I feel as though not much has happened since my last post, but thinking back to November 4th, lots of stuff has happened. Derek has just completed his first two classes of his ABA certificate with a 4.0 GPA and I am still addicted to caffeine.
Greyson had a reevaluation in late November for his early intervention services and it was reported that he is functioning at the level of a ten-month-old baby. Imagine having a ten-month-old baby that is mobile….and has just about all of his teeth. Yikes.
It was recommended that we continue his current services until the spring, when we will begin the transition into the IU-13 preschool, particularly the Verbal Behavior (VB) classroom. We were also seen for a post-EEG appointment with Dr. Stein (the local neurologist), and he increased Greyson’s meds and added Cipro, an antihistamine proven to reduce migraine headaches. Until recently, I felt as though the medications prescribed were really helping. Now I can’t tell if the meds need adjusted again or if Greyson is just being difficult in general. Even as I write this, he has just been given his meds and a dose of melatonin. He put Derek and I through a hunger strike due to (what we think) is a sensory issue and has had a regression in his sleep. Greyson not sleeping means us not sleeping.
We saw Dr. Comi in November, which prompted an appointment with a neurogenetic specialist. We had this appointment today in Baltimore at the Kennedy Krieger Institute. After going over family history, questions and concerns, Derek and I had a DNA sample taken via two cheek swabs. Greyson had blood drawn to compare and contrast the chromosomal makeup and genetic map for some more possible answers into his brain issues.
Currently the things we DO know are:
1. Greyson has autism
2. Greyson is currently characterized as being “nonverbal”
3. He has a white matter brain disease
4. He has epilepsy, primarily impacting him while he’s asleep
5. His previous genetic testing (snippet array) showed no abnormalities, but the testing was part of a research study and may not be totally accurate
6. He tested negative for fragile X syndrome
Things we still do not know, but are hoping to have answers to are:
1. What is the underlying cause of Greyson’s autism
2. What are the chances of him being verbal someday
3. What caused the brain disease
4. How do we cure the brain disease
5. What can we do now to help Greyson in the future
We have been searching for the answers to our questions for 407 days and unfortunately do not see them being answered for awhile yet. We have therapies and services in place for G and we have seen him grow a bit since starting them last year, but I still can’t help but feel as though we are still missing something.
My first question to the genetic specialist was “what will this testing show us that we don’t already know? And how will it impact us as a family?” Of course every case is different, but currently there is a 40% chance of the lab finding an issue with Greyson’s genes. If they would find something, Roslynn potentially would be tested as well to see if she inherited anything from Derek or I. Still, that means that there are still more cases in which the doctors don’t find anything, opposed to when they do find something. Makes being optimistic kinda hard, though we will go through with the testing. Derek and I have both discussed this and have agreed that this will be the last round of genetic testing that we will put G and ourselves through. If the results are inconclusive, we will wait a few years and proceed with finding answers.
We also realized that we may never have the answers to our questions. We may never know why Greyson has so many delays and abnormal MRIs and EEGs. Though we would love to have answers so we can better prepare him and ourselves for his future, realistically we must realize that it could potentially never happen. For now, my New Year’s resolution is to stop living in the past and to stop dwelling on our future. There is nothing we could or would have done differently during pregnancy that would have changed the outcomes and we don’t know what the future holds. We don’t know what medicine and science will look like tomorrow, let alone 10+ years from now, so we must stop dreading it and hiding Greyson from the world.
So, as we close another year, perhaps the most difficult year of my 29 years thus far, we will not look at this time and wish we could change the past. We will live for today and celebrate the little things in life, especially Greyson’s smallest successes.
Ps- Derek might kill me for posting this, but look how happy G looks. Melts my ❤️.