January 20, 2014

Do you:

  • Live in constant fear that your 19 month old is becoming hyperphagic?
  • Count every poop because gastroparesis is a very real condition that can lead to death?
  • Jam a needle full of growth hormone into your child’s leg every night?
  • Cry at the sight of a “typical” child eating, sleeping, walking, or functioning?

If so, your offspring might have Prader-Willi Syndrome!

Don’t get me wrong, not every day is like this, but a lot of them are. I want Kyler to get better, I want his missing chunk of chromosome to magically reappear, and I don’t want him to hurt. He’s quickly approaching 2, and with that are coming some big personality changes. I probably call my mom or message my sister about a thousand times a week in constant fear that his PWS is advancing.

“OH MY GOD. Kyler is crying when he’s hungry, do you think he’s becoming hyperphagic already?!”

“No, Megan. He’s just getting stronger and turning into a two-year-old.”

“Oh, ok. But he’s also whining and crying all of the time. Is he sick?! You know he doesn’t get fevers and I have no way of knowing!”

“No, Megan. He’s just getting independent and wants his way.”

“Crap! I can’t afford organic food, and I accidentally fed him too many carbs. This will surely kill him, right?!”

“No, Megan. Stop reading crazy people’s blogs.”

“Ok, thanks. I’ll talk to you tomorrow when the world is ending again.”

I have to say, I don’t know what I would do without them.

PWS is a constant battle, in part, because of its rarity. Most of the “treatments” that exist (supplements, diet, etc.) are largely anecdotal since no one knows much about, or will fund the research to officially approve them as treatments. I think the worst part for us (and many other families of children with special needs) is that supplements are rarely covered by insurance. PWS management is a very expensive endeavor.

Kyler is now on five medications/supplements, not including the oxygen and other medical equipment we have in case of emergency. When we drive to Florida in a month, I have no idea how we’re going to haul all of this. I’ve said this before, but traveling in general is rough. Even if all of our supplies, food, medication, and equipment are completely intact (and not forgotten), Kyler is completely worn out for two full days after, which puts him at higher risk for getting sick.

Speaking of food, since he’s been eating more complex purees (and we have been increasingly short on time) we’ve relied on those organic baby food pouches. For a “typical” baby, these things are convenient and truly the bee’s knees. Unfortunately, they’re pretty full of bad carbs, and I’ve had some equally bad guilt about feeding them to Kyler. Despite going to school and having absolutely no spare time, I’ve committed myself to making all of his food again. How badly I WISH he was eating solid table food. So, three hours after roasting squash, mashing beans and lentils, sautéing onions with ground beef and turkey, and sweating… a lot, I have ten days of Kyler-food prepped and ready. Did I mention that NONE of it is organic (gasp!) Yeah, don’t be too quick to call me supermom, apparently that lower grade stuff is poison. Along with all of this comes the realization that anything having to do with food is never going to be easy for our family.

Can I talk a little bit about that? Well, I’m going to because it’s important. The pain of hyperphagia is not funny nor is it something that can EVER be taken lightly. I’m going to quote a segment out of my One Small Step speech here, because it truly is the only way I know how to describe what Kyler will likely experience:

“Imagine having to fast for 24 hours before a blood test. You’re starving, and can’t wait to have that first meal to make the pain and discomfort go away, but it never does. You eat a big cheeseburger, fries, maybe even a milkshake. You want to take a nap and relax, but your stomach still hurts- there’s a gnawing in your brain that tells you to eat more. You want to scream and cry because it hurts and you want it to stop. That will be Kyler’s life.”

I tear up just typing that.

Kyler is, and always will be on a special diet, and will never be allowed many of the foods you and I are used to. We hope, and hope, and HOPE that by the time Kyler reaches the hyperphagia stage of PWS, there will be some kind of intervention for this awful condition. Unfortunately, even if there is some type of “fix”, he also (likely) has slow gastric motility (food does not pass as quickly through his digestive system). He also cannot vomit. Both of these issues are recipes for disaster, or even death if he is allowed to eat too much, or if the warning signs of GI issues are not addressed immediately. Lastly, the low muscle-tone and potential severe behavior and emotional issues are, well, scary. Let’s face it, Prader-Willi Syndrome is just downright scary.

