Five on Friday: The Liam Edition

1. Liam is really becoming assertive in his old age. Last week he rubbed his belly and said, "I am pungry for pizza." He demanded pizza for almost an hour, until he finally gave up and ate his chicken and broccoli. When it was finally time for our "cheat day," he was "pungry for cheeseburgers." Hello, Shake Shack!

2. When I ask Liam what he wants to do every day, he responds in one of three ways: 
     
      1) Go to beach.
      2) Go to hotel.
      3) Fly on the airplane.

I suppose we're to blame for these high standards of his. Ummm, buddy, I meant like color, build towers, make something with play-doh. Speaking of play-doh... 

3. Turns out my husband has some mad play-doh skills. The carrot cake and very detailed pumpkin on the left? Those are his. And that sad looking "pizza" on the right? That's mine. Meh. 

4. Liam finally found a spot for his juice, so now he rides around all day, trying not to let his cup fall over. I swear...just when I think this child can't get any cuter!

5. Me: Honey, what do you want to do for our anniversary?
    
    Husband (looking at Liam): I don't know. Liam, what do you want to do?
    
    We really need a babysitter. 


Happy Friday, friends!

Expecting a Baby with Spina Bifida?

If you've found yourself here, chances are you're expecting a baby with Spina Bifida. Or maybe you already have a child with SB. When I first received Liam's diagnosis, I felt so alone...and devastated...and scared...and just plain mad. But four years into this journey of ours, I can honestly say I wouldn't change a thing. Okay, so yeah, if I could take it all away for Liam, I would. After all, don't we all just want to make life easier for our kids? But, for me, the lessons I've learned have been invaluable. Liam has taught me more in the last four years than I've learned in a lifetime, and he is my daily source of inspiration and strength. It is one heck of a roller coaster ride, yes, but the ups far outweigh the downs. 

I hope the following posts will help to inspire, comfort, and lift you up. My greatest wish is that they offer you a glimmer of hope, no matter how small it may be. 

Liam's SB Story, from sbstories.org:

All About Liam: Spina Bifida Awareness

Since I started writing this blog, I've had multiple friends and family members say something along these lines: "I didn't know Liam had all of that going on." And I, myself, probably wouldn't know a thing about Spina Bifida, had Liam not been born with it. I mean, when the maternal-fetal specialist said "Spina Bifida," the only thing that came to mind was a wheelchair. I knew absolutely nothing else about it. And God knows you can't rely on television to give you the most accurate information. The only time I had ever heard Spina Bifida mentioned was on commercials sponsored by lawyers: "Was your child born with Spina Bifida? Did you take enter pharmaceutical drug name here while you were pregnant?" Of course, there are some medications that can cause Spina Bifida, but somewhere around 70% of all cases are attributed to a mother's folic acid deficiency, not pharmaceutical drugs. And as for t.v. shows? My husband is lucky I haven't smashed our television yet. To give you one example: during last season's Sons of Anarchy -- one of my favorite shows -- viewers were introduced to Nero's son, a boy who was born with spina bifida. When Jax asks what caused it, Nero utters one word: "neglect." He implies that the child's mother was a user, just like the mother of Jax's child. Forget the fact that Spina Bifida isn't even caused by drug use -- how can anything that is caused before a woman even knows she is pregnant be considered neglect?! It puts women in the very difficult position of being responsible for a child before she even knows that child exists. (The academic in me is SCREAMING that there's a paper to be written on the representation of Spina Bifida in television, but one thing at a time!). 

I was, however, thankful for Parenthood's representation of SB. When Max's friend, who has Spina Bifida, comes over for a playdate, his parents tell Adam and Kristina: "It's more than just the chair." And although they don't go into specifics -- he's not a main character after all -- it's at least acknowledged. I think that's a good place to start: it's more than just the chair.
 
