Merry Christmas

Merry Christmas to all of our friends & family members! This Christmas was the best yet. Watching Lucas unwrap every present was magical. Parenthood just keeps getting better.

Even though it has only been four weeks since we were last in Boston, it feels like it was months ago. It amazes me how easily we can forget the hospital life and surgeries at Boston Children’s Hospital. Arizona is starting to feel like home again. This must be the comfortable feeling that parents of a healthy child experience. I could get use to this life of fewer surgeries and more time at home. Feeling very blessed.

Dear Lord, Thank you for allowing us to spend precious time with all of our family members on Christmas day.

Christmas Eve at Our House
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Christmas Day at Papa & Nani’s House
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Christmas Day at Uncle Craig & Aunt April’s House
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Fun Christmas Lights Picture from the Weekend
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Skyler loved playing Frisbee again today. It has been over a year since he last played with the Frisbee and he hasn’t missed a beat!
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No Fear

Lucas was extra adorable this morning. He was into everything. He decided one of his cubby holders would make a great seat. Plus, he figured out how to go from the ground onto our king bed by pulling himself up using his arm strength and the wood frame. This boy has no fear!

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Feeding Time Fun

Back in June, before we started at Boston Children’s Hospital, we would have never dreamed Lucas would be at the great place he is today. In June, Lucas was receiving all of his calories from formula (around 800 calories per day). Fast forward to now, Lucas is eating real food which makes up 800 – 900 calories per day. Plus, he still drinks around 300 – 400 calories from formula. For a total of 1100 – 1400 calories per day. The nutritionists and GI doctors at Boston Children’s Hospital want us to hit at least 1200 – 1400 calories per day. Lucas is right on track! The end goal is for Lucas to eat so much food that we can eliminate the formula. With every passing day, we are one step closer to our end goal!

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Lucas loves his food

No Dilation Needed

Best news yet! Dr. Manfredi said the 2 stricture sites held their size and shape since the last dilation 4 weeks ago. The lower stricture is at 12 mm and the top stricture is a good 15 mm plus which is a perfect size for Lucas’ age. So, Dr. Manfredi decided to not perform any dilations in the esophagus. It took Lucas a few hours to fully wake up from anesthesia. Then, we were cleared to go home and didn’t even need to stay the night at the hospital!

Dr. Manfredi said with a big proud smile, Lucas’ esophagus “looks really good”. We’ve hit a big turning point! Now, we go home and wait for a sign that Lucas’ esophagus is narrowing. For example, food getting stuck, coughing, choking, and/or throwing up while eating food. If all continues to go well, we will have an esophogram at Phoenix Children’s Hospital in 2 months. The PCH radiologist will review the results in person and should let us know if any stricturing is present. Plus, a DVD of the procedure will be sent to Boston Children’s Hospital for Dr. Manfredi to review. If all looks good, we may get another month or two until we perform a 2nd esophogram at PCH or Dr. Manfredi may just schedule us for surgery back in Boston to see Lucas’ esophagus in person at the 3 month mark.

This is the type of news we’ve dreamed of! Lucas is finally at the point where we are maintaining his esophagus rather than needing constant surgeries to stretch the esophagus. This means many more weeks/months between surgeries. Our prayers have been answered!

BTW – Southwest has been so good to us! We were able to move our flights from departing home on Saturday to today at no additional cost. Actually, we’re in the air as I’m typing this message. 🙂

24th Surgery

On Thursday, Lucas is scheduled for his 24th surgery at 12:15pm ET. Feeling calm and relaxed about tomorrow’s surgery at Boston Children’s Hospital.

During today’s Esophageal Atresia Clinic, all of the staff commented on how much weight Lucas has put on in the last 4 weeks. He went from weighing 23.85 lbs and being in the 24th% for weight to weighing 24.82 lbs and being in the 33rd% for weight. Our nutritionist said “Lucas looks so good!” and “Look at his chunky checks!”.

Tomorrow, Lucas is having blood drawn while sleeping under anesthesia to have tests run to determine whether or not his rickets are improving. The significant weight gain is a good sign that we could finally be making some progress and eventually get rid of the rickets.

We’re Back In Boston

Just landed in Boston. We have a busy few days ahead of us. On Wednesday, we have an Esophageal Atresia Clinic appointment from 1:30pm to 4:30pm at Boston Children’s Hospital. On Thursday, we have a dilation with Dr. Manfredi in the main OR. On Friday, we should be released from the hospital. On Saturday, we fly back home. Please keep us in your prayers that everything goes as planned.

At the Phoenix Airport, Lucas’ bottle of formula set off the bomb machine twice. Good times. So, we then were greeted by 3 TSA reps who proceeded to touch & test every single item in our 3 carry in bags. In the end, they let us keep the bottle of formula which started the entire mess. Very odd.

During the flight, Bryan spilled 1 glass of water on me. Then, a bit later, spilled a glass of water on himself. Yes, we are both a bit cold. Ha!

The entire flight to Boston was bumpy. In fact, many children we’re screaming due to the turbulence. But, not Lucas. He slept for 3.5 of the 5.5 hour flight. Then, he quietly watched Frozen for the rest of the flight. He’s such a blessing!

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