Grayson Robert Baker was born full term, at 37 weeks, 5 days gestation on September 22, 2010. The only issue I had in pregnancy was from 35 weeks on, I measured several weeks behind. My belly was small, and a growth ultrasound revealed Grayson was small, but no other issues were found. Labor was induced several hours after my water broke. I had a relatively easy vaginal delivery, with an epidural- Grayson was born 5 pounds, 7 ounces, and somewhere between 15 and 19 inches (because every nurse that measured him had a different number those first few weeks).
Grayson was sleepy, sleepy, sleepy those first few days- I simply could not keep him awake to eat. He was hospitalized for almost a week at 5 days old due to dehydration and hypothermia. At his 5 day old doctors appointment his weight was down to 4 pounds, 9 ounces and his temperature was 94.9. Although we didn’t know it at the time, and neither did any doctor, this was most likely his first metabolic crisis.
When Grayson was 3 months old, I had a conversation with our pediatrician about Grayson’s eyes. He wasn’t tracking or grabbing at objects with his hands. She referred us to an opthamologist, who pointed out Grayson’s nystagmus (side to side eye movements) and discovered his optic nerves were very small. He diagnosed him as legally blind, and ordered an MRI of his brain to see if there were any other issues. The MRI revealed a very thin corpus collosum, the band of nerves that connects the right and left hemispheres of the brain, and delayed myelin maturation. We were referred to endocrinology, who later refused to see Grayson because the bloodwork that was ordered after the MRI came back “normal”.
Of course, we knew that our child was not “normal”. By this time we had started therapy through ECI and it became obvious that Grayson was not meeting his milestones. To this day, he cannot sit up, crawl, walk, or talk. At the recommendation of our OT, we made an appointment with a pediatric neurologist, which was one of the best decisions we could have made. The neurologist was very aggressive, and although after every appointment we left with another order for bloodwork, we are so grateful that he has pushed so hard for answers. One of the blood tests he ordered was for lactic and pyruvic acid, which both came back high. High levels of these are markers for Mitochondrial Disease.
Grayson had his first seizure exactly 1 week after his first birthday. It was the scariest moment of my life- I thought he was dying. I called 911 and he was taken to the ER. Since then, he has been hospitalized and ridden in several ambulances due to seizures that became more frequent and serious. After several years, we finally found the right combination of seizure medications and G’s most recent seizure was on Valentines Day of 2014. We continue to pray daily that he can remain seizure-free.
From the time he was born, Grayson has had a lot of trouble eating and gaining weight. He was never that interested in his bottles, and would never drink more than 3 oz. at a time. We upped the caloric concentration of his formula hoping that would help him gain weight, but we didn’t have much success. Solids were also a struggle. In October of 2011, Grayson started vomiting many times a day- violent, projectile vomit. He was hospitalized for 9 days, diagnosed failure to thrive and with delayed gastric emptying, and was put on an NG feeding tube. He had his NG tube for 7 weeks, and then had surgery to get his G-tube. In the fall of 2012, the vomiting started again, so he had surgery to switch to a GJ tube. Currently, he is 100% tube fed, and eats and drinks nothing by mouth.
We saw a geneticist in November 2011, who also suspected Mitochondrial Disease. He ordered a muscle biopsy. Grayson had the surgery in January 2012. After we got the results of the surgery we saw a Mitochondrial Disease specialist who diagnosed him with Mito on April 20, 2012.
In May of 2012, Grayson went under anesthesia for another MRI, a spinal tap, echo, and EKG. At the time, we were also waiting for results from genetic testing. Our Mito specialist went on maternity leave in the summer and we had to reschedule our appointment with her to get the results of the testing. We finally saw her on September 11, 2012, where we got the devastating news that Grayson has Leigh Syndrome. Leigh’s is a progressive, fatal form of Mitochondrial Disease that has no treatment or cure. To read more about that day, click here.
Grayson’s list of issues is long- vision impairment, developmental delays, muscle weakness, seizures, gastrointestinal problems, and speech delay. I think he now has more specialists than I have fingers. His diagnosis of Leigh Syndrome is devastating, but we will not let it devastate our son or our family. Grayson is pure joy, and he is so much more than his diagnosis and his health issues. He has an infectious giggle, loves to cuddle and swing at the park, adores music, and we could not love him more.
I know is just the beginning of Grayson’s story…God is going to do amazing things through this little boy.