Neurology Appointment

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!
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7 thoughts on “Neurology Appointment

  1. Look at those feet! And such a cute smile! I am so glad to hear that you found a good doctor. I will continue to pray for you and Grayson as you go through all of this. You are an amazing momma, and Grayson is blessed to have you!

  2. i'm glad to hear about this new very competent-sounding doctor. hopefully this will open some doors as far as finding answers and finding what will help grayson the most. sorry bout your teacher friend 😦

  3. Elizabeth, I am so sorry you guys are going through this! My heart just breaks for you. I can't imagine a worse anxiety. You guys are infinitely in my prayers. Give that sweet baby a hug from me and Larkin!As a side note, L wore that shirt today too, and was also rocking the drool stain. Our boys are such slobber monsters!

  4. Finally – a doctor who is taking you seriously. I know you didn't get news that you wanted to hear, but at least you're finally getting some answers!By the way, I love that cute little outfit. ha! Tell him that I think he looks handsome, even with the drool. And what perfect matching shorts. Such a stylish boy, thanks to his mom! Why can't we style ourselves as easily as we can style our children? ha!

  5. So wonderful to hear that you have found a great doctor who is listening and you clicked with. It really helps, and even more so that he has connections and can get you seen by others. This may be a long road, but looks like we are finally on the right path. Good for you for your persistence. We will continue to think good thoughts and send your way.ADORABLE pic, super duper cute!!! Such a big boy!!

  6. Oh Elizabeth. I'm so glad that you've finally found a nice and helpful doctor to answer *some* questions. I can't imagine how hard all this must be for you guys, but we are praying for you and thinking of you lots. You are doing such a great job and we are so proud of you. Grayson looks ADORABLE in that outfit! I love him! he really is getting big : ) Thanks for keeping us updated, love you lots xxx

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