*Serious Post*

I'll keep this as short and sweet as I can. I'll write this post in timeline form.

6/24- Robbie gets super sick. Fevers up to 103.8. Can't give NSAIDS to drop fever because of kidneys. The next 4 days are hellish and he barely eats (and can't even tolerate being tube fed).

6/29- Call my mom and tell her that I feel like if he doesn't start eating soon things are going to get so much worse. Feeling like we are at a "crossroad." His hair isn't growing, he hasn't grown in length/weight etc.

6/30- Robbie won't eat bottle but begins to sign the word "eat" in sign language. He tries a few bites of prunes. Call my dad and he mentions he felt like the timing was right and things had the potential to improve. Dreading the weight check in the morning knowing he has probably lost a significant amount of weight. Talk to bishop at church, he recommends a ward/family fast/prayer. Feeling a little better.  

7/1- Weight check. Praying in car that I don't have a total meltdown at the office when I see he's lost weight. Robbie gains 7 ounces. What?

7/3- I put out a note on Facebook to ask that people would join in on the fast/prayer. People responded immediately. People that I talk to frequently, people that I haven't talked to in years. I'm overwhelmed by the support.

7/4- Robbie tries to eat a few bites of prunes

7/7- Sunday. Robbie is well enough to go to church. Everyone mentions him in their prayers. The Bishop makes a comment that often "miracles come about in the most natural of ways." Feeling hopeful. Go to bed feeling like things are about to get better.

7/10- Robbie eats a whole container of pears

7/12- Robbie eats a whole container of pears

7/13- Robbie eats a whole container of pears

I know that we have a long way to go but I can't express in words how amazing it is to see him eat. I won't even try. I am just so grateful that so many people came together on the same day to ask for a miracle for Robbie. Up until last week he would begrudgingly drink his formula (in very small amounts). This week he is not only eating real food, but is also drinking flavored Pediasure (after weeks of slowly trying to introduce it). A friend saw him eating today and said, "Um...he's eating?"

He is eating. HE. IS. EATING!!!!!!!!!!!!!!!!!!!!

Obs

Now that I've quit my job I have literally nothing interesting to say. All I have are little observations I make during my day that I share with Robbie who, love him, but has some major struggs as far as banter goes.

Observation #1-A man passed me at the mall wearing Abercrombie cologne (don't pretend like you don't know what it smells like when the air starts to look like a mirage as you walk by the storefront and you are accosted by the pheromones of sweaty teens) and I felt sad.There's an expiration date on when it is no longer acceptable to wear said cologne and that's a soft-18, strong-19.

Observation #2-Sometimes I can't think of how to spell a word so I type it into The Google and hope that my phonetic spelling gets a hit. Sometimes I have to scroll down a whole page until I see what I'm looking for. At that point, I become so ashamed I can no longer use that word, and opt for a lesser synonym.

Observation #3-Growing up my mom helped me practice smiling in the mirror for school pictures. To this day as soon as I sense a camera is near, my face automatically turns, tilts, and smiles* (but not too much lest it look forced).

Observation #4-I can't watch movies more than once with the following exceptions: Lord of the Rings, Harry Potter, and Star Wars. Those I will watch at least once a year, for the rest of my days.

Observation #5-I learned how to drive in my dad's work van that beeped when it backed up. I used to think it was really embarassing, but now I can't wait for Rob to dabble in the construction game around the time Robbie turns 16.

Now that I've shared these you can all secretly be disappointed that none of them include a ridiculous medical emergency, or a light-hearted spin on someone else's hardship.

*24 years of diligent practice

Happy Easter!

Robbie had his endoscopy this week. It went really well (except that they gave him a girly gown which he was not happy about) and now we're just waiting on the biopsy results.

We started him on a high calorie supplement powder last week and at his weigh in this week he had gained 10 ounces. His doctor (who has seen him once a week for his entire life) calls him Bob and this week added "The Piglet" to his name which Robbie seemed to like quite a bit.

We started him on an appetite stimulant this morning. In my head I imagine him eating bowls of gravy and porkchops from here on out. This morning we just started with applesauce and it went surprisingly well.

As many of you know our insurance company had denied us coverage of Robbie's delivery, surgery, and NICU stay in the beginning of his life. It's a long story but basically they said he could have been taken care of at an HCA hospital (who I work for) even though they don't have a Children's hospital. After three appeals they finally approved us. This is the difference between owing $40,000 or $0. We now owe $0. Boom.

To celebrate I put Easter Eggs all over the patio and Robbie would gather them and bring them back like the faithful little puppy he is. He then danced to all of the birds chirping with his signature head bob.

I also spent about an hour yesterday teaching him to high-five. It was worth it.

Fake Blogger

I don't usually have anything valuable to blog about. That is, you won't get any legit advice about anything that will impact your life in any way. I have tons of fake advice to dole out concerning when and what to do in a hospital setting, but let's be real, you're going to go to the ER for your congestion x12 weeks regardless of what I say. I can also tell you all about what I think is and is not appropriate behavior in public forums, but I'm obviously no authority on these things. I once participated in a dance-off with a sketchy character at a club that ended with losing my belt (not in a weird way, I didn't rip it off or anything. I think I was just trying out the precariously-placed-belt-that-doesn't-actually-go-through-belt-loops thing, and that in and of itself shows I've had my share of poor judgement calls). It wasn't okay.

