Saturday, June 8

Branko's First Surgery

Branko had his first surgery yesterday, or, as I'm sure all the more experienced Sick Kid-ders call it surg. It went off without a hitch. He is cranky, but at least he's cranky + morphine. The irritating part was that the series of events leading up to this surgery never should have happened. I feel like I should apologize to the people of Ontario for wasting just a teeny smidgen of their health care dollars.

Since his BIG surgery kept being postponed, the bones in his legs kept on growing and growing (as they do, right?!) so the deformity kept getting worse and worse. So much so, that the tibia finally started to break through the skin. It started to look pretty gross, so we brought him in to our second home, Sick Kids --*HI MARLEEN*-- and they quickly told us that the leg needing fixing. The procedure was called a 'cleaning and irrigation', you know, kind of like what the dentist does every now and again. They cleaned out the wound, took samples, threw some stitches in there, and then gave him a big old cast.

This little so-and-so followed
us to the hospital.
The almost-bright-side to all of this: it was nice to have a dress rehearsal for the BIG surgery. I have a bit less anxiety now about having strangers wheel my son away, while he's awake, and not seeing him for 5-7 hours. These doctor people seem to know what they're doing. The anesthesiologist even gave Branko some "happy juice" (his words) in order to make the goodbye part a bit easier. He happily said 'bye' to us, glassy-eyed, as they wheeled him away.

I feel incredibly guilty at the level of boredom/discomfort/confusion he is feeling right now. He has been given more drugs than I can remember, and has been poked, prodded, and examined almost every hour. As I write this, we are trying out a splash of Gravol to even the boy out. Who knows, maybe we will follow that up with the ol' Morhpine/Tylenol combo he seems to love. Yesterday, I took him for a walk to the playroom to distract him. I spoke with a mom whose daughter had surgery the same day as Branko. The daughter and dad had achondroplasia and mom was really worried about some really common post-surgical concerns - the daughter not eating yet, having to resort to morphine, the fever, the whining, etc. It was really nice for me to be able to say, don't worry, it'll all get better soon.  Every time we are in the hospital, I have moments where I am watching Branko experience something quite horrible, and I say, Yep, THIS is the worst. Nothing can ever be as bad as this. And then, time will go by, and we experience something else, and I say, Nope, I lied, THIS is the worst. This is actually, really, truly, the worst thing ever. And then all those previous little things start to seem so minor and insignificant and really, no big deal. If I could have bottled up that small (no pun intended) amount of confidence and given it to this fellow stressed-out mom, I would have. Instead, I ran to our room and bragged to my husband that I *finally* met the extremely cute wee toddler down the hall, which I surmised was the hospital stay equivalent of meeting a Canadian C-list celebrity. (think Arlene Dickinson...)

Saturday, May 11

Let's talk about baby leg braces; Show me the Money

I realize this looks like a weird, stretched-out
picture but he's just real tall, ok?
This past August, we were told by Branko's pediatric orthopedic surgeon that he would require surgery on his legs and ankles in order to eventually be able to walk. Until then, he felt that AFO's (ankle-foot orthotics) would be necessary.

Our son, 14 months old at the time, had never been able to bear weight. He couldn't even play in a jolly jumper at that point. His legs were weak because he couldn't stand; he couldn't stand because of the deformities in his ankles.

We were excited at the prospect of actually seeing him stand, and how his perception of the world might change. A small part of me hoped/thought he might put them on and immediately start breakdancing, or at least, start helping out around the house.

I fantasized about looking back on the experience later on: "oh, THOSE leg braces.... he wore them for like, a month, and then starting walking perfectly! Money well spent!" That's not quite what happened. I really, really wish I like the things. They are bulky, velcro-y, and they hurt when he kicks. Originally, they kept falling off. These two $3300 pieces of plastic (we paid $750; thank you OHIP, I guess) took a short trip along the middle of Bathurst street one day after Branko kicked them off while in the stroller. Off the top of my head, I don't own anything else worth that much, except my house, and gladly, I don't have to worry about it getting run over by a car.