But you know what? In spite of all of this, Kyler is amazing. I know it sounds like I’m constantly worried, upset, and bitter, and maybe I am. Maybe we all are. Kyler is loving, strong, intelligent, and downright cute, and it seems like a cruel joke that he should have to go through much. Despite what many parents say, I am a logical being, and I don’t feel “blessed” that PWS came into our lives. I do, however, think that a genetic mutation is a really unfortunate thing that could have happened to any of us, and the only way we can survive is to make the best out of it. I love Kyler unconditionally. He has taught me more than I could have ever dreamed to know, I will always fight for him. After all that we have been through, and all that we have yet to endure, I am ever grateful to have my little superhero: the most resilient and awesome kid I know.


May 05, 2014

Caution: Put your party hats on- there’s a pity-party ahead!

I think this is going to be one of those “Why, PWS? WHYYYY?!?!?!” weeks.

Kyler’s temperature regulation problems seem to be getting worse in the heat, so we decided to get his hair cut for the first time yesterday. I wish I felt the typical warm and fuzzy emotions regarding this sacred event, but some milestones just don’t mean as much as I thought they would (I mean, how can you beat your nine month old drinking his whole bottle for the first time?) I know this sounds cynical, but my life is so busy that everything becomes more about keeping Kyler safe and comfortable, than stopping to smell the roses (which I need to do more often). What should have been, “Let me take his picture ::sniff sniff:: my baby’s growing up too fast!” was actually, “Make with the chop-chop, lady. My kid’s face is turning red and he’s sweating like a you-know-what in church.”

I know I’m a bit cynical, and I know that a lot of people don’t like that about me. Truth is, my dry sense of humor is a huge part of what gets me through the day. When you’re trying to clean poop off of your baby’s abdominal stitches, and the roasted carrots and lentils are burning in the oven (because he eats way better than you do), sometimes all you can really do is laugh and say, “Looks like we’re in a real shitty situation, kid.”

So Kyler’s just staring at me, and the poor hairdresser’s hands are shaking. She soon realized that he wasn’t going to be screaming his head off, and I braced myself for the dreaded words,

“He’s the happiest baby I’ve ever seen! You are SO lucky.”

Dagger to my heart. I heard at least three people comment on how they had “never seen a first haircut go that smoothly!” Honestly, this is one of the most difficult things I hear on a daily basis. I love Kyler. I love his personality, and I love that he appears “easy,” but being an overly happy baby is one of the symptoms of PWS.

The PWS community tends to get a bit defensive on the issue, and I’m not entirely sure why, because it’s a pretty well-known fact. I try to keep my mouth shut because a lot of moms insist that, “It’s not because of the PWS,” and “Don’t label my baby!” and I try not to. I make every effort not to lump Kyler into one big Prader-Willi Syndrome category, but this one kills me. It’s not just coincidence. He is largely the way he is because of Prader-Willi Syndrome. This will never take away the fact that he is a unique and awesome kid, but knowledge is power, and being one step-ahead will always be the name of the game. Kyler will probably never develop a sense of stranger danger, because his brain just isn’t wired that way. Nick and I will always have to be one step ahead. That winning personality and those puppy-dog eyes could potentially endanger his life.

I told Nick that I wish I could bring a copy of his chromosome analysis every time we leave the house. “You think he’s a happy baby, huh?! Well, here’s all 100+ missing genes! Not so happy now, is he buddy?!” Of course, Nick just rolls his eyes, pats my leg, and tells me that I’m being just a little crazy. It’s a good thing we balance each other out so well. I can lay the smack-down on the incompetent doctors, while he keeps the energy and feng shui of the room nice and zen.

On a very rare occasion, I will completely forget that Kyler even has a disorder. Like yesterday- it was sunny, Mother’s Day, and I was feeling pretty good. Then those innocent jerkwads started ranting and raving about how happy Kyler is. It definitely makes me think about all of the seemingly innocuous, but incredibly hurtful things that I have probably said to other special needs parents.

Mother’s Day brought around a lot of mixed feelings for me anyways. As expected, everyone was posting pictures of their beautiful children and cute little infographics about how wonderful it is to be a mother. I wish I could just get over the wave of sadness I feel every time I see a kid doing something “normal.” Eating cake and cookies, going back for another plate of food, drinking from a sippy cup, standing up, crawling- Kyler can’t do any of these things, and some of them he never will.

I received a phone call today that he is ineligible for respite care. He has so many unique needs, and anyone who watches him has to be trained in-depth. I went through the interview process and was hopeful that this would come through for us. I am told that because he is so young he would only get about an hour a week, which would mean more paperwork and headaches than it’s worth. This would have helped us out so much, and I honestly am just reduced to tears. I’m planning on going back to school full-time in the Fall, and I’m scared shiftless that between the ER visits, doctor appointments, the hour-long phone calls, I won’t have time for everything.