So, in the interest of spreading some much-needed SB awareness, I thought I'd share the specifics of Liam's case. But, first, here are a few general things you should know:
 
"Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone." (As defined by the Mayo Clinic).

SB is the most common, permanently disabling birth defect in the U.S. (SBA.org)

Spina Bifida is often referred to as a "snowflake condition," since no two cases are the same. The location of the lesion on the spine determines the severity of the Spina Bifida. The higher up on the spine, the more damage is done. Liam's lesion was located in the lumbar section (L3/L4), and his type of SB -- myelomeningocele -- is the most serious form: "With this condition, a sac of fluid comes through an opening in the baby’s back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida causes moderate to severe disabilities, such as problems affecting how the person goes to the bathroom, loss of feeling in the person’s legs or feet, and not being able to move the legs." (As defined by the CDC).

The cause of SB is multifactorial, meaning genetics, environment, and nutrition may all play a role; there is still a lot we don't know. The one thing we are sure about is that taking folic acid before becoming pregnant drastically reduces the chances your child will be born with it. And therein lies the problem: if you aren't planning on becoming pregnant, chances are high that you're not too worried about taking a daily/prenatal vitamin. At least I wasn't. Even though I began taking a prenatal vitamin as soon as I found out I was pregnant, it was too late by then. The truth is that Spina Bifida typically occurs before a woman has even missed her menstrual cycle, which means it happens before she even knows she is pregnant. Because I wasn't on any medication at the time that Liam was conceived, and we don't have any family history of SB (as far as we know), our specialist said that Liam's was probably due to me having a folic acid deficiency, or that it was possibly just a fluke: "Sometimes these things just happen." I'm not sure which one makes me feel better. As for future children: my doctor has me on 4000mcg/day of folic acid, basically until I reach menopause, and can no longer get pregnant. Studies have shown that this high dose of folic acid drastically reduces the chances of any future children being born with SB. This isn't always the case, since there are unknown genetic factors, but it seems to be true for the most part.

Here are the specifics of Liam's condition:

Liam was delivered full-term via cesarean section. He was born paralyzed from the ankles down, with clubbed feet, one dislocated knee, and two dislocated hips, and spent the first ten days of his life in the NICU. In the first 13 months, he underwent seven surgeries, of which I'll detail more in the sections below. I still can't believe it's been over two years since his last surgery! He also went through months of serial casting and countless hours of physical therapy, in order to get him to where he is now.

Liam before first surgery.

Click here for video of Liam in the delivery room (you first see the lesion at 2:21).

Prenatal Diagnosis: Because of advanced prenatal testing and ultrasounds, most cases of Spina Bifida are diagnosed while the mother is still pregnant. In our case, it was a couple weeks after our 20-week ultrasound, when they found "larger than normal" brain ventricles. Our appointment with the specialist a few days after the initial call from my OB, confirmed Spina Bifida and hydrocephalus. With the level two ultrasound, our specialist could not only see the larger brain ventricles (indicating hydrocephalus), but also the lesion on Liam's back and his clubbed feet. We would've found out a bit sooner, except that the alpha-fetoprotein screening (a blood test often done sometime during weeks 16-18 of a pregnancy, that tests for conditions like spina bifida and down syndrome) came back as a false negative. Note: Because of advances in prenatal testing, it is estimated that around 80% of fetuses diagnosed with SB are terminated. This is not a topic I'd like to get into right now, but I thought it was important to point out.

It's a Boy! 20 Week Ultrasound

Neurological: Liam had his first surgery -- the repair and closure of the Spina Bifida -- when he was about 23 hours old. I knew from that very first surgery that he was a fighter.

Click here for video of Liam taken right before his first surgery.

Because the neurosurgeon was worried about the hydrocephalus -- excess cerebrospinal fluid (CSF) that had built-up inside the skull (very typical of babies born with SB) -- and also wanted Liam to remain flat on his belly after his surgery, I didn't get to hold him for five whole days.

