MRI, Sleep Study, and Surgery

The past couple of months have been busy, emotional and kind of a blur.  We had met with Dr. Krakow at Cedars for his 4 month appointment and since he was having night sweats and some trouble breathing while sleeping, she ordered an MRI to assess his spinal cord and whether or not there was severe compression.  

On September 6th, we returned to Cedars for the big event.  Luckily, I was able to have the day off from my sub-internship but I was in the middle of residency applications so stress was at an all-time high.  While we were in the imaging waiting area, I was frantically emailing attendings about getting my letters of recommendation turned in on time.  An attending I had when I did my internal medicine rotation at Cedars was going out of town that day and I was trying to catch her before she left.  I was debating on whether or not I had enough time to run to her office while we were waiting for Sam to be called back for his MRI.  Then a miraculous thing happened.  Just as I was leaving the waiting room, I spotted my attending IN the same waiting area reading the email I had just sent her!  The look of surprise on both of our faces was probably insane...we were both pretty speechless.  She was waiting for a patient who was also getting an MRI and she was leaving out of town right after that.  If I had gone to her office, I would've miss her completely and possibly missed Sam getting prepped for the MRI.  She agreed to send in her letter within a week and was ecstatic to be able to meet Sam and Kael.  It was the most amazing thing and much needed during that moment of stress and confusion.  

We then got taken back to prep for Sam's MRI.  His anesthesiologist was a really kind woman who  had extensive experience giving anesthesia for kids with achondroplasia and reassured us that every precaution will be taken for Sam's neck and spine.  Kael and I then waited about 2 hrs (we got empanadas across the street) until we could meet Sam in the recovery area.  Seeing Sam with an oxygen mask on and multiple wires and tubes hooked onto him was heartbreaking.  That moment somehow brought out an unbelievable and tangible protective instinct in me that seemed to push every other thought or emotion out of my head.  I couldn't have helped it.   Being a mother has changed me physiologically and that tie that holds me and my child together is forever a part of who I am.      

Slowly waking up after his MRI

The results of the MRI showed compression of his cervical spinal cord and decreased flow of the cerebrospinal fluid around that area.  What's unusual in Sam's case is that he has increased compression when his neck is in extension (head looking up).  Most achon kids have it when they flex their necks.  Due to those results, we got a sleep study to see how it was affecting him clinically.  We did our sleep study at UCLA and it was kinda fun actually.  It felt like we were at a hotel.  A hotel where they stick 20+ wires to your child and videotape you while you sleep.  Yeah ok it was a little weird.  The tech came in around 9:30 to get things set up, left around 10ish, came back in around 2am to adjust a few wires and then woke us up around 5am to check out.  Despite the lack of sleep, Sam did relatively well except for a mini meltdown right after the wires were put on (see below).

Happy kiddo for now

Watching TV with daddy

Mini meltdown :(

So the sleep study ended up showing a combination of central and obstructive sleep apnea.  Central sleep apnea is caused by the compression in his spinal cord, which affects the brainstem.  That is where the respiratory control center is that tells your body to breath.  For Sam, he'll occasionally stop breathing and then "snap" out of it after a minute and he'll overcompensate by increasing his respiratory rate (hyperpnea).  The obstructive sleep apnea is caused by the increased size of the adenoids and tonsils in comparison to his facial and airway bony structures.  This is not as serious as the central sleep apnea and can be corrected later with CPAP machines or removal of the tonsils/adenoids.

After much discussion with the neurosurgeon Dr. Danielpour, Dr. Krakow, other parents of achon kids, and, maybe most importantly, Kael and the rest of the family, we've decided to go ahead and have decompression surgery in his cervical spine.  It's scheduled for November 6th and we'll expect to be in the hospital for about 3-4 days.  Wish us luck and we'll do a post to update everyone shortly after.

Much love,
Heather

My First Lesson in Glider Aerobatic Flying

Heather and I took a quick weekend trip out to the desert to spend time with family. I made sure to take advantage of the opportunity to go fly a glider plane and log some instructional flight time. What a CRAZY ride!

Carolina Beach Getaway

About a month ago we had an amazing family reunion in South Carolina.  Kael's family is really spread out so having everybody in one place takes a little a LOT of planning.  We settled on Myrtle Beach and stayed in a beautiful beach house complete with pool and widow's walk (another way of saying roof deck I learned). 

Kael, being the wonderful photographer and videographer, put together this awesome video with all the highlights.

The adults also played Ticket to Ride three nights in a row.  Kael now has a personal vendetta against the dreaded purple tunnel he was never able to get. He's still a little bitter about it... haha

Since we were so close to Brit, my best friend from high school/college, we drove up to North Carolina to see her and her adorable kiddos.  Of course it wouldn't be complete without our other bestie Melissa so she decided to stop by too.  The three amigas...united once again. :)

For some reason North Carolina is full of these creepy deserted cabins.  We must've passed 5 of them on our way to Brit's.

And now some cute pictures of Sam on the trip for your viewing pleasure:

Already 3 Months

Our SamBam is officially 3 months.  How did we get so lucky to have such a happy baby?    