Other than falling off, the only other problems arose from attempting to mitigate the reactions of other people. The first time I took him out, he had shorts on, so the braces were fully visible. I could never have predicted that I would be in a situation where I was comforting strangers. After noticing a few sad gazes, I quickly realized I was quite good at providing comments like, "Don't worry, he's not in pain" or "his legs aren't broken" (even though they are) or "he likes them!!!!" Please, all you concerned strangers out there, let me comfort YOU with regards to my son's medical situation. Kind. of. messed. up. My personal favourite: ahem, "Does he have spina bifida?" WHOA, cashier at my local LCBO, slow down there. How did we get to be such good friends?

Aside from their poor mechanics, Branko was a pro at standing. I think he pretty much stood right away, though he was very shaky. Eventually, he was cruising up a storm. He was able to finally stand and play with things on the couch! A whole new world opened up: puzzles, drawings, Mr. Potato Head. He can do all these things sitting down, but it's much easier without being all hunched over on the ground.

The purpose of the braces was for support and protection leading up to his surgery. His original date was March 12, then it was rescheduled to May 7, which was cancelled because of his pneumonia. He is now scheduled for June 25th. The problem is, his braces don't fit him anymore, and we are waiting to see the orthotist next week. He looks extremely uncomfortable when they are on. We have also noticed mild bruising and swelling on one leg. So now, we are operating with a "no standing policy" in our house. We are encouraging him to crawl, shuffle on his butt, or just sit and play. It's a bit difficult, because he CAN stand up on his own.  Trying to prevent this may be tricky.

Right now, I am trying to navigate my way through OHIP's Assistive Devices Program, trying to see if we are eligible for a replacement pair, since it was less than a year ago that we got them. I have also filled out a vague application form for my work's insurance program. (It asks nothing about his long-term condition... weird) I have also been perusing March of Dimes and Easter Seals Society, looking for some cold, hard, $$$$ to help pay for these things. The application forms are ridiculous. There's a certain order to things: first, you apply to OHIP's program; then, to your private health insurance company, THEN, if you qualify, you may apply to one of these organization's very generous assistive device grant programs, only after successfully doing a one-armed handstand while eating a sandwich. I am sure everything, or at least something, will work out in the end. After hours of a filling-in-forms-marathon, I need to go tend to my party animal:

Saturday, April 27

Killing, or at least, maiming with kindness

There are definitely people out there who know exactly what to do in tragic circumstances. They know what to write on a card, what to say in that initial, awkward phone call, what type of flowers to send, and what kind of food to bring to the hospital. I am totally not one of these people. I never know what to say or what to do, and I've sort of scraped by with just copying what other appropriately kind people are doing.

Now that I am a bit more grown up, and, having experienced some mildly traumatic things, I feel like I have the right to say that everyone is, to some degree, an asshole. People generally do not like going out of their way for others. I have to say, I can understand the hesitation. We don't like to feel we are a bother, or nosy, or that we are in the way, and we especially don't want to give up our few precious moments of free time in order to selflessly "do" something for other people. We are assholes. I am the biggest asshole. But... I think I can provide some clear guidelines on how not to be as asshole-y anymore (just in case you're interested).

Step 1: Please stop saying, "is there anything I can do."  This statement comes with good intentions, yes, but the pregnant woman whose father just died of a heart attack isn't in any state to know what she needs. The family with a baby son in the hospital may not realize they haven't eaten in 3 days. Please Note: Swiss Chalet = good idea. Take that extra step, decide what she might need, and then just do it. Don't ask. People in stressful/tragic situations need food, clean clothes, someone to feed the meter, long distance phone cards, booze, magazines. Anything. But please, stop with the asking. Just do it.

Step 2: If you have already asked, "is there anything I can do", and the recipient says, yes, please do A, B, and C, then get the heck down to business and do A, B, and C. What are you waiting for?

Step 3: Please always ask, "is there anything I can do?" Confused? That's okay, so am I. If you don't ask, then you are an asshole. That's just the way it is. While step 1 is very important to remember, not doing step 3 will get you into hot water. You have to say something to show that you are actually invested in the situation. That aforementioned statement is easy, derivative, and doesn't require too much brain power on your part. However, you need to make sure you follow step 2, or else step 3 is redundant.