Mommy finally getting to hold Liam!

Click here for video of Liam after his first surgery, sound asleep and snoring after his first feeding (he couldn't eat before surgery).

About a week after he was born, Liam needed another surgery -- a shunt placement -- in order to control the hydrocephalus. "A shunt is a narrow tube that allows excess cerebrospinal fluid (CSF) that has built-up inside the skull to drain out into another part of the body, such as the abdomen (belly). To drain excess CSF, shunts are inserted into an opening or pouch inside the brain called a ventricle, just above where the blockage is that is preventing the CSF from flowing properly." (Hydro-kids.com)

In September of 2010, Liam needed his first shunt revision, after his shunt started malfunctioning. And in November of 2010, just two months after his first shunt revision and two weeks after his first birthday, his shunt malfunctioned again, which required another surgery. If you're keeping track, that's one shunt placement and two shunt revisions. Thankfully, we haven't had any more problems with the shunt since then (knock on wood).

First Shunt Revision - 10 months old

  
Click here for video of Liam in the hospital after his first shunt revision (September 2010, 10 months old).

Second Shunt Revision & Still Smiling!

Sleeping with his favorite balloon.

Orthopedic: Oh, how we love our orthopedic surgeon, and orthotists, at Lurie (Children's Memorial) Hospital! They have done wonders with Liam. A week after Liam was released from the NICU, we began seeing the doctors at the SB Clinic in Chicago. 

All ready for his weekly trip to Chicago!

We started serial casting on his clubbed feet almost immediately, when Liam was about three weeks old, and his doctor has said starting that early made all the difference. For three months, Liam and I traveled three hours each way to Chicago, every single week, in order to get new casts put on. Each week they would remove the old cast, and replace it with a new one, stretching his feet just a little bit more each time. 

Modeling his casts!

Total Feet Transformation!

Liam's clubbed feet were corrected with three months of this serial casting, along with two subsequent foot surgeries: an Achilles Tenotomy of both legs at about 3 months old (a surgery to cut/release the achilles tendon), and one R/L Posterior Release about a month after his first birthday (a surgery to lengthen the achilles tendon and release the posterior aspects of the ankle). During the last surgery, his surgeon also performed an Adductor Tenotomy of his left hip/leg (the cutting/release of an adductor muscle in the hip/groin area). His dislocated knee was corrected with casting and a lot of stretching (thank you physical therapy!). He currently wears AFO braces, in order to keep his feet from tightening up and turning in again. As for his dislocated hips: new research shows that surgical intervention on the hips too early does more harm than good (something about scar tissue build-up, along with the fact that the hips tend to just pop out again). So, for now, we're not worried about his hips being dislocated. He will need additional surgery on his feet -- his feet/legs have been gradually turning in a bit, and his right foot has always been more problematic than the left, so we're looking at next summer for another foot surgery. Just in time to get him ready for preschool!

Recuperating from his last surgery!

Urological: We're pretty lucky when it comes to Liam's urological issues. Yes, he's needed medical intervention in the way of catheters and medication, but he hasn't had any reflux issues, bladder infections, or UTI's, AND his kidneys function perfectly. Hallelujah!
 
When Liam was eight months old, we went in for a routine bladder/renal ultrasound, and happened to see that the tubing of his shunt (the part that flows freely in his abdomen) had managed to travel into his scrotum and get stuck. Except for causing two hernias, it didn't do any major damage. Since his urologist had to go in to repair the bilateral hernias anyway, we decided to have her circumcise him as well. So she did what she calls a "fancy circumcision."

Click here for video of Liam after that surgery (July 2010, 8 months old).

