This morning, Grayson had his appointment with the pediatric neurologist. The doctor was quirky, funny and smart, and I liked him. He examined Grayson head to toe, which is what I have wanted for a doctor to do since the beginning. When I mentioned that Texas Children’s endocrinology wouldn’t see him because of his ‘normal’ blood results, his response was, “He’s a person, not a blood test.” I was sold.
We were with the doctor for quite awhile, and he explained G’s MRI report. Basically, the MRI showed that his brain is lacking in white matter, which carries the messages. This explains a lot- his delays, his vision impairment, and his trouble adjusting to eating solids.
A few things we learned:
- G still has newborn reflexes he should have “lost” months ago
- G is at risk for seizures. He may be having little seizures already that we haven’t recognized. Scary.We are having an EEG of his brain on Monday.
- His vision impairment is not the cause of any of his delays; it is another symptom of his neurological issues
- G’s tiny head circumference indicates his brain is not growing properly
- The doctor referred us to an endocrinologist that will definitely see us
- The doctor ordered more blood tests, including chromosomal testing
- G will have another MRI sometime between 10 months and 2 years.
I asked him if G’s condition had a name. His answer: “Grayson Baker Syndrome”. Basically we won’t know how all these puzzle pieces fit together in a month, or even in a year. It’s going to be a long journey and there’s no way right now to predict what the future holds.
It’s scary, overwhelming, and sad. I’m exhausted. Then I got the bad news that my good friend/teaching partner was laid off today. I am heartbroken for her.
As hard as all this is, I’m so grateful we are finally getting some answers and have found a specialist who is proactive and is really trying to uncover everything he can about Grayson.
Rebecca, per your request, here’s a really cute picture!
|My drooling is out of control!|