T-Ball

Lucas was on fire today at t-ball catching ground balls & having some great hits! Can’t wait to see the team pictures we took after the game.

Video of Lucas being the 1st Sun Devil player up at bat. Apparently Lucas likes the t-ball stand in a high position. 🙂 

https://goo.gl/photos/Q88EMsGvtvoXbYzo6

T-Ball Season

Lucas’s 2nd t-ball season officially started today. I am in awe at how much more fun Lucas is having this time around!!!

On the way to the game, I told Lucas how proud we were of him for just joining the team and all that mattered was he had fun. Well, I can assure you Lucas had a blast!

Lucas got low to be ready for a ground ball. Ran to get the ball. Patiently sat on the bench with his teammates and waited for his turn to hit the ball. When it was his turn up to bat, he really wanted to hit the ball. Most surprising was Lucas ran to 1st base all on his own! This was a big accomplishment!!! He even waited between each hitter to run to 2nd, 3rd, and then home base!!!

I will close by saying a fellow Mommy pointed out Lucas had the biggest cheering squad which consisted of Papa Lou, Gigi, Papa Bob, Nani, Aunt Jenny, Zoe, Bryan, & me. 🙂 Big thanks to our family for attending Lucas’s 1st game of the season!!!

Cute shot of the Sun Devil’s Team on the bench. #24

Right before the opponents batter hits the ball, Lucas gets low  to be ready for a ground ball.

Lucas running to get the ball.

Family photo.

Our Lucky Charmer

Lucas loved having the leprechaun making messes from Wednesday through Friday! On Friday night, at bedtime, Lucas kept looking for the leprechaun. Then, out of nowhere the below note appeared from the leprechaun. 

This note became Lucas’s prized possession! While Lucas was laying in bed falling asleep, he sat up & said “Mommy I want to make a note for the Leprechaun…

Dear Leprechaun

I love you! Please come again next year. When you come don’t throw away my dinosaurs because they are sleeping.

Love, Lucas”

President’s Day

Happy President’s Day from sunny AZ!!! After a rare 2 days of rain, today was a gorgeous day at 69 degrees with big fluffy clouds between the light blue skies. We visited Home Depot, Lowe’s, and the Chandler Airport. We even had lunch at the Hanger Cafe. Fun day so far!

EA/TEF Awareness Month

​January is EA/TEF awareness month. Lucas has type C Esophageal Atresia with Tracheo-Esophageal Fistula, in which the upper segment of the esophagus ended in a blind pouch (EA) and the lower segment of the esophagus was attached to the trachea (TEF). On day 2 of life, Lucas’s esophagus was connected! Over the last 3.5 years, Lucas has completed 27 surgeries. We are blessed to have amazing surgeons and outstanding medical benefits which allow us to travel to Boston Children’s Hospital which is #1 in the world for this condition! Lucas is truly our miracle boy who is defying the odds!!!
Below is a quick yet great article written by a fellow EA/TEF mommy. 

http://differentdream.com/2017/01/6-ea-tef-warnings-no-one-talks-about/

Zoo Time

Gigi, Mommy, & Lucas headed to the Phoenix Zoo for a little fun since weather.com showed no rain projected until 2pm. Unbeknownst to us, the Rock ‘N Roll marathon was taking place in Tempe. So the zoo was crazy empty due to the marathon closing off most of the routes to the zoo. We enjoyed a relaxing & informative Safari train ride. Plus, Lucas loved riding the Tiger on the carousel! 

On the way home, Lucas fell asleep. Since Lucas has an issue where he wakes up as soon as you attempt to take him out of the carseat, Gigi & I decided to pick up Panda Express & we ate lunch in the car. Ha! Gigi even had time to run into Safeway to buy groceries. In the end, Lucas napped in the car for 2 hours! When Lucas woke up, he said “Something stinks!”. Apparently Panda Express is a bit too smelly for Lucas. 🙂

Lucas napping in the car on the way home. 🙂

Santa Claus

Big news! Santa Claus visited Lucas at our house on Friday, December 16.Around 6pm, Jackie (our amazing nanny) called to say she left her water bottle and would be arriving soon to pick it up. As we waited near the front door, we suddenly heard sleigh bells. We let Lucas open the door to see what was outside. To all of our surprise, Santa Claus was standing there!!! Lucas froze from excitement & quickly hid behind the door with a huge smile on his face. Then, Santa Claus came inside & chatted with Lucas forever!!! So happy Papa Bob, Nani, Papa Lou, Gigi, and Jackie were all able to be with us during such a special moment!