After that surgery, we began catheterizing Liam. Honestly, learning how to cath him has probably been the scariest part of this whole journey. Of course, now it's easy-breezy, but I swear I almost fainted when they told me what I was going to have to do. I'm not a nurse for crying out loud! To make matters worse, even his nurse and urologist had a difficult time cathing him. The urologist had to schedule a scope procedure to go in and see what the problem was, and found that his bladder is a bit higher than normal. After that procedure and a month of trying to catheterize him, I finally got it down. I often describe it like a tricky lock on a door. You know, there's a very particular way you have to lift and turn the key in order to get the door unlocked. It's simple once you learn to turn and lift the key ever so slightly to the left, but until then, you're locked out. Yeah, it was like that.

Because Liam's bladder is smaller than normal and contracts constantly, the doctor put him on ditropan, three times a day (ditropan is an overactive bladder medication). That's where the cathing comes in. Because he's on the medicine to stop the bladder contractions, I have to catheterize him in order to empty his bladder. When I first started having to cath Liam, I felt suffocated. Like, how can I possibly ever have a life again when I have to cath him every three hours, and I'm the only one who knows how to do it?! But, like everything else, you get used to it.

When we move back home next spring, we're going to explore some surgical options for Liam, in order to get him ready for school. Our biggest concern right now is the fecal incontinence (i.e. he goes to the bathroom when he cries, laughs, or exerts himself). The good thing is it's definitely not as bad as it was when he was younger. And we know for sure that he has feeling in the area, but we don't yet know if he can tell when he has to go to the bathroom, so that's just one of those wait-and-see-til-he's-older sorta things. Luckily, we have lots of options when it comes to this issue.

As for being an adult and living with Spina Bifida: Liam can go on and live a perfectly "normal" life. Adults living with SB get married, have children, have successful careers, etc. The sky's the limit for our Liam.

It goes without saying that there is so much more to Liam than his Spina Bifida. SB is only a very small part of who he is, as I'm sure you can tell from the many other posts about this brave, kind, stubborn, intelligent, funny, adorable little man of mine. 

Hope you enjoyed your SB 101 course; although, I know many of my readers already have an advanced degree in the subject! 

Five on Friday: Vitamins, Facebook, and Other Random Musings

I've been workin' on something about Liam for the Spina Bifida Association website, so I haven't had time to get a regular post done. But I happened to come across this cool blog hop -- Five on Friday -- recently, and since I can't resist a good list, I figured I'd join in on the fun. So without further ado, here are my five musings of the week:

1. I'm still trying to figure out if these words, uttered by my husband in regards to my recent weight loss, qualify as a compliment: "I felt like I was cheating on my wife for a minute." Ummm... thank you???

2. Does anyone else ever worry that they'll overdose on their (very delicious) gummy vitamins? No? Okay, me neither.

3. The other day I was really irritable. Like, really irritable. Instead of losing my cool (which isn't really my style, but I felt like, at any moment, I could start screaming or crying and never, ever stop), I simply told my husband how I was feeling. His response: "Do you need anything? Want me to go to the store and get you something?" Hmmm. Actually, some chocolate would be great. Chocolate makes everything better. Sometimes you just have to ask for what you need.

4. You might have a problem with a certain social networking site if... Your husband happens to walk behind you (and your laptop) and says: "Of course you're on Facebook. And of course you're on Facebook looking at cats." You might really, really have a problem if your three year old son's new line of questioning includes: "On Skype all day long, Mommy?" And by Skype he means computer. And by computer, I mean Facebook. I might need a 12 step program.

5. Less than two months 'til we head back to the States for a month-long visit, and I can't wait! I spent part of yesterday getting all of our hotels booked. Needless to say, it was a rather expensive day, especially given the fact that my dear husband is a hotel whore. I mean that in the nicest possible way. Don't get me wrong -- I like a nice hotel room, but I have no problem staying at a Hampton Inn, if it's clean, with relatively new bedding, especially if it saves me some cash. My husband will not.

Well, that was fun. And easy. Happy Friday, friends!

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Precious Progress: Liam's First Year in Kuwait

You guys! Can you believe it's been a whole year since Liam and I moved to Kuwait? I guess time really does fly when you're having fun; or, more accurately, when you're locked in a basement apartment, in Kuwait, with a three year old. 