I feel like I’m constantly fighting too many battles and I will never win the war. I wish I could toot-my-own-horn and say that I’m as much of a superhero as Kyler. I wish I could fight harder and do more for him all of the time. I think part of this journey is realizing and accepting that this will never change. Sometimes you just have to admit defeat, kick your heels up, and watch some crappy T.V.

Kyler will always be my superhero, and no matter what happens I will always be there to catch him when he falls; but some days, weeks, months, and I’m sure years, will just be like this- because dammit,

PWS just really sucks sometimes.


February 14, 2014

Disclaimer: I don’t know what the hell happened to the formatting of this post, but I can’t insert any spaces. Apologies!

Happy Valentine’s Day! Am I even allowed to say that? I honestly forgot what day it was, until  opened my Facebook, and read about 10 separate Valentine’s Day rants. There seem to be some very strong opinions on the subject.

Stance #1

Valentine’s Day represents everything that is wrong with our country! Screw Hallmark, screw flowers, and screw everything! ARGHHHHH!!!!

Stance #2

OMG I love love! Love, love, love! Candy and roses and flowers and sunshine!

Stance #3

Don’t you dare tell me I should love my boyfriend, girlfriend, significant other, puppy, etc. I show my love all the time, and I don’t need a “holiday” to tell me that!

Stance #4 (my opinion)

Who the hell cares? If I want to give my husband a card and gift on Valentine’s Day, Friday the 13th, or the 3rd anniversary of The Avenger’s release on DVD, I’m going to.

Seriously. It’s. Just. A. Day. I can appreciate those who don’t like the media fanfare, but it’s just something you have to learn to ignore. I’m not religious, but I don’t go around burning Christmas trees, or insulting anyone who wishes me a “Merry Christmas,” either.

I think we all need to sit down, take a deep breath, and remember; tomorrow we will all (hopefully) wake up, roll out of bed, and move on.

So, there’s that.

In other news, I have about 600 pictures on my phone, 598 of which, are featuring a sweet little blondie named Krinker.

No, that can’t be right.

A smart little baby named, Crostini!


Well, whoever he is, he’s pretty cute.

I’m sure I’m not alone with this problem. I think they’re going to need support groups for children of this generation. If my parents had taken that many pictures of me, I think I would have had some sort of overly critical, mega self-esteem crisis by the age of six.

While I was browsing my extensive “Gallery De Kye,” I noticed a pretty accurate time-line of Kyler’s progression, based on pictures alone. This sparked a fun little time waster I like to call,



From: “Check it out, I’ve got sweet potato on my face! Har har har.”


To: “In all seriousness guys, I have got to buckle down and chew on this envelope. Call me in 10 for a diaper change.”


From: “Guys, I really don’t think this is for me. Can I lay down now?”


To: “How about you put the toy in French mode, and give me a real challenge.


This one’s just a squirrel. He’s a portly little shift that keeps eating the Finch’s birdseed. So, if you see him, I’m not not telling you to take extreme measures…

and lastly,


From: “Tube-fed all day.”


To: “Badass, I can drink 7.5 oz. all by myself.”


Which results in: “I’m so milk-drunk, I can’t feel my face.”


Valentine’s Day, or not, I have all the love I could ever need ❤

February 4, 2014

Today, I’d like to take a moment to talk about something. Something…squishy.

Are you ready?

Are you sitting down?


…It’s boobs!

::cheers from everyone::

More specifically, I’d like to talk about breastfeeding!

::audible groans from males in the audience::

Even more specifically, breastfeeding propaganda.


Boys, you may want to take a knee on this one.

I know, this sounds ridiculous. Come on Megan, breastfeeding propaganda? This is Amurica! Land of the free! Home of a beautiful bounty of boobs, nipples, and the choice to do whatever the hell you want with them!

That’s what I always thought anyways.

Yesterday, I was sitting at one of Kyler’s many appointments, and already feeling a little queasy after seeing a couple of kids toddling around. I mean, come on. Throw me a bone, universe. Can’t I just see one other kid his age who’s still working on sitting up?!

But I digress.

Plastered on every wall of this office were at least 5 signs spouting pro-breastfeeding propaganda.

