Raising Zebras

15/06/2022

Another successful post op day with our favorite surgeons. See y’all next year!

03/05/2022

Beckett is out of surgery and resting in the PICU. His amazing surgeons said everything went perfectly.

03/05/2022

Beckett was taken back to surgery about 90 minutes ago. They expect it to take about 4-5 hours.

06/04/2022

Beckett had an MRI today which showed that he needs another cranio surgery. It will be done ASAP.

01/03/2022

Today is Rare Disease Day. Two of my zebras with their zebras

16/02/2022

Elliot had his 1 year post-op day at the hospital. Always a pleasure seeing his surgeons again and catching up! They’ve done surgery on both Beckett and Elliot and we’d choose them time and time again if the need ever came up.

Elliot’s visit went great! Everything is looking exactly the way it should at this stage.

05/01/2022

Elliot just had his first visit at the Scottish Rite Scoliosis Clinic. His scoliosis is very mild, with a 16° curvature. They don’t consider it scoliosis until it reaches 15° and above, so his is at the very beginning where it gets diagnosed. We go back mid-July for a follow-up exam and imaging.

19/11/2021

With Beckett having a compromised immune system, we have gone back and forth over whether or not he should get the COVID vaccine. I had several in-depth conversations with his Pediatrician as well as his Immunologist. Ultimately, the consensus has been since the beginning of the pandemic that he would likely not survive if he caught COVID. We weighed the benefits and risks of COVID and the vaccine countless times. In the end, along with his medical team, we decided that he should get the vaccine since he just turned 5. Today, he got his first dose — and he did incredible! The pharmacist was so impressed with how well he did.

16/11/2021

Elliot’s pediatrician referred him to the Scoliosis clinic at Scottish Rite. They called me to schedule his appointment less than an hour after the pediatrician sent in the referral! Pretty amazing. His first appointment is on January 5.

15/11/2021

When Elliot went to urgent care last week, they did a chest X-ray. The radiologist thought they saw some scoliosis on his X-ray. We just followed up with his pediatrician. She sees potentially some mild scoliosis. She’s going to get a radiologist to see if they can measure the degree of curvature so she can decide what to do. If they can’t measure it, she’ll send him for a scoliosis specific MRI. If they can measure it, she’ll send us to the scoliosis clinic at Scottish Rite. So now we wait.

Excuse his super messy hair 😂

09/11/2021

For the past year, Beckett’s ENT has kept us stocked on steroids and nebulizer treatments in case croup struck him. Due to his airway defect, we would have an ER trip literally every single time he caught croup because he would go into respiratory distress. He has never had croup without at least one trip to Children’s. His ENT knows that I know exactly what to do and wanted to save us some ER trips. We’ve always refilled the prescriptions, even though we haven’t needed them…until tonight. I heard Beckett stirring in bed and then I heard that tell-tale cough. I checked his vitals and because they were stable enough not to have to race off to the ER, I grabbed his meds and administered them. He’s now back in bed with his iPad drifting back off to sleep. Hopefully he stays that way.

04/11/2021

I seriously hate having to talk to Hematology Oncology. It always gives me high anxiety. But Beckett needs to be seen there so we can discuss his risks and prevention for his future. I don’t know if I ever posted this, but his Whole Exome Sequencing showed that he shares the MLH1 gene with me that’s associated with Lynch Syndrome. This means, like me, he is highly susceptible to a variety of cancers. His geneticist offered the referral so we can get all the info we need to be prepared in case something happens.

07/10/2021

I talked to the kids Geneticist today. They got the results from Beckett’s Whole Exome Sequencing. I have a virtual appointment next week to get the full results! To say I’m anxious is an understatement. Do we finally have an answer after several years???

05/10/2021

These are our zebras.

Bella is 11. She was just diagnosed with Eosinophilic Esophagitis. EoE is a chronic immune system disease that has identical symptoms to GERD, like trouble swallowing and chest pain. It happens when white blood cells, called eosinophils, build up in your esophagus, the tube that connects your mouth to your stomach.

Elliot (2), W***y (14 and my bonus son), and Beckett (4) all share a rare connective tissue disorder. We have been working with genetics for years to discover which one. We are eagerly awaiting the results from a Whole Genome Sequencing that was ordered on Beckett. The test was sent in back in July and they expect results sometime this month.

05/10/2021

Facebook would not allow me to change the name of my other page that I initially created for Beckett’s medical journey. So I decided to create a new page to reflect all of my children since they all have something rare. I hope you’ll join us on this new page!

05/10/2021