough*), we are working hard to get the house and the kids on a normal schedule again. 
Christmas Morning!
Both boys were spoiled rotten for Christmas - even though Vegas was not having anything to do with opening presents. His first gift was a stuffed tiger chair, and the shock of unwrapping his gift and seeing the tiger staring back at him was too much for him. Any time after that when someone would bring him a gift, he went running!
Nope. NOPE. Don't wanna touch this.
By the time Christmas Day ended both boys were in full on meltdowns and ready for bed. Luckily my in-laws live super close so bed was a quick drive away. Never underestimate the peace that comes of a daily schedule. Change is bad, change is bad!

Christmas Night!
Ignore my terrible posture, I was slightly distracted by the screams.
Also, yes, Little Man had an outfit change.
No it wasn't planned.
(Oh also, I got a haircut!)
After Christmas and New Years and a million events and parties, Hubs had to go back to work and I went back to house-management. We all have clean clothes again and the kitchen is a lot less crunchy when you walk. And my ear is constantly warm from being on the phone 24/7 with all of these doctors/therapists/VIPs.

Little Man's therapy schedule was the first big item on the agenda. He's still doing once a week home therapy, a full day at school, and every other week he has behavioral therapy. He finally bounced back from the plague that hit the house around Thanksgiving, and we're hoping that will help get him back on track with his other long term goals too. During the school day he is wearing cotton splints on his hands for certain activities to help him remember to keep his hands by his side (instead of on his ears). This is (understandably) very annoying for him and makes him very angry, so it's definitely not something we want to have to have him do forever.  He also discovered over vacation that because he'd been so good about not taking off his diaper at night, we'd stopped taping his waist and ankles. He has lost all the progress he made on the diaper department, and we are back to nightly duct tape. Unfortunately, he's taken to getting into it during the day too - hence the Christmas outfit change - and even been doing it at school. Ugh. 
Everyone is looking slightly to the left because that's where the Target photographer held the iPhone.
Can't win em all.
Merry Christmas.

Our other big news is that Vegas met with Infants and Toddlers over winter break and is now going to have his very own IFSP. We contacted them because he still has no words and doesn't really babble much. He went to his big test yesterday at Little Man's school, and passed... or I guess failed?... with flying colors. Speech therapy it is! He is at 7 months expressive language and 12 months receptive language, which means he has the 25% delay in development that qualifies him for therapy from the county. Other than his speech delay, he is on track everywhere else - I definitely have my hands full with this smart and curious little guy. But I have no problems with him being in speech therapy, and I'm not worried or freaking out about it (much). I know having a non-verbal sibling and being home with only me most of the time probably contributes to his delay, and so I think this will be very helpful. I'm not looking forward to squeezing in another therapist to the schedule, but we'll make it work. We've been down the Infants and Toddlers road before, and I have a lot of faith in the program and in early intervention. 
Vegas' First Day at Hogwarts.
Er... I mean preschool testing!

So don't take it personally if I seem frazzled in the next few months. It's because I am. Two kids in therapy, two shows at our local community theater, running a household, and possibly taking up a new 'job'. It's all going to be a caffeine-fueled blur. If you are one of those people that likes to help - I graciously accept k-cups and Mountain Dew.

Tuesday, December 9, 2014

No Easy Fixes

There are no easy fixes when it comes to Little Man. Going in to our appointment last Friday, I was pretty sure there would be tears - from me as well as Little Man. I woke up that morning and my bug had finally decided to hit me HARD. In the face. I walked around like a zombie while Hubs got everyone dressed and out the door, and managed to make me some breakfast for the road. I was miserable all day so I knew a stress-related breakdown at the appointment was inevitable. I am the kind of person who releases any emotion with tears, so I knew to stock the van with a box of soft and lotion-y tissues for the day.

Little Man started the appointment by having a serious tantrum that lasted a solid twenty minutes or so. Some head slapping and dramatic tears were eventually alleviated with three bags of fruit snacks and some therapy work. But the news was pretty much what I expected - we are on one wait list to see a psychiatrist for a med evaluation, and a second wait list for a two week long intensive outpatient program for behavioral modification. We are also restarting the every-other-week sessions with his psychologist. Even knowing it was coming, the serious look on his therapist's face brought me to tears. This therapist has seen Little Man since he was three years old, so he's seen Little Man at his best and at his lowest. This look said to me that this is the lowest we've been in those three years. And even typing that makes me tear up and my heart break.