Anyway, I don't know if you've noticed, but an extraordinarily large amount of people have taken to "advice blogging." You know all those people that love to give unsolicited advice (pot, kettle, black...I think you can put it together)? Now they have this boundless forum to do exactly that (comments=disabled, because who wants to be corrected on their own blog? Rude)!

"Where should I travel next? I think that one chick wrote a blog/posted a bunch of selfies of herself in Europe...maybe she knows. What should I do with my kid this evening? That chick has a sepia cover photo of her family at the park, I need to hit up that blog. I'm fat, but that dude's ripped and he's listed all of his supplements on his blog (complete with a before and after photo that was obviously NOT photoshopped, wait...) Yahtzee!"

Since the only thing I am an expert on is glitter and high-top buns (stay tuned for an Easy-Updo-In-Five-Minutes blog post, coming soon!) I figured I'd jump on the bandwagon and give some super useful (but likely not) advice.

*If you're planning a trip, spend a freak-ton of money first, then you can use all of your points from your credit card to pay for it.

*When microwaving cheese, add 1 cup of water to make the cheese softer. What?

*To get the butt you've always wanted, forget the gym, and hit up some Cadbury Eggs found at your local convenience store (while supplies last). Take 3/day and maybe add some of the mini Cadbury eggs with the crispy shell as a supplement (eat at least two small packages, or if they have the 30oz on sale, definitely go for that).

*Recent polls show abbreviating most of your vocab does not make you sound less intelligent (but seriously, I can't stop).

*Olive Garden is not actually Italian food, maybe not even a real restaurant. Fear all copy-cat recipes. Just because their breadsticks taste like magic, doesn't make it right.

*Weight Watchers is the best dieting plan because basically you can just starve and then eat a cheeseburger the size of Wreck It Ralph's fists (btw, great flick, 4 stars) with absolute reckless abandon (preferably in the comfort of your own home).

*The best hotels to travel with small pets are non-existent, because your pet doesn't need a vacay. Stop it.

*If you're looking for some stimulating reading material just type in dystopian youth novels into Google and read every single one. Do not neglect your child while doing so and think that throwing him/her toys from the couch counts as playing together. If you're sitting on the ground with them, that's a different story.

*If you're looking for new activities to do with your family, try getting back to the basics. Naps for everyone.

*Finally, when writing a blog post about useful tips, always link to a legit website like Wikipedia, Google, or better yet, Ask Jeeves (but for reals Jeeves, it's been a long time since you've been accurate about anything, am I right? Fist bump).

Piggy

When I was young I had my share of some unfortunate medical issues. For about a year of my childhood I was in and out of surgery, frequenting physical therapy, taking medication that is literally no longer prescribed to children (Valium; turns out it has the opposite effect on kids. Thanks, mom and dad for staying up all night with me while I ran up and down stairs), sitting out on recess and gym class, watching out the window while my siblings jumped on the trampoline (dramatic, I know), and crying because I had a half-body cast on two separate occasions (4th graders are mean).

My big brother, Dru bought me a stuffed animal pig a few Christmas' before. I named him Piggy, as I was always the clever one. Piggy, like many stuffed animals for children, became my crutch. I loved him so much. When the year of my hellish medical history arrived, Piggy was the most important thing to me. He  loved all of the same things I did, he was always awake when I was, and even loved watching Star Wars as much AND as frequently as I did. Some nights I would cry and cry because everything hurt so bad and Piggy would cry too.

Looking back, I see how kids become so attached to an inanimate object. Piggy was a security and safety that I just couldn't duplicate. Tonight I was holding Robbie while he fell asleep. He has been struggling most of his life and has had a few weeks recently where it just feels like things are never getting better. He will have a procedure done this upcoming week and be kept in the hospital again. I thought about the surgeries that I had to have when I was young. My mom always brought Piggy to the hospital, and in my 9-year-old brain it felt like since he was there, I'd be okay. I put Robbie down in his crib and rummaged around in his box of toys and animals. At the bottom was Piggy, whom I brought all the way to Texas when I moved, in the hopes that if I had a baby, he would love him too. I put the old, worn animal in the crib to watch over my sweet baby and realized why he was so important to me. Piggy did everything with me. Ate breakfast, watched TV, played, told stories, and every night when I knelt down to pray, Piggy prayed with me. I associate him with innocence, life and surviving painful, hard times. When I think about it, I know that Robbie will have hard times to come, but he will get through them and will come out the other side having had opportunities to grow and be strengthened that were very much individualized for him. Just like we all do. I also know that I won't always be the one who can give him what he needs but he will find comfort in the joys that life has to offer. Maybe even in something as simple as a stuffed animal pig.

??

