Beckett's Warriors - Life as a Medical Zebra

10/05/2021

Facebook wouldn’t allow me to change the name of this pageo I created a new one to follow the medical journeys of all 4 of our children. They all have been diagnosed with something rare, making them all medical zebras. I hope you’ll join us on the new page!

https://m.facebook.com/Raising-Zebras-100526562413859/?ref=bookmarks

All of my kids have rare conditions that make them medical zebras. Bella has Eosinophilic Esophagitis, an autoimmune condition. My other 3 children (W***y, Beckett, and Elliot) share a connective tissue disorder. We are still unsure which one.

08/24/2021

Beckett just left on the school bus for the very first time! I’ve been driving him the first few weeks while they got him added to the schedule. Since he’s in special education pre-k, they pick him up and drop him off from our house

08/13/2021

Today was a big day for Beckett — he started Pre-K! He goes just a few hours a day, which will be a great transition for Kinder next year. He had an amazing day and can’t wait to go back tomorrow!

08/02/2021

Today is a somber day in our household. I was going through the mail and I found a letter from the boys’ geneticist’s office. He’s leaving the practice and moving out of state.

We fought for years to find this doctor and then another year to get approval to see him. He’s a pediatric geneticist that specializes in connective tissue disorders. We thought we would finally find an answer with him. We’ll push through, we always do. Mama Bear never backs down. We will find an answer.

07/01/2021

Mine, my husband’s, and Beckett’s samples have all been taken. They’ll be headed to the lab tomorrow!

06/25/2021

I could cry right now!!! I just got the call from Genetics that the whole genome sequencing was not only approved by insurance, but they’re covering it 100%! We should have the test here within a week and once we send it back off, results take about a month or two.

06/15/2021

Elliot and Beckett had their cardiology checkups today. Beckett was so calm and had no issues, but Elliot got really panicked before his EKG. I was unable to calm him down, but my husband was there and calmed him down almost instantaneously.

Beckett: EKG looked great and his Pectus Excavatum is still extremely mild. She doesn’t expect his to get to the point of surgery, but he will continue to be monitored for it through puberty. Puberty is typically when it gets worse.

Elliot: EKG looked great. His Pectus Excavatum is also mild, but more pronounced than Beckett’s. He will be monitored a little more closely.

06/04/2021

Beckett and Elliot have their cardiology appointments next week. They will be seeing the same doctor as their big brother because we love continuity of care for all 3 boys. They see all the same doctors whenever possible.

06/03/2021

Thank you Fighting All Monsters!

FAMily Update 💻
And now the wait begins for Mr. Beckett ⏱.... This adorable lil guy has spent his entire life battling a series of life threatening symptoms for a yet to be determined genetic condition. A condition Beckett most likely shares with his two brothers. At last the medical team 🩺 is taking a look at the big picture and ordered full exome 🧬 sequencing. Brave B man, we hope you get the answers you deserve and functioning treatment plan in place. You, Beckett, are why FAM fights to raise awareness 💕.


cc: Chelly Bryant

05/25/2021

Phew that was intense. We got caught in a massive downpour in Fort Worth. Beckett doesn’t like things touching his head, so he was not a fan of the rain, but he handled it amazingly! I really like this doctor. He’s running a test he says should have been run 3 years ago and apologized for us being “mis-handled” by our previous geneticist. The doctor is running a full exome sequencing. If it comes back with anything, his brothers will have the same test and they’ll match them up. While we don’t have answers yet, I feel like we’re finally on the right track to obtaining them. Beckett got some stickers from the doctor and now we’re having lunch just the two of us. Beckett requested cheeseburger and fries, so here we are!

05/25/2021

Tomorrow morning is Beckett’s big appointment with the geneticist. This is the doctor we finally feel hope from. He is a pediatric geneticist that specializes in connective tissue disorders. We may not get an answer from him. We may never get an answer. But for the first time in Beckett’s 4 1/2 years, I feel like we are closer than ever before to an answer for him and his brothers.

05/17/2021

Home Health just dropped off Beckett’s pull-ups! Because he’s over 4 and has Autism, we were able to get his pull-ups covered by insurance. He is fully potty trained during the day, so he’s only wearing a pull-up at night now, but this is going to be so helpful! With his dysautonomia, he might wear pull-ups at night forever, and that’s ok, but this takes a huge weight off. They’ll be bringing us a box every month — and I love that they gave us extras in case he needs more than one a night. That’s rare, but it does happen.