Part of PWS, as a baby, means having an incredibly weak suck (turns out feeding is kind of necessary to continue being alive). This meant that I never had the opportunity to breastfeed Kyler. Did I want to? Hell yeah, I did! Immediately after he was sent to the NICU, Kyler was fitted with an NG (nasogastric) tube, and I was instructed to pump, pump, pump!

Which, I did. For six whole months. Between all of the doctors, homecare, and other crap that I was going through, I still managed to squeeze out every last drop. And I didn’t even do that good of a job. I still had to supplement with formula. Hats off to those moms who manage to solely pump, without any supplementation that first year. Special needs kid, or not, I don’t even know how it’s humanly possible.

The thing about pumping, is that it’s not nearly as easy as the pamphlets would have you believe. I thought I would just put the magic little vacuum funnel on my tatas, kick my feet up, and relax.


It not only feels like your nipples are being ripped off of your body, but you don’t produce as many hormones as you do from breastfeeding, so it’s almost impossible to keep your supply up.

After six months of this nonsense, I had to call it. I’m happy that Kyler got at least some breast milk, but I still feel horribly guilty. Which, brings me back to my original point. Why do I feel guilty in the first place?

Sitting in that office yesterday, watching those cute little tots smack their faces on tables and chairs as they learned how to walk- I couldn’t help but browse the literature hanging from the walls.

“Breast is best!”

“Did you know that breastfeeding is cheaper and healthier?!”

and my favorite,

“Eat at mom’s.”

My underlying issue with these signs is pure and simple. They hurt my feelings (I know, I know, suck it up woman!). I get that they’re trying to pander to uneducated, or misinformed moms who, for whatever reason, think breastfeeding is “icky,” or “not cool,” but what about the rest of us?

Breast is best?

No shift. Most moms will do everything they can to do what’s “best” for their kids. I just couldn’t.

Cheaper and healthier?

Thank goodness so many loving people could help us out. The cost of a year of formula would bankrupt a wealthy family, let alone us. It was certainly not in our budget because, hey, I was going to have a normal, healthy baby! LOL.

Eat at mom’s.

This one just cracks me up. Something about those words together in a sentence totally grosses me the f out. It just sounds so…perverse.

So, my proposal (because I’m a problem solver), is to replace those stupid butthead signs, (can you tell I’m feeling mature today?) with the following,

“Your baby drinks formula, breast milk, or both? Jolly good, old chap! Keep being the best mom that you can be!”

“Hey, you just carried a 7 pound human around for 9 months, and don’t feel like pumping? No prob!”


“Damn, son. That sucks that your kid has a rare genetic mutation. Good thing he’s not going to die from lack of boob-sucking!”

Who’s with me?!


Ah, well. I’ll get ’em next time 🙂


Janurary 26, 2014

Happy New Year! Am I late? I’m a little late.

The last couple months have gone by so fast.

Between the sub-zero temperatures, and Nick gone most of the day, I have a lot of time alone with nothing but the Krinker (did I mention our poor child has another unintelligible nickname?) and my thoughts.

Anywho, in my many hours spent pondering the universe, or wondering if I should, in fact, eat that second brownie (the answer is yes), I’ve come to a few realizations.

Realization #1

I am a card-carrying, smack you in the face with truth, realist.

I’m convinced that this is part of why I’ve never made friends easily. People rarely bother to make the distinction between negativity and being a realist. I can be spontaneous, fun and a really caring person, but I’m also an excellent judge of character, and I don’t tolerate a lot of bullshift or blind optimism.

I see the world for what it is, and I understand that it’s not perfect. With the exception of winning the lottery, or some other random stroke of good luck, things don’t “just work themselves out,” you have to get up off of your butt and do something about them.

That being said, I am not always good at following my own advise. Most of the time it’s easier to sit around and wait for things to fix themselves. Maybe that’s why we had Kyler. My “real” outlook has definitely come into full force the past year.

After nearly eight months, I finally worked up the nerve to join the National Prader-Willi Association. I’ve done a lot of research on my own, but these people have pages upon pages of hard-core information. I guess I was avoiding making that phone call because lets face it, I basically admitted to a total stranger that my son has a life-threatening genetic mutation (damn you chromosome 15!).

My point is, after reading a multitude of information and personal experiences about PWS, I’ve come to the realization that I’m not going to let anyone try to talk me out of my feelings about the situation. Prader-Willi is a potentially life-threatening disability, and no positive attitude is going to change that, unless it’s accompanied by some real-life knowledge, and the ability to say, “No, Kyler, even one cookie is not ok.”