I  would like to reiterate that, yes, most people (including myself) have the potential to be assholes, but, most people are inherently super kind as well. Do you want to be a kind person who doesn't actually DO kind things, or do you want to get 'er done? When people receive kindness, after going through a long period of badness, it becomes their new focal point. Instead of obsessing over whether their son is going to live through the night, they might just take a second and remember the awesome dinner you dropped off at the hospital.

Thank you. Class dismissed. 

Thursday, April 25

A garbage-y day turned into an okay day

Branko is currently sleeping in an ICU bed at the hospital. He has Influenza B, and pneumonia in his left lung. He has an IV in both arms, and tubes sticking out of his toe, chest, and nostrils. His breathing sounds treacherous; I will definitely need hypnosis to forget these sounds.  My husband brought him into emergency yesterday because he had been sick with an ear infection, and had been on antibiotics for 48 hours with no improvement. Over the past few days, he had become lethargic, had stopped eating and sleeping, and generally seemed like he was uncomfortable.

I won't go into the trillions of tiny, messed-up details about his experience here. It's been terrible. I left work early to meet them in the ER. This is how Darth Branko looked when I arrived:

I'm not going to write a stupid, redundant post called "Top 10 Things You Didn't Know About Baby Pneumonia" or "20 Things to NEVER do with a Nebulizer". I could, however, write and write and write about what you shouldn't do to cope when your baby is in the hospital: shots, McDonalds, yelling at husband, listening in on other parents' conversations in order to gage how bad things really are for you, etc. In other words, I have no actual useful pieces of information. I was a complete mess for the first twenty-four hours. I was showing signs of extreme anxiety, I couldn't be in the room with Branko without weeping, and all I could think about were the worst possible scenarios.

And then, just as quickly as all the bad news seemed to come, a handsome Irish doctor (husband's words, not mine) decided to give us a tiny little nanolitre of hope. He wanted to try a different method of treatment, which involved, well, stopping the current treatment. He wanted to discontinue using almost all of Branko's asthma meds -- because he believes that Branko doesn't actually have asthma. Please note: I'm not suggesting using your kid's medicine as kindling.  We are now into our 5th or 6th hour of our 'non-treatment' and, right now, Branko is sleeping. SLEEPING. He hasn't done that in weeks. We are taking it as a good sign. I suppose the point of this tale is to wait. Be patient. Don't expect the worst possible scenario, even if you have this 'feeling' that something is dreadfully wrong. (Those 'gut feelings' are just a mish mash of residual fear from other past shitty things that have happened. Also: Jim Henson's death was atypical!!) And lastly, when the going gets tough, try to believe in the power of handsome Irish doctors.

Tuesday, April 16

All About Me!

This isn't going to be a post about Branko. I am breaking all of my own rules right now. This one's all about ME. I had a miscarriage a little while ago.  While I won't go into detail about what my bathroom looked like (it was gross) or about my shitty doctor (he told me to stop using midwives due to my advanced maternal age), or about my ride in the ambulance (I felt important when they finally turned the siren on), I would like to share a few things with you, if you don't mind.

On one hand, I never thought this would happen to me; on the other, I was always expecting it to happen. I am immediately reminded of a female comedian somewhere out there, who told a pretty brutal joke a few years ago that went like, "well, I guess this is MY rape."  I'm not comparing miscarriage to rape, by any means, I just understand that strange feeling of knowing that, maybe perhaps someday, this shitty, terrible thing might be a possibility. It sucks. It doesn't make it any better. So, I wasn't really surprised when they told me that, at 13 weeks pregnant, my fetus measured at 9 weeks, without a heartbeat. I didn't ask, why me? That's just silly. I was more like, how did I get to be the shmuck who didn't realize she hadn't been pregnant for over a month?

The first major realization after having a miscarriage: I have never felt more disconnected from my own body. If someone from the future had come back and told me I was about to have a dead fetus inside me for four weeks, while still having pregnancy symptoms, yet at the same time having no symptoms of a miscarriage, I probably would have been a wee bit suspicious, and then I would have immediately written a letter: Dear Reproductive System, What the fucking fuck? Why do you consistently, without fail, continue to fuck with me when I am not looking? I have clearly been betrayed by my own body, having never been more surprised at all the hideous surprises that have come out of me in the past week. 

