Back In Boston

This time, we hope to be in Boston for 3 weeks or less. But we truly won’t have a good idea of when we’re going home until after Thursday’s esophagus stretching surgery. Praying the Lord will bless us with Lucas’ esophagus looking wide open and needing very little stretching. No matter what, Lord, please keep Lucas safe while he’s under anesthesia. This will be Lucas’ 20th surgery. Each time, we are amazed at how well Lucas recovers and his esophagus has life changing improvements.  Feeling excited & blessed for Thursday to come!

Great Weekend

Last weekend was great! We spent time with all of our AZ family members.

On Saturday, we celebrated Aunt Jenny’s birthday. Happy Birthday!!! Lucas ran all around the house & backyard with Zoe.

On Sunday, Aunt April stopped by with her clan. This time, Lucas ran all over the house with Logan & Ronan. It is safe to say, Lucas thoroughly enjoyed all of the family time!

image

image

image

image

image

image

image

image

Genius

“Yah…I’m a genius like my daddy.”

Lucas is wearing another new outfit for our trip to Boston next week. In Lucas’ right hand is his favorite buddy who goes everywhere with him around the house. So sweet!

Arriving in Boston on Monday, September 29. The esophagus surgery is on Thursday, October 2. Then, the colonoscopy and Fecal Microbiota Transplant (FMT – the 2nd stool transplant to attempt to eliminate the C. Diff infection) is on Friday, October 10. Praying for another trip with awesome results.

image

New Words

Lucas just started to say Skyler (our dog’s name)! Now Skyler is following Lucas around even closer. Skyler must think Lucas wants to play with him. Ha!

So far, Lucas clearly says Dada (his favorite word), Mama, Papa (just started saying this word a week ago), bath, bounce (this is what he calls a ball), vroom (this is what he calls a car), & Skyler.

Last week, he totally surprised me by repeating a saying that I say constantly. He said “duck goes whack whack”. He said it 3 times in a row! Then, he’s never said it since. He’s shy about talking. 

Over the last week, he’s constantly babbling & starting to say more words. We feel like he’s on the verge of having some great growth with words. Can’t wait!

Lucas loves for us to ask him where something is and then he points to it. I can’t wait until he starts to say what things are while pointing. 🙂

Possible Immune Deficiency Disorder

Thursday morning started with a call from the allergist/immunologist at Boston Children’s Hospital. Our immunology blood test results came back with some noticeable issues. A quick summary is, Lucas’ immune system is very weak/compromised. They are not sure if the C. Diff infection since January is causing his immune system to be depressed or his depressed immune system is the reason why he can’t beat C. Diff. They are waiting for the microarray results to come in & show or not show an immune deficiency disorder. Praying we don’t have another medical battle on our hands. For now, we need to hold off on giving any live vaccinations (ex. MMR) since Lucas’ body isn’t strong enough to handle a live vaccine and he would most likely become infected by the live vaccine.

Needless to say, I was down on Thursday & Friday. Lucky for us, we are blessed to have amazing friends & family members who quickly came over to chipper us up. On Friday night, Nani, Papa Bob, & Papa Lou came over & Nani even made an amazing dinner. On Saturday, Nani & Aunt Jenny surprised us with a visit to make us smile and of course play with Lucas. They brought many tasty foods which were free of dairy, soy, and fruit. Lucas loved everything they brought! Then on Sunday, Aunt Jen Knapp came over for breakfast & helped me organize our master bedroom. From the afternoon through to late at night, Gigi came over to have her fun with Lucas. She was doing such a great job that Bryan & I left together to run some errands. It was nice to spend some alone time with Bryan.

Lord – We may not always understand your game plan for Lucas. We have been through so many ups & down. Thankfully, we always end each day with a smile because Lucas is in our lives. Thank you for giving us the most amazing gift! I can’t imagine a more perfect child.

