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!

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Lego Birthday Invite-How to!

I am working on Chandler’s 7th (gasp) birthday party. It’s a Lego theme. 🙂 No surprise there. So after playing and having a ton of “waste my time” time on Pinterest (what?! You don’t know what I am talking about?! You must find out what this amazing, awesome, place is, like yesterday!) I found some ideas for his party. Here’s my board, you can find some ideas here, need an invite (It’s invite only), leave a comment. I’ll hook you up. Melissa on Pinterest

Supplies:
Card-stock in kiddo’s favorite color or Lego colors (yellow, red, blue)
Photo printed
Paper cutter
2″ diameter circle cutter or circut
Black thin Sharpie
Foam Adhesive circles
Double sided tape

Chandler’s invite is a 5×5 inch square of  card-stock (scrapbook paper I had laying around, in yellow). I snapped a photo, and edited it in a graphics program (Fireworks CS3). He’s holding a Lego Base Plate with Legos around and the number 7 in the center (Thank you Pinterest). I played with the photo, composition and how I wanted it to look. I shot him on the patio and I was up on a chair. I knew I needed the shot to crop to 4×4″ square. I think I took 25 shots. I did my editing magic making him black and white and keeping the Lego 7  in color. Sent to Costco, had them printed on 4×6, and then cut them down to size. Then I used some double sided tape to attach. This was the easy part. I added “Chandler is” to the top since I figured, I should make it a bit more obvious. 😉

I bought some Foam Adhesive Circles at Michael’s to give the Lego Stud 3D effect.

I also bought a 2″ diameter circle punch to cut out 70+ circles. Much easier and worth the $8-10! If you have a Circut, then you could use that I am sure. I just don’t have one, yet. LOL. You can see above how the back part of the invite is done.

I wrote all the details on the circles with a thin black Sharpie. Yes, hand written, it does suck, but whatever.  I added 4 foam circles to the invite, making them evenly spaced to give the 4 stud Lego look. The foam circles stick out just enough to give it definition. 

I added a map that I had drew in my graphics program, that included the address of the location as well as my cell if they get lost.

Last but not least, I had some orange envelopes from a previous b-day invite, so I used those. Nice and bright and it set the tone perfectly. Chandler loved his invites. And I loved the photo so much I had Costco print an 8×8″ print that I am going to frame for his party. And yes, I am giving myself a pat on the back. 🙂

Hope you enjoy! If you need a Pinterest invite leave your email and I’ll help you out. There are so many great ideas there! Enjoy!
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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.

Celery Stalk science experiement!


Chandler was being a super kiddo this evening, so I decided to break out my “teacher” hat. 🙂

We decided to play with the celery, after I begged him to have a bite of celery from his stir fry dinner (he did, this was the reward).

I told him about the experiment we did in Mr. Foote’s 5th grade class decades ago. We used food coloring in water and soaked the celery in it to see what would happen. He guessed (correctly) that it would turn blue and read (his food coloring choices). Left is his written hypothesis! He even spelled “my,” “and,” and “is” correctly! Very proud mama moment!

So here’s our photos of our science experiment!

Chandler has the supplies on the table:

  • 2 Beakers
  • Measuring cup with lots of water
  • 2 Stalks of fresh celery (ends cut off, leaves left on)
  • Blue food coloring
  • Red food coloring
  • Wet rag in case of food coloring spillage or leaks (yes, I did learn from this as Lincoln is sleeping with red hands, whoops!)
Fill each beaker with water, Chandler decided to do 400 mL in each beaker.

Then add the food coloring. Pick colors that will show against the green of the celery. Don’t do green or yellow, in other words. Otherwise you might not be able to see it.

Then have your kiddo add the celery. Take a photo and so you have something to compare it to once you check on the progress. Check back and make notes on how it’s going.


For more photos you can see this link:
January & February 2011 photos

Chandler’s journey part 1

I know I have been posting on Facebook all about the doctors appointments and evaluations and most don’t know all the details so I thought I’d get this written out. He’s being evaluated for entry into Kindergarten next year. He currently has an IFSP with Beaverton ESD, and now we are working on switching it to an IEP for Kindergarten next year. With all the evaluations we’ve found out he’s got some other issues besides the speech delay.

  • He’s physically behind (evaluated to be at about 22-40 months), he has poor balance, nervous to walk up stairs or down, doesn’t run properly, and doesn’t jump on 1 leg.
  • He has hyperactive reflexes on his legs, where you hit them, and they bounce more than 1 time (about 6 on some spots), and they shouldn’t do that. He even had one spot where the opposite leg’s spot moved, not right.

“that the reflex is hyperactive and that there is clonus present. Clonus is a repetitive, usually rhythmic, and variably sustained reflex response elicited by manually stretching the tendon. This clonus may be sustained as long as the tendon is manually stretched or may stop after up to a few beats despite continued stretch of the tendon. In this case it is useful to note how many beats are present.”

  • He’s always been chronically constipated since he was born. There was discussion he had Hershprung’s Disease (where part of the Colon doesn’t have the nerve cells to tell him it’s time to poo. Surgery fixes it easily).
  • Then his Apraxia of Speech shows that there is a neurological component to his body that’s just not working in sync.

After seeing a PT, Developmental Pedi, eye doctor, audiologist, speech language path, and I spoke with an awesome Pedi Urologist on the phone (free!), we decided to see a Neurologist.

He’s ordered the MRI to see if he has a tethered spinal cord or if he’s got something going on in his lower back that could be causing these issues. The PT thinks she can get him to where he should be by September (YAY!) but we don’t want to waste our PT visits if there is an underlying cause.