June 2012                                              June 2013

One positive aspect of our current situation is that Liam and I have A LOT of time to work on things. And I no longer have any distractions: no thesis, no impending international move, no SOCIAL LIFE. Sigh. (Okay, so I don't know if occasional playdates, walks with a friend, and a monthly girls' night out constitutes a social life, but it was more than I have now). So, like I said, LOTS of time for Liam. It has definitely had its advantages, though. Here is a rundown, with lots of pictures, of all the progress he's made in the last year:

He took his first steps! After a year of making his Mommy walk him back and forth in his RGO walking brace -- imagine doing squats and working out your arms for an hour straight and you'll know what it was like -- Liam finally decided he was ready to take steps by himself (and let his Mommy off the hook):

September 2012

And now he can stand up and take steps without wearing his RGO, and has developed some amazing upper body strength along the way:

December 2012

January 2013

April 2013

Look Mom...one hand! June 2013

Check out that upper body strength!

One of the last things we worked on with our wonderful physical therapist was getting Liam to climb onto something and get himself into a seated position. Two days before we moved out of our house in Illinois, I found Liam sitting on my suitcase. I said "get off my suitcase, Liam" and then quickly realized he had actually managed to do what we'd been working on: "Uh, wait, I mean good job! Woo-hoo! I'm so proud of you." He really got it down once we moved:

August 2012

He also learned how to stand up to (and climb on) the coffee table. Needless to say, the coffee table no longer lives in our living room:

Early August 2012

August 2012

Late August 2012

He started doing yoga. Okay, so it's mostly some stretches and downward facing dog, but he's really good at what he can do:
 

September 2012

He learned how to climb onto the couches all by himself. He needed a chair to help him out at first:

August 2012

But we still had some work to do. Don't worry -- eventually he learned how to climb OFF the couch as well:

August 2012

Six months after we moved, he really started making progress. I think our visit home did the trick. Seeing his cousins standing and walking was major motivation for him. And in typical Liam fashion, he started doing things when he decided it was in his best interest to do so. When we first arrived in Kuwait, he couldn't even climb into this little chair by himself. Six months later, he's using it (and the couches) as his own personal jungle gym:

December 2012/January 2013

He's also started standing up to things and taking steps forward: the t.v. stand, couches, and his slide: 

May 2013

And speaking of slides... We bought a little baby slide when we first moved here, and worked for about a month until he could stand up to it:

August 2012

And now check him out! He's moved on to a big boy slide! He pulls himself to stand using the slide, takes a few steps forward, and slides down on his belly. He even puts his feet on the steps and uses them to push off. How's that for progress?!

June 2013

He has mastered the alphabet and started spelling and writing words, some more appropriate than others:

I believe this to be a personal attack. :)

Father's Day 2013

He can read, like, really read.

And recently he surprised me by sitting at the kitchen table. I was seriously surprised. Like, looked-all-around-the-house-before-I-found-him surprised. When I was making dinner, he climbed up on the chair and waited patiently for his dinner. He must have been hungry:

He has started talking, even in front of Daddy. And he's becoming more and more comfortable around other people. When people ask him what his name is now, instead of putting his hands in his mouth and saying "eh!" he (very confidently) says "Liam." To be fair, though, one thing I've learned is that most adults DO NOT respect kids' personal space. Liam does not appreciate this, although he's learning how to better deal with it. Lately, though, he's becoming friendly, a little too friendly (i.e. tries to give kisses to random people in the grocery store). And just last week, the cashier at the Sultan Center (Kuwait's Wal-Mart) said "he's a good boy this time, yes?"

What a difference a year makes! I am so proud of my baby, though, it's becoming increasingly clear that he's not a baby anymore.

I can't wait to see what the future holds for this remarkable little boy of mine.