Many people have written my attitude off as “just being a negative-Nancy,” and to that I say, get in line, you’re not the first. I know that I am a genuinely good person, and if it wasn’t for my attitude, Kyler would not have the excellent medical care that he receives today. I do not and will not sugar coat anything unless it is necessary to protect my son. The reality is that Kyler could eat himself to death if I am not the ball-busting mother, and caregiver that I have to be. There have been many times in my life where I’ve tried to“fake it until you make it.” Pretending to be this happy-go-lucky, nothing bothers me type of gal. Truth is, I’m just not like that, and that is perfectly ok!

If I had one hope for those who look down on me for not being “optimistic,” it would be that they try to see my attitude as coming from a place of caring and concern, and not a place of anger or negativity. Also, try having a kid with PWS, it might change your outlook on life.

Sorry, that wasn’t supposed to sound overly judgmental and bitchy.


Moving on!

Realization #2

I like Nick.

What? I know what you’re thinking. Shouldn’t you have known that when you got married? Maybe not. I’ve always believed that loving someone is easy, liking them is hard. Liking someone means genuinely wanting to spend an exorbitant amount time with them (and enjoying it!). It means enjoying their personality, and soaking up every ounce of their annoying habits, awesome personality traits, and everything that falls between.

Most everyone has one, or several people in their life that they love, whether it’s by familial ties, old friendships, etc., but loving someone does not necessitate liking them. I really think that is the distinguishing factor behind partnerships that last, and those that don’t.

When we were married, Nick and I were in a much different place. We spent a lot of time together having fun, and not caring about much. Drunk on love, and ready to settle down, we both loved each other, but I don’t think we knew how to like each other most of the time. Probably because we didn’t have to. Kyler has shown me how to really and truly like and appreciate my husband. It’s really, really, easy to love, but it takes liking someone to spend an eternity with them. It is my greatest hope that Nick and I will always find the time to like each other.

As much as Kyler’s situation has torn us apart, it is also what has made me realize that Nick is the only person I could have survived this with. We finally seem to be at a point in our relationship, where we can start piecing together all of the bits and pieces that were broken as a result of being apart for six months with a sick baby. When you’re so focused on making sure that your baby is ok, it’s really easy to neglect everyone else in your life. I think Nick and I both fell into that trap. Kyler had to be our number one priority.

Having a sick baby means a lot more than just “being there” for you child. You lose any sense of self, and it’s really easy to forget that anything that exists outside of your own little hell. If Nick and I could have both been at home taking care of Kyler 24/7 things would have been easy. Wouldn’t it be nice if life worked like that?

Kyler was safe, but where were we? There were a few nights I sat up wondering if our marriage was going to last past the next day. We had money problems, grief over our baby, and were living apart for the first time in three years. Hell, we were still getting to know each other. I think a lot of things were said out of anger, sadness, and exhaustion. Some things I’m sorry for, others I’m not. I now realize that a relationship never stops growing. It takes A LOT of time to truly build something solid. I think having Kyler sent this process into warp speed.

There are few things in life that I have true convictions about. I firmly believe that if a partnership can survive having an incredibly sick child, everything else can be worked out. This situation was either going to make us, or break us. I’ve finally realized that through all of the hell we’ve gone through, all of the tears, arguments, frustration, and defeat,

I like Nick.

At the end of the day, him and Kyler are the only two people I unconditionally want to be with. I don’t associate with any particular religion (blame the realist in me for that), but I’d like to think that everything happens for a reason. When we first met, said our vows, or got pregnant, we certainly did not plan for, or intend for any of this happen, but I absolutely believe that Kyler, Nick and I were brought together for a reason.

IMAG1116 (2)

December 5, 2013

I am the first person to admit that I carry a teensy bit of extra anxiety in my daily life. Well, maybe, “teensy bit” is a slight under exaggeration.

Let me start over.

I am the first person to admit that I carry relatively the same amount of anxiety as that freshly murdered squirrel in my backyard, moments before my parent’s dog sunk his teeth into its furry little behind.

Last night, as I was cuddling a freshly bathed and delicious smelling Kyler, I stared longingly into his baby blues and whispered, “Awww, look Nick, he’s just like a little human!”


“Megan, he is a little human.”

I think the responsibility of parenthood, coupled with the realization that your offspring is, in fact, a little human, and not a puppy, would make anyone a little neurotic.

This brings me to a segment, I like to call, “Why having a baby with PWS sometimes drives me totally and completely nuts.