Second thing: This experience is nothing like having a healthy, successful, pregnancy. It's about 10 mazillion times more traumatic, emotional, and painful than giving birth. I don't expect anyone who hasn't been through it to truly understand. This attitude has, unfortunately, made me want to avoid anyone who is pregnant or who has just had a kid. Sorry. Nothing I can do about that. I'm just not going to talk to those guys for awhile.  I feel really bad about this, but I'm also quite confident this feeling will pass very soon, and I will go back to creepily rubbing pregnant bellies and sniffing newborns any day now. 

Third thing: why does noone actually talk about this? This attitude seems so 1985. I understand the need for healing, for privacy, for emotional detachment from other people (see above), but I honestly don't understand this creepy desire to ERASE the pregnancy. That seems like it may do more harm than good. Since I had already told so many people about my pregnancy, I was forced to be honest and share what had happened. In retrospect, I am thankful that so many people knew -- tragedy actually does brings people together, and these same people are the ones who are going to get 25-year-old-drunk-with-you-and-make-dead-baby-jokes (if you're ready). 

And lastly... don't be an asshole. If a friend has a miscarriage, call or text her. Constantly. Come over if you can. Don't send a text like, How are you. That is too vague. You may as well say, I have two eyes. Cancel your plans, buy some beer, get her out if possible.  And not just for the first few days. Maybe check in after a week, when the shit really hits the fan and she has to go back to work and pretend like nothing happened cause everyone is too weirded out by the fact that she was pregnant last week and now she's just... not. 

And now to lift your spirits: Halloween costume ideas!!!.... enjoy?

Bert and Ernie

White Goat

Elvis Presley

Monday, April 15

Why I'm allowed to brag; Why you are not, Part II

In an effort to make myself seem like less of an angry psycho, I am writing this to let the world know, "I am not an angry psycho!!!" I love my friend's kids. I love hearing about funny shit that they do, like punching mom in the face, or shitting their pants on Santa's lap at the mall, or wearing a piece of bread as a bracelet, or dancing to music with words like "shit", "balls", and "suck". I realized after this post, that I was turning into an insensitive stupidhead, one who might just be making other people feel bad about themselves. But wait... how does that help anyone, you ask? It doesn't! And that's why I am going to attempt to actually write something sensitive and helpful to hopefully undo any bad feelings I may have stirred up.

Last August, Branko's pediatrician asked me how I was doing. It was weird, and it seemed like a loaded question. I was immediately suspicious. Why is she asking me that? Is she about to give me bad news? I told her I was fine, and then I said, no, actually, things are pretty shitty. I told her about how hard it was that Branko seemed so different from other babies. It was the first time I had said anything like that out loud.  Up to that point, Branko had appeared to be meeting all his developmental milestones; then, at 13 months, other babies started having these explosive developmental spurts. Kids his age were walking. They started saying 'momma'. They started to feed themselves. What had been a totally awesome, blissful one-year-long maternity leave was starting to feel like a distant memory. Every 'new' thing that another baby did felt like a kick in the stomach. This kick in the stomach felt worse with babies younger than Branko. I stopped enjoying every single moment with my son, and starting worrying, to the point where it was difficult to leave the house. Why put myself through that pain? In retrospect, I realize it was totally, absolutely, like that time in grade 8 when I decided to 'drop out' of school because some kid named Danny told everyone I did not need a bra. Yeah, NEVER going to school again seemed like the only possible solution, just like never leaving the house with your one-year-old son. I realize now, nearly 8 months later, that I don't want to be the kind of person who makes irrational decisions on par with that of an angry, flat-chested grade 8 girl.

Back to my doctor's office. She printed and gave me the following article. At the time, it didn't make me feel better, because I thought I had nothing in common with the author.  And now, a few months later, I realize how lucky I am that someone put these complicated, intense, and sometimes angry feelings into words. PLEASE NOTE:  I am in no way comparing myself to Maria Lin. Her situation is extraordinarily different from mine.  I would also like to point out that she is a fucking hero: a real, honest-to-goodness writer who has the talent to more eloquently describe many of the challenges I have come across.