Dr. Oz – The Good Life Magazine Article

We are excited to share the Dr. Oz The Good Life Magazine included an article titled “Open Home, Open Heart” in their December 2016 edition which highlights Lucas’s medical miracle story and our positive experiences with Anu who is a member of the Hospitality Homes non-profit organization which provides free lodging whenever we are in Boston for surgeries at Boston Children’s Hospital. We still can’t believe Lucas’s story made it into a national highly acclaimed medical magazine!!! Plus, there is even a lovely picture of our family located at the center of the article.

So, the next time you are at a grocery store, check out the magazine area to read our article on page 100. The December issue should be on store shelves through December 14.

Attached is a scanned copy of the article.

dr-oz-the-good-life-open-home-open-heart-december-2016

We Are Home

Lucas was discharged from Phoenix Children’s Hospital. We’re very happy to be home!

Today, Lucas was placed on prednisolone (steroid) for 4 days to further help open up his lungs to combat the croup & rhinovirus symptoms. Praying he gets noticeable better with each passing day.

Pics from our hospital room on the 9th floor. We had a gorgeous view of downtown Phoenix, south mountain, & Sky Harbor Airport. We passed the time by watching planes take off & land at the airport at all hours of the day. 

Lucas Update

Lucas has made some significant improvements in the last few hours. Most importantly, his oxygen level is staying between 90% -95%. Feeling very blessed. Thank you for all the prayers!

​Armpit thermometer fun time…

Lucas Was Admitted To Phoenix Children’s Hospital

​Lucas was admitted to Phoenix Children’s Hospital this morning at 2am due to oxygen levels below 92%, labored breathing, a fever over 100.5, and a few more issues. For now, PCH confirmed Lucas has croup and tested positive for the rhinovirus. Please say a prayer that Lucas’ oxygen levels start to rise and he starts to feel better. Thank you!

Throughout this PCH visit, the song “Thy Will” by Hillary Scott & family keeps coming to my head to hum to Lucas whenever he is uncomfortable and needs to be soothed. 

27th Surgery

​Dr. Manfredi decided Lucas’ esophagus looked “really good” & he saw “no signs of reflux damage”! So he only took biopsies to test for reflux and decided not to dilate. For now, he wants us to increase Lucas’ bite size and allow Lucas to self manage his bites rather than us cutting food up for him. We may have more food getting stuck but Lucas needs to be a big boy and learn what bite sizes he can handle. Most importantly, Dr. Manfredi forsees we can wait a full year before returning to Boston for another dilation surgery. Such great news! 

The bronchoscopy once again confirmed Lucas has severe tracheomalicia where there are sections in the lower 2/3 of the trachea which collapse by 80%-90% when Lucas exhales. The bronchoscopy was very hard on Lucas’ trachea. So he came out of surgery sounding junky and coughing. Plus, the anesthesia made Lucas nauseous and he threw up 7 times. Our anesthesia doctor ordered Lucas antinausea medicine and Tylenol.

From 9am to 3:30pm Lucas was trying to stabilize in the post op area. The nurses were extremely kind to give us so long in the post op area. Normally you have a max of 2 hours to stabilize and if you need more time you’re forced to be admitted overnight. 

I should mention Dr. Smithers (surgeon who performed the bronchoscopy) found a cyst on Lucas’ vocal chord. Dr. Smithers believes the cyst is due to repeat intubation from anesthesia. The cyst can be ignored unless Lucas “becomes a world famous opera singer”. 🙂 

Once we returned to the Yawkey House (Boston Children’s Hospital housing), we used some of the medicine we brought ftom AZ to make Lucas comfortable. For example, CPT (chest percussion therapy machine), atrovent, QVAR, hypotonic saline 3%, nebulizer, and Tylenol. 

When Lucas work up on Saturday morning, he was happy & singing. In fact, he said, “everyone clap!”. Then, he proceeded to sing loudly “If You’re Happy & You Know It”. Seriously, Lucas is the strongest person I know!

Thank you Jesus for another successful surgery and for protecting Lucas’ brain from any harm!!!