“Clock”

Lucas is starting to say more words. Just last night, we were watching a “Super Why” episode from PBS which is focused on learning. So they spell words throughout the cartoon. They showed a clock and then spelled the word. Lucas jumped off the couch, ran into the kitchen, and then pointed at the big clock over the kitchen entrance while excitedly saying “clock”. Such a wonderful moment!

Lucas loves talking on the phone. 🙂

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Full House

On Wednesday, Bryan & Lucas returned home. It feels so good to have the family back together again! I must admit, the house seemed empty, quiet, and boring while they were gone.

Bryan still has a strong productive cough. So Bryan is staying in the master bedroom or his office to avoid Lucas until his symptoms lessen a bit.

On Monday & Tuesday, I fully decontaminated the house by using way too much Lysol (so happy Lucas was out of the house and didn’t ingest the fumes), used antibacterial wipes on every surface (ex. light switches, door handles, counters, etc), and did 8 loads of laundry to get everything in the house free of germs. I even washed Skyler’s bed cover since he lays right next to Bryan at night. On Wednesday morning, Marlene (our cleaning lady) completed a deep clean of the house. Just in time for Lucas to return home on Wednesday afternoon.

Thank the Lord, Lucas did not catch the flu. We were extra nervous because Bryan fed Lucas on Saturday night when he started to become sick with a sore throat. We are hoping this could be a sign that Lucas’ immune system is improving and he was able to fight off the flu.

A big THANK YOU to Jackie & Tim for taking Lucas to your house for 2 days!!! You are so good to our family. We love you guys!

Below are pictures of Lucas playing in our master bedroom before going to bed last night. As you can see, Lucas has no fear!  He goes from a sitting position to diving off the chaise on to the ground. Ha!!!

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The Flu

On Saturday night, Bryan started to have a sore throat. On Sunday morning, he woke up & was completely sick with a cough, body aches, fever, stuffiness, sore throat, etc. So, Bryan was quarantined to our master bedroom. On Sunday night, I slept on the couch to allow Bryan to get the best night sleep he could get and for me to not sleep in the same bed with him when he was coughing up a storm. Fun fact: Sunday was the anniversary of the day we got engaged many years ago.

Today, Bryan visited the doctor & was told he has the flu. Urgh! Now, Bryan is taking Tamiflu to shorten the length of the flu and I’m taking Tamiflu to avoid getting sick.

Since Lucas has an immune deficiency and severe tracheomalacia, we decided it was in Lucas’ best interest to get Lucas out of our house and away from the flu germs. If Lucas were to get the flu, then he would need to be hospitalized.  Unfortunately, all of our parents are sick or a bit under the weather. Of course, Jackie (our amazing nanny) graciously offered to take Lucas home to get him away from the germs. I’m fact, she kindly pushed & lovingly recommended I part from Lucas for a few days to keep him healthy. Jackie is so good to us & cares for Lucas as if he were her own grandchild! Unfortunately, watching Lucas leave darn near broke my heart. I tried my best to not have Lucas see me cry. I made sure to put on a big smile & waved goodbye while Jackie drove away from our house. Once the mini van turned the corner, I couldn’t hold back the tears any more. Poor Bryan heard me come back into the house crying. Bryan couldn’t come give me a hug/kiss since he’s sick. So, he had to just yell from across the house that everything was going to be alright. Kind of a strange yet sweet moment.

Then, Bryan told me he thought it would be best for him to get out of the house so I don’t get sick. He asked me to book a room at a hotel which is less than a mile away. He will come home in a day or two once his fever breaks. Even with Bryan at the hotel, it is still a good idea to keep Lucas away just in case I’m getting sick but just haven’t shown any symptoms yet. The plan is for Lucas to come home on Wednesday at the latest if I don’t get sick. This is so very hard.

After Bryan left, I fully sanitized the entire house and washed the bedroom sheets & towels. I should mention, I may have gone a bit overboard when I used an entire extra large can of Lysol to disinfect every inch of the house. Ha! The house seems so quiet without my baby boy & hubby.  😦

Please keep us in your prayers that #1 Lucas does not get sick in the next five days. #2 Bryan quickly feels better. #3 I don’t get sick. Thank you for the prayers! Somehow we will get through this flu craziness.

“Looks REALLY Good”

Time to celebrate! Dr. Manfredi said Lucas’ esophagus “looks REALLY good”. The lower stricture appears to have held its shape. There is a small indentation on the left side. However, Dr. Manfredi said the indentation was there back in December. So, he isn’t worried at all. The upper stricture may be even bigger now than in December. Wow! This means the food Lucas is eating is naturally expanding his esophagus. Feeling so blessed.

For the next 2 months, we will continue to enjoy life in AZ. In April, Dr. Manfredi wants us to return to Boston to have a scope performed to visually view the esophagus and most likely perform another dilation. If all goes as planned, Lucas will have 6 whole months between his last dilation in November to his next dilation in April. Our dreams are coming true of having more and more time between dilations.

Thank you for all of the prayers. We know the Lord has big plans for Lucas’ life. I can’t even put into words how happy we are to be home for 2 more months. We treasure every minute we are at home rather than at a hospital.

Play Date With Liam

Two weekend’s ago, Lucas had a play date with Liam. We all had a blast! Big thanks to Sam & Mike Tucker for taking time out of their busy Saturday to bring Liam over for a long awaited play date at our house. Once the flu season is over, we hope to have many more play dates with Liam & other friends.

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Waiting for Results Review

The radiologist at Phoenix Children’s Hospital thought Lucas’ esophagus looked “amazing” during the swallow study. The radiologist has seen maybe 5 distal strictures and hundreds of upper strictures in his long career at PCH and Lucas’ esophagus was the best he’s ever seen. In fact, he said Lucas’ esophagus almost looks completely normal as if it never needed even one surgery. He pulled up Lucas’ prior swallow study results from February 2014 & could not believe the amazing results Boston Children’s Hospital has performed. He wanted to know all about our experience at BCH and who our surgeons were.

Now, we are waiting for Dr. Manfredi or Dr. Jennings to review the CD images we mailed overnight to BCH. Bryan & I joked that what PCH deems amazing may not be good enough results to BCH. We’ll keep you posted.

Swallow Study on Tuesday

On Tuesday, we have a swallow study/esophagram at Phoenix Children’s Hospital at 9am. If the results show a stricture, then we will need to schedule a trip back to Boston Children’s Hospital within the next few weeks. Please keep Lucas in your prayers that the results show no stricture so we can have a few more months in the sunny & warm AZ winter before we need to go back to the blizzard conditions in Boston. No matter what the results show, we have been blessed to have 3 full months before the last esophagus dilation.