Happy Mama Day!

Steve here - in honor of Mothers' Day I'm finally going to make my long-overdue contribution to this blog. I've been trying to write my first post for months and haven't been able to come up with the right topic or words, so I figured that this would be the perfect opportunity to share a... Continue Reading →

One Week Left!

Thank you SO much to everyone who has ordered shirts and donated so far! =D For those who are interested and haven't ordered, there is one week left to order shirts. (Last day is April 21.) To date, we have sold over 240 shirts and raised over $11k toward Emmett's PIGA research projects! (Hurray!) Here's... Continue Reading →

Emmett’s Turning Two!

Next week, Emmett turns two. I still remember the day Emmett was born. I went in for a routine doctor’s visit at 38 weeks, 3 days, but the doctor thought he may’ve seen meconium in my amniotic fluid, so recommended I have my c-section that very day. “Are you ready to have the baby today?”... Continue Reading →

Our First CDG Conference

Last Thursday, we packed up what felt like all our earthly belongings and headed down the coast to San Diego for the 2018 SBP Rare Disease Day Symposium and CDG Family Conference. (I say that because our car was packed to the brim with all of Emmett's stuff, and he comes with A LOT of... Continue Reading →

Days 2 & 3 at NIH

We started off the day yesterday with another blood draw – this one for something called a flow cytometry test they only process once a week. (We did a flow cytometry test when we went to Seattle Children’s Hospital, but the results came back inconclusive, so we’re hoping the NIH’s ability to process the blood... Continue Reading →

Visiting Seattle Children’s Hospital

Last month, we packed up and took a trip to Seattle to see Dr. Christina Lam, who is a biochemical geneticist at the Seattle Children’s Hospital. She is also a specialist in CDGs (Congenital Disorders of Glycosylation) which we’ve found to be the broader category of where Emmett’s PIGA gene mutation falls under. CDGs are... Continue Reading →

Back in the hospital

At 12:30 p.m. last Thursday, Steve made an appointment to bring Emmett into UCLA Mattel’s urgent care. We were there by 1:30 p.m. and admitted into the ER by 2 p.m. Emmett hadn’t slept at all the night before and started to spit up whenever we fed him. He also started to get frequent episodes... Continue Reading →

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