We had our appointment with Dr. McGlothlin at Cook Children’s Neurology to review the MRI scans and talk about Jayna’s future on Thursday afternoon. It was a very enlightening visit to say the very least.
He started off by saying that Jayna not only has CACC (Complete Agenesis of the Corpus Callosum), but other brain defects that make it almost impossible to believe that she’s walking, talking, and pretty much your normal 6-year old child. He said that she has defied all scientific odds…and used her MRI scans and story in a Child Neurology Conference he spoke at last week. None of the doctors, neuropsychologists believed she was normal either. In fact, the 2 neuropsychologists that we’re to see at Cook’s don’t believe him and want to see her for themselves.
Jayna not only has CACC (Complete Agenesis of the Corpus Callosum), but she has Epilepsy and quite possibly ADHD. He is NOT going to medicate her just yet because he doesn’t believe that’s necessary. If…when…she has another seizure (which is quite possible) she will be medicated for seizure control. But, he also gave us medication to give her if it goes over 5 minutes to help pull her out of it (valum).
What is so amazing is that her brain, according to the MRI scans (over 560 pictures taken) is deformed…showing the deformaties quite clearly. We are in the process of ordering the scans on CD so we can keep track of them as well as see them again when the “shock and awe” wears off. Basically, if you were to stand on a chair and look down at Jayna while she stands looking straight ahead…not only would you see her cute little head, but inside you’d see something that looks like a pie split in 3rds…
Now…the PINK area is the cerebellum. That part of Jayna’s brain is normal to the best of their ability to see.
The purple is the LEFT BRAIN and the red is the RIGHT BRAIN.
There are 2 different types of “brain matter” in your head. You have WHITE MATTER which are the nerves that run throughout your brain that are the communicators. You also have GRAY MATTER in which I am still learning about, but if you wanna know more, just Google it (www.google.com). HA!
Since Jayna doesn’t have a Corpus Callosum, the gray matter basically formed wherever it wanted…incroaching on the white matter’s pathways. And…quite a large portion too.
Also, with the Corpus Callosum there are 2 “air cell” pockets at the base of the purple/white zones. People with ACC have larger air cells than “normal” people do. Theirs are quite large and form a tear-shaped pocket. Jayna’s are quite large pockets (larger than what normal people with ACC have) which is very abnormal.
There are other smaller deformaties…however, these I’ve just posted are what are notable defects including the picture he showed us on various levels proving that there is indeed NO Corpus Callosum.
Dr. McGlothlin said that he is in SHOCK that Jayna is so normal and high functioning because according to her MRI scans, she should be MAJORLY handicapped and mentally challenged (to use a better term). He said that if we brought Jayna to him when she was 1 and had her first seizure, he would have been able to do the MRI then and tell us much sooner that she was ACC, however, his prognosis would have not been this amazing. He would have told us to prepare for her to never walk, talk, or carry on as a normal child would. As I’ve stated before, none of the doctors or neuropsycholgists believe him that she is so normal and high functioning. He said Jayna is a MIRACLE BABY and that’s not putting it mildly either.
That’s the hand of MY GOD.
Now…he said he’d give us his opinion on the way he sees Jayna’s eduction and development, however, Jayna just defied all odds and so he has no proof that what he said will come to fruition…however, this is what we are to look for. She’s already defied Science…she she can do it again…AGAIN…THAT’S THE HAND OF MY GOD!!
- He sees Jayna’s handwriting as that of an CACC child…and to be prepared that it may not get better than it is now. (However, he could be proved wrong!!).
- He sees Jayna as reaching an educational plateau. Not sure when or where that will happen…4th grade, 6th grade…college…etc. Jayna’s already proving to them that they truly don’t know as much about the brain as they thought…and Jayna’s scans are already showing doctors that she is VERY much a miracle!!
- He sees Jayna as having another seizure (not if…WHEN) and at that time, she’ll be put on medication.
- If she continues to develop like she is now, she’ll be living on her own and be a productive member of society…quite possibly having her own children one day (not sure if genetic testing will be available for that).
So…as you can see…there is a LOT to learn about our precious one…and the thing to remember…for ALL to remember is that she’s still the same Jayna Sue you’ve always known! She’s an amazing little girl and God has some MIGHTY things planned for her life. We can already see the Hand of God on her and have personally seen what she can do that defies all the doctors have predicted.
This is just the beginning of the journey we face. We’re to never take one minute for granted…for she is a blessing and a gift of our Lord. She’s our miracle baby girl!!!!!
So, the next step is to contact our Neurophychologist to set an appointment for further testing. We are to also contact our Pediatric Eye Associates to schedule an appointment with our Opthamologist. In December, we have an appointment with our Ear, Nose & Throat doctor to have a hearing test and exam. We have to keep up on the hearing and eyes because children with ACC or CACC (Jayna) will most likely have issues with both.
Thank you for your continued prayers for Jayna and our family. This wasn’t easy news to hear, however, it’s really not as bad as it could be! Jayna’s so healthy and smart and fun…and she truly is a blessing!!!!
We usually go out for dinner on Friday nights. It’s a night to give me a break from the kitchen. We decided to go to our usual place…Cafe Pulido’s in Arlington. The owner, George Pulido, has become a very dear friend to our family’s. The girls call him "George of the Jungle" and his girl friend, Petra…or as the girls call her, "Aunt Peetie" usually serves us if she’s not swamped already!
