2 years ago!

Two years ago today Chandler had his Tethered Cord surgery at Legacy Emanuel Hospital in Portland. I reflected on his surgery last year, and figured I’d do it again, but this time focusing on his actual growth. You can read last year’s here: 1 year later reflections, pt 1 1 year later reflections, pt 2

Since I wrote those two posts, he’s blossomed into a kid that is willing to push himself and test his body. He’s finishing first grade, is reading with very little help, and getting ready to test for his 2nd degree blue belt in Taekwondo next week. He’s a boy who has overcome adversity and did it with a great attitude and smile. I am so proud of this kid!!! You can see below the development of his gross motor skills. From where he could kick 10-12 inches off the ground to where he is now kicking at 4 FEET off the ground/head level!

Chandler’s first belt testing at Taekwondo, July 2010.
His first belt test out of Tiny Tigers. August 2011
Chandler doing his Poomsae at belt testing, April 2012. 
Chandler doing his Ax kick drill at his head level!
This is where he is now, from that first picture above!

After that last photo, Chandler and I both passed and started the Blue Belt class, AKA intermediate level! To see where he’s been to where he is at, I am so thankful for all that this sport has given him: confidence, strength (both mental and physical), self-esteem, passion, commitment to something, a passion for becoming something, and a love of a sport that is all him! I love that he asks me if we are doing things right or if he needs to work on something.

Blue belts, April 2012

This morning he asked me if he was doing his jump roundhouse correctly, because that is the kick he’s breaking his board with next week! I can hardly wrap my head around that he can have the coordination to do it! 2 years ago, he could barely walk up stairs without grasping the rail and really working at it. I love that this is something we do together, but not as a team, but individuals. I love that he knows how to succeed in something that will make him a better boy/man. When he finally earns that black belt, I know when it is tied on him and I will have a tear in my eye, knowing where this brave, kind, gentle soul started out when he was 5 years old.

For all those who supported Chandler (and our family) thank you for your love and support! And to Master Jim Null, you have been the best trainer/coach for him without a doubt! Thank you!!!  Without you he wouldn’t be where he is today!



Reflections, 1 year later, Part 2

Chandler testing out the mask

So we had a tour with the Child Life person at the hospital and was given a bag with things to get Chandler mentally ready for surgery. They gave us bandaids, alcohol swabs, gloves, mask, a doll with a hospital gown on as well as a couple beanie babies and even a mask that they will use for administering anesthesia. Since both Chandler & Lincoln were there for the tour they both got a bag. It was so awesome. We played with those things, Chandler liked talking like Darth Vader with the anesthesia mask on. And he was comfortable with it. Whew.

Chandler & Dad in pre-op

The morning of his surgery we went to the hospital, he was going to be having surgery around 9 am, he was pushed back due to an emergency. So we got to the hospital, and were all checked in. He got changed into his outfit and we waited. He was all smiles as we waited. He was nervous when they finally gave him some meds to make him calm and loopy (see video in link below-it’s funny). 

Watching Star Wars

We waited for him to come out of surgery with his preschool teachers. Our pastor offered to come as well, and it was so sweet. Grandma Brown had Lincoln at the house, but she knew we’d be well taken care of since Chandler would be under her friend, Jane’s, care. Jane was such a blessing to Pat, and was there right after Lincoln was born. So when Dr. Wheby came out to give us the scoop of how his surgery went, we were in great company. Turns out Chandler’s spine had an unusually thick filum terminale, which is a cord that anchors the cord to the tail bone area. Normally it’s about 1mm thick and acts like a rubber band. Chandlers, however, was 5 mm thick and was more like a rope; thus the spinal cord didn’t have room to move freely or be elastic. She just cut it, so he has a dangling spinal cord. 🙂

Dad surprises Chandler in the garden

Chandler had to lay flat for 24 hrs, and it was not as hard as I thought it would be. But man, the bed sucked for me. I totally couldn’t imagine having to be there for more than 1 night. He had a hard time coming out of the anesthesia, couldn’t calm down, had the shakes really bad…nothing a mama wants to see! Once we got to this room, Jane got him some Morphine, and he was much better, asking for his DVD player and Star Wars toy that was in the car (for post surgery fun). He was good having the IV in his hand, and was brave when they pulled it out.
Once he was cleared to be more vertical, the next morning, he got to go in the wagon and see the garden,and then it was time to be discharged and head home! 24 hrs in the hospital! Amazing!

Recovering at home on the couch.

When we got home, he did a full Star Wars (originals) marathon! We had to keep Lincoln off him, which was a hard one to do.