When someone misspells a word in a status, or especially in a super-aggressive rant, I desperately comb through the comments to see if anyone mentions it. But they never do, because that would be rude. But, can it not be rude? Can we make it, not rude? Isn't it better? If I pronounced something horribly, horribly wrong, isn't it best to tell me? Just put me out of my misery? Doesn't that fall under some sort of ethical responsibility? And can I not be a jerk because of the unwritten rule that if you post something publicly, it's open to scrutiny? That's a thing, right?

Chief Complaint: It's hard to use my words

Me: What brings you to the Emergency Room today?
Patient: Oh you know...
Me: ...is that a question? Because I asked you first...
Patient: Well you know, I just be like not like feelin right, you know. Like I be hot and cold and hot and cold and like my temperature be like all up and down and up and down n shi*.
Me: Mmmk
Patient: You know like I dunno if I be dehydrated or like you know if I be like stressed, you know. Like I be doin things and it aint right. You know like I'm stressed a lot and be like tired n shi*.
Me: K, so you have a fever and your thirsty, and shi*?
Patient: Yeah
Me: ...

What It's Come To

Rob agreed to start taking a daily vitamin if I bought them in gummy form. Realizing it's a new day and getting to take my gummy vitamin has come pretty close to my favorite part of the day. Of course, behind the rewarding stuff and stuff of being a stay-at-home-mom, etc.

My typical route home includes making a left-hand turn off of a busy street. There is a turning lane. We share this turning lane with people coming from the opposite direction. The people coming the other way almost ALWAYS hop into the turning lane like a half a mile away, leaving those of us who are trying to utilize the turning lane correctly, to risk our lives trying to wedge our way into the lane. If my street is literally RIGHT there, I get to be the one in the turning lane. ME. Not you. You have another 5 minutes before your turn. I will kill a man.

I was at the grocery store and my cashier looked just like an Avatar from the game, Just Dance. I told him so. After a few misguided comments I realized it sounded like I was making a serious play at him. So after my face was red enough that I could feel it in my ears, I basically sprinted towards the door. The good thing is, Robbie was with me, just to add a little extra weird.

I went to Whole Foods to pick up sushi for Valentine's day. You don't have to cook it...see where I'm going with this? Anyway, after searching for the sushi stand I asked an employee if they even carried Sushi. I was met with the judging eyes of a disgusted-hipster-passerby who just happened to overhear my question and after looking up from his book, while pushing his cart (seriously), he pointed me in the right direction (without meeting my eyes). Whatever, Whole Foods. It's not like I wasn't wearing Terra Cotta colored ankle skinnies and a chambray button up, I totally was. What more do you want from me? How can I make you feel like I belong? Is it because I forget my reusable grocery bag? Sike, I don't even own one, jokes on you!

I bought a Papyrus card for Rob. They always include a little gold envelope seal with every card. There was no gold seal. What kind of cheap piece of... Banned.

I'm anti Anti-Valentine's day people. You guys suck. "I just hate that I have to be told what day to love my loved ones." Whatever. Shut up. Just buy some flowers, eat some chocolate and don't be the worst." Valentine's day is a manufactured blah blah blah." You hate love, and you hate America. 

I've never seen Rob more excited to meet/talk to anyone than he was to meet a blogger from Grantland.com this past weekend. He saw him on the street and literally hung his head out the window and called out his name. We met him later that night at a restaurant. As you see, it was me that ended up taking a picture with him.

My most recent theory...

Facts:
-Robbie puked from 2 months old-a few weeks ago, 20+ times a day (not spit-up, vomit, bad).
-He's been in the 14 pound range for 6 weeks now and has stayed the same weight for 3 weeks.
-I've tried medication, bottles, formula, feeding times, flavoring, EVERYTHING
-When anything food related touches his mouth he freaks out
-He hates drinking formula but he loves drinking water, and ice. Take away his ice, and he loses his mind
-He wakes up after 12 hours and could take or leave his bottle. He has no interest and no appetite.
-Despite all of this he is extraordinarily pleasant
Theory-
My mom is visiting and she started researching appetite enhancers (specfically the medication, Megace, which you give to anorexic patients, cancer patients or any other patient who is not inclined to eat). Upon researching this we have stumbled upon Zinc deficiency and other vitamin and mineral deficiencies causing appetite suppression. Zinc, specifically, can cause appetite suppression and cause things to taste bitter. Iron deficiencies can cause a condition called PICA where the patient will crave non-nutritive things and often have perpetual craving to eat ice. Vitamin D deficiencies cause malabsorption and poor growth. Patients with renal issues are typically deficient in these areas. I also had a friend who spoke with a pediatrician who explained how common these issues are and how he was surprised that none of these ideas had been explored previously.
Plan-
We've started with blood work to test for these deficiencies and hope that what we will find is that it is in fact the cause for his issues. The solution is simple, and would include supplementing these vitamins and minerals daily.
To be frank, it seems pretty lame that nobody has come up with this before (any of his 3 doctors) when it seems to be such a common side effect with children in his condition. Regardless, we are hoping for the best and that we have hit on something promising. Fingers crossed.


Also, on his free time he enjoys chopping and gathering firewood.