Thankful

This year, we are most thankful for Lucas’ constantly improving health. From the moment Lucas was growing in my stomach, the Lord has been by our side & given us hope during even the most bleak moments. Thank you, Lord!

Some people may hear of Lucas’ medical journey and feel sad for him or us. Instead, I pray you see the amazing miracles the Lord has shown through Lucas’ and this strengthens your bond with Jesus.

A word from Jesus about birth defects…

John 9: 1-3
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”    “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

C. Diff Update

Back on October 10, Lucas received the 2nd fecal microbiota transplant (FMT, stool transplant) at Boston Children’s Hospital. On this Friday, November 28, Lucas will hit 7 weeks of being C. Diff free. So far, Lucas appears to have beaten the C. Diff infection. We are ecstatic!

In the past, out surgeons requested for us to avoid fruit for fear of toddlers diarrhea. Recently, they gave us the green light to start giving Lucas fruit again. Last week, we reintroduced bananas & raspberries into his diet. Lucas can’t get enough! In fact, when Lucas saw the banana after not getting any for months, he had a huge smile on his face & he basically devoured the banana peices. Can’t wait to introduce the next fruit.

Turtle

Yesterday morning, Lucas was playing with his turtle beanie baby & then he said “tur tle” for the 1st time. The word sounds so adorable coming from Lucas’ mouth!  This is the 1st time he has said a word which starts with the letter “t”.

This morning, we brought Lucas in our room as soon as he woke up. To keep the new word in use, I said Lucas can you say turtle. He quickly said ” tur tle” back. Then, he ran out of our room with Dada by his side. He searched the living room and then found it in his bedroom. Next, he ran faster than normal across the entire house with the turtle in hand and didn’t stop running until he saw me and handed the turtle to me. I wish you could have seen Lucas’ big proud smile. He’s such a cutie!

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EA Crew

The EA Crew! Here is a picture of Lucas with his fellow esophageal atresia friends from Boston Children’s Hospital. Lillian & Daniel have truly inspiring medical stories like Lucas. Whenever we are back in Boston, we set up times to meet up with Lillian and/or Daniel who have been admitted as patients at BCH since June. I am happy to report both Lillian & Daniel are being released to go home for a Thanksgiving break. God is good!

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Keeps Getting Better

Yesterday, Lucas turned 18 months old. We cannot believe he is already one and a half years old! Time is flying by. Luckily, we are enjoying every moment while we are home.

With every passing day, Lucas keeps getting better. He is becoming more fun and independent. In the past, Lucas either needed us right by his side playing or he wanted to be in my arms. In the last few weeks, he has become a true toddler and now can play on his own with us just a short distance away.

In fact, today feels like one of the best days we have ever had with Lucas. I am guessing this type of day is normal for most families. But, since July, our lives have been turned upside down by us spending so much time in Boston. Today, I felt like we were actually living in AZ, not just waiting for our next surgery in Boston. We started the day with me making breakfast sandwiches while Lucas played completely on his own 15 feet away. This was a 1st! Then, Lucas and I went on a stroller ride to enjoy the gorgeous 75 degree weather while Dada completed numerous errands around the house. During the walk, Lucas & I even made a quick stop at the grocery store…This is only the 2nd time Lucas has ever been in a grocery store in AZ. Normally, we do not take Lucas out to avoid germs since our surgeons want us to do everything possible to ensure Lucas does not get sick…Then, we ended the day with some fun play time outside with the new water & sand table. Lucas had a blast!

So far, one and a half years old is my favorite age for Lucas. Life is good!

Lucas did not want Papa Bob & Nani to leave on Friday night. So, Lucas received some special treatment and was able to sit in Papa’s lap for a few minutes.
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Boston – Hospitality Homes

In the past, we have been blessed to find a room at the Boston Children’s Hospital housing which is $30 a day. For our last trip, the BCH housing was booked. So, we utilized Hospitality Homes which is a local non-profit who finds housing for out of town patients at all hospitals in the Boston area. They matched us with an amazing woman named Anu who kindly offered for us to stay at her home which was only a 10 minute walk to BCH. She had a gorgeous home with a basement suite just for us! We had our own entrance, bed, pack n’ play, fridge, freezer, toaster oven, coffee pot, and even an in room bathroom. Plus, she offered for us to come into her home to do our laundry.

