"I'm Two!"

 Happy 2nd birthday, Crew!!

I figure that with today being Crew's birthday, it was about time to give another update for those following along, as well as for those who are finding Crew's Journey at a later time as they search for stories with an omphalocele diagnosis.

There are lots of other updates for Crew on both my instagram, @parkercluff, and Lindsay's, @lindsaycluff, but to catch everyone up here on what's happened, he had a successful closure surgery, double inguinal hernia repair, several ER visits with stomach issues, and follow up appointments.

His closure was a great success. Dr Fenton (Pediatric Surgeon) and Dr Siddiqi (Plastics) teamed up and did such a great job with the closure, finishing so much earlier than they thought that when Dr Fenton first came out to update us we feared that something had gone wrong because it was so fast! Crew also had a type of CDH (Congenital Diaphragmatic Hernia) called a Morgagni hernia that Dr Fenton found and was able to close while Crew was in the OR. Dr Siddiqi gave him a nice little belly button that has healed up nicely.

He discovered his belly button a while ago and likes to show it off!

This was taken a couple of weeks ago, which was about 15 months since his closure.

Crew's closure was in October of '21 and in December of '21 he had his double inguinal hernia closure by Dr Fenton. This too went very well. We're so glad that Crew was able to have Dr Fenton as his surgeon! He was phenomenal. Everyone at Primary Children's Hospital has been fantastic as well. With his omphalocele and hernias all closed up, we took a couple of family trips to create some memories outside of hospitals.

Adventuring and hiking in Bryce Canyon, UT.

Hiking in Glacier National Park and road tripping through Montana and Idaho.

On omphalocele awareness day on January 31, 2022 Crew and several other omphalocele kids, along with Drs and nurses from Primary Children's Hospital, were recognized in both the Utah Senate and House of Representatives where a citation was signed to recognize those with omphaloceles and their caretakers. Fun fact - my childhood neighbor friend, Daniel Woodruff, was there covering the legislative session and was also doing coverage of the omphalocele citation. So, Crew made the news!

On the floor of the Utah Senate

Another milestone worth mentioning is that the last day that Crew had his NG tube was July 30, 2022 because later that night Crew pulled it out. We decided to just run with it and it hasn't gone back in since!

We've had a few follow ups since his surgeries, and we'll probably keep taking Crew in for a full day of appointments with all of his specialists once a year for a few years, then taper them back. 

The only thing remaining for the little guy was some slight concern from Pulmonology about his lung size, especially considering the trouble he was having choking when drinking. They had Crew on two different inhalers for a while but it didn't seem to help much, so he's since stopped using them. His swallowing issues have basically resolved and now he's just like any other toddler who shovels in his food, making a huge mess in the process!

We're so happy that he's out of the woods on everything and that he's doing so well! We wouldn't trade all that we've learned and gained from his journey. 🤍🖤

He's a normal, mischievous two-year-old!