Work

On Wednesday, Bryan & I returned back to work full-time. It has been both exciting and tiring. Lucky for me, I work from my home office. So, I get to hear Lucas & Jackie having fun and running around the house. During my lunch break, I came out to the living room area and danced with Lucas. I sang a simple song which was me continuously singing “I dance” while  spinning Lucas around in the air. When I stopped the dance party and put Lucas down, he started running around the house yelling in his adorable baby voice, “I dance” while throwing his hands up in the air. He is so darn cute!

Home!

Our family greeted us at the airport when we arrived on Saturday! They even threw us a fun welcome home lunch. Saturday flew by. We were overwhelmed with happiness and also terribly sleep deprived. It felt so odd to be back to our normal life in our home after being gone for 2 months. I kept saying “this feels surreal”. Of course, we got teary eyed a few times.

Seeing Skyler (our dog) was a wonderful moment! He happily greeted us at the door and didn’t want to leave our sides. Now that Lucas is eating normal table food, Skyler is staying extra close to Lucas when he’s eating. Skyler especially enjoys the dropped prices of turkey meatballs, pasta, veggie straws, hummus, bread, and even broccoli. Ha.

When we came into the house, the 1st thought that came to my mind was ” Wow! We have a really nice house”. 🙂 It is amazing how much you appreciate space & a well decorated room after being in a small hospital room for so many weeks.

As soon as we walked inside the house, Lucas ran all over going from toy to toy. He didn’t take an afternoon nap because he was having so much fun!

Feeling so blessed to be home until the end of September when we go back to Boston for another surgery. We will enjoy and appreciate every moment we have back in AZ!

Flying Home

Flying home this morning! Only 2 hours of sleep because Lucas decided to stay up until 1am & we had to wake up @ 3am. I think Lucas understood we are going home & was too excited to sleep. 🙂

Sweet Home Arizona

576 days ago the date was Tuesday, February 5th, 2013. Jill was 20 weeks pregnant. We didn’t know yet if we were going to have a boy or a girl, but shortly after our 10 am appointment we expected to get the answer. It was the day of our 20 week ultrasound – the anatomy ultrasound. We found out we were having a boy and were overjoyed, but we also found out that not everything was quite right. It was a day of mixed emotions. Three ultrasounds over the ensuing three days would confirm the fears, our tiny baby boy’s tiny esophagus was not connected to his stomach. 

Indeed, for the last 576 days, we’ve been told that Lucas’ esophagus isn’t quite right. That changed today. 

Today’s surgery started out much like any other. We said a prayer. I carried Lucas back in my arms into the operating room. Lucas cried, aware enough to know what would happen next. The anesthesiologist injected a small amount of medicine into Lucas’ PICC line and within a few seconds Lucas’ entire body was limp. I gently laid him on the operating table, gave him a kiss, and left the room. I joined Jill in the hallway and we walked to the waiting room. I called my parents and Jill went to get us food. This is our routine. We’ve done it 19 times. 

Except there would be nothing routine about today.

Within a few seconds of me getting off the phone with my parents, and before I had the chance to eat the sandwich that Jill had just returned with, Dr. Manfredi walked in the waiting room. He had a grin on his face that Jill would later describe as a smirk. He was pleased. Very pleased.

He said, “Lucas’ esophagus looks good. I didn’t even dilate.” We were speechless. It was completely unexpected news. The doctor continued forward explaining how great things looked and showed us pictures and fluoroscopic images in which you’d be hard pressed to see there was ever a distal stricture. Then Dr Manfredi shocked us again by saying that Lucas wouldn’t need another dilation for 3-4 weeks. I immediately looked at Jill and tears of joy filled our eyes. 3-4 weeks was enough time to go home.

576 days. And each and every one of those days just make today, this day of blessings, that much sweeter. The miracles continue. The power of prayer is demonstrated again. And for the very first time, we were told that Lucas’ esophagus looks good.

Little Fire Fighter

We used to never let Lucas play with hospital toys, but there comes a time when you’re practically living in a hospital that you throw caution to the wind. Here are a few pics of Lucas in the pre-op check in area this morning.

image

image