So that's all I'm going to say on the topic of "feeling sorry for myself cause my son can't do some of the shit that he's supposed to do yet". {Please read Ms. Lin's article.}  

Thursday, April 11

Why I'm allowed to brag; Why you are not, Part I

Sorry to brag, but here's Branko. DOING THE ROBOT!

Just so we're clear: I am allowed to brag about my son. Sorry. You, on the other hand, you lucky parent of a developmentally-normal toddler, you may not. That's just the way it is. Let's do the math. Branko, who is almost 21 months old, can't walk or even stand without support. He's barely talking. He looks like he's about a year old. He wears leg braces. He just, um, looks different.

What's that? Your little one is using multi-syllabic words while walking backwards down the stairs on her way to help momma make organic palm sugar almond butter cookies? That's f&*king awesome.

It makes me feel bad when achievements are all mom/dad talks about. Sorry. Those little humblebrags are a constant reminder that my son is not normal. Would you go up to an adult with any sort of uncomfortable life-changing condition and just start talking about how many kilometres you ran today, or about how much food you ate last weekend, or how much better you slept after doing hot yoga last night? Hmmmm... you might, and it probably wouldn't even hurt most people, but why take that chance, right?

So the next time I brag about Branko (like the time he almost said "egg" in Serbian), please do any or all of the following: Roll on the floor, hyperventilate, make sounds only dogs can hear. Whatever. Please make it clear to me that this achievement is amazing. Cause it is.

Sunday, April 7

Surgical Dress Rehearsals

Branko was scheduled for pretty major surgery this past March. Surprisingly, our orthopedic surgeon has somewhat neat handwriting, and he described the procedure as "B/C ankle pseudoarthoses correction i intramedullary stabilization and casting. Instrumentation: Williams Rod." We are PRETTY SURE this means they are going to line up his tibia to his ankle to correct the bowing, clean up any weird (pseudoarthotic) scar tissue, and put some rods in there, rods that may or may not be in there forever. He will require a hip spica cast for 6-12 weeks afterwards.  The surgery is important; without at least one surgery, Branko's chances of walking with his current deformities are minimal.

We arrived at Sick Kids at 6 am (brutal) and then waited around to be seen by a nurse.  We were all STARVING. Branko had to fast for 12 hours before the surgery (which really wasn't that big of a deal... he's done that before) and we were so rushed that I hadn't eaten anything. I decided to take advantage of the scant 6:15 am line up at Starbucks and get me a breakfast sandwich and coffee. As I was pulling my disgusting/awesome sandwich out of my purse, the nurse calmly explained that "no food was allowed, to respect the children who have been fasting." Of course! Why would I put my own needs before Billy, the sleepy boy in the bed across the room who literally could not care less if I experience the deliciousness of a greasy Starbucks breakfast creation? I was going to eat it discretely -- I am the mother of a toddler, and I know how to keep food hidden so I don't have to share anything.

ANYWAYS. Our orthopedic surgeon came in. He was pretty optimistic and confident about the surgery. He even took out a fancy permanent marker and drew all over Branko's legs to show us exactly what they were doing. My feelings at that moment: No Big Deal. Piece of Cake. However, he reminded us that Branko still needed to see the Anesthesiologist, who would have the final say on whether or not Branko was 'well' enough for the procedure. A few months before, Branko had started taking asthma medication in order to treat some mild wheezing. Wheezing of any kind presents a rather large risk after a major surgery.

The Anesthesiologist examined Branko and immediately voiced his concerns over a small wheeze that he heard in his left lung. He hesitated before telling us that, no, we wouldn't be having the surgery today. He seemed truly sorry.

We had scheduled the surgery during March break, since I would have two weeks off to be home with him, and wouldn't have to use up my sick days. We had spent so much of ourselves mentally preparing for this. And now it was over.  The worst part was unpacking. I brought a lot of stuff to the hospital. I had spent about 3 days packing...  we had no idea of the type of clothing that would be best for a baby with an IV, epidural, and hip spica cast. It's really hard to take shirts off with things sticking out all over your body. I realize now that he may just have to wear a girl's nightgown for a few weeks.... sorry, Branko. A million times sorry. 