Here's a little video of his first three months...just iphone videos compiled together.  I had plenty more footage but I had to set a 3-minute limit for myself.  I think it's all cute but a 60-minute video might be overboard.

Here are some of his favorites right now:

Favorite word: "ergwah" "goo" or a combination of the two.

Favorite toy/cuddle buddy: Marley our cat.  Sam's little head of hair is too tempting for Marley...he is constantly trying to cuddle with Sam and groom his hair (see pic below).     

Favorite song: ABCs

Favorite teether: His fingers...the more he can fit in his mouth the better.
Favorite blankies: Aden + Anais Swaddle Blankets Yes literally everyone and their mom has (have? ) these...but for good reason
Favorite pass time: Hanging out in his activity gym. It's great for his back and he loves trying to grab the owl. 

Surprise Utah Trip

Just as I was running out of things to do around the house, a friend had the brillant idea to go to Utah for the week.  I wasn't too thrilled about being in a car for 10 hours with a 2-month-old so I splurged and used all of our credit card points!  Being on the plane with Sam wasn't too bad...I sat by a Mexican cholo that turned out to be the sweetest teddy bear and couldn't stop talking about his family.  I also sat by a fancy-schancy hipster gay guy that definitely did NOT like Sam.  First thing he did when he sat down--put down the arm rest and took a fake nap.  Haha whatever.

We visited a whole bunch of friends and Sam may have been slightly overstimulated/cranky from all the different sounds and people but he eventually got used to it.  It was so fun seeing my sis-in-law Evelyn and her family.  Her kiddos are so cute and they couldn't wait to meet Sam.  When Evelyn first told them about Sam's dwarfism, Natalie asked if he was gonna be bigger than a stick of butter!  Maybe she thought he was gonna be fairy-sized? Haha I love it.  Evelyn says Kai prays for Sam at night asking that he won't get bullied.  Awh...I can tell they love him so much already.  We're so blessed to have such wonderful family members!  

Speaking of family, my dad and stepmom could not get enough of Sam.  They were trying to put Sam to bed one night and it became a joint effort with my dad holding and patting him and my stepmom holding his pacifier and stroking his head (picture below).  It was too cute.  It made me happy seeing them so happy.  They both got teary-eyed saying bye to Sam when we had to leave.  It made me stop and realize how important our family relationships are and how essential it is to nourish those relationships.  It's so easy for me to get wrapped up in school, work, friends, whatever but when I remember to spend time with those that know me best, I always feel centered again.    
   

First Appointment

We took Sam to his first appointment with a skeletal dysplasia specialist at Cedar-Sinai.  They measured him and charted him on a special growth chart for kids with achondroplasia.  He's at about the 65th percentile for both head circumference, weight and height.  The head circumference is something we have to monitor regularly because there's a higher chance to have fluid buildup in the brain (hydrocephalus).  The opening at the bottom of the skull where the spinal cord goes down (foramen magnum) is a lot more narrow in people with achondroplasia so we have to make sure there's no warning signs that his brainstem is being pinched.  She checked his fontanelles, muscle tone, breathing, reflexes, and veins on the forehead and didn't see anything abnormal so she's happy that Sam is doing so well.  She says we may want to get a CT or MRI to assess his brain but CT exposes him to radiation and MRI requires sedation which can be risky so for now we'll just watch him closely.  We asked her about this bump in his back and she said it was a gibbus and fairly common in achon babies.  Once they develop better muscle tone and trunk strength, it should resolve on its own.  She also noticed Sam has torticollis which means his head tends to turn right more than left.  Babies can get this because they're lying on their backs all the time and don't get enough head movement.  She told us to stretch and turn his head side to side everyday and it should go away.  That was pretty much it for his first appointment.  We'll go back when he's four months just to make sure everything is going ok.

He also just got his 2 month vaccines a couple of days ago...poor baby :(  When we got home after his shots, he was in the best mood for some reason so I of course had to take pictures.  I love this little guy.    

I'm two months old!

All Hail Kael/Kale!!

Yes I know Kael is awesome but it took me a while to discover my love for kale.  Kale, that superfood everyone is obsessed with but the few recipes I tried in the past really couldn't convert me.  Unless it was blended up in a fruit smoothie, I really had no desire to eat it in it's leafy form.  That is...until I had the kale salad at Veggie Grill.  The All Hail Kale Salad.  I think it's the papaya ginger vinaigrette that makes it so delicious.  I easily found the copycat recipe online and did my own little tweaks to it.  Served with some grilled chicken breast and voila...healthy awesome meal!  Here's the recipe...WARNING: Like me, you may be dragged onto the kale bandwagon after eating this :)

Ingredients:
1 bunch of kale (or for lazy cooks like me...1 bag of washed and cut kale at Trader Joe's)
½ cup of quinoa, cooked
1 cup corn salsa (recipe below)
½ cup red cabbage
¼ cup candied walnuts
1 cup ginger papaya dressing (recipe below)