“My Baby Doesn’t Cry”

I know how it sounds. A baby that doesn’t cry, bother you, or whine about anything? Sign me up!

Not so much.

When your baby can’t let you know that something wrong, it is one of the most nerve-wracking experiences ever.

I find myself checking Kyler over, at least twice as much as I should. He doesn’t cry when he’s hungry, needs to be changed, is too hot, too cold, or just plain uncomfortable. Totally and completely helpless. It reminds me of a 7th grade health class assignment, where I had to take a fake baby home with me. The goal was to teach innocent little pre-teens about how much having a baby sucks. Well, let me tell you my friends, that stupid hunk of plastic was not realistic at all. Every time it cried, I had to shove a different shaped key into its back, until it stopped. That’s all well and good, until you have a baby that doesn’t cry. I’m just constantly opening diapers, pumping Kyler full of food, and smearing Aquaphor all over his face, until I’m pretty sure he’s “ok.” Not to mention the look I inevitably get, which, I can only assume translates to, “What in god’s name are you doing to me this time?”

His home care nurse has encouraged me to “wean” myself from his pulse-ox machine, so I don’t lose my parental instincts, and become too reliant on it. Hah! That’s a good one. God forbid I don’t have that accursed little sensor attached to his foot 24/7. Even if I’m only in the kitchen for five minutes, I suffer a mini-panic attack on my way back. With every step up the stairs, my brain runs through the basics of CPR.

ABC… No, wait! It’s CAB! Compressions! Airway! Breathing! Dammit, Megan! Get your shift together!

By the time I’m to the top, I’m basically ready to dial 911.

The universe just wants to keep me on my toes.

Part of PWS involves having an incredibly high tolerance to pain, which, sounds nice, but can be a real problem. I’m thinking that this, in addition to the low muscle tone, might be part of the reason Kyler doesn’t cry. Broken bones can go unrecognized for days, cuts and burns can easily get infected, and hitting more close to home, an extremely overfilled stomach can, in extreme circumstances, fatally rupture.

Not that I think about this all of the time, or anything…

Well, that concludes today’s segment of, “Why having a baby with PWS sometimes drives me totally and completely nuts.” It can only get better from here, right?

On a lighter note, we decorated the tree this weekend, and Kyler loves the lights. I thought I was easily distracted by shiny objects, but he makes me look like captain attention span. I guess he’s off the hook since he’s a baby and all. J

We have several doctor appointments within the next week, and Kyler has to get a million bazillion shots, in addition to the ones I already have to give him. Poor kid. Which, relating back to my earlier complaint, the stupid shots he has to get to protect him from RSV (horrific black lung death virus, or something) are the only things that make him cry. Talk about heart breaking. Hopefully he doesn’t get baby PTSD. That’s not a thing, right? RIGHT?!

Happy Thursday, all!



November 26, 2013

Another month just flew by, and I’m left wondering where the hell the time went.

To recap:

-Nick started his new job on Monday. (Kyler and I couldn’t be prouder!)

-Kyler is over 18 lbs. (holy shift!)

-We have given up our home in Monroe, and moved in with my parents until we get back on our feet. (fingers crossed this is very temporary)

-Dunder and Vance have found a new home with a very loving family.  After a few tears, and some reminiscing, we are happy they are back together, and will have three loving kids to goof off with.

In summation, some things are better, and some things are worse. I am incredibly grateful that my parents are letting us stay with them, but feeling defeated that we no longer have a place to call “home.”

As the cold weather rolls in, so does my anxiety about Kyler getting sick. On Saturday, we were back in the ER for a g-tube malfunction, and I couldn’t stop thinking about what kind of crud was spewing out of everyone else. His O2 sats are still not great, and if he gets sick, he will undoubtedly end up back in the hospital. Unfortunately, this means that we will be limited in who we can see this Winter.

Most people have already heard this from me, but here is my (hopefully not bitchy sounding) disclaimer for cold and flu season:

-Kyler cannot be around anyone who has not had the flu shot. He is not able to protect himself, and anything respiratory could be really bad news. His low muscle tone means that it is hard for him to cough anything up, and he is still very much dependent on his O2. Also, the nasal spray flu vaccine is a live virus, so he cannot be around anyone who has had that within the last 6-8 weeks, either.

-He cannot be around any kids. This is for a couple of reasons. Number one, children/babies put their hands everywhere. In their mouths, up their noses, on the floor, etc. (trust me, I know). This is just a natural way that germs are spread. Kids are also working on building up their immune system, so they are more likely to be carrying something icky (even if they don’t look “sick”).