Thursday, March 7

First Hospital Visit; Our Health Care is the Shit

When Branko was about 3 months old, we noticed a bony growth on his rib. We weren't concerned at all, but our pedeatrician wanted to do a chest x-ray, just in case. I remember taking Branko to the x-ray department at Sick Kids, all by myself, and not! even! worrying! for one second. Nothing could possibly be wrong with him! Doctors are stupid! Can't they see he's perfectly normal?!

I realize now that this x-ray was the first of many. {I miss that feeling of naivety.} That same night, my husband got a call from our doctor. Severe bone abnormalities in his ribs. Some of the bones were fused together; there are an uneven number of bones on either side; there appeared to be fractures throughout the ribs. The doctor didn't want to worry us, but she did drop the osteogenesis imperfecta bomb at this point. Luckily, my husband is a nerd with a powerful memory, so he immediately knew that this was the same condition that Samuel L. Jackson's character had from Unbreakable.  (SPOILER... we found out about a week later that he didn't have this condition...)

She suggested we come back the next day for a full body scan. Branko had to have everything x-rayed: neck, arms, legs, torso. The prognosis: Branko had broken bones, or 'bony abnormalities' all over his body. Everything from the vertebrae in his neck, to his pinky fingers, to his ankles and legs, were affected. Our pediatrician explained all this to me over the phone; she was calm but just a smidge panicky, just enough to make me want to freak the f^&k out. So I did - for about 3 minutes, but I politely waited until she was finished instructing me to pack enough clothes for a week and head on down to Sick Kids hospital. I had my freak out, and surprisingly, things were pretty clear in my head. I knew a few things right away:

1) my husband needed me to be okay, like really be okay, and not some hysterical beast, and
2) I needed to be strong for my son.

So I made a choice. I simply decided that I was going to do this, whatever THIS was, and I was going to do the SHIT out of it. I was going to be the strongest, best, motherf*&ing mother-of-a-sick-4-month-old that Sick Kids had ever seen!

We stayed for almost a week. We were mostly treated impeccably. I'm pretty sure we were considered royalty in rare-genetic-disease-circles.  Those first few days, we saw a lot of doctors, mostly geneticists, neurosurgeons, and orthopaedic surgeons, with a few endocrinologists and opthalmologists in between. Branko had blood tests, a cat scan, an EKG, an MRI, eye tests, and a skin biopsy. I'm sure there was more. I can't remember.

When we left the hospital, they still had no idea what caused his abnormalities. They thought that the so-called fractures happened during labour and delivery, and the radiologists agreed they were healing well.  Every doctor who saw him was simply amazed at how he presented in 'real-life.' They also all agreed that he wasn't in any pain. His X-rays paint a picture of someone with extremely fragile bones, someone that shouldn't have been able to roll over and move his neck up and down. The osteogenesis imperfecta prognosis came up a few times, but most of the doctors agreed that his fractures didn't quite fit this condition. Nonetheless, they decided to go ahead and test for it.

Now here is the predictable part where I talk about how our health care system rules. I mean, I can't even imagine how much all this would have cost in the US. Even with a good health care plan, I am sure my husband and I would have had to sell our house to ensure we had enough money for Branko's future care. The blood test for Osteogenesis Imperfecta had to be done in the States, and the fee wasn't covered by OHIP. However, all we had to do was fill in a one-page form to apply to the Ontario Government for the money. When I asked the doctor how much the test cost, he told me: $5000. When I asked him what the hell were we going to do if we weren't granted the money, he just smiled and said, "they won't say no, they just won't say no to this." We got the money, had the test, and got the results back a few weeks later. Negative.

Even though they still don't really know much about his condition, it doesn't really matter. I suppose it's good that I don't know. It prevents me from endless hours of googling random genetic conditions, and having permanent cry-face. 
This is better. I have nothing to look up. I can only wait, go to appointments, and make sure Branko is happy. So far, so good.

