Monterey Bay Aquarium

Kc and I decided to surprise Noah on Saturday and head over to the Monterey Bay Aquarium for the day.  When we told Bubs about the special trip we were going to take in the morning, he ran all around the living room, climbed up on the sofa, and did a headstand.  Funny guy!

We woke up bright and early in the hopes that Bubs would sleep a bit in the car on the way over.  Ha!  Mr. Man was SO EXCITED that when I picked him up out of bed {ever so gently} he looked at me and said, "Hi.  We're going to the Aquarium today!". 

 

Being members of the Aquarium, we get to go inside an hour early.  Bubs just loves to say "Hi" to all the scuba divers who are cleaning out the tanks.  The divers are always so kind and patient and take the time to wave and show off a bit for my Little Man.

Noah was really into touching EVERYTHING he could get his hands on.  Almost every tank and exhibit has some sort of sculpture or decoration around it and Bubs couldn't wait to find them.  Who want's to touch a real starfish {all cold and wet} when you play with a brass one to your heart's content.

 

After visiting the sharks, octopus, starfish, and kelp forest, we headed up to the Splash Zone which is designed specifically for children.  Bubs loved the tank with Nemo {a clownfish}, Dory {a blue tang}, and Gill {an archer fish}. 

What he loved most of all, however, were the tidal pools.  There were plastic starfish and sea anemones to play with and Bubs was in pure heaven.

Notice Daddy-O in the background holding Squirt.

Noah would "collect" all the starfish and sea anemones he could find and line them up along the edge of the tidal pool.

Then he would knock them into the water one by one.  He thought it was wickedly funny!

 

He stopped just long enough for me to take a quick picture with his treasure.

 

 

Once we finished in the tidal pools, we headed around the corner to an area that the kiddos can climb around and go in and out of tunnels.  Bubs loved the larger than life clam and kept asking me where the pearl was. 

He loves reading The Pout-Pout Fish in the Big, Big Dark by Deborah Diesen.  In the story, Ms. Clam looses her pearl and Mr. Fish decides to help her find it.  It is a sweet story and Noah loves to point out every time my jewelry has pearls on it.  Mr. Man was quite perplexed as to why this clam did not have a pearl.

Our Little Man is growing up quite a bit...although...he's not quite as tall as a blue whale.

Of course we had to take the traditional picture in the tidal wave tunnel.

July 2012

 August 2011

December 2011

Bubs had such an amazing time at the Aquarium that he fell asleep about two minutes after we got into the car.  He slept the entire ride home.

Legos

Bubs has really started to love building things with his Lego Duplo blocks.  He has gotten quite creative and loves to build our house, Nana and PopRo's house, Target, the grocery store, and the swimming pool. 

A few weeks ago, he got a farm set to go with the Legos he currently has. 

 

 Well...now Bubs has been building farms...and sheep pens...and pigsties...and barns...

Potty Training

Well...we've entered into the dangerous world of potty training.  We actually attempted several months ago, but Bubs just wasn't ready.  I decided not to push him...and Kc assured me that he wouldn't be a 17 year-old boy still wearing diapers.  

So...here we are again, and I must admit that Noah is doing quite well.  The Big Boy Underwear Fairy came one night and took all of Bubs' diapers and replaced them with fun underwear.  When Noah woke-up, he was super excited to put them on.

Noah understood what to do quickly, but occasionally had problems stopping what he was doing and running to the potty.  I must admit that there were some days that both Noah and I were quite frustrated but luckily they were sprinkled between fantastic potty days and Kc kept reminding me that Potty Training is a process.

Bubs has had several days in a row without any accidents and while I know this process is not over, I am excited at how well he is doing.

Champion Swimmer

A few weeks ago, Noah had his final swimming lesson.  He's grown so much since his very first day.  He is truly a little fish right now. 

He can swim the length of the pool, rolling over to catch a breath,

jump off the diving board,

and even go down the big slide.

As a special treat, I even got to go into the pool with Bubs and learn from Mrs. Becky.

 

Noah loves his "gold metal" and frequently asks to wear it.

 

My Little Champion Swimmer!

Giving Noah a Voice

Noah is featured on the Lucile Packard Children's Hospital website this month.  Go over and check out the great article about our MOST FANTASTIC Otolaryngologist and the amazing care Bubs received at the Children's Hospital in Stanford.