-Hand sanitizer is a must! I have tons of it around the house, and if anyone is going to touch the baby, please use it!

-If you are sick, have been sick, think you might be getting sick, or are feeling fine, but a psychic/magic 8 ball has mentioned you might be sick, please wait until you are better to see Kyler.

Unfortunately, germs do not discriminate between friends, family, or a random person walking down the street, so these rules apply to everyone. I promise, my goal is not to hurt anyone’s feelings, or be a “helicopter parent,” as my dad says. It’s to keep Kyler out of the hospital, where he’s already spent far too much of his short life. If we cannot see you this winter, we will make up for it!

So, here’s wishing everyone a happy holiday- full of love, turkey, football, and tons of baby kisses!



October 28, 2013

As another Monday rolls around, I’m left with a very tired baby (and probably a very tired husband). I feel like I have to go through my weekly mourning process, where the weekend is gone and I’m a single mom once again.

At least we had a somewhat productive day. I’m getting more used to the stares we get, on the rare occasion that Kyler leaves the house. Don’t get me wrong, I was one of those people, but I feel like I had a lot more tact than to blatantly stare, and whisper about another human being. I’m thankful that Kyler doesn’t look much different than your average baby (at least, for now), but his cannula draws a decent amount of attention. “Mommy, what’s on that baby’s face?” squeaked a little girl from across the aisle (funny how kids aren’t as cute when they’re not yours), and some guy actually had the balls to flat out ask, “What’s wrong with him.” Why does this still bug me so much? “I hate to bite your head off, good sir, but frankly it’s none of your goddamn business.” Of course these words never escape my mouth, but I wish people would just deal with their own lives. I don’t have time to explain chronic respiratory acidosis, or the ins and outs of de-boogering an infant cannula. I’ve got enough on my plate over here.

What it really boils down it is how much I don’t want Kyler to be labeled. The poor kid has already been through so much, and doesn’t even know it. Who knows what the future will hold, but for now, he is the happiest, most easygoing baby ever. Granted, this is not without some degree of sadness. I think his inability to move, and 29 day NICU stay, kind of did a number on him. He seems to happily accept his fate, perhaps to his detriment.

It’s those same characteristics that make everyday life hard. “It’s so nice that your baby doesn’t cry! You’re the luckiest mom ever!” I hear this on a fairly regular basis. Thanks, but I would have given anything to hear my baby cry within the first week of life. People really don’t understand how painful it is to be on a post-birth floor full of mom’s with their wailing infants, when not only can your baby not cry, but there’s something really wrong with him, and no one knows what. People think I’m so lucky for a lot of things, but the reality of the situation is that those things only exist because there is something wrong, not because some divine being decided to give me an “easy” baby.

Ah, there I go again sounding like a bitter old lady. I swear I’m not! (maybe a little)

On the upside, since Nick won’t be around for Halloween, we had our Very Hammer Halloween, or It’s a Prader-Willi Pumpkin, Charlie Brown! (no one around here gets my humor) early. Which, resulted in some pretty cute pictures. We let Kyler finger-paint his pumpkin, and let me just say, it’s a GOOD thing that stuff is non-toxic. That kid took a huge glob of brilliant blue and stuffed it so far into his mouth, I wasn’t sure we would ever get his hand back. No sign of blue poop, yet. I’ll keep you posted. Everything went fine until he got tired, and frustrated that he couldn’t hold his head up anymore (argh!), but after a warm bath and some cuddles with daddy, all was well.

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October 25, 2013

Nick came in last night, which is always a nice break for Kyler and I. I get to sleep in and eat Taco Bell, and Kyler gets to see his daddy. You should see the looks this kid gives his dad. He wakes up bleary-eyed, spit running down his chin, sees Nick, and with the widest, most soul-melting eyes, cracks the most awesome smile. I never get that smile. When Nick’s here, I can only imagine what baby’s thinking. It’s probably something a long the lines of, “THANK GOD. Please save me from this crazy lady who never shuts up.” I often wonder if he only smiles and giggles to make me stop bugging him.

Unfortunately for him, Nick didn’t quite know what he was getting himself in to last night. We had Indian food for dinner, which, while delicious, produces what I like to call, maharaja gas. The mix of curry powder and coconut milk produces something so repulsive, that I can only imagine Satan himself keeps some bottled up as his own personal cologne from Hell. This, coupled with Taco Bell and my increasingly full and un-pumped milk wagon (if I had bad gas, I didn’t dare give Kyler any fiery maharaja milk) I was probably not the easiest to be around. Sorry babe.

