On Gratitude and Special Needs: Our Trip to the River Jordan

Well, friends, as I'm sure you could tell from my facebook posts, we had a wonderful time on our trip to Jordan last month. One of the highlights of our trip was a visit to the River Jordan, where we had a once in a lifetime chance to go down to the very spot where it is believed that Jesus was baptized by John the Baptist. It is a moment that will stay with me for the rest of my life.

Excavated remains of Bethabara

The River Jordan no longer flows through this area (it's a little farther out now), but the earth and stones that Liam and I are touching (in the VIDEO below) are the excavated remains of Bethabara -- and the very spot where it is believed that Jesus disrobed and prayed before being baptized by John the Baptist. Our wonderful tour guide, and two others we had to check with to make sure they wouldn't object, insisted I bring Liam down there: "It is very important. It is very lucky. Only the Pope goes there."

Click HERE for Video if you're on a mobile device.

If I look petrified in the video, it's because I've already had to climb under a set of ropes (the entire section is roped off from visitors) and all I can think about is a heavily armed man running up and yelling at me, since the site is located in a military zone. Also, as my husband often reminds me, I am not a person who likes to break the rules.

As we began to make our way back to the bus, my husband said to me, "Did you say a little prayer?" And because I didn't want to admit that the only prayer I said was, "Please, God, don't let me get in trouble for being down here," I said "yes" and continued walking. 

"I feel like I could cry," I said to him a few moments later. And it was then that I realized there was only one prayer to say: thank you.

It never occurred to me in that moment to ask God to 'fix' Liam. It didn't occur to me to pray to Jesus and ask him to help Liam walk.

It never occurred to me to ask for anything. I only felt an overwhelming sense of gratitude.

When we started on this journey almost five years ago, I never dreamed I'd be at this place. I spent the last four months of my pregnancy focusing on the things my little boy would never do. I spent those months wishing away his Spina Bifida. Five years ago I would've been our tour guide. I would've seen a little boy in a wheelchair and thought, this child could use a miracle.

But now I know the truth: we don't need any miracles.

Because we already have one.

  
"So much has been given to me. I have no time to ponder that which has been denied."
- Helen Keller





More pictures from our trip...

 

On our way to the River Jordan!

Click HERE for video if you're on a mobile device: "We're going to the River Jordan!"

Enjoying his treats from friends we met along the way. Liam came home from the River Jordan with a Jesus necklace, a rosary, and delicious marshmallow cookies.

Mommy & Liam at the Dead Sea

Floating in the Dead Sea!

Click HERE for video if you're on a mobile device: Liam Floating in the Dead Sea!

On the drive to Petra

Hiking in the Middle East

Family Picture at Petra

Our little world traveler on the flight back to Kuwait 

We Don't Need No Stinkin' Surgery!

Well, friends, we had a very productive month-long stay back home in the States. We've been back in Kuwait now for about a month, and I've been majorly slacking when it comes to the blog -- mostly because I've been binging on the new seasons of Sons of Anarchy and Teen Mom 3 and Dancing With the Stars and The X Factor. What can I say?! I missed A LOT of my shows when I was home. 

So we had two major things to check off our to-do list while we were home: get all of Liam's doctor appointments taken care of AND figure out exactly where we want to buy/build our first home. I am happy to say we were able to check off both items. We got all of Liam's appointments taken care of, which, trust me, is no easy feat since it typically involves five hour drives and some very long days at the doctors office. Luckily, Liam and I are pros when it comes to spending entire days at the SB clinic -- we've been doing it since he was three weeks old after all. Liam's Daddy??? Not so much. Luckily he has the incredible ability to take cat naps just about anywhere...even in the doctors office. :)

We also figured out exactly where we're going to build a house. That's right... we just signed the papers to begin building our very first home! Construction will begin in just a few short weeks, and we'll be moving back to Illinois this April! Well, Liam and I will move back in April, and my husband will follow about nine months later, once his contract in Kuwait is done. The house will be equipped with everything Liam needs -- wide doorways, roll under sinks, a roll in shower, etc. Can you imagine what sort of independence that offers?! It makes my heart so happy to know that he'll have absolutely everything he needs. 

We pretty much knew which subdivision/school district we wanted to build in before we even went back to the States, but we wanted to make sure we ruled out all the other options. So we hired a realtor and spent a couple days looking at some already existing homes just to see if it made sense to buy a house and then spend the time and money modifying it to suit Liam's needs. We also checked out a lot of the other subdivisions in the area. In the end, we decided to build a brand new home in the subdivision we had originally planned on, but I'm still glad we spent the time exploring all our options. I'm hoping it will cut down on the "buyer's remorse" that I so often hear homeowners talk about.

But enough about that. I'll share more details about the house later. Now for the really good stuff: we received some very exciting news from Liam's doctors. 

