I’m a mom/wife/sister/friend/aunt/daughter/niece/granddaughter whose life has been turned upside down.
Quinlan was born on August 29, 2014. After a normal (painful) labor, he seemed to be relatively healthy, except for tense muscle tone in his extremities. At one day old we were transferred to a hospital in Boston to do an MRI of his brain because of this. After a couple days in the NICU, they determined there was nothing major going on and we were on our way home. Early intervention started to come and get him stretched out, however, we soon realized he was a bit developmentally delayed and he had microcephaly (a small head).
He experienced his first (known) seizure on New Year’s Eve 2014. This lead to 28 days at Boston Children’s Hospital where he was started on 3 seizure medications and got a feeding tube. We came home for 16 days when he got RSV (a respitory virus) and it was back to Children’s. After spending another 9 months in the hospital with more seizures, more added seizure meds, respitory issues, a g-tube placed (a feeding tube directly into his stomach), a trach, continued developmental delays, body temperature fluctuations, and too many pokes and prodes to count, my son was diagnosed with a very rare genetic disorder with no cure and, at the time, little to no research available. This disorder is a mutation on the Brat1 gene. Last I heard, there were just over 20 now diagnosed, with the number rising. We have decided to donate Quinlan’s brain to research in hopes of this disorder being cured or at least managed. Because my husband and I are both carriers of this genetic mutation, there is a 25% chance that each of our children will have this disorder (the only part of science I ever remembered from high school was the punnet square, which comes in handy when understanding this aspect of genetics!)
On November 12, 2015 we were able to bring my son home again and he was able to live with us for over a year until his passing, suddenly, on January 30, 2017 at the age of 2 and a half.
Our journey through this new “abnormal” life involving doctors, nurses, and medical terminology (which quickly become part of our daily vocabulary) has been going on for a while, and will continue even now. We’re going through a lot, everything that comes with the ups and downs of the last 3 years…anxiety, depression, grief, PTSD (my “chill pills”, as I like to call them, have been a saving grace!) IVF with PGD is in our near future and I know that will bring a whole other bag of emotions (just wait for posts while I’m jacked up on hormones….those should be quite interesting! I’ll warn you now.)
I enjoy talking about my son. Sometimes it’s easier than others…sometimes I laugh and smile, other times I cry and can’t speak. I never want to shy away from sharing what my husband, Bear, and I are going through which is why I wanted to start this blog. It may be a nice venting session!
So, you may laugh, you may cry, you may yawn. But as long as you have some sort of feeling, I’ll be grateful.
UPDATE: We welcomed a perfect baby boy the beginning of December thanks to the miracle of IVF and genetics testing. Bring on the dirty diapers, spit up, and getting peed on. Oh, how I’ve missed these days! I know his big brother has been watching over him during this process and definitely had a hand in making sure he was as perfect as can be. After all, he looks just like his big brother!