Steps:
1. Prep Kale-This is key!  Kale needs to be "marinated" beforehand so it's not so tough.  First remove spines and chop into bite-size pieces.  Rinse in cold water and dry (or use handy salad spinner).  Put in large bowl and mix in dressing and quinoa, making sure everything is coated.  Refrigerate at least 2 hours but overnight is ideal.
2. Before serving, top kale with corn salsa, cabbage, and walnuts.  You can drizzle a little more dressing on top for extra flavor

Ginger Papaya Vinaigrette 
1 Tbs fresh ginger root
½ cup lime juice (I used some lemons too cuz I ran out of lime)
1 cup fresh papaya
¼ cup rice vinegar
½ Tbs sea salt
1 cup canola oil (original recipe called for 2 cups...um totally overboard)
½ cup evaporated cane juice or granulated sugar

Steps:  Peel ginger root and papaya, combine with all ingredients to blender (except oil) blend until smooth. Slowly drizzle oil while continuing to blend until dressing emulsifies, add to container and
refrigerate

Corn Salsa
2 Roma tomatoes, diced
1/3 cup red onion, diced
1/4 cup cilantro
1 cup roasted corn (lazy cooks get the frozen bag at Trader Joe's and thaw the amount you need before making the salsa)
1/2 tsp sea salt
1/2 tsp black pepper
2 Tbsp lime juice

Sam's One Month Photos

 Yep it was quite the Alden photo shoot at the park...Sam wanting to take a food break, me sitting on an old chewed up tennis ball and Kael setting up camera lenses and tripods.  But we got at least a few keepers so overall a success!  Still can't get over Sam's crazy GQ hairstyle.  What a little stud muffin.

Baby Blessing

We had a wonderful baby blessing on Easter Sunday and were so happy to have family in town.  Kael's mom stayed for a few days and helped out with EVERYTHING!  It was so nice for Kael and I to take a break and Sam totally enjoyed having grandma around.

Grandma and Sam spending quality time together

Unfortunately we didn't get any great pictures of him in his blessing outfit but it did happen...promise!  My dad and stepmom only got to spend a few hours with us so they tried to soak up every minute they could with Sam.  

Sam and Grandpa

 

The Beginning.

Did we seriously just survive?  I can't believe four weeks have already passed by since we welcomed Sam into our lives.  It's been incredible and surreal as well as exhausting and overwhelming.  A few weeks before the c-section I decided I was going to start blogging about Sam and other aspects of our lives.  For family, for friends, for ourselves to document and remember.  The idea of blogging has always been daunting for me because I knew I would put too much pressure on myself to make it perfect.  So...I am now telling myself to ditch this idea out the window and just write and post whatever I want.  Who cares if it's not the most well-written or beautifully photographed.  It'll be what Kael and I make of it.  Here goes...

When Kael and I found out I was pregnant we were overjoyed.  After almost two years and a few rounds of infertility treatment, it was actually happening.  I started a week by week pregnancy photo journal and went religiously to my prenatal visits.  At 34 weeks, I was in the doctors office for a routine ultrasound and the doctor mentioned Sam's femur lengths were shorter than expected.  After doing a full-scale ultrasound with the ultrasound specialist and maternal fetal specialist, they confirmed that Sam has a type of dwarfism or skeletal dysplasia.  I was seriously speechless and overwhelmed.  We had to wait over the weekend until we could meet with a skeletal specialist to tell us what form Sam had.  Google of course freaked us out with all the possible lethal forms of skeletal dysplasia but we tried to be optimistic that our Sam was healthy and could live a productive and long life.  On Monday, we met with Dr. Krakow at Cedars-Sinai who told us the news that Sam has achondroplasia.  It was a relief because that meant that he wouldn't have a shortened life expectancy and would be developmentally on track in every way except for his height.  He would take slightly longer to crawl, sit up and walk.  I would have to get a c-section due to his larger head size and the risk of brain hemorrhage and cervical spine issues during a normal vaginal delivery.  So we started researching and reaching out to parent groups and LPA (little people of America) to get all the info we could about Sam's condition.  What we found was encouraging.  We knew there would be challenges but what parent doesn't have challenges...right?  We just kept on preparing for the big day and praying that Sam would be healthy.

On March 8th, our 7-pound and 10-ounce baby arrived at 9:08am and graced us with a gorgeous head of hair.  He was totally healthy and came straight to the recovery room with me after the c-section.  The 3-day hospital stay went relatively smoothly despite getting little sleep but having that automated, remote-control hospital bed was AWESOME.  At home, it took me (and Kael) twenty times the effort just to get me in and out of bed.  So glad I'm now recovered enough to get out of bed myself.


Some things we've learned about Sam in the first four weeks:
-He loves sleeping with one arm (or both arms) up by his head.
-He's constantly doing the "one-eyed stink face" especially when he's focusing on eating.
-He is one gassy baby...Kael's pretty proud and says our son is a real man.
-He's super strong!  When he got his circumcision, he kicked his legs out of the holders and the doctor was shocked how strong he was. 
-His arms are CARRRAZZY.  Maybe this is the case with all babies but Sam loves waving them around and shakes his fist when he gets irritated...it's so hilarious.
-His hair is uncontrollable.  like father like son.