You might remember -- if not you can read about it here -- I mentioned that part of the reason we planned on moving home this spring was to take care of the couple of surgeries Liam would need before he started preschool in the fall. Well, guess what?! He don't need no stinkin' surgery! That's right! How does that happen you ask?! Magical Mommy physical therapy -- at least that's what the orthopedic surgeon tells me.

Trust me -- no one is more shocked than I am. I went into that appointment feeling extremely anxious because I was convinced Liam's orthopedic surgeon was going to tell me I ruined his life because I took him out of physical therapy in order to move him to Kuwait (even though these were decisions that were thoughtfully made and previously discussed with Liam's doctors and therapists). But sometimes I am a crazy person, so the little voice in my head had convinced me that I had permanently screwed up my child's life. Not only did Liam's orthopedic surgeon NOT accuse me of ruining his life, but she actually said we get the credit for Liam not needing another foot surgery. I guess the fact that I've had so much time to work with him since moving to Kuwait made all the difference.

We'd been planning on another foot surgery on his more problematic foot for years now, and never in my wildest dreams did I think his foot could actually be corrected with physical therapy alone -- that's how much tighter and more constricted it was than his other foot. Apparently, since Liam learned how to stand up to the furniture earlier this year, he has been stretching out his feet little by little. Every time he stands up and puts weight on his feet, they get stretched a little bit more. Voila! Now, there is only a five degree difference between his "good" foot and his "bad" foot. Incredible. 
 

Check out those perfect feet!

His doctor also couldn't get over the fact that his adductor muscles (the muscles in his groin/inner thigh area) weren't nearly as tight as they had been when she last saw him. Without even realizing it, Liam had been stretching those muscles out. A few months ago, he learned how to get on and off his Plasmacar, and climb up his slide and get himself into a seated position -- both of which require him to lift each of his legs up and over, stretching out his adductor muscle in the process.

They also couldn't get over how much stronger his quads are now than they were when we did his last muscle test. I have decided all of this means I can legitimately include "physical therapist" on my resume now. I have been trained by the best, after all. :) 

We received more good news from Liam's urologist as well. Liam's kidneys look great, his bladder looks great, and not even a single infection! Everything looks great! So great, in fact, that the surgery we discussed during his appointment last year is no longer necessary (at least not at this point). His urologist thinks all we need to do for now is "watch" him. I mean, we'll still continue to catheterize every three hours, but he doesn't need any surgical intervention as of now. She doesn't even think it's necessary to continue doing his yearly urodynamics testing (CMG) -- that's how great everything looks! We'll still continue to monitor his kidneys and bladder with ultrasounds every six months, but no more hour-long urodynamics testing!
 
His urologist also said we could start getting him comfortable with the toilet, so that we can eventually figure out how much control he has. And as you can see, Liam is very excited about his new bubble guppies potty seat:

 

I will update you more on Liam's other progress later. He has a new RGO walking brace that we're working with -- he outgrew his other one -- and the child moves so fast I can barely keep up with him! And he is also loving the freedom and independence his new wheelchair brings.

So much to be thankful for. Life is good.

Ten Things of Thankful

“If the only prayer you ever say in your entire life is 'thank you', it will be enough.”
                                                                                                                   -Meister Eckhart

1. I'm thankful that our mail no longer consists of piles upon piles of medical bills, only lots of credit card offers.

2. I'm thankful that because Liam's medical bills are finally paid off, and because we've saved money by living in Kuwait for the past year, we're now in the position to buy, possibly build, our first home.

3. I'm thankful that someone from the Spina Bifida Association contacted me a couple days ago, asking if they could feature Liam's SB Story in their October fundraising appeal. I said yes, of course, even if my husband does occasionally call me a "stage mom," and jokingly refers to me as "Kris Jenner." But it's like I tell him: whatever we can do to raise SB awareness (and funds) is fine by me. If it's wrong, I don't wanna be right.

4. I'm thankful that Liam no longer needs my help getting on and off his Plasmacar. I'm thankful that he's learned how to climb onto his slide AND turn his body around so that he can slide down on his butt, instead of just his stomach. These little bits of independence make my heart swell.

5. I'm thankful that I have a mom who loves me so much that she called me last week and actually said this: "I need you to buy a box of dark hair dye and a head covering just in case DeMarko has to get you out of the country quickly. He and Liam can blend in, you cannot."

6. I'm thankful that Liam has started talking -- really, started talking. I am aware that not all parents get to experience this joy, and I feel grateful for it every day.

7. I'm thankful that my husband passed another one of his computer certification exams last week. I'm thankful that he's working hard to enhance his resumé, in preparation for our move back to the states (and trying to find a new job) next year.

