When I was 29 weeks pregnant with Kason, we went in to have a 4D ultrasound of our sweet baby. The ultrasound tech noticed something was a little different about his brain. She contacted our OB/GYN & we were seen by him the very next day. We were then told that something was very “wrong” with Kason although we do not use that term. We were referred to many specialists & were seen every week until the week Kason was born. Seeing him every week was a blessing!
At 33 weeks, we were advised to terminate because Kason would not survive birth; “continuing the pregnancy would be putting myself at an unnecessary risk”. We declined that “advice” & continued our pregnancy. At 39 weeks & 6 days, December 19th, 2016, we welcomed our absolutely perfect baby boy into this world. He was born seizing which scared everyone beyond belief. We spent a week in Arkansas Children’s Hospital following his birth just as a precautionary measure.
On March 8th, 2017, he had a breath holding spell at home & held his breath so long he passed out. My husband performed CPR & was able to resuscitate him while I was on the phone with 911. Although his first year of life was the absolute best, we lived every single day not knowing what to expect.
Shortly after his 1st birthday, the seizures returned & we have battled them since.
In July of 2018, Kason had an 11 minute seizure which was followed by a swallow study not even 8 hours later. We KNEW he was going to fail it. Of course, the doctors told us we couldn’t leave the hospital until Kason had a feeding tube. So, we left with a G-tube.
In February 2019, we finally got our GRIN1 diagnosis!! A HUGE weight was immediately lifted off our shoulders. Until that moment, we had no idea what to expect as far as life expectancy. We had no idea that our baby was expected to live a long life!
During his time we had also begun battling weight loss. Kason would vomit all of his feedings, all day every day. He lost 8 pounds in a year.
In July of 2019, Kason had vomited his feeding for the last time. He came home from daycare & I noticed he just wasn’t breathing right. So we took him to our closest emergency room & left in a helicopter (for the 6th time) & on a ventilator. We were so terrified that Kason wasn’t going to be strong enough to come off the vent. Every time we have to go to a hospital other than Children’s, I truly believe the doctors and nurses get scared of him because he is so medically complex. After 8 days of being on the ventilator Kason was finally stable enough to try to come off the ventilator!! He did SO great & shocked us all with the most perfect smile!!
While we were in-patient from July 22nd-August 23rd, Kason got a new GJ-tube. Since getting his GJ-tube, he has gained almost ALL of his weight back!!
Despite all this baby has been through, he is the happiest baby I have ever seen in my life! He has never let any of his challenges bring him down. This past week, October 4th, 2019, we were finally approved for CBD oil!! We are SO hopeful that this will help us control his seizures better.