Noah Jackson was born without a voice. Because of a rare genetic disease, his airway was so narrow he couldn't cry at birth. In fact, he could scarcely breathe, and had surgery at five days old to implant a tracheostomy tube that let air pass through a hole in his throat. Cuddling their newborn, parents KC and Rebecca knew Noah's only hope for someday speaking and breathing normally lay in the possibility that his voice box could be surgically reconstructed later on.

In the summer of 2010, when Noah was 18 months old, his surgeon at home in Fresno, Calif., referred him to Packard Children's world-class otolaryngology team, including Peter Koltai, MD, who is experienced at reconstruction of the voice box. But even Koltai's considerable surgical expertise provided no guarantees of success.

"This was a complete obstruction, as bad as it gets," said Koltai, remembering his early assessments of Noah's airway. "There was no opening at all to his voice box." After the "trach" tube was placed, Noah's tiny airway had scarred shut. When Koltai first evaluated Noah, no air came down from his nose or mouth to his lungs.

Noah's Unique Challenges

Noah also faced other difficulties. His rare genetic disease, Fraser Syndrome, causes structural anomalies in many parts of the body. Noah has only one eye, and was born with hand, foot and digestive-tract problems that required surgery in infancy. But the trach was Noah's biggest medical challenge. The tube was dislodging about once a month, leaving Noah breathless and sparking anxiety for his family.

"Every time he played, we were constantly watching the trach," Rebecca said. If the tube came out when a caregiver's back was turned, Noah could not cry for help; he communicated only in sign language.

Koltai's attempt to free Noah from the trach and give him a voice was a multi-stage undertaking with an estimated 70 percent chance of success. By November 2010, Noah was ready for the reconstruction surgery. Koltai and his team opened Noah's voice box and removed the scar tissue that blocked Noah's airway.

"The scar came up to the bottom of the vocal cords, but we were able to dissect them free," Koltai said. The team then used two pieces of rib cartilage from Noah’s chest to enlarge the framework of the voice box. The new airway was supported with a stent inserted through the center; Noah would keep breathing through his trach until the airway was fully functional.

Unexpected Complications

A month after the stent was removed, Noah had a check-up.

"The reconstruction had worked well below the level of the vocal cords,” Koltai said, but problems remained. “Because the vocal cords had been involved in scarring, they had fused back down like a zipper, almost totally closed," he added, explaining that this not only prevented Noah from speaking, but also jeopardized his ability to breathe normally. Fortunately, there was still a small opening. Over the next four months, the team repeatedly inserted a high pressure airway balloon of Koltai’s own design that gradually re-opened the airway and allowed the vocal cords to heal in a normal configuration.

Gradually, Noah learned to breathe through his nose and mouth. "Having a trach, the air just kind of dumps in and oozes out," Rebecca said. Noah's speech and sign-language therapists helped him build lung power with toys such as pinwheels to blow. It was hard work.

The Good News

Noah Jackson after successful voicebox reconstruction

In June 2011, Koltai re-examined Noah's airway. "I'll never forget it," Rebecca said. "Dr. Koltai came running out and said 'Do you want the good news or the good news? I'm going to take the trach out right now!'"

A few minutes later, with Noah seated on Rebecca's lap, Koltai undid the Velcro straps that held the trach in place. The little boy breathed: in and out, in and out. Noah seemed bewildered by the excitement of the adults around him.

The fact that he leads a renowned surgical team and has reconstructed many children's airways didn't diminish Koltai's enjoyment of the moment. "It gives you goose bumps every time it works," he said.

Noah's life is now much like that of any 3-year-old. He can roughhouse with friends without risk of dislodging a trach tube. He can play in his room while his parents keep an ear out from around the corner. He attends preschool, and is hitting cognitive and developmental milestones on schedule.

And he is talking. "His voice will probably always be on the quiet and raspy side, but he's understandable," Rebecca said. "That's huge."

Noah Jackson, Future Marine Biologist

For Rebecca and her husband KC, it’s a dramatic change from their son’s early days when they focused on his medical care. Now they can think and dream about what lies ahead for him. If your infant has complex medical needs, said Rebecca, "it's scary to think about the future, so you just don't. You don't think, 'What's going to happen to my child when he's 16?'"

Noah, it turns out, has plenty to say about his future. He loves visiting the Monterey Bay Aquarium and recently told his parents that when he grows up he wants to work with fish.

It'll be a little while before Noah is ready for his career in marine biology. But in the meantime, he's happy to chat about his favorite species of sharks—or whales, or turtles, or jellyfish, or seahorses…