8. I'm thankful that despite being born with Spina Bifida and Hydrocephalus, Liam is as healthy as a horse. This isn't always the case, and I am fully aware of what a real blessing it is. 

9. I'm thankful that we'll be heading back to the states in less than a week. I'm thankful for upcoming date nights with my husband, lots of time with family, and a much-needed girls' night out.

10. I'm thankful that readership of my blog is growing, as my husband says, exponentially. I'm thankful that people actually care about what I have to say, and that so many of my friends and family, along with some new bloggy friends, have been so supportive. In fact, I'm so grateful that I am running a $75 Cash Giveaway, as a way to say thank you to my readers AND celebrate my one year blogiversary. Can you believe September 28th marks one year since I started blogging?! And, okay, so maybe another reason I'm doing a giveaway is to increase traffic to the blog and gain some new followers -- but a girl's gotta do what a girl's gotta do, am I right?! You can enter the giveaway in the Rafflecopter below.

Ten Things of Thankful Hosts:
A Fly on Our (Chicken Coop) Wall, Considerings, Finding Ninee, I Can Say Mama, I Want Backsies, Steps into Parenthood, Thankful Me, The Wakefield Doctrine 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  
$75 Cash Giveaway to Celebrate The Pink Roller Coaster's One Year Blogiversary!

This giveaway will end at midnight on Saturday, September 28, 2013.
Winner MUST have a PayPal Account. You must be at least 18 years old to enter.
Giveaway is worldwide. Void where prohibited by law.

a Rafflecopter giveaway
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"I Can't Do It": K(no)wing Your Child's Limits

After almost four years on this SB journey, Liam finally uttered the words I've been dreading: "I can't do it." It stopped me dead in my tracks. I immediately responded to his frustration -- we had been working (again!) on trying to get him to pull his walker forward, after taking steps without wearing his RGO walking brace -- with the old cliché about trying again (if at first you don't succeed), and then I very enthusiastically said something about how "we don't say can't in this house!"

But if I'm being totally honest, his words rattled me. Shook me to my core. I sat back and wondered if maybe he was right. Maybe he couldn't do it. Maybe he couldn't move his walker forward, while simultaneously using it for support. Maybe his walker would only ever be used as a support for standing. Maybe this was as far as he was going to get in the walking process. Maybe this was as much as his body would allow. And for a little while I was devastated.

But then, eventually, I got to thinking about how long it took to get him this far. I thought about how I strapped him into his RGO walking brace, and walked him around our house every freakin' day, for over a year before he would finally take steps on his own. I thought back to when I was trying to teach him how to crawl, and I would follow behind him, moving one arm, one leg, one arm, one leg, for what seemed like forever. I remembered how everything Liam has accomplished, every milestone he's reached, he's done in his own time, not mine. 

So, for now, I say NO. No, we will not stop trying. No, this isn't as far as he goes. We will try, and then we will try again. 

Love: Then and Now

All week long I've been trying to think of things that I used to love. I'm drawing a blank. 

Okay, so I'm not drawing a total blank. Maybe oreos and Subway cookies and large pizzas all to myself keep coming to mind. But I can't possibly write about how much I used to love food. I can't. I won't! I'm going to save the last shred of dignity I have left, and not talk in depth about how much I used to love moonpies.

But since I can't quite remember anything substantial that I used to love, here are some things that I love right now:

I love that at least once a day, Liam leans into me and says, "I love you, Mommy. You're my best friend."

I love that as soon as he hears his Daddy's car in the parking lot, Liam starts crawling for the front door, yelling "Daaaaddddyyyy!" 

I love watching Liam crawl up to the couch, pull himself to stand, and then take a couple of small steps towards the couch -- something he couldn't do six months ago.

I love Liam's misuse of pronouns. I love that when he wants to be held, he puts his arms out and says "hold you again." And when he wants to play, he says "come play with you." I haven't yet figured out if this is just bad grammar or a very effective manipulation technique, but either way it works. 

I love that every night when we climb into bed to read a bedtime story, Liam says "I'd really like to cuddle, please."

I love that in the middle of the night, he'll sometimes wake up and say "no take nap." Okay, so when I'm exhausted or trying to get stuff done, I don't exactly love this little habit of his, but sometimes it is surprisingly adorable.

I love the way Liam says "awww, he is so cute," anytime he sees an animal on t.v.

I love watching him do push-ups with his Daddy. 

I love when Liam does something funny, and, out of the corner of my eye, I can see his Daddy crack a smile.

I love my perfect, little family.

I'm sure I used to love a lot of things. Before Liam. Before my husband. But I can't seem to remember any of them.

This has been a Finish The Sentence Friday post. Today's sentence is: I used to love... 

Linking up with these fine ladies:
Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I Get Another Bottle of Whine?
Stephanie: Mommy, for Real
Kristi: Finding Ninee

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! 

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.