Dr. Monica Wheby & Chandler at his Post-Op check, cleared for activity!

After 4 weeks, Chandler was enrolled in Taekwondo at Family Kicks Martial Arts. When he began TKD: he couldn’t bunny hop, balance longer than 3 seconds on 1 foot, his run was really choppy/spastic, His kick was about 8 inches off the ground. Needless to say, he was like a 3 year old (per his PT eval).

Ax Kick, when he began 7/11

Now, 1 year later (11 months since starting TKD), he is a yellow belt! He’s confident, has balance, jumping capabilities (he jumps from the 2nd step at the house!), his gait is much more fluid, he has more range of motion in his kicks. It’s truly amazing where he is now. I never (ever) regret the decision to do the surgery. I regret that I didn’t listen to my mother in law, who suspected he has a tethered cord when he was 8 months old. I am so grateful to all those doctors who helped us help Chandler. I feel like our family was so blessed to be able to help Chandler. I know there are so many out there who are not either as lucky or cannot afford medical care.

So, I am thankful for all those who prayed for us, who visited Chandler, and have been helping us work with him to become the young boy he’s meant to be. I am so thankful to his Speech teacher (Mr. Minear) and his Kindergarten teacher (Mrs. Bacos) and especially Master Jim Null & Master Adrienne Null. They have made Taekwondo a form of physical therapy that he loves. Watch out world, Chandler’s got plans to be a black belt! And if he’s anything like his parents, he’ll be determined to do it!

Training w/ Uncle Vino, check out the height 3/11

Link to many photos related to his surgery 

Reflections, 1 year later, part 1

Today, I begin this post to reflect on the last year. June 7th, 2010 was the date Chandler had surgery for his Tethered Spinal Cord.

What Is a Tethered Spinal Cord?

A tethered spinal cord is a disorder in which a child’s spinal cord is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal.
As a child grows, the spinal cord must be able to move freely inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can permanently damage the spinal nerves. Seattle Children’s Hospital

 For Chandler, he had symptoms from the time he was 3-4 months old, he didn’t crawl until 12 1/2 months, or walk until he was 18 1/2 months. Once he was walking, he ran with an odd gait, nothing that would signal “get him to the dr,” he couldn’t walk up the stairs or down-he’d crawl. His balance was off. But again, his Dr. wasn’t worried and took the “wait and see” approach. Fine with me. I wasn’t worried.

When we started looking into additional speech therapy for his Childhood Apraxia of Speech, we decided to have him evaluated by a developmental pediatrician. Since our insurance wouldn’t cover speech unless it was due to an accident or birth defect (think Cleft Palate). So we were going to try and have it diagnosed as a Neurological Disorder, which it is!

After meeting with the Dev. Ped. she suggested having a Physical Therapy Evaluation, since he was behind in gross motor skills for an approximate 5 year old. Ok, great. We had the PT eval done at Legacy Emanuel Children’s Hospital, and we got a great PT (a friend of Grandma Brown’s). She found that Chandler was at least 2-3 years BEHIND where he should be. She also saw that he was very weak in his lower body, but great in his upper body. She suggested seeing Dr. Mark Shih, a Neurologist (who also is a friend of Grandma Brown). We saw Dr. Shih, and he noticed Chandler’s reflexes were hyper, meaning they bounced way too much. He was leaning when he bent over at the waist (one side lower than the other). With the PT eval, his constipation history, developmental delays, he ordered an MRI.

Chandler’s brain. Pretty cool!

The arrow points to the thickened part of the tether.

We did the MRI, where Chandler was sedated. He was a trooper! And very brave! After reading the MRI, Dr. Shih, confirmed what we suspected. Chandler was born with Spina Bifida Occulta. He had a birth defect. But this was nothing compared to what my friends’ son, Christopher, was born with. Or another friend, Gina, who’s son has to be in a wheelchair most of the time. Chandler can walk, run, and jump (not very well). He referred us to a woman who would eventually do surgery on Chandler’s spine.

Dr. Monica Wheby, a pediatric Neurosurgeon at Emanuel Children’s Hospital, met with us after Grandma Brown called in a huge favor to have him seen a month later (normal waiting time was 5-6 months). When we met with Dr. Wheby, she did another physical exam, checking the same things that Dr. Shih did. She concurred with his diagnosis, and checked Chandler’s MRI and showed us what was causing the problem. Of course, we’d know more when she was in there, fixing the problem. But she scheduled surgery 10 days later, after Rob’s last final for the term.