In our time of need, Hospitality Homes and Anu were our little angels!

Bye

For the 1st leg of our trip home from Boston to Chicago Midway, Lucas slept for an hour and a half. Score! During our 2 hour layover, Lucas wanted to walk around. The best part was when Lucas was walking alongside the moving walkway which was going the opposite direction. Lucas started waving with a big smile and saying “Bye!” to everyone who passed by on the walkway. Everyone smiled, laughed, and waved back. Ha! Plus, a sweet woman walked over to me and said “you have a star on your hands”. So true!

Meanwhile, Dada watched Arizona State football pull out a big win vs Notre Dame! Go ASU!!!

Lucas sleeping during our 1st leg. I just love his lips!

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Surprise… Going Home Early

Thursday was filled with big highs & lows. We expected the surgery would take 30 – 40 minutes. When the hour mark passed, we started to worry something had gone terribly wrong. In fact, I even cried during the long wait.

When Dr. Manfredi finally came out to the waiting room, all of our worries were quickly taken away. Dr. Manfredi said the surgery itself was a huge success! Lucas’ lower esophagus held it’s size of 10mm since the last surgery 3 weeks ago. So Dr. Manfredi barely worked on the lower area this time around and dilated the area up to 12mm. Instead, he spent the majority of time on the upper stricture where he increased this area from 15mm to a good 18mm. Very impressive.

Then, Dr. Manfredi threw us for another loop. He surprised us by saying Lucas’ esophagus is doing so well with holding the size that he wanted to cancel next week’s surgery and instead have us go home early! We already changed our return flight home to this Saturday. This is the 1st time we have ever gone to Boston & spent less time than planned. Yippee!

Our next surgery is Thursday, December 4. For now, Dr. Manfredi only has us booked for one surgery. So, we could have another 4 day trip to Boston during the 1st week in December.

Four weeks between surgeries may seem like a short period of time to you. But, this is the 1st time we’ve gone 4 full weeks. This is a big step to getting more & more time between surgeries! Actually, Dr. Manfredi even mentioned the idea of waiting until January for us to come back. But after some time to think about it, he decided on the 1st week in December.

On the down side, Lucas had a significant amount of pain this time around. He cried from pain for the 1st 8 hours after surgery. The worst thing a parent can see is their child in pain. Lucas was on IV hospital level doses of Tylenol & Motrin which normally is more than enough to eliminate most of the pain. At 6pm, Lucas threw up blood after a bottle of formula. This was a moment of extreme concern for us. In the past, Lucas has never thrown up blood after a dilation. Our nurses were very helpful & even stayed in the room with us for a while until Lucas started to calm down.

In the end, Lucas did eventually get past the pain & even was able to get some sleep during the night. All that matters now is we are going home on Saturday! Eager to spend Thanksgiving with our families!!!

23rd Surgery

Our next surgery is Thursday (tomorrow) at 10am. Happy to be back in Boston having Lucas’ esophagus further strengthened by Dr. Manfredi. 

Back in July, we made the best decision of Lucas’ life by transferring his care to Boston Children’s Hospital. Every step of the way, we prayed to the Lord to give us clarity when making medical decisions and he has never once let us down.

Zoe’s 10th Birthday

On Saturday, we attended a big 10th birthday party for Zoe! We had a filling meal of sushi and other tasty foods at Honk Kong Buffet which is one of Zoe’s favorite places. Then, went back to Papa’s & Nani’s house to open presents & enjoy some scrumptious red velvet cupcakes from Sprinkles. Lucas was having so much fun playing with everyone that we didn’t get home until 9pm. In fact, he fell asleep on the ride home which made Dada & Mama very happy.

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It is obvious Zoe loved the presents from Papa & Nani!

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