So that’s about it. It’s taken about 4 months to get to this point. If it’s a tethered cord, we’ll see the Neurosurgeon at Emanuel and she will fix his cord. From what I’ve read, she’s excellent!

More updates after we get the blood work results on the Fragile X Syndrome (doubt, but easy blood test), and then Monday’s MRI at the hospital (he’ll be under for it). Thanks for the prayers & good thoughts! It all helps!
Melissa

How to make a scoreboard headboard!

By request, here are step by step instructions on how we made Chandler Field! Total size is 55″ wide by 48″ tall by 1.5″ deep. Perfect for a full size bed. Post pictures when you are done, and if you have questions, just ask! I’d be happy to help!

Materials:

3/4″ plywood cut to 48″ X 24″ (24″ is min. but I think I’d do 30″ next time)
2-4′ long pieces of 1×4
2-4′ long pieces of 1×6
10 1″ wood screws
Additional wood screws for attaching to wall
Chalkboard paint (or plain black paint if you don’t want to be able to draw on it)
Green paint (we used the color of his room, so it was just the extra)
White acrylic paint (from Michael’s) the craft kind
1″ foam paint brushes for the acrylic paint (get a few, you never know when they break)
3″ letters for the “home, away, qtr” They are vinyl meant for boat registrations, find at sporting goods stores.
6″ Wood letters to name the Field, find at Michael’s or Joanne’s.
Wood glue for letters

Tools:
Drill & bits for screws
Sand paper
Blue painters tape in 1″
Paint supplies
Heavy weight, grips, blocks to hold letters in position while gluing.

How To:

Take one each of the 1×4 and 1×6 and stack them with the one side flush to each other, with the 1×6 is on the bottom. Screw them together using 3 screws places evenly along the 4′ length (see green circles). Repeat for other post.

Sand and wipe off dust of all wood. You only need to sand the parts you will be painting.

Paint the black first, so it can be dried first. Paint at least 2 coats, so it’s nice and black.

Paint the green posts, you will paint the 1×4 and 1×6 the tops & sides, look at picture for a guide of how it will be assembled so you don’t have to waste paint (blue numbers).
Let dry, probably overnight. Make sure black is really dry before taping off!

For the lines:

Measure up from the bottom of the board 16″ and mark the line.Then measure from the top down 7.5″ and mark the line. Do this across the board. Take 2 pieces of 1″ painters tape and follow the lines across the top (this makes the top line under the name)

Now measure from the left 15″ below where the line will be and mark it. Then mark 16″ from the left. Place the right side of the 1″ tape on the 15″ mark, then place the left side of the tape on the 16″ mark. Making a 1″ black stripe to be painted. See photo for reference measurements in red. Repeat for the right side.

Using white paint, paint the taped off areas with a foam brush. You will do a few coats, but it doesn’t take long for the paint to dry. While waiting, place letters on newspaper and paint the letters, again will need 2 coats. Let dry.

Once all the white is dry, you can apply the 3″ boat letters. Place them as you want, I just made a line with 1″ paint tape and placed them all on the same line. Easy.

Now take the white letters and figure out your spacing for the name of the field. Glue them on with the wood glue. Place books, heavy objects on them so they don’t move. Let dry.

Assembly:

Using the 4 remaining wood screws, attach the board to the posts, see picture for guide.
Attach to wall using appropriate anchors, or you can attach to a Hollywood style bed frame.

Chandler’s Letter word book!

Thanks to Allie’s blog, http://www.notimeforflashcards.com/ we spent an hour shooting pictures around the house last sunday while Rob played poker. Then I broke out the printer and printed out the shots. I gathered an extra binder, sheet protecters and cut some scrapbook paper into 8×11 sheets. I got the letters at Target’s dollar spot.
It was so fun. I am missing some pictures of some letters (ah, I just figured out X-xylophone!) but I will get it done this weekend. 🙂
Here are some pictures of the book!



Chandler took the book to bed with him tonight! It was so cute! We are working on getting his speech more understandable so these are words he can say, but need work (most of them at least).

First day of school!

Tuesday, September 9th, 2008-Chandler’s first day of Preschool at St. Andrew. Written in the baby book and pictures taken. First art project done, first circle time, first snack time prayer, first song… all these firsts. It’s crazy, I guess I am so used to “no more firsts” with him, since he’s three, but wow, what a week.

He went to school at 1 pm, and had time to play in the class room (legos, animals, arts & crafts), then he did a hand print art project (he wouldn’t paint his hands so we traced). Then he sat on the red square for circle time where they sang a song and read a story. Then we (the parents-who were there for orientation) left to meet with the head teacher and the director of the school. The kids (all 5, such a small class) ate snack (after saying grace) and then played more. We left at 2:40 or so. He had a great time! He didn’t want to leave! He picked a Literacy bag-which is a book, prop and an activity, to take home. He chose Two Cool Cows to read. I think because he can say the title. 🙂

He can’t wait to back next week (he only had 1 day this week). We will be doing a bunch of fun things in school-Thanksgiving dinner, Jesus’ Birthday Party, Pajama Party, Mom & Me Tea, Field Trips to the community pumpkin patch (on school property) and to the Beaverton Library.
Today we celebrated Mom & Michelle’s birthdays at Outback. It was a nice dinner but more fun seeing everyone together.

Auntie opening her rockstar poster of Lincoln’s birth announcement.


Lastly, a shot of Mom and the boys at a party this last weekend.