I set aside all thoughts of therapy this weekend to just enjoy time with friends and Hubs. Even though we both were exhausted and still a little sick, I think we needed it. We spent Saturday night at a friend's Christmas party and Sunday night I went to brunch with more friends. Then yesterday I auditioned for another community theater production. Being busy is the only thing that keeps me sane. Sometimes I feel like the more I have on my plate, the more focused and happy I am. I mean, talk to me about that again in a few months, but yes - busy is good!

Speaking of busy, we have only a few days until I leave with two wiggly little boys and Hubs for a 16 hour road trip to Wisconsin. To save a crapton (yes, a unit of measurement) of money we decided on renting the smaller car versus the SUV. Cross your fingers and hearts for us, I'm hoping we make it in one piece. We are literally driving up, spending two days with family, and then driving back. We are insane.
Add caption
And because he didn't get mentioned much, here is a photo of Vegas being adorable. Also a reminder that I love this little squish, because seriously this grumpy mood he's been in for two days is no fun at all.

Wednesday, December 3, 2014

Life is Hitting Us Hard

As usual, the holidays came and we all caught some sort of horrible bug.  We've been out of commission for about a week now with various levels of sick, although Little Man has been miserable much longer than the rest of us. About a month now. We even ended up taking him to Urgent Care, because his cough started to get a horrible whooping sound for a few days. He was given steroids, cough syrup, and a diagnosis of croup. Yikes!

Luckily they said it wasn't very contagious, unless you shared food or drink immediately after him.

Two days later, Vegas was a snotty, sick little mess.

Oh little boys...


Because Little Man is sick and miserable, his behavior has been really out of whack lately too. His normal stimming and head-hitting has escalated to full blown punches to the left side of his head when he's angry. He leaves big red marks all down the side of his face, and screams bloody murder while he does it. I'm sure it hurts, which is a problem, but it is also really scary to watch. When he does the hitting in public I have to brace myself for not only his actions, but my own reaction as I sense people watching me to see what happens next. I never let the people-watchers dictate my own actions - Little Man is my child and I know when he needs to be redirected and pushed through an activity and when it's time to cut our losses and bail. But it stings to feel those eyes on you and your child, for sure.

I know there will be a time when Little Man is too big to pick up and hold, and too strong for me. I can feel it coming every time I lift him into his chair at dinnertime. So I worry all the time that this hitting phase will be permanent and that there will be a time where he will cause serious harm to himself or others, and that I won't be able to fix this. And of course right now it's too early to tell what will happen in a year, or five years, or ten. But I still worry. Because that's what mommas do best. Love and worry.

Right now, the hitting is only a problem when he is mad, and he only hits himself. So we're talking with his behavioral psychologist and trying to decide how best to handle things. I have a feeling that our psych trips will increase after we see him again this week and let him know our progress. Which is okay. We are okay.  And Little Man is okay.

Things had just been really smooth for awhile there, and so this feels like a huge setback. Behaviorally Little Man has developed leaps and bounds from where he was even just last year, but this just... its rough. Every once in awhile I just feel so overwhelmed with this one.

My Little Man being a lovebug at the doctor's office.
But this is also my Little Man. This cuddly little love-bug of a kid, who lately has been crawling into our laps at night when he gets tired, just to be held for awhile. The kid who never once hits his brother or is mean to him, despite how much Vegas is in his face all day long. The kid who loves to run his hands over beard stubble while he looks lovingly into your eyes.  This crazy, adorable little guy.

I love this little guy, and today I want to just look at this picture and remember how much he melts my heart even when it's been a long, hard, month.

Thursday, October 16, 2014

Back To Work

The title is slightly misleading I suppose. I'm not back to work in the traditional sense, but I am back to my workout routine!

If you have run into me recently, you probably have heard about how Hubs and I are in the early stages of planning for Baby #3. As early as July we had discussed when would be the ideal time to try again, and I'd pretty much put the lid on it until I could decide how I felt about things. When the topic came up again (and honestly, I bring it up much more than he does), I decided to set a goal and stick to it. I needed to lose the rest of my "baby weight" and feel like I was happy with my body again before we started trying.