All is well, though. Every Monday I begin my countdown to the weekend, where we can all be together and pretend to be a “normal” family. No plans yet, but the three of us cuddled up watching bad movies is fine by me.

So after a days worth of baby-talk, cute little sneezes, and poopy diapers, I got to thinking about why I almost never call Kyler by his real name. Nick and I always assumed he’d go by “Kye” or something equally as cute. Alas, my flighty brain cannot seem to come up with anything less embarrassing than the following,

The Professor,” or just “Professor” – Kyler was born with a shift-ton of blonde hair. When it’s humid out, or there’s a scant amount of static he resembles this:


Great Scott!

Mackelroy” – My mom started calling him this soon after he came home, and for the longest time I couldn’t figure what the hell a “Mackelroy” was. Then, one day while driving to the doctor, I hear on the radio, “This is WWJR, with John McElroy.” Duh. I’ve been hearing about this dude since I was about 6 years old. I have no idea who you are, John, but my son might be having an identity crisis.

Fred” – Nick and I chose not to tell anyone what we were naming Kyler until after he was born. I recently asked my mom what she would have thought had I let the name slip, and she agreed that had she known, “Kyler” was our first choice, she would have tried to talk me out of it. I guess that either makes me really smart for not telling anyone, or really dumb for naming him something weird. Either way, she began referring to him as, “Fred,” in lieu of his real name. It kind of stuck, and Nick says that it still kind of suits him. What makes someone look like Fred, I have no idea.

Ginker Berlober, Stinker Rollover” – In my post-NICU delusional state, I got it in my head to start calling the poor child, “Ginkgo Biloba.” That, coupled with PT always working with him to rollover, turned into this monstrosity. “Over Sah-mow-ver, Kyler Rollover” is another variation of this, but I’m not even going to touch that one.

Monkey,” “Monkey in the Middle,” or “Monkey-Moo” – Let me preface this by saying that if you have ever given Kyler a monkey toy, shirt, or other oo oo ah ah paraphernalia, please do not feel bad. I completely agree that monkeys can be cute and certainly have the baby market cornered. That being said, monkeys scare the living shift out of me. I mean, have you read the stories?! They RIP peoples faces off. Why I have allowed this nickname to stick, I have no idea.

Moose” – Ok, ok, I know what you’re thinking. It’s pretty cruel to compare your obesity-prone child to a humungous animal. In my defense, “moose” came about because Kyler’s homecare nurse keeps saying, “I can’t believe how big he’s getting. I mean, he’s a moose!” I know we really should knock it off, but at least we’re not calling him “hippo.”

Dammit, brain.


“The Professor”


As I begin to open my life up to others, I feel the need to preface this with an apology (a great way to start off, amirite?)

I feel badly that I was so secretive in the beginning stages of Kyler’s life. When Nick and I arrived at the hospital for “the big show,” we were running on nothing but adrenaline, blind optimism, and pitocin. Imagine our surprise after an unplanned C-Section, and our new family member being whisked away to the NICU for an excruciating 29 days.

We were completely blindsided, and this unexpected situation was a scary thing for my family to come to terms with. I guess what I’m trying to say is, my f*ck you for being nosey attitude, was largely fueled by fear and anger over the situation.

This is not to say that I don’t feel completely justified in my choice to strictly share information on a need-to-know basis. I’ve come to the realization that having a child born with unexpected disabilities is a lot like having the doctor say, “This isn’t yours!” throwing your baby away, and handing you some other person’s kid. I mean, what the f*ck doc. This isn’t my baby! We did not know Kyler’s diagnosis right away, and If I was having a mini-panic attack over potential diseases, disorders, and syndromes, than no one except Nick and I “needed-to-know.”

When we did find out, my biggest fear was everyone running to Google and Wikipedia (this is the first thing I did). I hate, hate, HATE the pigeon-holing that goes on with any disease, because NO two disease, syndromes, or disorders present the same way. I was certainly not in the mood to hear, “Holy shift, her kid’s going to be FAT.”

For those friends and family members that felt confused, worried, and maybe even hurt, I am sorry, and I hope you will understand that we were feeling those things too. I cannot express enough how incredibly grateful we are for all of the love and support we received, and continue to receive on a daily basis. I hope that by using this blog, I can help keep everyone in-the-loop.