Thursday, February 28

Weight Gain; Branko rides the bus

Well here is little Branko riding the bus, on his first birthday no less! This was an especially bad day for us; our roof was being fixed, so no nap. He also barely ate anything that day. It was hot. He refused to go in the stroller, so I used a carrier. Soon enough, the carrier wasn't any good, as I assume it simply turned into sandpaper or hot forks, so in my arms he stayed, for most of the day. A well-deserved dose of pediatric Advil was on the menu that evening.

We have never had trouble getting Branko to eat. He eats a ton. He likes most food, though he is going through a picky 18-month developmental thing right now, so eating is a bit more difficult. But overall, no complaints. The mysterious part is that he cannot seem to gain weight. He had a growth spurt when he was first born, so we were pretty lucky there, and then another when he got into solid foods at 5-6 months. Other than that, every pediatrician appointment is usually anxiety-inducing. I have had to disappear during the weigh-ins, leaving Branko with my husband, to collect myself in the washroom and breathe into a brown paper bag just like in the movies. I have now lowered my expectations to the point where if he hasn't LOST weight, I'm happy.

It's very hard. I have had strangers comment on his size or make grimacing faces when I disclose his age. I have had acquaintances make sly suggestions on what other foods I should be feeding him. I have had people say, "Let me take him home. I'll fatten him up!" Cause, yeah, I hadn't thought of actually FEEDING the boy. Yes, everyone, I HAVE been researching fatty, nutritious foods to the brink of obsession. And yes, I've googled 'baby solid food weigh gain' or 'baby can't gain weight' probably 400 times in the past year. And yes, I think I've tried everything I can possibly try to get him to pack on the pounds. I am just starting to get over this strange compulsion to actually apologize for his size.  I am now beginning to realize how super fucked-up that is. But that was me. Apologizing. SORRY, WORLD: MY BABY IS NOT CHUBBY. --> (that was me, like 6 months ago, in case you weren't following)

The only thing that would make me feel better about this is if he would just fatten up ever so slightly. Have another small growth spurt, I dare you! In the meantime, I take solace in the few internet mommy blogs and Pinterest boards that discuss failure to gain weight, especially if it's alongside a health concern. Not that I'm happy to hear about other sick babies... but it's nice to not feel completely alone with this problem every second of the day.

Tuesday, January 29

Branko's left leg; Some Uncertain Certainties

Here it is. Branko's super-messed-up left leg. And don't even get me started on the right one. If you look very carefully, you might notice that his tibia (biggest bone) is not quite lined up with the ankle. In fact, the bottom of the tibia is nearly poking out of his skin.

What we thought was a minor bone deformity (he was diagnosed with a mysterious genetic bone disease; more on that later) turned into something much worse as he grew and got a bit older. Quite simply, the bones aren't growing properly. Perhaps they are weaker than normal; perhaps they are normal and, for whatever reason, they never quite lined up properly. Perhaps he will have to have multiple, repetitive surgeries until he stops growing. Perhaps he won't.  Perhaps he will need leg braces for years to come; perhaps he will walk comfortably without them. One thing I do know: this sucks. As parents of a child with the aforementioned mysterious bone condition, we don't know anything. Squat. Diddly. Nothing. Every doctor has told us to "Prepare for the worst, hope for the best." I feel bad for them. The doctors want to help him. They want to help and comfort us. But they simply don't know what to say. He is, quite literally, the only person so far on this planet with this condition. (Lucky us?) They don't want to give us false hope. I don't really blame them.

These is what we know so far... 
1) Branko has some major bone deformities and fractures throughout his body, however...
2) he has no problems smiling, laughing, farting, almost talking, and being an overall hilarious individual;
3) His condition is genetic, but not hereditary. Meaning this whole experience was just a random blip in the randomness lottery;
4) He can't walk yet, but we are working on that... more on this later;
5) He has the BEST doctors in the world at Sick Kids, working in a lab, around the clock (no, not really, but this is how I picture them) trying to find out what the story is inside Branko's body;
6) He has pretty amazing people around him -- grandparents, nanny, aunts, uncles, etc. When you have a child that's not well, you don't go through it alone. The whole world shares your burden. Well, except people in Hummers and SUV's who are dead on the inside. Those people are excluded.