Exercising does not come easy for me. I absolutely hate every minute of it. Some people love the endorphins or whatever, I can't stand being achy, sweaty, and straight up bored. The only way I've ever stuck with an exercise program is if it is something that doesn't feel like exercise, or if I have a clear and defined goal in mind. Case in point - I lost all my baby weight from Little Man in the months leading up to my wedding. I'd lost five or six pounds doing Wii Fit for awhile, and not working at a restaurant had helped. But nothing jump started me faster than realizing I was about to be front and center in a white dress with a corset that I bought a size too small.

So I am back again after lots of starting and stopping, and I'm working out harder than I have in a very long time. I'm taking just a half hour every day during Vegas' nap to kick some ass on the treadclimber. And the benefits of working out have started to pay off... not only have I lost seven pounds, I have gotten my energy levels back up during the day! I hadn't been getting as much done around the house, and suddenly my closets are cleaner, my kitchen sparkling (okay the floors are still kind of sticky but somehow they won't magically repel kid food!), and I'm preparing healthier and better meals.

I'm no fool. It is going to be a struggle to keep wanting to exercise daily as the weather gets colder and and I run out of decent stations on Pandora. But our anniversary is in a month, and that is when I will weigh in on my weigh-ins (hahahahahah I'm so punny). I want to love my body again, and be as healthy as I can be before I start the next chapter in our story.

Wednesday, October 15, 2014

Family Weekend

This past weekend we won a free trip to Williamsburg from a timeshare company and headed out there for a great couple of days with the boys. Since we are very wary of flying with Little Man, we're always excited when we can take him places within driving distance. Although considering we drove to Wisconsin last winter, driving distance is actually a pretty loose term.

The stipulation of winning a "free" stay at the condo meant we had to listen to a timeshare lecture, which ate a good chunk of one of our days in Williamsburg. Despite that though, we managed to go out to dinner as a family, spend a full day walking the streets of colonial Williamsburg, visit the outlets, and even take advantage of the giant jacuzzi tub we had in the condo! Well... Hubs and the boys did. I sat on the sidelines and laughed at boy's swimtime.

Our major worry heading in to the weekend was what to do with Little Man at night. At home we have our routines and our safety measures in place for him, but hotels are a whole different ballgame. Luckily Hubs' parents had come up with a fairly ingenious solution for when they watched Little Man while we were in Las Vegas, and so we decided to try it on a larger scale at the condo since it was a 2-bedroom unit.
Bed Jail!
The baby gate/playyard went around the entire bed, and we kept it snug using the end tables on either side of the bed. Surprisingly enough Little Man didn't try to get out of bed or even move the end tables to release the gate, which weren't expecting at all! So he stayed in the 2nd bedroom all night and kept to his usual schedule. Hurray and score one for us!

Vegas was another story. He was not pleased with his sleep option - a pack n play in the living room. The first night he cried for several hours while we tried everything we knew how to get him to relax and sleep, and even after finally getting him down he woke up once or twice during the night. That did mean that the next night he was so exhausted it only took a half-hour to get him to bed, but man were we exhausted after night one! We were shocked it was Vegas and not Little Man who kept us up all night, but kids are always surprising little beasts so go figure!

All in all it was a really fun weekend away, despite a little rain and Little Man's refusal to pose for photo ops.
Cold and rain didn't phase him!

Not a fan of the forced photo. Sigh.
The day after we got back we decided the weather was perfect pumpkin patch/apple buying weather, so we headed to a local farm to grab a wagon full of autumn.
Not exaggerating, a wagon full.

The boys probably had more fun here than Williamsburg because we let them explore at their own pace - although Vegas seemed unsure of what to do with all of his freedom...
Little Man was just pleased we let him wander around and clamp his hands over his ears as much as he wanted. It's the little things in life.
Dance like nobody is watching
And while Hubs got in a cute photo or two, I got shafted again with photo ops. Oh well, I'll have beautiful memories, right?


After the pumpkin patch we headed over to a local winery with my in-laws and then had them over for chili dinner. I don't think we could have crammed any more activities into the weekend!!

By Monday morning we were exhausted and had to use the conveniently placed national holiday to recuperate from all the vacationing. We binge-watched Survivor and caught up on the DVR while eating leftover chili. 

It was really one of the best family weekends we've had yet. Sometimes I can't believe how lucky I am to have these boys and marvel at how much my life has changed in just a few years. We are all so, so lucky.

Tuesday, October 14, 2014

"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.

Tuesday, September 30, 2014

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.